MIAMI UNIVERSITY The Graduate School
Certificate for Approving the Dissertation
We hereby approve the Dissertation
of
Samuel M. Mwangi
Candidate for the Degree:
Doctor of Philosophy
Suzanne R. Kunkel Director
Robert A. Applebaum Reader
J. Scott Brown Reader
Jennifer R. Bulanda Reader
Cameron Hay-Rollins Graduate School Representative
i
ABSTRACT
DEVELOPMENT OF PALLIATIVE CARE AROUND THE WORLD
by Samuel M. Mwangi
Palliative care has grown enormously across the world since the establishment of first modern hospice by Cecily Saunders in the United Kingdom in late 1960s. Two decades later, in 1986, the WHO developed the first definition of palliative care. Subsequent revisions were done in 1996 and 2002 to reflect the increasing need for comprehensive palliative care. In 1990, the WHO pioneered the Public Health Strategy, a model aimed at helping countries integrate palliative care into their healthcare systems. Partly as a result of the WHO leadership, palliative care has grown tremendously. Other factors have contributed to this growth as well. However, there has been little systematic documentation and analysis of this growth, or of the current status of palliative care worldwide. This project employed a mixed methods approach to explore the underlying frameworks and concepts for palliative care standards in different countries and to investigate the salient factors associated with growth of palliative care around the world. Findings from qualitative analysis suggested that the ―primary domains‖ framework (comprising physical, psychological, social, and spiritual), and operationalized from the WHO‘s definition features prominently in standards addressing palliative care at the micro-level (i.e., patients/families) and meso-level (i.e., facilities/other care settings). The study also found that the importance of the domains enables delivery of comprehensive services by multidisciplinary staff. The quantitative study employed the Public Health Strategy to examine the salient factors associated with the growth of palliative care. Both population aging (as a risk factor for chronic illnesses) and adequate health care personnel have led to growth of palliative care services. HIV- mortality is another predictor of the existence of palliative care; this pattern was typical in sub- Saharan African countries. These two findings (the role of population aging and an adequate health care workforce on one hand, and the role of HIV on the other) suggest a developed/developing nation divide in the factors that underlie the evolution of palliative care. In more developed nations, palliative care is correlated with well-developed health care systems ii
and increasing prevalence of chronic diseases among aging populations; in developing nations, the emergence of palliative care is associated with HIV-mortality.
iii
DEVELOPMENT OF PALLIATIVE CARE AROUND THE WORLD
A DISSERTATION
Submitted to the Faculty of
Miami University in partial
fulfillment of the requirements
for degree of
Doctor of Philosophy
Department of Sociology and Gerontology
by
Samuel M. Mwangi Miami University
Oxford, Ohio
2011
Dissertation Director: Dr. Suzanne R. Kunkel
i
Table of contents
Table of contents ...... i
List of Tables ...... vi
List of Figures ...... vii
List of abbreviations ...... viii
List of Appendices ...... ix
Dedication ...... x
Acknowledgement ...... xi
CHAPTER ONE ...... 1
INTRODUCTION AND BACKGROUND LITERATURE ...... 1 Introduction ...... 1
International growth of palliative care ...... 2
Reasons for the growth palliative care worldwide ...... 9
What is palliative care? ...... 13
Geographical variations in definitions ...... 15
Models for delivery of palliative care ...... 18
Importance of studying palliative care from a global perspective ...... 20
Summary ...... 21
CHAPTER TWO ...... 25
STANDARDS AND GUIDELINES FOR PALLIATIVE CARE ...... 25 Introduction ...... 25
Complex situations as challenges to developing standards ...... 26
Establishing standards: process or outcome? ...... 27
Is it palliative care standards or clinical guidelines? ...... 31
Setting universal standards...... 32
The Guiding Frameworks ...... 33
ii
Domains of palliative care ...... 33
Physical aspects ...... 34
Social aspects ...... 35
Psychological aspects ...... 35
Spiritual aspects ...... 36
The Public Health Strategy for palliative care ...... 38
Methodology ...... 40
Data sources ...... 40
Data analysis ...... 41
Results and discussion ...... 42
Authority developing standards ...... 43
Primary domains of palliative care ...... 47
Auxiliary domains of palliative care ...... 51
Components of Public Health Strategy ...... 55
Conclusions and implications ...... 59
Refining the frameworks...... 65
Methodological limitations ...... 67
Recommendations for creating future standards ...... 69
Recommendations for future research on standards ...... 69
CHAPTER THREE ...... 71
SALIENT FACTORS ASSOCIATED WITH GROWTH OF PALLIATIVE CARE SERVICES ...... 71 Introduction ...... 71
Factors associated with the development of health care systems ...... 74
Revisiting the Public Health Strategy framework ...... 77
Methods...... 78
Data sources ...... 79
The number of countries in this study ...... 79
iii
Standardization of datasets ...... 80
Merging and cleaning the datasets...... 82
Data recoding and missing data strategy ...... 83
Measures ...... 84
Dependent variable ...... 84
Independent variables ...... 85
Disease demographics measures ...... 85
Socioeconomics and demographics measures ...... 87
Health care system measures ...... 89
Data analysis ...... 90
Results ...... 91
Descriptive statistics for disease demographics ...... 91
Descriptive statistics for Socioeconomics and demographics measures ...... 93
Descriptive statistics for health care system measures ...... 94 Bivariate statistical analyses: chi-square for categorical independent variables and t-tests for continuous independent variables ...... 96
Chi-square test statistic for the categorical variables ...... 97
T-test for continuous variables ...... 99
Multivariate statistical analysis: logistic regression models ...... 102
The Disease Demographics Model ...... 103
The Socioeconomics and Demographics Model ...... 105
Proxy measures for cultural and political factors ...... 107
Health Care System Model ...... 107
The final model: salient predictors of presence of palliative care ...... 110
Discussion ...... 114
Salient factors for establishment and development of palliative care ...... 116
Health care expenditure ...... 116
iv
Population aging ...... 118
Morbidity and mortality associated with palliatable diseases ...... 119
Risk factors associated with palliatable diseases ...... 120
Human resources for health care ...... 121
Factors internal and external to a country ...... 122
Conclusion and implications ...... 123
Limitations ...... 125
Directions for future research on factors for palliative care growth ...... 128
CHAPTER FOUR ...... 130
CONCLUSION ...... 130 The current status of palliative care at micro and macro levels ...... 137
Importance of the current study...... 139
Contribution to the palliative care literature ...... 140
Limitations and directions for future research ...... 142
Concluding remarks ...... 145
References ...... 154
List of Tables
Table 1.1: Number of people per palliative care program ...... 3
Table 1.2: Distribution of countries by the level of palliative care development ...... 5
Table 1.3: Descriptions for levels of palliative care development ...... 7
Table 2.1: Authority responsible for developing standards...... 44
Table 2.2: Primary domains of palliative care ...... 48
Table 2.3: Auxcillary domains of palliative care ...... 52
Table 2.4: Components of Public Health Strategy ...... 56
Table 3.1: Data sources for different variables and years when collected ...... 81
Table 3.2: Descriptive Statistics for Disease Demographics Indicators ...... 91
Table 3.3: Descriptive Statistics for Socioeconomics and Demographics Indicators ...... 94
Table 3.4: Descriptive Statistics for Healthcare Systems Indicators ...... 95
Table 3.5: Contingency table for presence/absence of palliative care by income levels ...... 96
Table 3.6: Chi-square table for Commonwealth membership and political/cultural influence..... 97
Table 3.7: Bivariate Statistics – t-test for continuous independent measures ...... 99
Table 3.8: Presence/absence of Palliative Care Logit Model for Disease Demographics ...... 103 Table 3.9: Presence/absence of Palliative Care Logit Model for Socioeconomics and Demographics ...... 105
Table 3.10: Presence/absence of Palliative Care Logit Model for Healthcare Systems ...... 108 Table 3.11: Presence/absence of Palliative Care Logit Model for all significant variables in the previous models ...... 111
vi
List of Figures
Figure 1.1 Levels of palliative care development for all countries...... 6 Figure 2.1: Relationships between processes of standards development and care delivery and the expected outcomes ...... 28
Figure 2.2 Interrelationships between basic domains of palliative care ...... 37
Figure 2.3: The Conceptual Map for the WHO Public Health Strategy for Palliative Care ...... 38 Figure 3.1: Interrelationship between factors related to development of health and palliative care systems ...... 76
vii
List of abbreviations AAHPC Australia Association for Hospice and Palliative Care AAHPM American Academy of Hospice and Palliative Medicine AIDS Acquired Immunodeficiency Syndrome APCA African Palliative Care Association APHN Asia Pacific Hospice Palliative Care Network ART Anti-retroviral Therapy CAPC Center to Advance Palliative Care CDR Crude Death Rate CHPCA Canadian Hospice Palliative Care Association COHSASA Council for Health Service Accreditation of Southern Africa COPD Chronic Obstructive Pulmonary Disease CRS Catholic Relief Services EAPC European Association for Palliative Care ESO European Oncology School FHI Family Health International FHSSA Foundation for Hospice in Sub-Saharan Africa GDP Gross Domestic Product GNI Gross National Income HCA Hospice Care Africa HCK Hospice Care Kenya HDI Human Development Index HIV Human Immunodeficiency Virus HPCJ Hospice Palliative Care Japan IAHPC International Association for Hospice and Palliative Care IOELC International Observatory on End of Life Care JMA Japanese Medical Association JSPM Japanese Society of Palliative Medicine LAAPC Latin America Association for Palliative Care NCP National Consensus Project NGO Non-governmental Organizations NHPCO National Palliative and Palliative Care Association NHS National Health Service NICE National Institute of Clinical Excellence NQF National Quality Forum OSI Open Society Institute PCA Palliative Care Australia PEPFAR U.S. President‘s Plan for AIDS Relief PRIME Partnerships in Medical Education UN United Nations UNAIDS Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Program WB/WDI World Bank/World Development Indicators WHO World Health Organization WPCA Worldwide Palliative Care Alliance viii
List of Appendices
Appendix B – Typology descriptions for each level of palliative care development ...... 148
Appendix C – Countries under each level of palliative care development ...... 149
Appendix D – Palliative care definitions (different revised versions) ...... 151
Appendix E – Member states of Commonwealth of Nations ...... 152
Appendix F – Moderating effects of GDP per capita growth on alcohol consumption ...... 153
ix
Dedication Nî ngwenda wîra ûyû wa mathomo makwa ûkorwo nî wakîririkano kîa mûtigairî baba, Geoffrey Mwangi Munanu, urîa warî na ruo rûingî mûno kumana na mûrimû wa kansa ya prostrate ihinda rîrîa ndanjagia gûthoma cukuru-inî mûnene wa Miami University. Mbara îrîa warûire na ruo rûnene nî ciatûmire ngîe na wendo mûnene wa gwîka utuîria wa njîra cîa gûtungata arûaru aria mangîkorwo hatîka-inî ta îyo warî nayo mahinda-inî macîo makûrîkîrîria rûgendo rwa gûkû thî, tondû mathîna ma mîthemba îyo nî mongererekeire mûno mabûrûri-inî marîa ma utonga mûnyinyi. Ona gûtuîka gûtiakinyanîire ûkona wîra ûyû-rî, wîrutîri waku, cionereria ciaku, ona wendo waku mûnene nîcio îtumîte nginye haha ndî ûmûthî. Ngai arokûhurûkia thayû kûu matu- ini, Baba.
I want to dedicate this work to the memory of my late father, Geoffrey Mwangi Munanu who endured immense amount of pain from terminal prostate cancer and was utilizing palliative care services when I was starting my doctoral studies at Miami University. The battle you fought heightened my interest in palliative care especially in the developing world where the number of people undergoing similar experience as you is increasing. Although you never lived to see my final work, I will always remember and cherish your selflessness, guidance, and love that made me who I am today. May God rest your soul in heavenly peace, Dad.
x
Acknowledgement
I would like to sincerely thank all my dissertation committee members for support, guidance, thoughts, encouragement, feedbacks, suggestions, discussions, thought-provocations, time, and commitment towards my dissertation over the entire process. It was a journey that initially would have appeared untravelable, but you all guided me to get to the end. In particular, I thank my advisor, Dr. Suzanne Kunkel who we held innumerable discussions with me, reading earlier drafts, and provided feedback at every stage of this process. Dr. J. Scott Brown and Dr. Jennifer Bulanda provided guidance and advice on methods and interpretation of results. Dr. Robert Applebaum offered insights on subject matters of health and palliative care policy, and quality of life/quality of care. Dr. Cameron Hay-Rollins helped me think about the constructs of culture from within and outside. My appreciation also goes to all my family members for your prayers, love, support and encouragement. I will always offer the same in return in for your endeavors. I cannot forget to mention my great friend and colleague, Takashi Yamashita; we have traveled this journey together over the last four years, encouraging and supporting each other. Lastly, I thank all my friends in the U.S. and back in Kenya for maintaining the bond of friendship despite the long geographical separation while I was doing this work. I humbly say, ―God bless you all.‖
xi
CHAPTER ONE
INTRODUCTION AND BACKGROUND LITERATURE Introduction Palliative care has gained a growing acceptance over the past few decades as a model of care focused on relieving suffering and pain among patients faced with life-limiting and terminal illness (Clemens, et al., 2007; Jeffrey, 1995; Harding & Higginson, 2005; Watson, et al., 2009). The growth in the population living with chronic, debilitating and life-threatening illness and the expansion of the clinical subspecialty interested in effective approaches to the care of terminally and chronically ill patients contributed to the increasing prominence of the palliative care approach (Ferris, et al., 2002; National Consensus Project [NCP] for Quality Palliative Care, 2004). This model of terminal care is characterized by an increased awareness of the need to reduce pain and suffering for patients and their families. By its nature, palliative care is usually provided at the stage where the disease prognosis proves it to be incurable (Jeffrey, 1995). Since cure is not the goal, palliative care is oriented to the ultimate outcome of quality of life for the patients (Connor, 2009; Ferrell, et al., 2007; Jeffrey, 1995; Stjernsward, Foley & Ferris, 2007a; Watson, et al, 2005, 2009). Thus, palliative care is neither the care for the dying nor is it meant to prolong life (WHO, 2002). It is delivered by an interdisciplinary staff focusing on different facets of the care. Lack of clear definition of palliative care is problematic (Simpson & Pitorak, 1998). As a result, terms such as hospice care, palliative care, end-of-life care, continuing care, terminal care, thanatology, comfort care, and supportive care have found their place in the literature on care for the terminally ill patients (European Association of Palliative Care [EAPC], 2009; Simpson & Pitorak, 1998). Use of these terms typically reflects the organizations providing care, settings where care is provided and the services they provide. In a later discussion, some of these commonly used definitions will be explored. Importantly, some countries and regions have realized the need for a concrete approach to this philosophy of care so as to resolve the problems with definitions. For instance, in Canada, the convergence of both palliative care and hospice care has been recognized, and thus, this care is now widely known as hospice palliative care
1
(Canadian Hospice Palliative Care Association [CHPCA], 2002). In Europe, EAPC acknowledged the variety of terminologies used in 52 countries in the region. Palliative care grew from the work initiated by Cecily Saunders in the 1960s, which led to the evolution of the international hospice movement and subsequently developed into a medical subspecialty (Singer & Bowman, 2002). An increasing demand for a more holistic and integrated approach to health, illness, death and dying due to the rising cases of incurable and non-communicable illnesses has fueled this development. Further, the growth of palliative care is manifested in the emergence of diverse models of care adopted in many different cultural settings. The diverse models of palliative care services are geared towards the needs of the local people, culture and traditions and must be specified to the needs and perspectives of local context (Connor, 2009; Saunders & Kastenbaum, 1997). Thus, the creation of modern hospice has changed the ways palliative care is delivered. This approach to terminal care focuses on management of pain and other symptoms with an equal attention to matters of social, psychological and spiritual concerns (Clark, 2007; Saunders & Kastenbaum, 1997). It also involves the innovative science and art of caring for patients with advanced disease, thus increasing use of palliative care services worldwide. Some of palliative care services are integrated within the healthcare systems and others are freestanding. A range of factors such as social, demographic, political, economic and cultural have contributed to the establishment of palliative care services of one kind or another in different countries (Connor, 2009; Stjernsward & Clark, 2003). The questions that arise are: what is the current status of palliative care around the world and what has led to variations in the development of palliative care services in countries across the world? This project will attempt to investigate how these factors have contributed to the establishment, development and standardization of palliative care services globally.
International growth of palliative care The practice of palliative care is relatively new in many places, in others, it remains unknown (Wright, et al., 2006). However, after the initial start-up in the UK in 1967, hospice programs were established in North America within a decade after the initial establishment. The first hospice program appeared in the United States in the state of Connecticut in 1972 and in Canada in 1974 (Ferris, et al., 2002). This new concept of care for terminally ill patients spread 2
to other parts of the world outside North America and Europe after 1980 (Wilson & Kastenbaum, 1997). These widespread developments led to increasing models of care for patients facing life- limiting illnesses. As a result, the use of the terms ―hospice care‖, ―palliative care‖, and ―end-of- life‖ care became apparent and they have been used interchangeably in different parts of the world (Connor, 2009; Harding, et al., 2003). In this context, palliative care will be used to mean both end-of-life and hospice care. The practice of palliative care has been refined through research and disseminated through education, which led to establishment of St. Christopher‘s Hospice in the United Kingdom as a center of excellence for the emerging field of care (Clark, 2007). What initially started as a single institution in the United Kingdom over four decades ago has grown to an estimated 10,000 palliative care programs of one kind or another around the world (Connor, 2009; Wright, 2003). Of these 10,000 programs, the U.S. has about 3,300 programs (Connor, 2009; Wright et al, 2006), the highest number of services specifically for terminally ill patients in any single country. The United Kingdom, where the first modern hospice was established, comes second with close to 1,500 programs. Canada, France, and Poland have each around 500 hospice programs and Australia has 320 programs (Wright, et al., 2006). Surprisingly, two-thirds of all palliative care programs in the world (6,630 out 10,000), are found in only six countries. The number of people per service in the top six countries and the rest of the world are presented on Table 1.1 to illustrate the fact that only a few countries have greater number of services.
Table 1.1: Number of people per palliative care program Country No. of palliative Percent of Total Number of people care services all programs Population (2006) per program USA 3,300 33 301,579,895 91,388 UK 1,500 15 58,147,733 38,765 France 500 5 63,681,742 127,363 Poland 500 5 38,518,241 77,036 Canada 500 5 32,935,961 65,872 Australia 320 3.2 20,749,625 64,843 Rest of the world 3,380 33.8 6,107,958,758 1,807,088 Total (world) 10,000 100 6,623,571,955 2,272,355 Population based on the U.S. Census 2006 international data
The table shows the number people per service of palliative care. There is great variability as a result of variation in total populations across nations and regions. For instance,
3
the U.S. has a population of over 300 million and has the highest number of services. However, the number of people per service in U.S. is lower than that of France which has fewer services (i.e., less than one-fifth) but a much smaller population. These statistics do not paint a clear picture about the distribution of palliative care services in these two countries. Likewise, the per capita ratios of palliative care services in the top six countries and the rest of the world give an unclear depiction of the distribution of services per population. For instance, the number of services found in the U.S. is equivalent to the number of services found in nearly 200 nations of the world. Therefore, the figures shown on the table representing the number of people per palliative care program in the top six countries and the rest of the world per population clearly are not indicative of how palliative care services are distributed across the world. The lack of understanding on the distribution of these services agrees with an earlier discussion where Wright and colleagues (2006) noted that palliative care development is patchy across the world (see Figure 1.1. for the map of levels of palliative care development). A more robust statistic or measure using the number of the population in need of palliative care for each region and country would be more informative. This is because total population includes healthy individuals who may not require palliative care services, thus making the number of people per palliative care program in different parts of the world a crude measure of availability of services. The data on people needing palliative care services (i.e., advanced illness patients) are not available from the World Health Organization or any other source. However, Stjernsward and colleagues (2007) estimate that, on average, close to 100 million patients are in need of palliative care worldwide in any given year but country-level estimates are unavailable. Wright and colleagues (2006) maintains that although there are palliative care programs all over the world, they exist only in 115 countries. That is, the over 3,300 programs in the rest of the world are distributed in about half of the countries although at varying degrees of development according to Connor (2009). However, Praill and Pahl (2007) explain that this is an indication of positive growth in palliative care in the last four decades. Table 1.2 shows number of countries in each level of palliative care development according to a typology created by Wright and colleagues (2006). There are four levels of development of palliative care around the world. It should be noted that levels 1 and 2 are countries without palliative care at all while level 3 and 4 are countries with palliative care programs of one kind or the other. 4
Table 1.2: Distribution of countries by the level of palliative care development Level Level of development Number of countries Percentage 1 No palliative care activity 78 33 2 Capacity building 41 18 3 Localized provision 80 34 4 Approaching integration 35 15 Total 234 100
As shown in the table, about a third of the countries in the world (78 in number) have no evidence of palliative care or interest in developing the services. Thus, no palliative care activity exists in those countries. Another 41 countries have shown interest in developing palliative care programs but no services are known to exist. These countries are in the process of building capacity to initiate these programs having recognized the need for the patients and their families. Another one-third of the countries (80 in number) have palliative care services with localized provision that reaches a small proportion of the needy population. This provision varies from merely one service provider in the entire country to several providers in different parts of those countries (Connor, 2009). Interestingly, only 15 percent of all countries in the world have established palliative care to an extent of approaching integration with the health care systems. This was the highest level of development that Wright and colleagues (2006) identified. Surprisingly, there were low-income countries that have attained this level of palliative care development. These countries include Kenya, Uganda and South Africa. Such findings need to be interpreted with caution and also require further investigation. Some of the factors that have fueled the observed growth identified by Wright and colleagues (2006) are human development indices and high crude death rates. However, the simple correlations between levels of development and these factors are not adequately informative on factors which may have led to this development thus necessitating further investigation. As noted previously, the top six nations have nearly a third of all palliative care services worldwide. From this observation, it can be seen that these nations are not only approaching integration but their palliative care services are fully integrated into the health care systems. Therefore, an additional level of the fully integrated nations is suggested although it will have a small number of countries. Figure 1.1 shows the distribution of countries for each level.
5
Figure 1.1 Levels of palliative care development for all countries Source: Wright, et al. (2006) As seen in Figure 1.1, it is clear that most of the hospice services and programs are found in the developed regions of the world. The countries coded with green are found in North America, Western Europe, Australia and Japan and a few others in Asia, Latin America, and Africa. The localized provision is found in Asia, Latin America and also in part of Africa shown with color code red. However, as Connor (2009) affirms, there has been lack of palliative care in Africa, the Middle East, and South Asia. In most of these regions, there is patchy development of these services. Among the developed regions, it is only in Greenland where palliative care is not known to exist. Africa has the largest number of countries with no palliative care especially the western African nations which are ravaged with civil strife and political instability. Also in Africa, there are a larger number of countries in the capacity building stage. The observation of different levels in different countries of Africa can be attributed to the higher level of HIV/AIDS and also lacking resources to implement palliative care programs. As the map shows, Africa shares countries in all levels of the palliative care development continuum.
6
The detailed descriptions for each level are shown in Table 1.2 below, explaining the characteristics of each of them. These characteristics, developed by Wright and colleagues (2006), give the descriptions of the activities of palliative care at each level of development.
Table 1.3: Descriptions for levels of palliative care development 1 No known 2 Capacity building 3 Localized provision 4 Approaching activity integration
No palliative activity Presence of sensitized A range of capacity Capacity building and identified personnel building localized activities but also: activities but also: Expressions of interest with key organizations Critical mass of activists in Critical mass of activists (e.g., APCA, HAU, one or more locations countrywide IAHPC, Hospice Information) Service established – often Range of providers and linked to home care service types Links established international with service Local awareness/ support Broad awareness of providers palliative care Sources of funding Conference participation established (though may Measure of integration be heavily donor with mainstream service Visits to hospice-palliative dependent and relatively providers care organizations isolated from one another, with little impact on wider Impact on policy Education and training health policy) (visiting teams) Established education Morphine available centres External training courses undertaken Some training undertaken Academic links by the hospice Preparation of a strategy organization Research undertaken for service development National Association Lobbying: policymakers/ health ministries
Source: Wright, et al. (2006). Available: http://www.eolc-observatory.net/global_analysis/regions_main.htm
The first column of the table shows the countries with absolutely no palliative care activities, and thus, there are no characteristics to describe the current happenings in the palliative care arena. Most of these countries are in the low-income group according to World Bank classification and they have poorly designed health care systems. Also, countries that have had prolonged periods of war and political instability are found in this category. Wenk and
7
Bertolino (2007) also pointed out that these nations may be unaware of their need for palliative care. Examples of the countries that are still unaware of palliative care include: Afghanistan, Somalia, Ivory Coast (Wright and colleagues, 2006). Countries that are building capacity are said to have recognized the need but have not focused much on the solutions. The range of characteristics of the countries recognizing the need for palliative care include: sensitization of healthcare personnel, participation in international service provider conferences, creating strategies for initiating services, and lobbying government health agencies to establish these services. The interested parties in these countries have made contacts with teams from other countries through either regional associations (e.g., APCA) or exchange or fellowship programs. For instance, through the International Association for Hospice and Palliative Care (IAHPC)‘s travelling fellowships, fellows from Australia and Canada have traveled to Belize, Cambodia, and St. Lucia to provide training to these countries as they build capacity to establish palliative care (IAHPC, n.d). However, despites all these activities and interests, no services are currently available in these countries. Localized provision of palliative care indicates that countries in this group have established services but have not made them available to the entire population in need. Activities in this level mainly include availability of limited services, raised awareness and support locally, ensuring availability of drugs to manage the symptoms among patients and also sourcing funding to establish palliative care activities. In addition, countries in this group have established some training in palliative care. For instance, in Cameroon there has been importation of opioids without government restriction to control pain among cancer patients (African Palliative Care Association [APCA], n.d). Other examples include: providers in Scotland and The Netherlands have provided small grants for palliative care education and training in Zambia through the Partnerships in Medical Education (PRIME), and a team of British physicians involvement in palliative care education in small towns in Russia. These countries are in the localized provision level, and the examples provided reflect the characteristics of localized services. The highest level of palliative care development is where countries are approaching integration of palliative care services into the mainstream health care systems. The characteristics in these countries include existence of significant numbers of organizations providing palliative care services, implementation of national palliative care policy, and wide establishment of palliative care education and research. However, Wright and colleagues (2006) 8
descriptions in the highest category represent a broad range of characteristics that are easily identifiable in developed nations but also noticeably lacking in developing countries. For instance, in a country like Kenya, there is a national association and multiple providers but very low levels of education and research for palliative care. Thus, as noted earlier, the categorization of countries in the highest category represents a mix of scenarios and care should be taken in interpreting the characteristics of the highest group. Also, the services available in countries approaching integration may vary from one kind to another (Connor, 2009), to include stand alone facilities, home-based providers, community and faith-based providers, as well as providing this care within the hospitals. Also, these countries have established national associations to foster education, networking and support, setting palliative care standards, advocacy, research and publications (APCA, 2007). Wenk and Bertolino (2007) noted that even with scaling up of palliative care in the previous 20 years, groups 1, 2, and 3 are predominant in the bulk of countries.
Reasons for the growth palliative care worldwide The unprecedented growth of palliative care services in all regions of the world has been fueled by multiple factors. These range from aging of populations, advocacy through global summits and efforts by national associations for palliative care to the role of the WHO (McDermott, 2005). In addition, the international hospice movement and establishment of international organizations such as Worldwide Alliance of Palliative Care (WPCA) have fostered this growth. The desire to provide better care for the dying has also played a great part in development of palliative care programs in various parts of the world (Watson, et al., 2009). As a result, the development of the hospice movement has elicited the notion of good death although empirical evidence shows that the desired outcomes fall short of expectations. For instance, McNamara (2004) from her Australian fieldwork contends that the notion of good death from the Western perspective has been highly medicalized. As a result, the notion of good death has become inappropriate or changed altogether. Therefore, the growth of hospice and palliative care has been influenced by a number of reasons, which will be discussed in detail in this section. The growing health care needs of an aging population have led to the rising use of hospice and palliative care. That is, palliative care development has a niche in the health transition related to population and individual aging (Weeks, 2008). There are public health
9
challenges posed by the two major transitions: the demographic transition that have led to longevity revolution (Butler, 2008) and the epidemiologic transition leading to shifts in mortality from acute and infectious disease to mortality from non-communicable and degenerative diseases and occurring late in life (Omran, 1971, 2005; Rossignol, 2005). These transitions have matured in the developed regions of the world where there are significant proportions of older adults in the populations and the prevalence of non-communicable diseases is higher among older adults. According to the WHO (2003) World Health Report, 42 percent of the deaths occur after age 60 in developing nations compared to 78 percent in developed nations. Similarly, the risk of death at age 60 is 40 percent in developed nations compared to 60 percent in most developing regions and 70 percent in Africa. However, it should be noted that palliative care is not only for older populations. Terminal diseases affect people from across all age groups (i.e., pediatric palliative care and that for younger adults). For example, HIV/AIDS is progressive and at its terminal stage requires palliative care regardless of the patient‘s age but affects younger populations (Clemens, et al., 2007). Harding and Higginson (2005) maintained that the development of palliative care in sub-Saharan Africa has been as a result of HIV/AIDS. In Africa and elsewhere in developing regions, population aging and the higher prevalence of non- communicable diseases will catch up with the rest of regions in the next few decades. The interaction of demographic and epidemiological transitions has influenced the growth of palliative care. Thus, as Aboderin (2008) affirms, the challenges brought by chronic and degenerative illnesses among the elderly in the developing countries will raise the palliative and supportive care services for the older populations.
The need to alleviate pain and suffering for terminally ill patients has been recognized as a human right by the international palliative care community (Brennan, 2007), thus accelerating the growth of these services worldwide. Gwyther, Brennan and Harding (2009) further observed that the interaction between palliative care, public health and human rights disciplines is significant. In addition, care for the dying has been recognized as a public health issue (Gwyther & Krakauer, 2009; Gwyther, Brennan, & Harding, 2009). Thus, the recognition of palliative care as a human right and a public health issue has in part influenced the current status of palliative care. This recognition has been endorsed at various international conventions, which include the Cape Town Declaration of 2002; the Korean Declaration of 2005; the Joint
10
Declaration and Commitment on Palliative Care and Pain Treatment as Human Right of 2008; and the International Work Group at the European School of Oncology (Brennan, 2007). The countries‘ signatories to these declarations have in turn established services for patients faced with terminal illnesses. Gwyther, Brennan and Harding (2009) in addition state that this recognition has seen palliative care mature both as a medical-clinical subspecialty and as an academic discipline on a global scale. However, the maturing of palliative care as an academic discipline is contended given the number of academic programs globally (Ahmedzai, et al., 2004; Paice, et al., 2008). Nevertheless, Brennan (2007) asserts that the international palliative care community has supported the integration of palliative care education at all levels of the learning continuum from informal caregivers to health professionals and experts. The role of volunteering in hospices cannot be underrated for its impact on the growth of palliative care services across the globe. Volunteers provide support to specialized palliative care professionals to meet the ever-increasing needs of terminal care. Gwyther and Rawlinson (2007) ascertain that most hospices operate effectively with the help from volunteers who provide support to the palliative care teams. Clark, Wright and Hunt (2007) in their study on reviewing palliative care services in sub-Saharan Africa found that hospices for the most part rely on volunteers. Empirical studies also show that hospices benefit immensely by using volunteers (Addington-Hall and Karlsen, 2005; Claxton-Oldfield &Claxton-Oldfield, 2007). Further, it is argued that the future of palliative care services would greatly benefit from trained volunteers (Addington-Hall and Karlsen, 2005). As Webster, Lacey and Quine (2007) stated, palliative care has roots in the non-profit sector, and volunteering is widely used in the non-profit world. Therefore, volunteering is associated with the observed growth of palliative care since most of the palliative care is provided by not-for-profit organizations (Connor, et al., 2004). The WHO has been instrumental in influencing nations around the world to implement ways of alleviating suffering among terminally ill patients since the development of the WHO pain ladder (Watson, et al., 2009; WHO, 1986). As a result, many palliative care initiatives as a result of the WHO 1986 pain ladder framework for alleviating symptomatic pain associated with cancer has been extended other illness as HIV/AIDS, Alzheimer‘s disease, among others in countries worldwide. Physicians around the world have been using this ladder for the last 25 years and it is still effective in management of pain (Vargas-Schaffer, 2010). The first step was the establishment of the WHO Cancer Unit, which began to develop global initiatives to 11
advocate for pain relief and opioids availability (Sepulveda, et al., 2002; WHO, 1986, 2007). The initial focus was on cancer pain relief, which later conceived management of cancer pain and then spearheaded a comprehensive and integrated approach to palliative care. Several other achievements include the publication of guidelines available in several languages, which in turn accelerated the development of pain and symptom management worldwide (Sepulveda, et al., 2002). Later in 1986, the WHO formulated the first definition of palliative care which is broader in scope because it encompasses the management of symptoms and other aspects including social, emotional, and spiritual elements (Connor, 2009). As such, the WHO is among the international organizations that have fostered the development of palliative care, supplementing the earlier efforts of the international hospice movement spirited by the work of Cecily Saunders since 1980s. The WHO‘s role of advocating for palliative care services has created a global awareness. As a result, national, pan-national and international associations have been formed to advance the efforts initiated by the WHO. These associations include: Worldwide Palliative Care Alliance (WPCA); International Association for Hospice & Palliative Care (IAHPC); and several regional associations such as: African Palliative Care Association (APCA); Asia Pacific Hospice Palliative Care Network; European Association for Palliative Care (EAPC); and Latin America Association for Palliative Care (LAAPC) (Connor, 2009; Praill & Pahl, 2007). WPCA is an alliance of all regional, pan-national and national associations of palliative care. Since its formation in 2005, WPCA has been instrumental in creating global awareness which include regional and international conferences, training activities, sharing of information, practices and policies on palliative care needs. Also, there has been creation of World Hospice and Palliative Care Day, which is a day of awareness and fundraising activities to support global initiatives geared towards palliative care (Praill & Pahl, 2007). Improved communication technology has had its impact in the establishment of palliative care. As such, there has been easier access to information on best practices based on education and research. Connor (2009) acknowledges the important role that easier access to information through internet and other media (e.g., social media, print media) has catalyzed the number of services due to availability of information to help start programs. For instance, NHPCO has developed a toolkit that is freely accessible at their Website. National associations and individual hospices can obtain information for use in developing palliative care programs. Also, Help the 12
Hospice of UK developed a resource base to provide free hospice information where countries borrow to strengthen their palliative care activities and services. WPCA, a pan-national palliative care association and individual hospice Websites also contain resourceful information which is accessible and has been useful in the development of palliative care services. Lastly, the availability of funds to advance palliative care services has enabled development of programs in some regions of the world. There have been increased fundraising initiatives and activities across the world for palliative care in the last few years. For instance, Callaway and colleagues (2007) state that development of palliative care services in resource- poor nations has been supported by third-party donors and grant-makers. These efforts are complimented by non-governmental organizations fundraising and voluntary donations (Callaway, et al., 2007). Examples of the key donors include: Open Society Institute (OSI) that provides support to East Europe nations; Diana, Princess of Wales Memorial Fund; Hospice Care Africa (HCA); and NHPCO‘s Foundation for Hospice in Sub-Saharan Africa (FHSSA) provide funds to support palliative care growth in sub-Saharan Africa (Wright, 2003). The support to resource-poor settings also is provided in the form of expertise (i.e., volunteer doctors and nurses), drugs and equipment donation (Wright, 2003). Wright, Lynch and Clark (2008) broadly categorize the donor organizations as multilateral (e.g., World Bank), bilateral (e.g., USAID), humanitarian (e.g., Red Cross), faith-based (e.g., Catholic Relief Services), business (e.g., Gates Foundation), hospice support (e.g., Hospice Africa), and association (e.g., International Association of Hospice and Palliative Care). In addition, the Center for Advancing Palliative Care (CAPC) periodically provides summary information on funds for palliative care research and education for countries to apply. The resource-poor nations are given higher preference to seek these funds to enable them to strengthen their capacity for providing care for the terminally ill.
What is palliative care?
Interestingly, there is no agreed upon worldwide definition of palliative care. This is partly explained by the fact that there are definitions at various levels. Palliative care has been defined at a global level (e.g., World Health Organization), at a pan-national level (e.g., European Association of Palliative Care), and at a national level (e.g., U.S., Canada, U.K., etc). The WHO developed the original definition in 1986 and revised it in 1996 and 2002 to reflect the 13
improved practices based on education and research. The refinement of the definition is based on the realization of the need to improve the quality of life for both patients and families facing life limiting illnesses. Also, the need to improve communication for those involved in the decision making process for end-of-life saw the revision of the definition. Thus, the World Health Organization defines palliative care as:
―…… an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual,‖ (WHO, 2002, n.p.).
Although the World Health Organization‘s definition of palliative care is widely used in many settings, Gwyther & Krakauer (2009) contend that this definition is simplistic because it fails to acknowledge the comprehensive nature of palliative care. They suggest a further refinement of the WHO‘s definition so as to reflect the diverseness and comprehensiveness of the needs that are addressed. As they propose, a revised definition can thus act as the guiding framework for development of future palliative care programs in different countries. Therefore, an expanded WHO definition should not only reflect on the domains but also suggest the activities or tasks for each domain as well as the multiprofessional staff to be involved.
One of the important and distinct features of palliative care is its overall goal to improve the quality of life of patients and their families (Watson et al., 2009; WHO, 2002). This focus makes palliative care different from other forms of care for people facing complicated medical situations, and also makes it an especially appropriate model of care when cure is no longer feasible. This is partly because there is good agreement that quality of life is the major outcome expected in palliative care and partly because of availability of comprehensive tools for measuring this outcome. Development of these measures for quality of life has been influenced by WHO‘s definition of health, which is, ―…..a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity,‖ (Watson, et al., 2009, p.52). Most instruments available are multidimensional and usually assess symptoms, physical functioning, psychological well-being and social functioning. There are also measures of spiritual aspects and 14
beliefs within given cultural contexts for palliative care patients (Vivat, 2008). The WHO‘s commitment and contribution to development in palliative care is further evident from the definition and its influence on the development of tools for assessing the outcomes expected.
Geographical variations in definitions Specific countries and regions have defined palliative care so as to reflect their local realities such as dealing with impending death from terminal illness (Pastrana, et al., 2008). Sampling the websites of national associations for palliative care and other resources reveals that the WHO‘s definition takes precedence in many nations. However, some countries, especially those in developed regions, have developed palliative care definitions to align with the needs of their populations requiring palliative care. There are several examples given to illustrate differences and commonalities. For instance, the National Consensus Project (NCP) in the United States defines palliative care as comprised of eight domains (Ferrell, et al., 2007; NCP, 2004). The eight domains includes the four WHO domains and an additional four domains, focusing on processes of care access, preparation of the imminent death, ethical issues and legal aspects of palliative care (Ferrell, et al., 2007). The shortened version of U.S. definition states that:
―……palliative care is both a philosophy of care and an organized and highly structured system for delivering care, with the goal of preventing and relieving suffering, supporting the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. It expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patients and family members, helping with decision-making, and providing opportunities for personal growth. Palliative care can be provided along other life-prolonging treatments or as the main focus of care. Such care is appropriate to those suffering with cancer, heart conditions, liver failure, renal failure, Alzheimer‘s disease, spinal cord injuries, HIV/AIDS and a number of other conditions,‖ (NCP, 2004, p. 6).
It is apparent that the U.S. defines palliative care by extending the WHO‘s definition by adding more domains and listing the most common diseases in the palliative care system. Although the U.S. focus seems comprehensive and has more domains, it is heavily medicalized since it applies traditional disease modifying models, a critique previously identified by 15
McNamara (2004). On the other hand, the National Institute of Clinical Excellence (NICE) of the United Kingdom defines palliative care to reflect on the best practices with more emphasis on the physical aspects and supplemented by other aspects. This focus is close to the WHO approach but recommends earlier intervention in the disease course. Thus, the UK defines palliative care as:
―...…the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments,‖ (Sutton, 2005 p. 35).
The U.K. definition is more explicit on the four primary domains and the outcomes (i.e., quality of life). It also suggests holistic and inclusive interventions right from the time of diagnosis. However, it cannot be concluded that the holistic approach is as a result of palliative care having its origin in the country, but the work of Cecily Saunders has heavily shaped palliative care in UK through a multiplex of initiatives both in government and the private sector. However, other Western European nations rely on EAPC and borrow its definition of palliative care provided by the European School of Oncology (ESO). There is a two-level definition which shows a commitment to a comprehensive approach to the care for the terminally ill. One level focuses on the specialist palliative care (i.e., specialty of palliative care) while the other level is about basic palliative care (i.e., general palliative care). The specialist palliative care is provided at a specialized facility and it is aimed at relieving the patients‘ and families‘ distress. Thus, generalist palliative care is defined as:
―……..the person-centered attention to physical symptoms and to psychological, social and existential distress and cultural needs in patients with limited prognosis, in order to optimize the quality of life of patients and their families or friends,‖ (Ahmedzai et al, 2007, p. 2194).
Basic palliative care, on the other hand, is an approach that is provided at all levels of health care. This deviates from the WHO‘s approach because it pays particular attention to physical
16
aspects limiting it to health care personnel. In other words, this approach is more or less of a multidisciplinary approach. Thus, ESO defines basic palliative care as:
―………the level palliative care which should be provided by all health care professionals, in primary or secondary care, within the duties to patients with life-limiting disease,‖ (Ahmedzai, et al., 2007, p. 2194).
Similarly, Watson (2009) identifies two levels of palliative care that can be provided. General palliative care is provided to patients and their families with low to moderate complexity of palliative care need. On the other hand, specialist palliative care is provided to patients and their families with moderate to high complexity palliative care need (Sutton, 2005; Watson et al., 2009). In spite of the evolution and refinement of definitions of palliative care, there are major questions that are critical in the palliative care subspecialty. Is it care of the dying or care of the sick, or is it to improve the quality of life in the face of terminal illness? This clearly indicates that the meaning and goals of palliative care varies from one context to another. For instance, a study of palliative care in African settings found that the terms palliative care, end-of-life care, and hospice care are used interchangeably in different parts of the continent (Harding & Higginson, 2005). However, Watson et al. (2005, 2009) explain that hospice and palliative care refers to a philosophy of care rather than a particular service or building or facility. It is a philosophy because it entails some general principles that include, but are not limited to symptom control, disease management, and psychosocial care of both the family and patients (Ferrell, et al., 2007; Sepulveda, et al., 2002; Watson, et al., 2009). The examples provided to show that there are variations as well as to point to the fact that the main focus is usually on the physical aspects of disease. From the various definitions, it is evident that the most common focus in palliative care is the alleviation of pain and suffering brought by progressive terminal illness, which is mainly the physical aspects of palliative care (Ahmedzai et al, 2007; NCP, 2004; Sutton, 2005). However, the suffering among the patients usually has also the psychosocial and spiritual aspects (Connor, 2009; WHO, 2004). There is, therefore, variety of ways in how palliative care is conceptualized in different parts of the world so as to address the unique needs of both the dying patients and their families. An examination of the cross-national and cross-cultural definitions and practices of palliative care have shown how increasingly important the needs are in many countries. As Connor (2009) contends, 17
conceptualizations need to acknowledge that palliative care is interdisciplinary and also multiprofessional. Lack of trained personnel, however, hampers the possibility of providing palliative care in an interdisciplinary and comprehensive manner. As result of many definitions, there have been considerable confusions not only among health professionals but also patients and families, and thus in some cases, people are unsure what palliative care really is.
Models for delivery of palliative care Just as definitions of palliative care differ from region to region and country to country, similarly, the nature, settings, model, and comprehensiveness of palliative care tend to differ. The original model for palliative care developed in the United Kingdom was mainly based on an inpatient hospice facility as the only place where care was provided (Connor, 2009). In later developments, models of palliative care have been extended to other settings. This was because the original model proved to be impractical in various countries and cultures, necessitating innovative ways of providing care to terminally ill patients. Literature shows that blends of palliative care models exist in order to meet challenges other than distress associated with the illnesses. Such extraneous challenges include: financial constraints, inadequate specialized palliative care professionals and burdened health care systems especially in developing countries due to the HIV/AIDS crisis (Clark, 2007; Harding & Higginson, 2005). The models of palliative care are tailored to address issues related to the illnesses and also a wide array of other needs including the basic ones such as food and financial resources (Clark, 2007). Also, the models may vary by the services provided, the providers as well as the settings in which care is provided. Connor (2009) identifies three settings where palliative care is provided. They include: home and community, at a hospital, and in specialized hospice facilities. He further identifies a unique model, the faith-based hospice, which is not a setting per se but an upcoming model based on the providers of the service in various parts of the world. This is generally consistent with Eagar, Green and Gordon (2004) who classified models of palliative care as hospital-, hospice- and home-based settings, and Abu-Saad (2000) who uses domiciliary, inpatient and outpatient to differentiate settings of care. In domiciliary settings, home-based palliative care is provided by general practitioners and family physicians and community nurses. In inpatient settings, facilities such as hospices, homes for the terminally ill, generalized or specialized units
18
in hospitals or nursing homes, homes for the elderly, and homes for the terminally ill children are used. General practitioners or specialists in palliative care as well as anesthesiologists, oncologists and internists are part of the interdisciplinary team that provides care at the inpatient facilities. Outpatient settings usually offer consultative services in settings such as non-palliative units in hospitals or at the hospital day care centers for terminally ill patients. The aim is to improve the quality of life of the patients and to provide the social realm of palliative care through social activities, arts and crafts (Abu-Saad, 2000). A faith-based model is increasingly becoming popular in Africa and parts of Asia. In this approach, congregational volunteers are trained to become community health workers and are supported by professional staff (Connor, 2009). Examples of faith-based models are found in Kenya and Tanzania. In Kenya, Kijabe Mission Hospital in Central Province is one of the faith- based health care systems operated by African Inland Mission. Recently, the hospital established a palliative care unit which relies on volunteers (Hospice Care Kenya, 2008). In Tanzania, Wright et al. (2006) found that church-related hospitals provide about half of the health care in the country. As such, plans are in place to extend palliative care coverage to around 82 Christian hospitals throughout Tanzania. Volunteers feature prominently in faith-based healthcare facilities whose role in palliative care is immeasurable (Wright et al., 2006). Additionally, partnerships have been formed between faith-based organizations and governments in African countries to provide palliative care (Mmbando, et al., 2009). The Network Neighborhood Project in the state of Kerala, India is an example of community-based palliative care. In this, trained voluntary health care workers with different professional backgrounds such as social work and teachers are used. The volunteers are backed by professional nurses and physicians resulting in a successful program based on neighborhood support (Connor, 2009; Gwyther & Krakauer, 2009). In the United States, home-based palliative care is the most common model according to National Hospice and Palliative Care Organization [NHPCO]. This model has also been introduced in sub-Saharan Africa (Downing, Harding, & Mwangi-Powell, 2010). In this model, individual patients and families receive care in their homes delivered by a multidisciplinary staff. The aim is to increase accessibility, reduce cost of care and improve independence and satisfaction among the patients and their caregivers (Downing, Harding, & Mwangi-Powell, 2010; Fernandes, et al., 2010). Thus, culturally appropriate models of palliative care are required to meet specific needs of the patients in a given 19
cultural context (Clark, 2007; Connor, 2009; Gwyther & Krakauer, 2009). This may include respect for the norms, taboos, and societal values related to illnesses and matters of death.
Importance of studying palliative care from a global perspective
From Stjernsward‘s simple reality statement, ―We are all born to die,‖ (1997, p. 14), to annual mortality statistics gathered by the WHO, the importance of care that is designed around the needs of dying people is clear. The unmet needs of palliative care are enormous (Singer & Bowman, 2002; Stjernsward, 1997). Globally, fifty-eight million people die annually from all causes, including 45 million (76 %) in developing nations and 13 million (24 %) in developed nations. Of these deaths, 35 million (60 %) result from prolonged advanced illnesses for which palliative care could be appropriate. It should be noted however that those needing palliative care are patients living with the terminal chronic disease and those who die before receiving any form relieving care from symptoms associated with the disease. In the palliative care literature, the discussions of cancer and of HIV/AIDS feature prominently. For instance, two-thirds of 10 million new cancer cases each year are not cured and die within a year of their diagnosis (Stjernsward, Foley, & Ferris, 2007a). Also, 60 % of patients living with cancer experience significant pain (WHO, 1996). HIV/AIDS, another progressive illness, causes 3 million deaths annually. If the current preventative measures fail to work, HIV/AIDS mortality will increase to four million by 2015 and six million by 2030 (Stjernsward, Foley, & Ferris, 2007a). In addition to these statistics, rapid population aging worldwide is associated with increase in multiple non- communicable diseases (Aboderin, et al., 2008), thus necessitating use of palliative care services. It is estimated that 60 % of the 1 million people who die every week in the world could benefit from palliative care, however, only a small fraction do receive support of hospice and palliative care services (Clark, 2007). The need for palliative care will rise dramatically in the next several decades as the population needing such services increases, more so especially in the developing world (Stjernsward, 1997; Stjernsward, Foley, & Ferris, 2007b). The greatest challenge is the fact that many patients throughout the world present their progressive chronic illnesses at advanced stages, making therapies to control progression ineffective, causing multiple side effects, great suffering and expensive treatments (Stjernsward, et al., 2007b). Therefore, palliative care is
20
necessary for both patients and their families so as to reduce suffering and improving the quality of life. Important to note are other incurable illnesses that require prolonged periods of management and could also benefit from palliative care. The style of their management makes them chronic illnesses (Connor, 2009). Such illnesses also include: diabetes, stroke, and early phases of cancer. These conditions and illnesses include: congenital injuries or conditions, chronic and life-limiting injuries from accidents or trauma, and seriously and terminally ill patients, even with mysterious diseases (Connor, 2009; Ferrell, 2007). Chronic obstructive pulmonary disease (COPD), Alzheimer‘s and related dementias also require management for psychological distress; and personal care, family, and social needs of older persons living with advanced illness (Abu-Saad, 2000; American Academy of Hospice and Palliative Medicine [AAHPM], n.d). Despite much effort and significant progress made in the development of palliative care globally, there exist some important gaps to be acknowledged. Chief among them is that many countries have not considered palliative care as a significant health problem, and they have not included it in their health care agenda (Sepulveda, et al., 2002; Wright, et al., 2006). As previously stated, half of the world‘s countries have no palliative care. This is against the backdrop of the lives of millions of patients across the world that could be significantly improved through palliative care interventions (Stjernsward, Foley & Ferris, 2007a). Two important approaches to palliative care that emanate from the WHO‘s efforts in the field can help foster growth. These include the primary domains of palliative care and the Public Health Strategy. The domains employ a ―bottom-up‖ approach to palliative care where the four facets of physical, social, psychological and spiritual work harmoniously for holistic care for the patients and their families. On the other hand, the Public Health Strategy employs a ―top-down‖ approach where recommendations and initiatives are instituted by the health authorities in countries and implemented at all levels of society.
Summary As result of success of the modern medicine, more people are living with advanced life- threatening illnesses for much longer (Butler, 2008). Palliative care has emerged as an important new direction for care of people with terminal illnesses and their families around the world. The
21
need for palliative care is defined by the rising incidence of illness and need for care that focuses on quality rather than quantity of life. In spite of considerable growth in palliative care worldwide, there is no single agreed upon definition of palliative care. Generally, the WHO‘s definition is widely used, but there are variations of the definition in different countries and regions, just as there are different modes of delivery of palliative care. Multiplicity of definitions cause confusions despite the awareness that palliative care indeed improves the quality of life Also, palliative care is complicated by the fact that it is multifaceted, and all elements are expected to be available and work harmoniously for it to be effective. The effective implementation of palliative care in the last four decades in nearly half of the countries in the world has been unprecedented providing an excellent opportunity to empirically investigate this growth. However, previous research on palliative care has given little attention to cross-cultural and cross-national comparisons in regard to the frameworks for creating palliative care standards and the factors that have driven the observed development of such services. For instance, Lunder and colleagues (2003) examined standards from a few countries, which included guidelines of individual hospice programs. The shortcoming of this approach was that their analyses focused on standards and guidelines created at different levels (i.e., at the national level and at the program level). Their findings, however, did not provide an overview of standardization of palliative care at national level. Also, their approach paid little attention to the agency that creates the standards and ended by including clinical guidelines for end-of-life care that specifically relate to procedures for care provision unlike the multidisciplinarity exhibited by the palliative care standards. As will be discussed elsewhere, clinical guidelines differ from the standards in that standards attempt to have an overall view (i.e. multidisciplinary) of palliative care development, which might encompass some aspects of the guidelines. Also, a few studies in the past have attempted to investigate the factors that impel the growth of palliative care. For instance, Saunders & Kastenbaum (1997) administered a survey to a few countries with a limited number of variables to investigate the factors that are integral to the growth of palliative care in different countries. In another study, Wright and colleagues (2006) used a single template to collect data from all the countries of the world. They used data collected to create a four-level typology characterizing the development of palliative care. The study analyzed the correlations between the levels of palliative care development and a limited 22
number of country-level variables: crude death rate (CDR), gross domestic product (GDP), and human development index (HDI). However, their analyses did not examine the relative importance of these variables in the observed growth of palliative care. As the model of caring for terminally ill patients continues to expand worldwide, it is valuable to explore cross-cultural variations in the definition, modes of delivering, and standards of palliative care. It is also necessary to understand the factors that promote or hinder the inclusion of palliative care in the health care systems of nations around the world. In order to achieve this, two primary research questions will be explored. This project will attempt to bridge the gaps in the literature by examining the growth of palliative care from two perspectives: 1) the frameworks on which the palliative care standards are created in different countries and; 2) the country-level characteristics that have led to the development of palliative care services. The two primary research questions to be answered in this project are:
a) What are the underlying frameworks that guide creation of palliative care standards around the world? b) What are the salient factors associated with the growth of palliative care services in countries where such services exist? The project has two separate but related studies. The first study is on standards of palliative care presented in chapter 2. In this chapter, a review of literature pertinent to the palliative care standards will be presented in the first section. Then the second section will discuss the methods used to gather and analyze standards from different countries of the world. Findings from the analysis of standards will be presented in the third section, supporting the findings with country-case examples and literature where necessary. The fourth section of this study will include conclusions, limitations of the study, and make suggestions for the future research and policy. Also, in the fourth section, the link between the study on the standards and the second study will be provided. The second study will be present in chapter 3. The first section will start with a review of literature on the general factors that shape health care systems and relate them to palliative care. The literature section will also provide a profile of previous attempts on cross-national comparisons of palliative care growth. The second section will discuss the methods employed; it will include data sources, data preparation, and data analysis. The third section will present results while the fourth section will discuss results and relating them to the 23
literature on different factors responsible for the growth of palliative care. The fifth section will provide conclusion, which will include the limitations and suggestions for future policy and research. The last chapter 4 will provide the overall conclusions, showing the interrelationships between the two studies. Also, the directions for future research in relation to the findings from this study.
24
CHAPTER TWO STANDARDS AND GUIDELINES FOR PALLIATIVE CARE Introduction Hospices in their early development (i.e., 1970s and 1980s) were opposed to the idea of standardization of practices (Connor, 2009; Connor, et al., 2004). Although the creation of modern hospice brought both creativity and scientific knowledge in delivering care to the dying patients and their families in any given environment (e.g., at home or in hospitals), lacking of standards saw variations in focus of care as well as the expectations. In other words, there lacked harmony on what palliative care should address. Growth of programs and scientific studies of their effectiveness have resulted in an increasing demand to establish indicators of quality and effectiveness of palliative care in the past decade (Ferris, 2004; Lunder, Furst, & Sauter, 2003) Although there are no known internationally recognized and accepted guidelines for palliative care or even an organization for promoting and regulating palliative care, the WHO does recommend four domains as the minimum for basic palliative care. Literature and documents from several countries and regions around the world attest that there is diversity in the models of palliative care provision (Connor, 2009; Gwyther & Krakauer, 2009; Saunders & Kastenbaum, 1997; Wright, et al., 2006). The possible causes of variation may include: lack of in standards and guidelines, differences in local culture, norms and value systems, and differences in levels of development of palliative care services or general systems of health care. A further investigation is thus necessary to understand the country-specific aspects in the delivery of palliative care, the contexts in which those delivery models arise, and the extent to which standards and guidelines influence those delivery systems. The dramatic increase in palliative care services to over 10,000 programs of one kind or the other across the world (Connor, 2009) raises concern about standards for quality care. This observed growth over roughly four decades compares to the evolutionary rather than revolutionary nature of health care systems, depending on the needs for these services in a population (WHO, 2000). In evolutionary terms, palliative care services are created to address the rising needs for terminally ill patients while in revolutionary terms, palliative care services are integrated within the existing structures of health care systems. Similarly, systems of palliative care have evolved over time as the demand for such services increased. This trend is
25
evident in the immense growth in the last 40 years since the establishment of St. Christopher‘s Hospice in London and the growth of the hospice movement internationally (Connor, 2009; Kastenbaum, 1997). In countries where palliative care has been established for a relatively long time such as Australia, U.S., Canada, U.K. and other European countries, standards and guidelines were established in late 1990s and early 2000s to enhance quality care (Lunder, Furst, & Sauter, 2003).
As a common practice in medical branches, standards and guidelines are developed to ensure personnel apply their skills to provide quality care and the intended services. Within palliative care, standards have been developed to provide consistent and comparable approaches to relieve pain and suffering and improve the quality of life for patients and families (Lunder, 2005). Palliative care national associations and organizations have also evolved in different countries, charged with the responsibility of setting and promoting standards and guidelines for palliative care practice. However, the bases on which these guidelines are created may vary from country to country (Ferris, 2004). This study examines the bases on which these standards are set, comparing cross-national documents for standards and guidelines as secondary data for analysis.
Complex situations as challenges to developing standards Complex situations in palliative care services are common. Complexity arises in two respects: interaction between the various aspects of multifaceted and interdisciplinary care (Ferris, 2004; Munday, et al., 2003) and complexity in decision making on the part of the professionals providing care (Clover, et al., 2007). Further, the expectations that families have on care provided to their relatives and individual patients‘ own preferences present further complexities (Ferris, 2004). Thus, creating standards to deal with the complex issues in palliative care is a challenging task. For example, in Canada, it took about a decade to complete one set of their standards. National and provincial stakeholders and other interest groups from both general health care and specialist palliative care were involved in the process of consensus-building. Forums, workshops and committee meetings set the stage for deliberations that would reach nationally agreed-upon and accepted standards (CHPCA, 2002; Ferris, et al., 2002). On contrary, the U.S. National Consensus Project (NCP) took two years to complete, involving experts of leading palliative care organizations (Matzo & Sherman, 2010) which is relatively shorter
26
compared to Canada. While many consensus processes with multiple kinds of stakeholders require lengthy periods of time, the complex nature of palliative care further increases the time taken to create standards in order to incorporate details on any complex situations that may potentially arise. For instance, NHPCO recommends that confidentiality when working with family members be given due consideration when writing palliative care standards. There are numerous arguments to support the thesis of complexity in establishing standards for palliative care. Ferrell (2004) argues that developing standards in palliative care can be challenging because patients needing such care have inconsistent expectations, depending on the disease progression. The duplication of palliative care procedures effective in one patient may not be effective for another patient. Because of highly individualized outcomes, a measure of the effectiveness of the services or the programs is difficult to derive (Ferris, 2004). In order to attempt to resolve the complexities, Ferris (2004) offered some explanations. First, the language used in developing palliative care standards should be universal by defining, describing, measuring and comparing palliative care. However, Ferris‘ suggestion is impractical because of inconsistent outcomes, which vary by the palliative care system and by setting even within the same country. Second, a rather simplified way of resolving the complexities is to create standards that describe the processes of care rather than to measure outcomes. As such, standards tend to focus more on the process (e.g., procedure for provision of care) rather than a prescribed specific outcome (e.g., quality of life, patient satisfaction, quality death) (Lunder, 2005). In others, standards that focus on process of care are normative in the medical world (C. Hay-Rollins, personal communication, May 9, 2011).
Establishing standards: process or outcome? Why are standards necessary in palliative care? Ferris (2004) pointed out that standards are an important component in palliative care, if reasonable outcomes are to be expected. To better understand the relationship between the processes of developing palliative care standards, the process of providing care and the outcomes expected in palliative care, the conceptual model illustrated in Figure 2.1 shows the simplified relationships between processes in care delivery and outcomes.
27
Processes of Processes of Outcomes expected developing PC delivering palliative e.g., quality of life, standards e.g., care quality death, and consensus-building quality of care
Figure 2.1: Relationships between processes of standards development and care delivery and the expected outcomes
Although the hospice movement has consistently advocated for quality care as the major outcome, the WHO advocates quality of life for patients as the most crucial outcome (Oduntuya, et al., 2007; WHO, 1986, 2002). An important question to ask is whether palliative care should focus on outcome, process, or both? Some proponents have argued that palliative care standards should describe the procedures and polices (e.g., how palliative care teams should deal with the patients and their families), and not the outcomes expected (e.g., easing of physical discomfort from pain and other symptoms) (Ferris, 2004). To better understand the focuses in palliative care standards, Ferrell (2004) sampled four nations across the globe and examined their focuses on palliative care standards. These nations are Australia, Canada, United States, and United Kingdom. As Figure 2.1 illustrates, the process starts with creating standards describing the procedures for delivering care. As noted earlier, Canadian palliative care standards were a culmination of a lengthy process. The U.K. also followed a similar path in development and implementation of national standards through the National Council for Palliative Care (Sutton, 2004). Other nations where consensus-building was involved were: Mongolia (Oduntuya, et al., 2007); South African through Council for Health Service Accreditation of Southern Africa (COHSASA) (Defilippi & Cameron, 2007); and Vietnam (Krakauer, et al., 2007). In most of the settings, standards are used to prescribe a procedure (i.e., the process of care) but the outcomes may be determined by the patients and families based on the successes or expectations met. As such, it becomes difficult to predetermine specific outcomes as illustrated by the broken lines in the conceptual model in Figure 2.1 when developing standards. In other words, achieving desired outcomes is only possible after care has been delivered and data are collected to determine the level of goals achieved, that is, what Lunder (2005) refers to as evidence-based practice recommending data gathering on how expectation are met. Four case examples are explained below showing the linkage between processes and outcomes. 28
Australia was among the first nations to implement national standards as a platform on which quality palliative care was to be provided to all Australians (Palliative Care Australia [PCA], 2005). In 1994, the then Australia Association for Hospice and Palliative Care (AAHPC) published the first edition of the standards to be used in palliative care, with subsequent revisions in 1999, 2003 and 2005 (PCA, 2005). Australia‘s standards focus on the processes that professional caregivers should follow in providing care, stating that comprehensive assessment of the needs of patients and their families, as well as the partnership between caregivers, and patients and their families are a requirement in delivery of palliation services (PCA, 2003, 2005). Additionally, there is an ultimate goal of improving the quality of palliative care for the patients (PCA, 1999; Ferris, 2004). Australian palliation standards emphasize both process and outcomes in palliative care provision, but it‘s apparent that process of care is the major focus. Canada was also among the first few nations to establish standards for delivery of palliative care services to patients with chronic and terminal illnesses. In 1993, the Canadian Hospice Palliative Care Association (CHPCA) invited all parties that were developing standards for hospice or palliative care to constitute a single committee to guide the development of national rather than regional standards of practice. As a result, a consensus-building process was laid out to develop nationally accepted definitions of commonly used terms, values, guiding principles, foundational concepts, and principles and norms of practice of hospice palliative care (CHPCA, 2002; Ferris, et al., 2002). The entire process took 9 years, from 1993 to 2002, with the stakeholders actively involved in each phase including the consumers (CHPCA, 2002). The Canadian approach is an example of partnership between government and non-governmental organizations in establishing palliative care standards. The model provides the norms of practice for each step in the process of providing care, (CHPCA, 2002; Ferris, et al., 2002). In addition, data are gathered for subsequent refinement of the standards to achieve the desired levels of practice. Thus, the Canadian standards illustrate a case where process of care is emphasized as well as a process to enable the assessment of goals achieved as recommended by Lunder (2005).
In United States, the National Consensus Project (NCP) for Quality Palliative Care published the first edition of standards in 2004 (Ferrell, et al., 2007; NCP, 2009). This was a partnership project that had a mission of creating ―…a set of practice guidelines to guide the growth and expansion of palliative care in the United States,‖ (Ferrell, et al., 2007, pp.738).
29
Setting the guidelines as the norms for practice represents the process through which quality palliative care is provided (Lunder, Furst, & Sauter, 2003). As such, standards identify the important areas, the criteria for providing services, and the basic organization of care (Lunder, 2005). The NCP developed a framework of eight domains of palliative care (Ferrell, 2007). Although some of the domains mirrored the ones in the WHO‘s definition of palliative care, NCP framework recognized the importance of cultural aspects as well as the preparation for the death of the patients. In addition, the ethical and legal aspects of palliative care were part of the NCP framework, although absent from the WHO‘s domains. The focus of U.S. palliative care standards is on the processes for providing care (Ferrell, et al., 2007).
In the United Kingdom, the first initiative to introduce standards of palliative care was undertaken in 2004 by the National Institute for Clinical Excellence (NICE). A committee was constituted to develop standards for use in funding palliative care and hospices services in UK‘s National Health System (NHS) (Ferris, 2004; NICE, 2004; Sutton, 2005). An examination of published the U.K. guidelines showed that they were an assortment of both processes and outcomes. The processes ranged from the decision making process, communication and services/support provided to the patients. On the other end of spectrum, the outcomes of palliative care for the patients were to improve the quality of life (NICE, 2004). These guidelines were based on similar foundation measures as those of the WHO: physical, emotional, spiritual and social support (NICE, 2004).
The four case examples are congruent with the suggested conceptual model in Figure 2.1, indicating that standards need to focus both on process and outcome measures. All the case examples follow the model in Figure 2.1 in some ways. That is the standards stipulate the processes and procedures for delivering care implying that these will lead to valued outcomes, but standards are not primarily focused on outcomes. However, once care has been delivered, an evaluation of the outcomes can be determined based on the patients‘ and families‘ satisfaction of the care received as an indication of improved quality of life (Lunder, 2005). For instance, the Canadian case is clearly indicative of an approach that focuses on both process of care and outcomes. But there also seems to lack consensus on what is the ultimate goal in palliative care when developing standards, delivering care and what outcomes are to be measured. In other
30
words, it is apparent that the process of care is more emphasized than the reasonableness of outcomes expected for the patients and families receiving palliative care, which presents challenge to this subspecialty of providing care at the end-of-life.
Is it palliative care standards or clinical guidelines? Different countries use different sets of documents to guide how palliative care is delivered. Across nations in the world, the responsibility of creating standards maybe vested in different authorities to produce these documents varies from country to country. As evidenced in a study by Lunder, Furst and Sauter (2003), standards and clinical guidelines drawn from several countries were created by a variety of associations, organizations, and committees. In their analysis, data included clinical guidelines from individual hospice facilities, and national and regional palliative care associations, making direct comparisons difficult. Examining clinical guidelines in their study had a potential weakness because of heavily medicalized focus in these types of guidelines, which emphasize the physical aspects of palliative care. Such an examination misses some of the multifaceted aspects of palliative care (i.e., psychological, social, and spiritual). The comprehensive nature of palliative care requires a balance between medical and social approaches to care. In most cases, clinical guidelines emphasize the medical approaches, which may consist mainly of curative care. In contrast, proponents of palliative care encourage its introduction when curative care is unfeasible (Gwyther & Krakauer, 2009; WHO, 2002) and is more focused on comfort and supportive approaches to improve quality of life (Connor, 2009). In addition, clinical guidelines assist in decision making about appropriate healthcare interventions for specific clinical conditions (Lunder, Furst, & Sauter, 2003). For instance, in the UK, the National Health Service has created guidelines for most of the clinical specialties and also for various diseases that are presented at palliative care. But in addition, there are palliative care standards that are multidisciplinary. Although clinical guidelines are disease-specific interventions, unlike palliative care standards, which target a wide range of issues faced by terminally ill patients, they both have focus on patients and families. Clinical guidelines target specific diseases and are heavily based on medical model, and have relevance to families and loved ones of the patients to some degree by seeking to provide support to them. However, on the other side, the design of palliative care is to improve the quality of life for patients and their
31
families and standards are in most cases created with both the patients and families in mind. Therefore, this study will attempt to analyze the standards of palliative care and will exclude any clinical guidelines in order to underscore the multidisciplinary of palliative care. This criterion ensures that the ultimate goals of palliative care are borne in mind (i.e., improving quality of life, care for both the patients and families, and interdisciplinary approach evidenced by the primary domains). In conclusion, the process of creating palliative care standards is necessary but challenging. The challenges are related to the complexity in developing the standards through consensus process and difficulties in establishing global standards (Ferris, Gómez-Batiste, Fürst, & Connor, 2007). Palliative care standards are important to improve the quality of palliative care (Matzo & Sherman, 2010). While standards are currently country-specific, the existence and purpose of standards are evidence of a level of development in palliative care in different countries. Hence, the part of the question that this study will attempt to answer is: What is the extent to which the guiding frameworks of primary domains and Public Health Strategy apply in the process of creating palliative care standards?
Setting universal standards Universal palliative care standards are unrealistic and inappropriate for a number of reasons. There is lack of universally standardized palliative care language (i.e., in terms of definitions, descriptions, and foundational concepts) applicable to all settings such as hospices, hospitals and communities (Ferrell, 2007) where palliative care is delivered. It even becomes more challenging due to the fact that there are variations in political, social, historical, cultural and administrative conditions in countries where standards are created (Lunder, 2004; Lassey, et al., 1997). Further, these variations result from a number of macro-level parameters such as patient demographics, socioeconomic situations, literacy, and health care utilization (Lunder, 2004). Thus, universal global palliative care standards are very difficult to achieve due to the variations identified. Understanding the nature, context, authority, and development of standards in different countries acknowledges some of the sources of the variations.
As earlier pointed out, there was an initial resistance to standardization of palliative care by hospices in the 1970s and 1980s (Connor, 2009). Beginning early 1990s, hospices in various parts of the world started accepting the concept of standardizing palliative care. Among them
32
were U.S., Australia, Canada, and the U.K. The movement and desire towards harmonized care was partly driven by the refined definitions of palliative care by the WHO and also partly by the need to have care that needs the expectations of the patients and their families. At present, the number of countries with standards for palliative care has been increasing but not at the same rate as those with palliative care services. This study will, thus, show how the common frameworks and concepts used in developing standards as well as the differences that have resulted as countries advance in providing quality palliative care.
The Guiding Frameworks The framework that guides the current research is embedded in the WHO‘s role in the growth of palliative care services globally. This framework addresses two important aspects of the growth and development of palliative care as a component of a health care system: the interdisciplinary nature of palliative care and the structures necessary to integrate palliative care into the existing systems of healthcare. The interdisciplinary nature, explained by the interrelationship between the four facets of physical, social, psychological and spiritual, is a feature of the WHO‘s definition of palliative care. A conceptual schema has been developed to show the interrelationships between these four elements (see Figure 2.2) and the multiprofessional staff which delivers this care. Structures necessary for implementation of palliative care at all levels of society are explained by the second framework, derived from a public health perspective. Such structures create an enabling policy environment for effective embedding of palliative care into health care systems. Another important part of the structure is the authority that creates the standards. Agencies of national governments responsible for health care ensure structures are present for effective health care delivery. However, the governmental health care agencies face challenges resulting in gaps in delivery of care and non-governmental organizations‘ efforts attempt to fill in these gaps. This work will use the two frameworks (domains of palliative care) and Public Health Strategy to assess the differences and similarities in palliative care standards around the world.
Domains of palliative care This project focuses on the extent to which standards address the four principal domains of palliative care that are important in this type of care: physical, social, psychological and spiritual. McElvaine (1997 p.51) notes that the ―palliative care services addresses the physical,
33
emotional, and spiritual needs of those with life threatening illness; their families; and bereaved people.‖ Collis (2003) extends the definition of family in the palliative care arena to include friends and ―significant others‖ who are as well emotionally affected by the terminal illness. The World Palliative Care Alliance (WPCA) gives descriptions of activities and services to be provided under each of these four domains, and a conceptual map of how they are interrelated (WPCA, 2010). WPCA is a global action network of national and regional/pan-national associations that address palliative care issues across national borders. In so doing, the WPCA has attempted to give an explanation of what each domain entails by creating a list of the minimum activities because the WHO merely mentions the domains with no explicit details. Additionally, Connor (2009) explains the procedures of care for each domain. Under each of these domains as explained by WPCA and elsewhere, there are expectations and objectives to be met as well as challenges that hamper achieving the goals. In the review of standards and guidelines, attention to these domains will be assessed. The following is a discussion of these domains. Physical aspects The physical aspects of palliative care typically include the management of pain and other symptoms. Unmet physical care needs provoke fear of dying among the terminally ill because of the distress caused by the incurable illness, especially pain in the last phases of life (Connor, 2009; Murata, 2003). This is even worse for cognitively impaired dementia patients who are less able to express distress and wishes (Watson, et al. 2009). Under the physical aspects of palliative care, WPCA recommends a number of activities to achieve the goal of quality of life for patients and people surrounding them: a) assessment (including investigation), prevention and management of symptoms; b) clinical treatment activities; and c) appropriate referral to other clinics/hospitals as may be required. Most common symptoms associated with terminal illness as cited by Connor (2009) include: nausea and vomiting, diarrhea and constipation, anorexia, confusion, and dyspnea shortness of breath. However, pain appears to be the most significant symptom and requires prioritized attention when attending terminal illness. Saunders and Kastenbaum (1997) supports the importance of pain control among the terminally ill patients by asserting that total pain encompasses all of a patient‘s physical, psychological, and spiritual well-being.
34
Social aspects Assessing the patients‘ social support networks is vital in understanding and supporting their experience in the course of terminal illness. Successful coping with the effects and distress caused by the illness is related to adequate social support, either from church/faith groups, family, friends, or the community (Otis-Green, et al., 2002). Payne (2006) explains that social care systems in palliative care should provide opportunities and a place for social activity, social support and care for diverse groups such as ethnic minorities and vulnerable older adults. Payne cites the day-care centers as an example of a social-care system. The concept of day-care in this case refers to selected days in a week or a month where patients (and sometimes including families) gather at a palliative care facility or any selected location to interact and share their experiences of living with chronic and terminal illness. Further, Sharma et al.‘s (1993) study suggested some social purposes of palliative care: reducing isolation, allowing socialization among patients and caregivers, establishing an introduction to hospice care, and offering practical assistance with daily functions. These purposes are broadly categorized as those of general interaction and communication, and support for daily care. WPCA recommends that the social care in palliative care should be able to: a) identify financial needs; b) alleviate poverty and related constraints; c) ensure food security; d) develop social support networks for the clients/patients; d) identify and plan for care of orphans and vulnerable children; and e) refer patients to other appropriate services as may be required.
Psychological aspects Literature shows that physical condition of the patients may be influenced by their emotional states and in reverse, psychological states exacerbate the experience of physical pain (Collis, 2003). While literature shows that the psychological and social domains are interrelated, some suggest a single domain of psychosocial care (Connor, 2009). In support of this interrelationship, Otis-Green and colleagues (2002) point out that pain experience involves emotional, cognitive, social, behavioral, and spiritual factors. The relationship between pain experience and psychosocial support is multidirectional, playing the greatest role in determining the amount care required. In other words, care directed to alleviating pain and managing physical symptoms is holistic if similar attention is paid to the emotional concerns of the patients and their families. In a critical sense, psychological domain relates to every other domain that palliative
35
care seeks to address. However, in this context, psychological domain is discussed separately so as to underscore the important aspects that care is directed to attend to. WPCA recommends the following activities under psychological domain: a) emotional support; b) assessment of psychological and emotional needs; c) counseling – individual, family, bereavement support; and d) appropriate referral to other services as may be required.
Spiritual aspects Spiritual aspects in a palliative care system attempts to focus issues that physical, psychological and social aspects hardly provide in relation to self-being (Collis, 2003). The identification of the patients‘ spiritual awareness (Collis, 2003) and belief systems (Connor, 2009) is a goal for the multidisciplinary teams. Otis Green et al. (2002) maintain that spiritual aspects are too often overlooked in palliative care settings. More so, the clinical staff involved in the provision of physical and psychological care may not feel well equipped to address the spiritual aspects, and there is lack of understanding how their capacity can address the issues of spirituality and religion (Otis-Green et al., 2002). Spiritual aspects of the patients may also be overlooked because of overemphasis on disease and symptom control while the patients may be facing an illness that permeates through their body, mind, and spirit (Collis, 2003). Nevertheless, WPCA recommends that the spiritual aspects of palliative care should focus on: a) spiritual assessment; b) appropriate spiritual care; c) referral to spiritual carer according to patient‘s needs.
The four domains of palliative care are interrelated and interact in a complex way as shown in the conceptual schema in Figure 2.2. This schema was adapted from Ferris, et al. (2002) and modified using descriptions provided by WPCA to show the professionals and skills involved in provision of palliative care under each domain.
36
Physical aspects Professionals include: palliative care nurses & physicians; general practitioners; nurse aides; therapists • pharmacists
Psychological aspects Social aspects Professionals include: Professionals include: psychiatric counselors; Patient Social workers; psychologists; grief & bereavement counselors; counselors Family domiciliary care workers; trained volunteers
Spiritual aspects Professionals include: spiritual counselors; chaplains; ministers; religious volunteers
Figure 2.2 Interrelationships between basic domains of palliative care Adapted from: Ferris, et al. 2004
From the schema represented in Figure 2.2, it is clear that palliative care is centered on patients and their families with the intent to improve quality of life, unlike in traditional medical care where focus is on curing the patients. The outcomes in palliative care are thus based on the harmonious relationship between the different facets of care delivered by a multiprofessional staff to both patients and family. This framework applies to this study because it identifies the aspects of palliative care that might be addressed when developing standards of palliative care. The dominance of the model suggests that its incorporation into a country might reflect the level of development of palliative care. In a previous discussion (pp. 9 -13), the various reasons that have fueled the growth of these services were presented. Increasing demand for palliative care services as a result of the rising cases of progressive chronic and terminal illnesses have driven the need for these services (Stjernsward, Foley, & Ferris, 2007a). Consequently, delivery of quality palliative care services is entrenched in a system where availability and prominence of 37
skills is paramount. Therefore, the framework comprised of the four WHO domains provides an explanation of the interaction between the skills involved and the needs of patients and their families.
The Public Health Strategy for palliative care The second guiding framework for this study is Public Health Strategy (PHS), a model of development of palliative care pioneered by WHO in the 1990s for member states to adopt in implementing palliative care (Stjernsward, Foley, & Ferris, 2007b). The model explains the components of a structure necessary for palliative care system to function effectively in any given country (Powell, et al., 2008; Stjernsward & Clark, 2003). The conceptual map in Figure 2.3 shows the four basic components and how they are interrelated. The components are: a) appropriate policy; b) adequate drug availability; c) education for policy makers, health care workers, and the public; and d) implementation of palliative care through all levels of the society. In essence, these components enable the incorporation of palliative care into the national healthcare systems (Connor, 2009; Stjernsward & Clark, 2003). On the same note, separate systems of palliative care are found to be less effective and in fact the WHO discourages creation of such systems and recommends palliative care to be imbedded onto the existing structures of health care (Sepulveda, et al., 2002; WHO, 2002).
.
Figure 2.3: The Conceptual Map for the WHO Public Health Strategy for Palliative Care Source: Stjernsward, Foley & Ferris (2007a)
38
Providing palliative care within the structures of health care ensures it is available to all those who require it. Connor (2009) urges that governments should be able to engage in establishing policies that recognize palliative care as an integral component of the health care systems. Thus, the governments‘ palliative care policy should include all these components. The drug policy is crucial because it has been argued that palliative care without essential medications is only supportive care (Connor, 2009). As such, medicines such as opioids or step 3 analgesics should be available in all settings where patients receive care and proper prescription (Connor, 2009; Stjernsward & Clark, 2003; Stjernsward, Foley & Ferris, 2007a). Additionally, palliative care medication should not only be available but also accessible through insurance mechanisms or subsidy programs even to those with limited financial resources. There must also be a secure chain of supply of medications, and they should be delivered to pharmacies, hospices, hospitals and other authorized establishments for dispensing palliative care medicines.
For the education component, health care professionals should be trained to prescribe the medications. Medical schools should also have curriculum for palliative care for both nurses and physicians (Connor, 2009). Pharmacy schools as well should offer palliative care curriculum to enable proper prescription of drugs because of the tendency of the addiction to opioids. Training is also to be extended to other professionals such as the psychologists, social workers, community health workers, and to volunteers who supplement the perennial shortage of skilled personnel. Education and training aims at honing skills and competences for effective palliative care. However, there is contention that the currently available education does not guarantee the competence required for specialized palliative care (Connor, 2009; Stjernsward, Foley & Ferris, 2007a).
Implementation of palliative care at all levels of society is the other component of this framework. As previously discussed, it is evident that several models of palliative care have emerged allowing accessibility of these services in many different settings. However, the question of whether the evolution of different models of palliative care has been in response to the recommendation of Public Health Strategy remains unclear. Also, establishment of many different models of palliative care may be as a result of sharing of information across national boundaries where the international hospice movement has been very effective in shaping palliative care in many countries. Stjernsward and colleagues (2007a, b) point out that the public 39
health approach has provided an effective strategy for integrating/establishing palliative care into a country but no evaluation has shown that is the case.
This study attempted to answer the research question how does the guiding frameworks of primary domains and Public Health Strategy apply when developing palliative care standards. Particularly, the frameworks will be useful for this research because: 1) they are used at country- level; 2) represent highest level and comprehensive view of important elements of palliative care; and 3) inform us how palliative care has developed.
Methodology Data sources The search for the existing records of palliative care standards was extensive and required numerous sources. The main source was the Website of National Hospice and Palliative Care Organization (NHPCO) (www.nhpco.org/standards). Other standards and guidelines were solicited through email contacts to the national palliative care associations and organizations and from their Websites within particular countries. In cases where the available standards were not up-to-date, efforts were made to contact the key palliative care stakeholders and personnel in those countries to obtain the most updated version of the standards. For instance, Australia‘s standards document that was available on the association‘s Website was the first edition created in 1994. A newer edition (2004) was obtained when Palliative Care Australia (PCA) was contacted. Other sources for standards documents were the International Association for Hospice and Palliative Care (IAHPC) and the Worldwide Palliative Care Alliance (WPCA). National agencies of health (ministry or departments of health) were also used in the search for standards documents.
Palliative care standards for 22 countries were obtained. Also available were two pan- national standards, the European (The EAPC‘s White Paper) and the African (APCA Standards), were only consulted during analysis if reference was made to them by standards of countries within these regions. For instance, some European countries use EAPC definition of palliative care which is slightly different from the WHO definition. Further, standards from five countries (Austria, Netherlands, Spain, Sweden, and Switzerland) were excluded from analysis because they were in languages other than English. The other exclusions were standards that either
40
focused on particular disease(s) or particular setting(s) of care. For instance, Australia has guidelines for palliative care approach in residential aged care and national cancer prevention policy, which were superseded by the palliative care standards for that country. The standards documents were neither representative of all regions of the world nor of levels of economic development. This lack of representativeness is not an issue since the scope of this study is to investigate the underlying concepts and frameworks on which these standards are created but not to generalize them based on regions or economic development.
The following is the list of the 17 countries whose standards and guidelines were analyzed:
1) Australia 7) Japan 13) Romania 2) Canada 8) Malawi 14) South Africa 3) Germany 9) Mongolia 15) United Kingdom 4) Hungary 10) New Zealand 16) United States 5) India 11) Norway 17) Vietnam 6) Ireland 12) Poland
Data analysis Content analysis is widely used in qualitative research (Hsieh & Shannon, 2005; Schutt, 2006). The technique is used for verbal, written, or visual communication messages (Cole, 1988). Historically, content analysis has been used in analyzing hymns, newspapers and magazine articles, advertisements, and political speeches in the 19th century (Elo & Kynga, 2008). In the last few decades, content analysis has shown steady growth in use in communication, journalism, sociology, psychology and business (Neundorf, 2002). Additionally, content analysis is becoming increasingly used in psychiatry, gerontological and public health studies (Elo & Kynga, 2008). There are three distinct approaches to this technique: conventional, directed, and summative. Each of these approaches is used to interpret the meaning from the content of text data thus adhering to naturalistic paradigm. The major differences in these approaches are the coding schemes used, origins of the codes, and threat to the validity or trustworthiness (Hsieh & Shannon, 2005). In conventional content analysis, the coding categories originate from the text data being analyzed. Direct content analysis uses a theory or relevant research findings for
41
guiding the initial codes. Finally, summative content analysis involves counting and comparing keywords or contents and then interpreting the underlying context (Hsieh & Shannon, 2005). Directed content analysis was employed because this study was guided by two frameworks: the primary domains of palliative care and the Public Health Strategy. Findings from a directed content analysis offer support or non-support evidence for an overarching perspective (Elo & Kynga, 2008; Hsieh & Shannon, 2005). While the domains of palliative care (primary and auxiliary) and the Public Health Strategy frameworks are not theories per se, they provided a model of how palliative care should be designed and delivered to the needy population according to the WHO and WPCA. The extent to which a set of standards and guidelines address all the elements of this model was integral to this analysis. Therefore, the analyses sought to identify which standards have the elements or components of these pre- determined frameworks that, by virtue of their purpose should be reflected in formal standards and the provision of palliative care.
Results and discussion Four different facets of analysis were conducted with the palliative care standards documents. The four facets are: authority developing the standards; primary domains of palliative care; auxiliary domains of palliative care; and the components of Public Health Strategy. Domains of palliative care are divided and operationalized into two categories: primary domains, those recommended by the WHO and reinforced through its definition of palliative care; and auxiliary domains, which are other domains that were developed by the National Consensus Project (NCP) and developed a framework that considers broader aspects of palliative care standardization than the WHO. Other analyses will include the components of Public Health Strategy, based on a recommendation by the WHO that standards of palliative care should reflect on this framework (Brennan, 2007; Stjernsward, Foley, & Ferris 2007a). The organization developing these standards was of importance in order to underscore the level at which palliative care has been established and implemented within the countries. Presence of a national association indicates that the countries have embraced the promotion of palliative care activity (Connor, 2009), while a professional association indicates palliative care professional development through education and training (Ferris, 2004). Other authorities charged with the responsibility of developing standards include health agencies of national governments.
42
Essentially, all these analyses will point to the degree to which palliative care has been recognized and formalized in those countries where standards have been established. This will link to the next chapter that will be a study examining the factors that are associated with palliative care activity in a number of countries across the world.
Authority developing standards In countries where standards were obtained, the authorities responsible for creating standards differ. In this analysis, the authority for creating palliative care standards was identified by examining the contents of the documents for acknowledgement or copyright information. Standards were developed by national associations of palliative care that develops and owns the standards; national government health agencies that developed and copyrighted the standards; regional associations that partnered with the national associations but had no ownership the documents; and finally professional associations of practitioners who either partnered with governmental agencies or national associations of palliative care. In addition, the year when the standards were published was of importance due to the fact that standardization of palliative care is a fairly recent practice, only emerging in the last few decades. The results from analysis of the authority creating palliative care standards and year of publication are tabulated in Table 2.1 below.
43
Table 2.1: Authority responsible for developing standards
Country Year of National Regional Nat. Govt. Professional Other Publication Association Association Agency Association
Australia 2004 √ ° ° ° ° Canada 2002 √ √ ° ° ° Germany 2007 ° ° ° ° √a Hungary 2002 √ ° ° ° ° India 2006 √ ° ° ° ° Ireland 2001 ° ° ° ° √b Japan 2009 ° ° ° ° ° Malawi 2010 √ ° ° ° ° Mongolia 2005 ° ° √ ° ° New Zealand 2001 ° ° √ ° ° Norway 2004 √ ° ° ° ° Poland 1999 ° ° √ ° ° Romania 2002 √ ° ° ° ° South Africa 2009 √ ° ° ° ° United Kingdom 2004 ° ° √c ° ° United States 2009 √ ° ° √d √e Vietnam 2006 ° ° √ ° ° Total 9 1 5 1 3 Notes from analysis of authority for creating standards: a Germany Hospice and Palliative Care Society b National Advisory Committee on Palliative (Ireland) c National Institute for Clinical Excellence (UK) d AAHPM – the physician membership association (USA) e CAPC (palliative care advocacy and information organization (USA)
As the results in the table show, a number of organizations have been involved in the creation of standards. These include: national associations; regional associations; professional associations representing professionals and experts in palliative care such as the physicians and palliative care nurses, who for the most part develop clinical guidelines for disease-specific care (Ferris, 2004; Gwyther & Krakauer, 2009); and agencies of national governments responsible for the national healthcare, such as ministries/departments of health. Similarly, Connor (2009) observed that national associations and professional bodies in palliative care establish the standards for providing care. Also shown in Table 2.1, these authorities have developed standards either single-handedly or in collaboration. For instance, in the US, the National Consensus Project created standards comprised of a consortium of nationwide organizations active in promoting palliative care. These included: NHPCO; American Association of Hospice and Palliative Medicine (AAHPM); and Center to Advanced Palliative Care (CAPC). Similarly,
44
Canadian palliative care standards were created as collaboration between CHPCA (national association) and the provincial palliative care associations (regional associations). In these two countries of North America, they exhibited the consensus-building process, where stakeholders in palliative care were involved in the development of the standards. In a related argument, Ferris et al (2007) emphasized the need for an all-inclusive consensus-building process in developing standards as an indicator for quality palliative care. National associations of palliative care play a critical role in the standardization process. National organizations advocate for palliative care by identifying and defining the population in need and promoting the most effective models of delivering care for these populations. National associations of palliative care are crucial in the process of developing the standards. As shown in Table 2.1, in nine out of seventeen countries analyzed, standards were developed by national associations. National association in some cases collaborate with other organizations within a country in this process as either part of consensus-building, seeking input from the palliative care stakeholders. In the US and Canada other palliative care stakeholders took part in the consensus- building process, while for the other seven countries (Australia, Hungary, India, Malawi, Norway, Romania and South Africa), the national association single-handedly developed the standards. However, in Malawi, the national health agency (Ministry of Health) had input in the process that is not distinguishable as consensus-building or collaboration. As regulators of health care within national boundaries, departments or ministries of health are becoming equally involved in the standardization of palliative care. Palliative care has been recognized as both a public health issue and a human right. This awareness grew through the interaction among the disciplines of palliative care, public health, and human rights (Gwyther, Brennan, & Harding, 2009). The WHO has also been instrumental in urging its member states to address the palliative care needs of the patients and families (Stjernsward, Foley, & Ferris, 2007a). The advocacy efforts have consequently had a resounding effect on the countries implementing palliative care policies and standards of palliative care. It should, however, be noted that palliative care policies differ from palliative care standards in that policies create structures, systems and institutions for the provision of palliative care, while standards provide a reference on how quality of care can be achieved once the system of palliative care has been established. Five out of the seventeen countries examined used national health agencies to develop standards for palliative care. 45
Additionally, this analysis found that where national health agencies develop the standards, it is in agreement with the WHO‘s recommendations stipulated in the components of Public Health Strategy. In fact, the WHO‘s public health model mandates the national government to implement palliative care policy as one of its component (Ferris, et al., 2007; Stjernsward, Foley, & Ferris, 2007a). Thus, the involvement by the national agencies of health in the five countries using the strategy indicates their adherence to the WHO‘s stipulations on caring for the infirmly sick and their families. For instance, in Vietnam, the Ministry of Health was involved in the process of developing palliative care standards. In addition, two organizations, the United States Agency for International Development (USAID), a U.S. government agency that assists foreign governments, and Family Health International (FHI), a non-governmental organization heavily involved in working with the governments in developing nations on matters of health care access, provided expertise in developing the Vietnamese palliative care standards. A similar observation was made in Malawi, where the Ministry of Health, with assistance from USAID and APCA, was instrumental in creating the country‘s standards for palliative care. Interestingly, USAID was involved in the process of writing standards in these two countries as part of the U.S. President‘s Emergency Plan for AIDS Relief (PEPFAR), which provides support to developing nations affected by HIV/AIDS. Unlike the standards of most countries analyzed, Malawi, South Africa and Vietnam standards mostly focused on palliative care for terminal HIV/AIDS although other palliatable illnesses are featured. The World Bank‘s World Development Indicators data show that the adult HIV prevalence rates for these countries in 2006 were 12.1, 18.2 and 0.5 per 100 respectively (World Bank, 2006). Other countries analyzed had prevalence rates of below 0.5 percent. On the contrary, palliative care in industrialized countries is mostly for illnesses such as cancer, Alzheimer‘s disease, cardiovascular diseases, and injury (Connor, 2009). Besides national and regional associations of palliative care and the national health care agencies, other agencies or organizations involved in palliative care also developed standards for their countries. For instance in Japan, Hospice Palliative Care Japan (HPCJ), an organization that advocates for palliative care, publishes standards of palliative care as excerpts from several other agencies which include: Ministry of Health, Japanese Society of Palliative Medicine (JSPM) and the Japanese Medical Association (JMA). As an advocacy organization, HPCJ plays a critical role in standardizing palliative care in that country, with other agencies playing 46
advisory roles in these efforts. This multi-agency involvement in palliative care standards is unique to Japan among the countries examined. On the other hand, Germany‘s standards for palliative care were developed by the Germany Hospice and Palliative Care Society. Classifying the German organization as national association was complicated by the fact that its mandate seemed to be on patients‘ advocacy hence it was conveniently classified in ―other category.‖ German standards follow the recommendations by the EAPC (i.e., the White Paper) as is the case with most European nations; especially those have no country-specific standards. Similarly, most African nations that have not developed their own standards of palliative care adopt the APCA‘s framework for providing quality palliative care across Africa. As such, it can be seen that pan- national associations create frameworks which member states either adopt in providing palliative care or use to guide development of their standards.
Primary domains of palliative care The WHO recommends four primary domains that palliative care systems should embrace. The four domains as earlier identified are: physical, social, psychological, and spiritual aspects. Since palliative care is interdisciplinary, it requires the interaction of these diverse aspects by multidisciplinary staff (Connor, 2009). Similarly, Gwyther and Krakauer (2009) assert that comprehensive palliative care integrates the four domains by a multidisciplinary team trained from among health workers. This analysis found that palliative care standards are based on a framework that seeks to provide a comprehensive array of services to meet the needs of the patients and their families. Also as supported by literature (Clark, 2007; Gelfman, Meier, & Morrison, 2008; Gwyther & Krakauer, 2009 and Watson et al., 2009) and as WHO recommends (WHO, 2002), palliative care is meant to relieve suffering and improve the quality of life for the patients and their families. Standards examined found that all the elements are emphasized to relieve the distress caused by chronic and terminal illness. Further, the analysis sought to understand the operationalization of palliative care in these countries by using the WHO definition or other definitions. Results from this analysis are shown in Table 2.2 below.
47
Table 2.2: Primary domains of palliative care
Country Physical Psychological Social Spiritual WHO definition
Australia √ √ √ √ √ Canada √ √ √ √ °****** Germany √ √ √ √ ° Hungary √ √ √ √ √ India √ √ √ √ √ Ireland √ √ √ √ √ Japan √ √ √ √ ° Malawi √ √ √ √ √ Mongolia √ √ √ √ °** New Zealand √ √ √ √ √ Norway √ √ √ √ °*** Poland √ √ √ √ √**** Romania √ √ √ √ √ South Africa √ √ √ √ √ United Kingdom √ √ √ √ °***** United States √ √ √ √ √* Vietnam √ √ √ √ ° Total 17 17 17 17 10 Notes from analysis: *WHO definition is used but also modified to reflect the local needs thus extra domains (US) **Mongolia definition different but cites WHO recommendations for palliative care (e.g., pain ladder, number of patients for palliative care day care) **** Norway uses a hybrid definition of WHO/EAPC ****Poland use the WHO‘s 1996 definition (the current definition was revised in 2002 and Poland‘s standards were created in 1999 *****UK has its definition created by NICE (variant of the WHO) ******Canada is one of the countries that integrates both hospice and palliative care into hospice palliative care
As seen from the table, the analysis found that all the countries attempt to provide comprehensive palliative care services by including all the four domains in their standards. Operationalization of palliative care can be seen in the definitions used by most of the countries, where these domains are explicit. All countries either use the WHO definition or its modification. The WHO has revised the definition several times after the initial definition in 1986 (major revisions in 1990, 2002). The countries analyzed show that they use different versions of the definition. Even though Gwyther & Krakauer (2009) contend that the WHO definition has been simplistic and fails to reflect on the comprehensive nature of palliative care, the four domains have been evidently explained in all the versions (see Appendix D for different
48
versions of the WHO definitions). The importance of definition is that it influences the understanding of the concepts, scope and tasks that in turn influence the practices of palliative care and to create global awareness (Ahmedzai, et al., 2004; Pastrana, et al., 2008). In fact, ten out of seventeen countries examined cited the WHO‘s definition in the standards as the reference for operationalization of palliative care. Other countries modify the WHO‘s definition to reflect the local realities and needs for their patients. For instance, the U.S. uses a definition that extends the WHO‘s domains by adding another four on ethical, legal, and cultural aspects of palliative care. US‘s definition follows Gwyther and Krakauer (2009)‘s recommendation of extending the scope and coverage of palliative to meet the complex needs. The extent of application of these domains was found to vary among countries despite the fact that the WHO‘s conceptualization does not explicitly state what constitutes each of these domains. As pointed out earlier, the WHO has not clearly explained what each domain should entail. However, the WPCA attempted to fill this gap by providing a list of possible tasks under each domain (discussed earlier in this chapter). In this analysis, an effort was made to examine the standards so as to identify the activities, tasks or provisions that closely describe these domains. The analysis used the task lists provided by WPCA to identify the four domains (see pages 32 – 34 for descriptions of WPCA tasks). The physical domain was clearly and universally addressed because all standards prescribed processes of pain and other symptoms management. All standards had the inclusion of a plan of action for pain management, and the most common types of illness where patient experience pain at the end-of-life are cancer followed by HIV/AIDS and cardiovascular diseases. This follows the recognition that pain is very important symptom in terminal illness and at the end-of-life (Kastenbaum & Wilson, 1997). The most common prescription was application of the WHO‘s pain ladder that recommend use of analgesics and opioids depending on severity of pain. This observation is in agreement with previous discussion that physical distress from terminal illness permeates to other aspects of psychosocial and spiritual domains (Connor, 2009). Thus, countries emphasize controlling pain and management of other physical symptoms as a paramount objective of palliative care. Negative psychological states have been shown to heighten the sensation of pain (the most notable manifestation of physical aspects) among patients. Its importance in a palliative care system cannot be underestimated because it can also potentially influence patients‘ ability to bear the pain associated with the illness as well as enable the family and caregivers provide the 49
necessary support. The psychological support/care has also been recognized as an important component of palliative care system. Notably, the standards used the terms ―psychological‖ and ―emotional‖ interchangeably. Counseling was also found to be a common terminology to describe the psychological aspects of palliative care. For instance, Romania standards use the generic term ―psycho-emotional‖ to describe the psychological care provided to patients and emotional support provided to patients, families, volunteer caregivers and medical staff due to protracted disease. In Vietnam‘s standards, the procedure for addressing anxiety and other mental health issues provoked by the nature of terminal illness is stipulated. Social aspects of care were also found to be equally important in the standards. However, the process of identifying tasks and activities that cater for social care of the patient was a little more difficult. The reason was because the whole value system differs from one setting to another and there was also a tendency of providing social and psychological needs as a subset of psychosocial needs. In other words, it appeared to be a general assumption in most of the standards that social and psychological needs interact. The general tendency to use the term ―psychosocial‖ might be influenced by the WHO (2002) definition of palliative care, which uses this term. An earlier discussion had also identified the tendency to ―psychosocial‖ instead of separate social and psychological aspects of care. For example, Vietnam standards use the term ―psychosocial‘ exclusively, and seems to mean the psychological issues that require assessment, referral and counseling. However, the South African standards acknowledges that the social assessment in a palliative care setting is to include family structures and relationships, social and financial needs and access to resources such as transportation and medication. The South African case mirrors the social-care system recommended by Otis-Green, et al (200) and Payne (2006) to include family, social support, and an opportunity for socialization for the patients. The spiritual domain of palliative care was easily identified from the standards. For instance, searching for the term ―spiritual‖ showed many ways spiritual needs for terminally ill patients are provided in palliative care system. Most common consideration was the existential aspects; where standards seemed to recognize there are differences in belief systems and spiritual systems. Connor (2009) highlights the need to assess the spiritual history of the patients by the palliative care spiritual teams instead of limiting themselves to religions. The standards analyzed appeared to acknowledge the differences between the spirituality and religion, and most were in favor of understanding the spiritual past of the patients in care planning. For example, the New 50
Zealand‘s standards on spiritual care acknowledge the diversity of spiritual beliefs (including those of minority Pacific groups) and recommended that every palliative care setting in the country to have a spiritual work familiar with the diversity of belief systems. Romania‘s standards seem to favor a similar stance, where pastoral care for terminally ill patients and their families to be supported by qualified clerics and no restrictions to the religions. Standards from all the seventeen countries revealed that in all cases, palliative care systems strive at embracing the four domains. In many different forms, all the four domains constitute the integral part of the organization of palliative care. As such, a multidisciplinary staff provides care although there is an apparent acknowledgement of shortage of qualified personnel to provide particular elements of care (Saunders & Kastenbaum, 1997). For instance, most of the standards indicated the processes and procedure of providing care even though the health personnel in the general health care systems may lack specific skills to provide care for the terminally ill patients requiring palliative care. Also, the degree of emphases on educating health care workers, volunteers, and lay workers was not discernible from the standards. Thus, countries should be encouraged to aggressively advocate for the development of palliative care skills at medical and nursing schools. The countries that have recognized this need and have made initial efforts to train doctors and nurses on the subject of palliative care. Also, in industrialized countries, there is elaborate training of palliative care personnel in medical schools as well as in other health care training (Connor, 2009). For example, in the U.S. and Canada, palliative care educational programs have been approved by professional medical organizations such as American Board of Hospice and Palliative Medicine and American Board of Medical Specialties, and the Royal College of Physicians and Surgeons of Canada respectively.
Auxiliary domains of palliative care In an addition to the four basic aspects of palliative care, some countries have recognized additional aspects of palliative care related to the challenges of effective provision. With the aim of delivering appropriate palliative care, these domains have evolved as a response to criticisms of the simplicity of the WHO definition. For instance, Gwyther, Brennan and Harding (2009) and Connor (2009) identify legal aspects, and ethical aspects, of palliative care as important to the process, respectively. Several international declarations and conventions of palliative care have employed a human rights approach to reiterate the need for legal and ethical considerations
51
in providing care for terminally ill patients (Gwyther, Brennan, & Harding, 2009). Further, Brennan (2007) pointed out that the legal aspects of palliative care have both the element of human rights and appropriate use of legal services. The U.S. National Consensus Project (NCP) does incorporate legal and ethical aspects of palliative care in its framework, stating that patients‘ goals and preferences for care are to be respected within the limits of law to form the basis of plan of care (NCP, 2009). Further, the other domains employed by NCP are: cultural aspects of care; care of the imminently dying patient; and structure and process of care. The analysis of the four auxiliary domains is shown in Table 2.3.
Table 2.3: Auxcillary domains of palliative care Country Legal & Ethical Cultural Structure and Support for the Aspects Aspects Processes of dying patients Providing Care Australia √ √ √ √ Canada √ √ √ √ Germany √ ° √ √ Hungary √ ° ° √ India √ √ ° √ Ireland √ √ ° ° Japan √ ° √ ° Malawi √ √ √ √ Mongolia ° ° √ √ New Zealand √ √ √ √ Norway √ √ √ √ Poland √ ° √ ° Romania √ ° √ √ South Africa √ √ √ ° United Kingdom √ √ √ √ United States √ √ √ √ Vietnam √ √ ° √ Total 16 11 13 13
Auxiliary domains are as important as the basic domains to the most of countries that have developed palliative care standards. The findings attest to the importance of legal and ethical aspects of palliative care; sixteen out of the seventeen countries analyzed have made provisions for legal and ethical aspects in their standards. As the international human rights framework reinforces the need for dignity of the terminally ill patients, palliative care personnel are encouraged to respond to this call by practicing within the limits of the law (Gwyther, Brennan, & Harding, 2009). Similarly, countries heed to this by ensuring that the standards of palliative care meet the minimum expectations to safeguard the rights and choices of the patients 52
and families. For instance, India explicitly acknowledges to palliative care workers and home care teams that the patients and their families have the right to refuse home visits, treatments, and supportive care at any stage of the illness. They require that consent be obtained prior to the start of care plans. Confidentiality should be maintained regarding any information of the patient and/or families under this ethos. Similarly, Australia recognizes the importance of legal and moral considerations in informed decision making for incapacitated adults. Recognizing the cultural values of specific groups served under a palliative care system is vital (Gwyther & Krakauer, 2009). Such may include ethnic and racial minority groups and vulnerable and special needs groups. The vulnerable and special needs groups include children (e.g., in pediatric palliative care), the elderly, HIV/AIDS patients and rural communities. For instance, Australia considers the sensitivity of the palliative care needs of the Aboriginal people, the country‘s minority group. In providing palliative care, their cultural values are upheld without compromise. The Aboriginal people have a cultural preference to return to the countryside when death is approaching. The Australia articulates and recognizes this value and has a provision for it in its standards (PCA, 2005). A similar observation was made in New Zealand‘s and Canada‘s standards. In New Zealand, the configuration of palliative care services should ensure that care is culturally appropriate for all population including ethnic minorities such as Maori and Pacific people. Further, care providers should also be aware of the specific needs of the ethnic minorities in addition to palliative care needs. People with disability and non- malignant diseases, children and the elderly are also considered as special needs groups under the New Zealand‘s system of palliative care. Local providers of palliative care should also be aware of these specific needs, such as prolonged duration of illness and complex and high level of supportive care required for patients with non-malignant diseases such as COPD and multiple sclerosis. In the Canadian model referred to as ―square of care,‖ the cultural values, beliefs, and practices are considered to be paramount in care planning and when providing care in culturally diverse communities. The ―square of care‖ is a conceptual framework employed by the Canadian standards of palliative care that serve to guide issue identification and the provision of care during each therapeutic encounter. In the conceptual framework, the ethical and legal issues relating to the care patients receive are emphasized in regard to information sharing and decision making.
53
The structure and processes of providing palliative care were also found to be paramount in many standards documents. The National Consensus Project (NCP) identifies the structure and processes of care to revolve around the plan of care for the patient and families within an environment that meets their needs and by a multidisciplinary team. The physical environment in which care is provided should meet the needs of the patient and family (Ferrell, et al., 2007). This analysis focused on the planning of care by the multidisciplinary teams in order to meet the immediate and long range needs of patients and family prior and after death. Since this domain borrowed heavily from the U.S. framework of palliative care, it is certain that the U.S. has recognized the importance of specifying the structures for providing palliative care and the processes that define it within its system of health care (Ferrell, et al., 2007). This framework also advances the model of partnerships between players in a subfield of healthcare to improve the quality of care and quality of life for patients (Ferrell, et al., 2007). Other countries in this study that have attempted to explicitly define the structures and processes of palliative care are Australia, Poland, Romania, South Africa, New Zealand and Malawi. The commonality among all is the multidisciplinary staff, care assessments, and detailed descriptions of processes of care to meet the needs of the patients and their families. For instance, in Poland, the specification of diagnostic, therapeutic, rehabilitation, nursing, hygienic, supportive and educational procedures are provided in their standards. Romania calls for hospice interdisciplinary teams, who work with the patient and family to develop and maintain an individualized care plan. Similarly, in Malawi, a patient requiring palliative care has a detailed holistic assessment and care plan developed by the palliative care provider in collaboration with the patient and family in order of priority. Finally, the caring for the actively dying patients was considered to be an important element of palliative care. Also borrowed from U.S.‘s NCP framework, this analysis sought to examine how standards essentially prepare patients and their families as death becomes imminent or when the patients become unresponsive to treatments. This focus can potentially overlap with ethical and legal issues but its goal is to ensure that all involved parties are prepared for the dying process. NCP describes this process to include tasks such as recognizing the signs and symptoms of actively dying patients and communicating them to all the involved parties, introducing the hospice care, and ensuring that the signs and symptoms are culturally and age- appropriate (Ferrell, et al., 2007; NCP, 2009). While the use of hospice and palliative care 54
services may be dictated by factors such as limited diagnosis for patients with death expected to occur within a specified period of time, for example, less than six months, this was not the case with many countries examined. Nevertheless, this analysis focused on the particular ways that standards prescribe to prepare for the impending death for the patients and families. Other countries that are committed to preparing for actively dying process are: Australia, Canada, Romania and Vietnam. Australia has a bereavement support program for patients, families and caregivers prior and after death. In Canada, there is pronouncement and certification of death, pre-death care for the family and handling of the body according to family expectations and ideals. Likewise, Romania bereavement care is focused onto the family members when death is approaching and ensuring patients are comfortable. In Vietnam, when interventions do not work to save the patient‘s life, care is shifted to assisting the patient to have a comfortable and peaceful death. In addition to relieving pain and other symptoms, end-of-life care may include emotional, spiritual, and psychological support, nursing care for the sick person, the family and the caregiver.
Components of Public Health Strategy A public health approach has been suggested by the WHO to integrate palliative care into the mainstream health care system. This approach is crucial if significant achievements are to be realized in palliative care systems. One of the ways that this approach has been promoted is through the Public Health Strategy, a model that the WHO pioneered in 1990s (Stjernsward Foley, & Ferris, 2007a). This analysis examined how countries incorporate the components/pillars advocated under this model into their standards and guidelines of palliative care. The goal of this approach is to protect and improve the health and quality of life for terminally ill patients within the existing structures of health care. Public health approach should therefore benefit patients with advanced illness since no specialized facilities are required to provide this care. The four components of this strategy are: appropriate palliative care policies; adequate drug availability; education of the health workers, volunteers and the public; and implementation of palliative care at all levels of the society. In this analysis, the standards were assessed to establish whether the four components are part of the underlying models of standards. Results from this analysis are tabulated in Table 2.4.
55
Table 2.4: Components of Public Health Strategy Appropriate Adequate Education of health Implementation of PC at Country PC policies drug policy care personnel all levels Australia √ √ √ √ Canada √ ° √ °* Germany ° ° √ ° Hungary ° √ √ ° India ° √ √ √ Ireland √ √ √ √ Japan ° ° √ ° Malawi √ √ √ √ Mongolia ° √ √ √ New Zealand √ ° √ √ Norway ° √ √ √ Poland ° ° √ √ Romania √ √ √ √ South Africa √ √ √ √ United Kingdom √ √ √ √ United States √ ° √ √ Vietnam ° √ √ √ Total 9 11 17 13 Notes from analysis: *Canada process of creating standards/norms involved stakeholders from all levels starting at the grassroots. However, the standards are not clear about the fact of the implementation of care at all these levels
The number of countries incorporating any given component of Public Health Strategy varies. Six out of the seventeen countries embrace all four components of this model. Surprisingly, Malawi and South Africa are the only low-income nations that seem to have achieved this milestone of applying the ‗across-the-board‘ approach to palliative care within their systems of health care. It can be claimed that advanced economies have necessary resources and expertise to enable them ingrain palliative care services within the existing structures of health care. This is also in agreement with a previous study that created a typology of levels of development of palliative care, which found that only 35 countries in the world in 2006 had palliative care services almost approaching integration into the systems of health care (Praill & Pahl, 2007; Wright, et al., 2006). Most of the countries that have reached this level of development are the high-income countries with one exception (i.e., Mongolia). Education for palliative care personnel, volunteers and general public was the only feature that all countries have successfully incorporated. Education was manifested in variety of forms, as recommended in the WHO model (e.g., incorporating palliative care in medical;
56
pharmacy and nursing school education; training of the health care personnel in palliative care; training volunteers and family caregivers). All of these education and training efforts are aimed at creating awareness of the subspecialty to not only the medical fraternity but also the general public. Although Stjernsward and colleagues (2007a) seemed to favor educating the media and public advocates on the issues of palliative care, standards focused on education for staff within the care settings (e.g., hospices, medical and nursing schools, hospices, patients‘ homes or any setting care is delivered). There seems to be no consensus where parties outside care settings need to receive education and training despite the recommendations for such initiatives. Training, important component that Gwyther and Krakauer (2009) explain that it involves transfer of palliative care skills into work settings. Also related to skills development is the research activities advocated for in the standards. As such, countries that continually incorporate a research component as part of their palliative care have benefited from the accumulated wealth of scientific knowledge. For instance, Canada has been accumulating hospice palliative care data which has facilitated policy and practice reforms (Kuziemsky & Lau, 2008). In Ireland, the standards recommend the linkage of education, training and research by providing funding and infrastructure to carry out palliative care research in academic institutions and research centers, and also incorporating research in nursing and medical education. In conclusion, the education component of public health model of palliative care can be said to constitute the three elements of education, training and research. Implementation of palliative care at all levels of the society is another element advocated by the public health approach. Identification of palliative care needs in the community is the initial step, followed by mobilizing community resources such as health care facilities, infrastructure and medical personnel to respond to the identified needs. In so doing, community based programs integrate palliative care models into the existing community resources (e.g., health care facilities and personnel, community leaders, infrastructure) (Stjernsward, Foley, & Ferris, 2007a). Community settings are important elements for reaching out to the patients and families requiring palliative care. For instance, in New Zealand, a service-based framework for palliative care ensures that services are coordinated at local, regional and national levels and continuity of care for all communities. Similarly, in Malawi, the District Implementation Plan (DIP) ensures implementation of palliative care at district and community levels. Malawi employs a public health approach integrating palliative care within the existing health care 57
delivery systems in both public and private sector to scale up the continuum of care for chronic, life-threatening illnesses tailored to the specific cultural and social context (Palliative Care Association of Malawi [PACAM], 2008). Despite having implemented this comprehensive model, Wright and colleagues (2006) typology classifies Malawi in the third tier for countries with localised provision. It is worthy to note that Wright‘s typology in some case lack consensus with the data extracted from the standards. In addition, India‘s home-based model exemplifies implementation of palliative care services at all levels of society. It is the only country that was found to have an elaborate home-based model of palliative care among the countries analyzed. Availability of drugs for controlling symptoms is important for the successful delivery of palliative care. Gwyther and Krakauer (2009) maintain that hospice and palliative care is a process of management of symptoms so as to improve quality of life for patients. Such management of symptoms requires appropriate drugs such as opioids and analgesics. Connor (2009) also maintained that palliative care without medicines is barely supportive care, underscoring the importance of drugs for controlling physical distress associated with illness. In reference to the public health model, Stjernsward and colleagues (2007b) argue that national leaders responsible for palliative care drugs availability (e.g., drug regulators, pharmacists, pharmacologists, and law enforcement) should be engaged in the process of reviewing and implementing drug availability policies and practices. The analysis of standards established ways in which countries have recognized the importance of palliative care drugs and have put policies in place to ensure adequate stocks of drugs for successful palliative care programs. Eleven countries have already taken that step. For instance, in Ireland, local pharmacists and hospitals are encouraged by the national association of palliative care to ensure steady availability of palliative care medicines, and general practitioners ensure that stronger analgesics are available as part of palliative care drugs policies. Norway and Romania likewise maintain policies that important drugs like analgesics, anxiolytics, and antiemetics be readily available to the hospices and other units delivering palliative care. Similarly, South Africa and U.K. policies on palliative care drugs call for availability at all the times in all facilities and settings. The last component of Public Health Strategy is the implementation of policy on palliative care at the national level. Stjernsward and colleagues (2007b) pointed out that this should involve reviewing the existing national health policies, legislations, and regulations that bear the elements of palliative care such as pain control. If such concepts are missing in the 58
existing policies, national leaders should institute inclusion of palliative care strategy as part of the national health plan. This analysis examined ways in which the standards are indicative of the inclusion of palliative care as part of the national health policy. Nine countries among those analyzed have implemented palliative care policies at the national level. For instance, the Malawi‘s national policy is coordinated through the Ministry of Health and national association of palliative care (PACAM) to ensure leadership and coordination of services at all levels (i.e., regions and districts). In Australia, Ireland and South Africa, policy on hospice and palliative care is coordinated between the regional bodies and national legislature to ensure care is consistently available at all levels. Canada has an elaborate mechanism of incorporating palliative care into the national arena through an array of stakeholders such as legislators, regulators, health care providers and funders, and members of professional societies and organizations. Similarly, the British National Health System has practice standards for different specialties and subspecialties covering a wide range of illnesses and conditions. Palliative care is one of the practice standards developed by the UK government under the auspices of Department of Health‘s National Institute for Health and Clinical Excellence. The palliative care policy component of the Public Health Strategy encompasses the national health plans and legislations at all levels of a society (i.e., in a hierarchy) and across medical specialties and subspecialties.
Conclusions and implications This study employed two guiding frameworks, the domains of palliative care and Public Health Strategy to examine how these frameworks are applied when countries develop palliative care standards. There were a total of eight domains (four primary and four auxiliary) examined. The findings demonstrated an interrelationship between them despite the complexities that arise, competing expectations (by patients and families, and care providers), and multiplicity of skills involved to deliver such care. The interrelationship is exhibited by the overlapping of domains, where there is no clear cut borderline. For instance, the interdisciplinary nature of palliative care can be explained in terms of interactions between the different domains (i.e., primary and auxiliary). The primary domains are important since all 17 countries embrace them in one way or the other. For auxiliary domains, only the legal and ethical domain was commonly applied in palliative care standards. All countries except Mongolia have made consideration of legal and ethical aspects when writing their standards. This finding was in agreement with a
59
recommendation for comprehensive palliative care made by Gwyther and Krakauer (2009), where they listed the most basic elements of palliative care to consist the primary domains (physical, psychological, social, and spiritual) and legal aspects. Their recommendation was meant to expand and refine the current WHO definition of palliative care to reflect on the comprehensive nature of palliative care and also to protect the rights of the patients and families (i.e., the legal and ethical component). Ahmedzai and colleagues (2004) and Connor (2009) made a similar recommendation that the current definition of palliative care needs to be broadened to encompass the four primary domains and include the patients‘ rights for referral to appropriate care (i.e., to reflect on the legal component). In addition, both Gwyther and Krakauer (2009) and Ahmedzai and colleagues (2004) also emphasized the multiprofessional approach to palliative care, which is only possible if primary aspects of palliative care (i.e., primary domains) are provided. This study found that this recommendation has been reflected in the standards of all the 17 countries; they all include the four primary domains, thus enabling the multiprofessional delivery of care. However, this study was not able to establish from the standards whether all countries have adequate human resources or levels of skills to cater to all the four domains. Literature has shown that there is tremendous lack of palliative care specialists in most parts of the world (Saunders & Kastenbaum, 1997). The implication is that countries with standards maybe considering the minimum requirements for palliative care (Ahmedzai, et al., 2004). Effective delivery is not assessed within the standards. The next chapter of this study will explore the other factors that affect establishment of palliative care and will perhaps illuminate some of the wide range of factors that limit or enhance effective delivery of palliative care. The three auxiliary domains were also found to be important in creation of palliative care standards. The majority of the countries were found to have explicit structures and processes for providing care. Structures for the most part imply the settings that are clearly articulated in the standards. Care settings include home, community and facilities. Gwyther and Krakauer (2009) also offer that palliative care should be adaptable to the settings and resources available. For instance, in resource-poor nations, the social circumstances are exacerbated by poverty and lack of basic sustenance, worsening the patients and families‘ suffering. India is an excellent example where resources for providing palliative care may be absent. Also, in India, the neighborhood network model of palliative care which is a community-based approach reaches a wider 60
population. In this model, patients using palliative care services in a community form networks and receive care from trained caregivers. There are referral networks where potential patients become members of the network. This model has been effective not only because community resources are employed in providing care but also provides social support to patients, caregivers, and families. Cultural aspects of palliative care are also given an important consideration since different cultures have different value systems. Eleven countries were found to have made cultural consideration in their palliative care standards, by creating models of palliative care services that are geared towards the needs of the local people (Connor, 2009; Saunders & Kastenbaum, 1997). For example, in New Zealand, Australia, and Canada, there are ethnic minority groups that have benefited from palliative care services and the standards have recognized the existence of value systems within these groups. In delivery of care, such values systems are not compromised. In addition, care for the actively dying patients is also important; thirteen countries explicitly wrote the processes of preparing care for the dying patients. This finding is in agreement with a suggestion made by Gwyther and Krakauer (2009) that care for the dying needs to be recognized and promoted. The Public Health Strategy, on the other hand, provided a basis for examining how palliative care services can be delivered within the existing structures of health care. The WHO Public Health Strategy advocates the development and integration of palliative care into existing health care systems. Working with the existing structures for health care is imperative for successful implementation of palliative care. Stjernsward and colleagues (2007b) point out that palliative care is mainly integrated into the countries‘ health care systems by developing national strategy for palliative care, educating health and lay workers on palliative care skills, ensuring availability of appropriate palliative care medications, and implementation of palliative care at all levels of society. The majority of the countries in this study seemed to be striving to integrate palliative care into their health systems as reflected by the standards. Educating health workers, volunteers, and lay workers was the most common indication that this study found countries to be integrating palliative care. Health workers in mainstream health care are imparted with skills to help them deliver palliative care. Most countries have incorporated palliative care education into their medical education, which is in agreement with recommendations by Stjernsward and colleagues (2007b) and Gwyther and Krakauer (2009). 61
Implementation of palliative care at all levels was also found to have been accomplished in a number of countries. India is one of the countries that has successfully implemented palliative care even at the grassroots, using a home and community based model called neighborhood network. As previously explained, the neighborhood network model involves patients, trained caregivers, and their families to reach all the population in need. As Public Health Strategy seems to advocate, community resources are used in the Indian model to ensure that palliative care is available even at the very least level of the society. That is, there is mobilizing of neighborhood resources using volunteers and patient social support groups to reach large majority of the patients who need these services. Ensuring availability of essential palliative care drugs and development of palliative care strategy or policies was important for countries to have explicitly or implicitly included in their standards. Countries with national health systems such as Canada and the U.K. have developed strategies for delivery care in most medical branches (i.e., medical specialties and subspecialties) (Roemer, 1991). This study also found that countries with nationalized health systems have also established policies of palliative care at national level, which is consistent with Roemer‘s (1991) argument. The Public Health Strategy seems to favor a similar arrangement as those in nationalized health care systems, where countries should integrate their palliative care into the mainstream health care systems. However, the data analyzed in this study (i.e., standards document) were limited in that there was no explanation of the extent to which the components of Public Health Strategy are implemented in the countries. Future research may consider alternative types of data because standards are merely statements of recommended actions in delivering care, which is difficult to understand the extent of implementation from this type of data. One suggestion is interviews with key palliative care stakeholders (i.e., informants) and reviewing country-level documents other than standards of palliative care to add some knowledge on the progress of integration of palliative care into health care systems as advocated by Public Health Strategy. Authorities responsible for creating palliative care standards were found to vary across the seventeen countries. Most of the standards are created by national associations of palliative care. National associations are mostly non-governmental organizations that advocate for recognition of the needs of the terminally ill patients and their rights. These associations also influence major palliative care decisions in the health care sectors (Connor, 2009). National 62
government agencies such as departments of health or ministries of health were also found to be important vehicles for creation of palliative care standards. Other subsidiary authorities such as professional associations (e.g., America Association of Hospice and Palliative Medicine), and regional associations (e.g., Canadian and Indian provincial associations of palliative care) were found to be involved in creation of palliative care standards. This finding has important policy implications because both government and non-governmental organizations are involved in standardization of palliative care. Gwyther and Krakauer (2009) made an important recommendation that governments should work collaboratively with the private sector to provide palliative care. This study therefore recommends governments to work with private organizations to standardize palliative care as well as overall implementation of palliative care. By doing so, palliative care is likely to advance in all countries and more patients get access to this care. There are considerable variations across nations in how palliative care standards are created and applied. The extent to which these standards vary across the 17 countries was apparent because they were designed to specifically meet local needs. For instance, Malawi, Vietnam and South Africa have standards heavily based on providing palliative care for HIV and AIDS patients in resource constrained settings. The unmatched resources and number of AIDS patients needing palliative care makes it difficult to balance all the four domains of care examined in this study. Primary domains were of paramount importance in these countries while auxiliary domains and implementation of the palliative care policy and education are less universal, perhaps due to resource constraints. However, these countries seemed to be working towards all the fronts of Public Health Strategy components according to the findings from this study. On the contrary, Canadian, Germany and New Zealand standards had clearly articulated the primary and auxiliary domains. However, the components of public health approach were not apparent for these three countries. The explanation for Canada‘s case is that regional and national stakeholders are heavily involved in creation of the standards but the implementation process was not clearly articulated in the standards. Probably the process of implementation of the palliative care policies is the responsibility of provincial government. For Germany, the standards examined had scanty details of the process of implementation of palliative care. As is common with most European countries, Germany is likely to follow the EAPC model tasked by the pan-national association.
63
From the examination of the standards and guidelines, several points became apparent: there are no particular ways prescribed or agreed upon for developing standards as observed the data. Instead, countries strive to incorporate approaches that they deem will meet the needs of patients and families. This fact is evidence by the varying levels of details across the domains and components of Public Health Strategy. However, it was unclear how, use of the standards, which are explanations of procedures for the care, meet the minimum outcomes and targeted goals. Lunder and colleagues (2003) had identified a similar weakness in their investigation arguing that standards can be confusing and rigid statements that have no guiding formats. The findings from this study thus calls for the need to a basis for evaluating the framework for creating standards by identifying their limitations. For instance, the primary domains framework is clearly a framework that relates to the practice of palliative care from the patients and families perspective.
On the other hand, Public Health Strategy is a national-level framework for developing policies. As such, the primary domains framework employs the ―bottom-up‖ approach, providing the needs for patients and families while Public Health Strategy employs a ―top-down‖ approach, providing template for creating national level policies. However, more data is required to provide more relevance of the Public Health Strategy in development of standards. Standards and guidelines alone cannot provide a compelling overview of how the existing structures of health care can be used to provide palliative care. A broader view, which is more valid, can be obtained by examining health policy documents that explains the organization and structures of overall health care system. Such documents may include but not limited to national health policies and strategies as well as practice guidelines for specialized and general medical subspecialty. Also, interviewing key stakeholders in general health care systems and palliative care systems can inform how effectively palliative care can be entrenched into the existing systems.
The emergence of standardization has been a positive marker of growth of this field of practice for providing care at the end-of-life. In other words, for a country to reach the state of having created palliative care standards implies that the services in that country are at a level of uniformity where all providers may be striving that the care delivered to their clients meet a specified minimum threshold. In agreement, the IOELC typology employs standardization as one 64
of the characteristics of the highest level of development, approaching integration with health care system. Although the findings from this study indicated that the WHO definition of palliative care has been widely used by most nations, it was also evident that the focus for care is fragmented. For instance, in developed nations, there is greater involvement of state in legal and ethical aspects unlike in developing nations, where, rules are more relaxed in regard to state involvement in the end of life care for the terminally ill patients. Whereas the ultimate goal of palliative care is quality of life for terminally ill patients, there seems to lack consensus on the extent or the degree to which state and families members are involved in decision making processes. Countries should therefore adopt palliative care policies that specifically address the question of boundary on state‘s and families‘/communities‘ involvement in palliative care.
Refining the frameworks The primary domains framework employed in this study was operationalized from the WHO definition of palliative care, which explicitly states the four domains. As it became evident from this study, countries have commonly used this definition to guide their palliative care delivery. There is also evidence in literature that a majority of the countries have adopted WHO definition (Simpson & Pitorak, 1998). One shortcoming is that the WHO has not described in detail or articulated the activities or tasks for each domain its operationalization of palliative care. This was a major challenge when examining palliative care standards because there was no list of activities/tasks to be used in the coding process. Instead, this study employed, in part, the WPCA description of activities (see pages 32 - 34 for a list of description of WPCA activities). Efforts were made to examine the activities described in the standards. The findings from this study illuminated the need for more detailed activities that palliative care standards should include in the four primary domains. For instance, for spiritual care, the findings inform us that the existential issues of the patients and separation of spirituality from religious affiliation to be considered in palliative care standards. Neither the WHO and WPCA considered these aspects. In contrast to the primary domains framework, the WHO‘s Public Health Strategy is more explicit on the activities to be carried out under each component and palliative care is implemented within the contexts of culture, disease demographics, socioeconomic conditions, and health care system (Gwyther & Krakauer, 2009; Stjernsward, Foley & Ferris, Foley & Ferris, 2007b).
65
This study makes two recommendations: First, the primary domains framework should be refined to include more explicit information about what each domain entails. Such details are notably absent in the WHO definition of palliative care. Building the primary domains framework should also involve listing the multidisciplinary staff involved in each primary domain for palliative care to achieve the minimum requirement for basic palliative care. By so doing, the interrelationship among the primary domains can clearly evidence the ‗interdisciplinarity‘ of palliative care necessary for the best care outcomes to be achieved. This recommendation is in line with the design of Public Health Strategy, which lays out the tasks and measurable outcomes for any given component. The Public Health Strategy, for the most part, informs the policy makers at national (i.e., macro level), while the primary domain framework, on the other hand, can be applied at the institutional/facility (meso-level), and families and patients level (micro-level).The second recommendation from this study is that the WHO, as the authoritative health agency in the United Nations system, evaluate the existing framework of palliative care at the macro-level (i.e., the effectiveness of Public Health Strategy) and to develop comprehensive frameworks for meso- and micro-levels (i.e., to initiate a framework based on its conceptualization of palliative care).
The Public Health Strategy has been existence since 1990s (Stjernsward, Foley & Ferris, 2007a) but its effectiveness in promoting the development of palliative care within the structures of health care is not available in the literature. This is an important gap in the literature that the current approaches employed by the WHO are fragmented, with visible disparities between the macro- and micro- levels. At the macro-level, Public Health Strategy provides a framework for development of palliative care within the current structures of health care. However, the micro- level approaches are not well articulated in a framework thus the necessity to do so. As, a result, there have been unmatched palliative care growth in different regions of the world as a component of health care (Hoffman, 2010). This study however found consistencies of the primary domains in the development of standards (i.e., all countries have at least all four domains embraced their standards) but there were inconsistencies in the Public Health Strategy framework. In other words, the standards were inadequate to determine whether palliative care has been implemented within the current structures of health care, necessitating further examination with quantitative data. Chapter 3 will employ statistical modeling using data from
66
World Bank and World Health Statistics to examine the relevance and significance of Public Health Strategy in growth of palliative care globally.
Methodological limitations Numerous methodological limitations were encountered in this study. First was the process of obtaining documents to be analyzed. Standards and guidelines were not readily available and thus extensive search was necessary. This process involved searching the websites of national palliative care associations as well as national agencies of health care (i.e., ministries and departments of health). Also, scholarly sources were used to narrow down the contacts that were used to provide the standards. For instance, the Vietnam standards, an author who has written extensively on the establishment of palliative care in that care was contacted through email. A similar process was used for Ireland‘s standards. Another limitation is that some of the standards found either contained too few details for any meaningful analysis to be conducted or they were available in languages other than English. Translations for these documents were neither unavailable or the countries were reluctant to have them translated. For example, Spain‘s standards were only in Spanish and the country‘s national palliative care association has not readily considered having the standards in English. In such cases, no efforts or attempts were made have translation but rather these standards were excluded from the analysis. After evaluating all the documents obtained, seventeen of them met the criteria for inclusion in the analysis (i.e., they contained comprehensive details and they were in English). Future studies should probably consider translated versions to broaden the views and trustworthiness (i.e., reliability) of the findings. Complexity of the language used in the standards was also a challenge. That is, standards created by professional associations (e.g., physicians) had language that was not easily comprehensible, emphasizing on some domains than others. For examples, U.S. standards were created by joint partnerships of key stakeholders in the U.S. including AAHPM (i.e., a membership association for physicians interested in palliative medicine). It is likely that their input was the reason for the language that was biased on the ‗medical model‘ approaches to palliative care. However, once the concepts relevant to the primary and auxiliary domains were identified, the analysis process proceeded spontaneously. Also, future research may benefit from a standardized basic format or toolkit for developing such standards, a recommendation that was
67
earlier made by Ferrell (2007). International and national agencies in the palliative care subspecialty can be tasked with creating such toolkits. The WPCA and WHO can serve such important role and also developing a minimum definition of palliative care standards. In turn, the quality of care and consequently the quality of life for patients and their families can improve tremendously across the world. Another limitation common with the content analysis analytic approach used merely identifies existence or lack of a pre-determined theoretical construct or concept without explaining or inferring any observed patterns in the data. The standards data examined were mere statements that showed either presence or absence of domains of palliative care (both primary and auxiliary). This type of analysis hardly contributes to the understanding or conceptualization of a set of ideas that represent a construct. Another shortcoming encountered in the process of obtaining documents (i.e., data to be analyzed) was incomplete documents or some available as drafts. In the draft stage, some documents were awaiting approval by health authorities or other agencies. In their completed versions, standards could considerably change in contents and details. One example where an advanced draft was used is Malawi. The decision to use the draft version was made after assurance from PACAM (national association of Malawi) that the draft version was similar as final version and it was waiting final cabinet approval where no significant changes were expected to be made to the document. Lack of a comprehensive list of activities (i.e., to be used as coding scheme) for each domain has potential effect on the reliability of the findings. In content analysis language, reliability refers to stability or consistency in codes used. This was a major challenge in the coding process either because of unavailability of the list of activities indicative of the domains. To overcome this challenge, the coding process involved careful identification of the concepts relating to each of the domains (primary and auxiliary). It was somewhat easy to code some concepts but difficult to code others. For instance, the physical aspects of palliative care were easily identified by terminologies such as ―pain and symptoms management‖ and descriptions of procedures for relieving distress with for a larger extent are cause by physical pain. However, for other domains like psychosocial and spiritual aspects, it required a great deal of caution to carefully identify concepts that define these domains. Overall, coding primary domains was done with relatively much ease than coding auxiliary domains. This can also be explained by the fact
68
that majority of the countries have adopted the WHO definition which was the basis for the primary domains framework.
Recommendations for creating future standards An important consideration to make in creating future standards for palliative care is the prevailing social, political, cultural and economic conditions in the countries (Lassey, et al., 1997). Lunder (2005) had acknowledged this fact that standards are created within countries that have varying socioeconomic, political, and historical conditions. Also, there are variations in health care systems from political, economic, and cultural sense. In addition, palliative care systems are components of health care systems since care is delivered in the same structures. As is the case with cross-national comparisons, this study found that some countries fail to acknowledge their socioeconomic situations and conditions especially for developing nations. As such, developing standards using prototype that is unfit to country-specific conditions pose challenges in creating effective palliative care standards. Therefore, a single template for palliative care standards cannot be applicable across the nations of the world. However, due consideration to countries‘ specific conditions enable the variations across nations to inform the process of creating more culturally sound standards. As earlier discussed, setting global standards of palliative care are impractical and thus tailoring them to the local peoples‘ needs. Standards may also benefit by prescribing a standardized basic format or using toolkit to develop but the content to be made specific to the cultures and countries where they are developed.
Recommendations for future research on standards The number of challenges that confronted the analysis in this study allows an opportunity for further research in the future. Several recommendations for future research in the light of the challenges are: use of alternative type of data and methodology to investigating the frameworks for developing palliative care standards. The alternative data may come from several sources including translating all available standards, interview data, observations, use of archival records, and country-level social, economic, and health quantitative indicators. Such data may increase the trustworthiness and reliability of data. Methods to supplement content analysis approach and to overcome other methodological limitations encountered may include historical analysis, grounded theory approach for theory building (since theoretical development for palliative care at macro-level is absent), and also use of statistical modeling to empirically evaluate the Public 69
Health Strategy that standards were not able to comprehensively evaluate. The next chapter addresses the question of empirical evaluation of the Public Health Strategy, which as recommended in this chapter, the framework should be evaluated to determine whether it has been successful in integrating palliative care into the health care systems. By so doing, considerable limitations would be encountered as those identified in this chapter and provide more solid findings to inform the policymakers both nationally and internationally on standardization of palliative care.
70
CHAPTER THREE SALIENT FACTORS ASSOCIATED WITH GROWTH OF PALLIATIVE CARE SERVICES Introduction Since late 1990s, a comparative view of palliative care development has received growing interest from scholars and researchers around the world (Clark, & Centeno, 2006; Saunders & Kastenbaum, 1997). Most of the country-level comparisons were predominantly conducted in the European region, fostered by a task force of the European Association for Palliative Care (EAPC). In addition, palliative care has its origin in Europe, so growth in that region was greater than elsewhere. These efforts have resulted in studies that showed how different countries in the continent fared in provision of end-of-life care to their terminally ill citizens (see Clark, ten Have, & Janssens, 2000; Gronemeyer, et al., 2005; Jaspers & Schindler, 2005). Other regions of the world have also made similar efforts to compare care for patients facing life limiting and terminal illnesses: Africa (Clark, 2007; Good, et al., 2000; Harding & Higginson, 2005; Harding et al., 2008; Singer, et al., 2000); Asia (Bingley & Clark, 2009; Glass, et al., 2010; Goh, 2008; Maddocks, 2000; Wright, et al., 2009); and Latin America (Bruera, 1993; Moyano, et al., 2008; Torres-Vigil, et al., 2007). Some of the studies have looked at the accessibility and effectiveness of palliative care in reaching the population in need. Other studies have focused on physicians‘ practices and attitudes toward palliative care in several countries. Palliative care education in most countries has also been a subject of inquiry in these comparative studies as the prevalence of terminal and chronic illnesses increase and the need to have a specialty to deal with these conditions rises. Recent efforts have documented palliative care development on a global scale. First was the formation of the International Association for Hospice and Palliative Care (IAHPC) in 1984 (Woodruff, 2001). This initiative was developed not to promote any unique palliative care model but to encourage each country to develop a model that fits their resources and conditions (IAHPC, 2009, 2010). The organization also encourages collaboration between developed and developing countries by sharing expertise and experience accumulated by professionals in developed countries. Also, through its fellowship program, there have been teaching and training in developing countries by professionals from resource rich nations (Woodruff, et al., 2001). The 71
major contribution of this organization has been the establishment of an international palliative care community serving health care professionals and institutions in developing countries (Woodruff, 2001; IAHPC, 2009). This initiative has fostered the development and establishment of palliative care programs in developing countries, hence globalizing the existence of these services. However, no particular studies have investigated the specific factors associated with the development of palliative care services from comparative perspectives. Most of the existing studies compare palliative care in a handful of countries, ranging from three to sixteen. The greatest challenge identified in these studies was the lack of standardized modes of data collection. The methods commonly employed in obtaining country- level data included: ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices; interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers (Bingley & Clark, 2009; Singer, et al., 2000). Other sources of data included: books, journals, newsletters, directories, websites, conference presentations, opinions from local and regional experts, as well as interviews and surveys with hospice facilities and national associations (Harding & Higginson, 2005; Wright, et al., 2006). To a very limited extent, quantitative techniques were employed to investigate correlations among factors related to the establishment of palliative care such as the human development index (HDI). The first attempt to compare a larger number of countries was a 1994/95 survey completed on 116 hospices in 31 nations, conducted by Kastenbaum in consultation with Cecily Saunders, and published in 1997. The sample of countries that responded to this survey was unrepresentative and difficult to generalize on the stages of development of palliative care worldwide. Findings from this survey showed that most of the palliative care activities were centered in the United States and in the United Kingdom (Saunders & Kastenbaum, 1997). Another important finding was that most of the hospice programs were started in the 1980s, two decades after the initial establishment of St. Christopher‘s Hospice, the first modern hospice. This study also highlighted the important historical fact that end-of-life care indeed existed long before to the emergence of the modern hospice movement which gave rise to the current palliative care. The three initial facilities that existed before then were Our Lady‘s Hospice in Dublin, Ireland (1879), Sacred Heart Hospice in Sydney, Australia (1890) and Caritas Christi Hospice in East Melbourne, Australia (1938). Saunders and Kastenbaum (1997) found that one 72
of the important worldwide factors in development of hospice and palliative care development was the vision and leadership of Cecily Saunders, Elizabeth Kubler-Ross, Balfour Mount and other founders of the hospice movement. They also identified intriguing cultural, social, political, and economic differences that shaped the early development of hospice (see Kirn, 1998). A more recent study was conducted by a team of researchers at the International Observatory on End of Life Care (IOELC), which was established at the Institute for Health Research at the Lancaster University in 2003. This was a landmark study because it created an inventory of the levels of development of palliative care globally, providing a comprehensive database containing country-level data. The study adopted comparative methods for reviewing hospice and palliative care activity and used a common template to present research-based reports from countries around the world (Clark, et al., 2007; Wright, et al., 2006). The main sources of these data included epidemiological, demographic, and health systems data gathered from governmental, public health, and nongovernmental organizations. Additional data came from systematic analyses of hospice and palliative care published literature and other web-based sources (Clark, et al., 2007). The data collected from this study were disseminated via a database available on the IOECL website, with countries categorized according to a typology of four levels of development of palliative care. The four levels in the typology are: no known activity; capacity building; localized provision; and approaching integration into the healthcare system. Subsequent to the compilation of that data, Wright and colleagues (2006) conducted a limited number of statistical analyses which included descriptive statistics and correlations between levels of palliative care development and the human development index (HDI), gross domestic product, and crude death rates. The findings indicated that there was a negative correlation between HDI and level of palliative care (Wright, et al., 2006). They also cautioned in interpreting these relationships because even countries with poorly developed systems of health care were found to be in the highest level of palliative care development characterized by broader awareness of such services and their impact on public health policy. However, this is not the case in some developing countries; for example, South Africa, Uganda and Kenya have low HDI, but palliative care services are approaching integration with the health care system, and were classified among countries in highest level in the typology. There is, however, heightened awareness and activism in some countries that may influence the association between the country-level measures used by Wright and colleagues 73
(2006). Such interrelationships require further investigation for causal relationships in how they influence countries to establish or adopt these services. In addition, the IOELC study did not report the statistical significance nor the magnitude of effects of the predictors employed. Thus, a critical gap in palliative care literature that can be investigated using the IOELC data is the relative importance of factors that are associated with the levels of development of palliative care services identified by Wright and colleagues (2006). The current study will, thus, build on the work of Wright and colleagues by employing statistical analyses to investigate which, among sets of country-level variables, are significantly associated with the presence or absence of palliative care in any given country. No previous studies have employed country-level statistical analyses to investigate the factors associated with palliative care development.
Factors associated with the development of health care systems A discussion of the factors and contexts that enable evolution and revolution of general health care systems is pertinent to the current study because, usually, palliative care is built on the existing structures of health care systems (Clark, et al., 2007; Stjernsward, 2007; Stjernsward, Foley & Ferris, 2007a, b; Wright, et al., 2006). As such, the factors that shape general health care systems are likely to apply in the establishment of palliative care. These factors are broadly categorized as cultural, economic, political, and historical (Lassey, Lassey, & Jinks, 1997; Roemer, 1991, 1993; Sanders, 2002). A further argument by Lassey and colleagues (1997) pointed out that well-defined structures of the health care system ensure equitable delivery and access to health care services. Similarly, to improve the access to or availability of palliative care services to the populations who needs them, the Public Health Strategy suggests the integration of palliative care services into the mainstream health care systems at all levels (Stjernsward, Foley, & Ferris, 2007a). The aim of this approach is to protect and improve the health and quality of life of the patients, their families, and communities. This framework identifies four components that ensure palliative care is integrated into the health care systems so as to enhance the health outcomes of the patients and families: a) appropriate palliative care policies; b) adequate palliative care drugs policy; c) education of health care workers, volunteers and the public; and d) implementation of palliative care at all levels of the society. Since palliative care is a component of the general health care system, the factors that influence the development of palliative care in any country are similarly embedded in the
74
political, economic, historical and cultural structures of any given country. However, the contexts suggested for implementation of palliative care under the Public Health Strategy and the factors responsible for the evolution and revolution of health care systems overlap to some degree. The suggested contexts are: culture; disease demographics; socioeconomics; and health care systems. Lassey and colleagues (1997) argue that culture is a key element in evolution of health systems because the traditions, values, beliefs, attitudes and family structures affect the kind of health system that evolves. For instance, European countries focus on national and community responsibilities to provide health care, while in the U.S. such responsibility is driven by respect for individual autonomy (Lassey, Lassey, & Jinks, 1997). However, the assertion on European approach may somehow differ given there are different political ideologies employed by the European nations. Social influences are also closely related to cultural influences with family playing a significant role in health care. Political systems in a country as mirrored by history, culture, and demographics, influence the major decisions about organization and financing of health care systems. Economic factors are also important as reflected by a number of indicators, including the level of expenditure on health care and gross domestic products. Wealthier nations rank higher in these indicators, and hence, their health care systems are better developed (Lassey, Lassey, & Jinks, 1997; Sanders, 2002). The conceptual schema shown in Figure 3.1 below shows the interrelationships among the economic, political, historical, demographic, and cultural aspects and their influence on the development of health and palliative care systems.
75
Demographic factors
Economic factors Cultural factors
Development of health care
Development of palliative care
Political factors Historical factors
Figure 3.1: Interrelationship between factors related to development of health and palliative care systems
Figure 3.1 is a depiction of various interrelationships between the factors that shape health and palliative care summarized from a discussion by Lassey and colleagues (1997). The interaction of historical and cultural characteristics leads to a definition of what is health and health care provision from a family/societal perspective (Lassey, Lassey, & Jinks, 1997). The policy formulation process for organizing and financing health care is informed by the political, historical, and cultural aspects. The level of financing and other economic features of health care system are the interplay of political and economic forces (Roemer, 1991; Sanders, 2002). Demographic factors, as influenced by the cultural and economic factors, play a role when nations design the health care systems. As argued from the literature that the structural components influence health care systems evolution, the conceptual model presented in Figure 3.1 makes a similar hypothetical assertion that the same factors have an influence on the establishment of palliative care. Further, literature has shown that the primary motivation for development of palliative care programs of a particular type in many countries is the need to control morbidity, disability and mortality (Wright, et al., 2006). Additionally, other factors may influence the establishment of such programs, which are either directly or indirectly related to palliative care and the general health care systems (WHO, 2000). These include demographic indicators (e.g., population structure, population growth, population densities), socioeconomic indicators (e.g., economic growth rates, gross national income) and health indicators (e.g., diseases prevalence, mortality 76
rates), in addition to the overall design of health care systems (Lassey, Lassey, & Jinks, 1997). Although traditionally members of societies have been involved in caring for the sick and the dying (Wright, personal communication, March 9, 2010), the emergence of progressive diseases such as HIV/AIDS, cancer and other incurable illness have brought challenges to health care delivery systems (Connor, 2009; Clark, 2007). The management of these progressive diseases has psychosocial and economic implications, requiring societies to provide continuum of care in innovative ways to improve the quality of life of the patients (Clark, et al., 2007). Thus, systems of palliative care have emerged in order to attempt to alleviate the problems associated with advanced disease. Theoretical developments at a macro-level for palliative care have been limited as discussed elsewhere in this study (see pp. 69). This limitation also complicates the cross-national comparisons as earlier discussed that these comparisons have appeared only recently. Palliative care has been recognized as an academic field fairly recently, where, unlike in established disciplines, theories have not yet been developed to guide research and advance palliative care education. While theoretical frameworks in health related disciplines such as public health may be available, their relevance in palliative care at a micro-level may as well be limited. This is because most of the theories in health-related disciplines focus more on patients and care settings (i.e., micro-level). For example, a majority of the theories of death and dying relate to health care workers attention to the dying patients care and none relates to national level policies on the subject matter (Copp, 1998). Due to this limitation, this study will employ the Public Health Strategy, a macro-level framework discussed earlier to guide this study (see chapter 2 section on guiding frameworks). The research question to be answered is: what are the salient factors associated with presence or absence of palliative care in countries around the world?
Revisiting the Public Health Strategy framework As identified earlier in the literature and in the study on palliative care standards (see Chapter 2), the WHO advocates for the evolution and growth of palliative care services within the existing structures of health care systems. This call is meant to improve access to these services without developing sophisticated and specialized infrastructure for palliative care. The study on palliative care standards examined the application for the Public Health Strategy framework to existing standards. Among the four components of the Public Health Strategy, it
77
was only the education of health care workers that was found to be consistent across all nations examined. The qualitative data employed were statements outlining how palliative care should be delivered without explaining the important factors that enable palliative care to be implemented and integrated into the existing structures of health care system. The Public Health Strategy suggests implementation of palliative care in the contexts of culture, disease demographics, socioeconomics, and health care systems of any given country (Stjernsward, Foley & Ferris, 2007a, Gwyther & Krakauer, 2009; Sepulveda, et al., 2002). This range of contexts is comparable to that suggested by Lassey and colleagues (1997) (i.e., cultural, economic, political, and historical) with the exception of disease demographics for the evolution of health care systems. Similarly, Milton Roemer in his seminal work, National Health Systems of the World, identified economic output, political culture, and history to be the key determinants of a country‘s health care system (Sander, 2002). There, is therefore, convincing evidence that a set of identifiable factors can help explain the evolution of health care systems in any given country. But a notable gap in the literature is the lack of empirical studies to explore which factors are significant in the establishment and development of palliative care. The current study will bridge this gap by employing statistical modeling to investigate which of these country-level contextual factors are important and will thus provide an empirical examination of the Public Health Strategy. The quantitative data available for all countries contain both actual and proxy measures that mirrors the conditions/factors suggested by the Public Health Strategy framework. Proxy measure, for instance, include those indicators that closely represent a factor or a set of factors. For example, the only data available for risk factors is average alcohol consumption and access to clean water. On the one hand, these measures may be indicative of lifestyle and better standard of living while on the other they predispose health, thus making them important proxy measures for this study.
Methods This study employed descriptive, bivariate, and multivariate statistical analysis to investigate the important factors responsible for presence or absence of palliative care in countries around the world. There were a range of independent variables that were either direct or proxy measures of the four contexts of culture, socioeconomics, disease demographics, and health system identified by Stjernsward, Foley & Ferris (2007a) for the implementation of Public
78
Health Strategy. However, due to unavailability of appropriate measures to reflect the context of culture, which is widely variable across and within countries, a single indicator was created. Since it was inappropriate to have a model with only a single predictor, the proxy measure for culture was included in the model for socioeconomics indicators. Thus, a total of three logistic regression models were employed: the socioeconomic model, disease demographics model, and health system model. A fourth combined model included all the significant variables from the three separate models.
Data sources The current study used country-level data for countries that are member states of both the World Health Organization and the World Bank. Although comprehensive list of countries in the world recognized by the United Nations average around 192 countries (World Atlas, n.d.), there is disagreement in determining the total number of politically independent states in the world. Depending on the source, there is no agreed upon number of countries in the world (World Atlas, n.d.). For instance, some lists include semi-autonomous states such as Taiwan and Hong Kong; areas; protectorate islands; and territories as independent states. The most common sources for the list of countries in the world are: U.S. Department of State, which in 2009 had a list of 194 countries; the United Nations (lists 195 countries); the WHO Factbook (lists 192 countries); and the World Bank (lists both small economies and politically independent countries totaling 208); and some almanacs which have 193 countries but the autonomy status of nations such as Kosovo, Greenland, Palestine and Western Sahara is not clear (World Atlas, n.d.);. Conventionally, there are about 200 nations in the world that are recognized as politically independent states, even though sovereignty of some of the states is not easily established even from authoritative sources such as United Nations, U.S. Department of State, or the World Bank. Examples of countries with contentious sovereignties include: Taiwan, Channel Islands, and Guernsey Hong Kong, Vatican, Pitcairn Island, Cook Islands, Isle of Man, and Puerto Rico. Appendix A is a list of 208 countries classified according to their income levels by the World Bank. The number of countries in this study The countries included in this study were those that had complete data from the WHO and the World Bank. In total, the WHO data has 192 member states and the health statistics data
79
were available for all the 192 countries for a range of years from 2002 to 2006. The WHO data included most of variables used for this analysis with only a few cases with missing data. Similarly, the 2006 World Bank‘s World Development Indicators (WDI), a comprehensive dataset that contains 900 indicators available for 152 economies with populations of more than 1 million and another 56 small economies with populations between 30,000 and 1 million (World Bank, 2006), contained indicators used in this study most of which were reported in 2006. In total, the WDI dataset had 208 countries. The WHO dataset was used as the principal data file and country data from other sources were added to it. Therefore, the final sample size for this study was 192 countries. In general, the WHO dataset were used for demographics and health measures and the World Bank provided data on social and economic indicators. A few other measures for all 192 countries were constructed using other information. Standardization of datasets The World Bank and the WHO acknowledges the systemic challenges when comparing country-level data in their efforts to collect comparable data from around the world. Some of these challenges include: non-existent or weak statistical systems in developing nations; differences in definitions, practices, and statistical methods employed; and complex conceptual and intertemporal problems across the countries that cannot be equivocally resolved (World Bank, 2006). Also, data coverage may not be complete because of exceptional circumstances such as countries experiencing economic or political problems, thus affecting data collection. For these reasons, although data are drawn from the sources thought to be most authoritative, data should be construed as indicating trends and characterizing major differences among countries rather than offering precise quantitative measures of those differences (World Bank, 2006). To overcome these challenges, both the World Bank and the WHO employ numerous ways of ensuring data is reliable, valid and consistent. Thus, the quality of data for independent variables to be analyzed in this study has been established by both World Health Organization and World Bank. For the World Bank‘s 2006 WDI data, although considerable effort was made to standardize the data for 2006 development indicators, the World Bank cautions care when interpreting the indicators (World Bank, 2006). Exact comparison of years of data collection is also a challenge in a study when using multiple data sources. The WHO‘s World Health Statistics from a range of years (2002 to 2006) were employed in this study. The main reason for this was because the data used to create the 80
dependent variable for this study was collected from 2003 to 2006, which enabled comparability of the WHO and World Bank data with the dependent variable based on the prevailing social, economic, and political conditions in all the countries. The WHO gathers from publications and databases of the WHO‘s technical programmes and regional offices. The indicators published in this dataset were selected on the basis of relevance for global health systems, social and economic indicators, disease demographics as well as their availability and quality. The statistics for the indicators are based on an interactive process of data collection, compilation, quality assessment, and estimation between WHO technical programmes and its member states. This process strives to maximize accessibility, accuracy, comparability, and transparency of the health statistics. All data are the WHO official figures, obtained in consultation with member states unless such efforts were not successful and data were statistically estimated (WHO, 2006). A comprehensive summary of all the variables employed in this study is provided in Table 3.1, showing the sources of each kind of data and the years when they were measured or collected. Table 3.1: Data sources for different variables and years when collected Variables Source/Agency Year collected Presence/absence palliative care IOELC 2003 – 2006 Adult HIV prevalence rates WHO 2005 Years lost to non-communicable diseases WHO 2002 Alcohol consumption per capita WHO 2005 Access to water WHO 2002 Age-standardized cancer mortality WHO 2004 Age-standardized HIV mortality WHO 2004 GDP per capita growth World Bank 2006 Income level World Bank 2006 Old age dependency ratio World Bank 2006 Population density World Bank 2006 Population growth rate WHO 2004 Commonwealth membership The Commonwealth Secretariat 2009 Political/cultural Pearson Education 2007 Government expenditure on health care The World Bank 2006 External health expenditure The World Bank 2006 Out-of-pocket health expenditure WHO 2006 Social security on health expenditure WHO 2006 Per capita health expenditure WHO 2006 Density of health workers WHO 2003 Hospital beds coverage WHO 2005
81
Besides the WHO and the World Bank, a few other sources were consulted to provide data for constructing some measures. The Pearson Education, Inc. provided data for construction of proxy measure of political/cultural influence on the establishment of modern health care while the Commonwealth Secretariat provided data of the countries who are members of the Commonwealth of Nations. The outcome variable was also created based on a four-level typology for the development of palliative care activity that was developed by researchers at the International End-of-Life Care Observatory (IOELC) at the Lancaster University, United Kingdom authored by Wright and colleagues (2006). This typology identified the level of development of palliative care activities in 234 countries and territories. The four levels are: no known activity; capacity building; localized provision; and approaching integration. To ensure effective comparability of data across countries and regions, IOELC study adopted comparative methods of reviewing palliative care activity and used a common template to present research- based reports for all the countries identified to have palliative care activity (Wright, et al., 2006). IOELC employed correlations between the level of palliative care development and the gross domestic product (GDP), human development (HDI) and crude death rates to establish validity and reliability of the measure they created. HDI is a multiple measure for human development based on longevity, knowledge, and standard of living (Wright, et al., 2006; Chakravarty, 2003). IOELC data was collected from 234 countries, which included semi-autonomous nations and independent island territories. Recoding was done only to include the 192 countries in the WHO principal data file. Merging and cleaning the datasets All WDI and WHO datasets are publicly available at the two organizations‘ websites were downloaded as Microsoft Excel 2007 files (Microsoft Corp., 2007). A third dataset, also in Microsoft Excel was created for a range of variables, including, the dependent variable, the commonwealth variable and political/cultural variable. A country identifier variable (country ID) was created in all the three data files and used as the common variable for merging the data. The separate Excel files were individually imported into SAS version 9.2 (SAS Inc., 2009) and merged into a single data file. The main data file for merging was the WHO data, which had 192 countries (i.e., cases for this analysis) across all variables. Countries in the other two data files (WDI and the categorical variables file) which did not match the main WHO data file were automatically not added to the main file. Data cleaning step involved checking for errors in 82
variable labels and missing data using frequency and univariate procedures in SAS. Also, using print procedure in SAS to check the country names and country identifiers (the merging variable was a numerical country ID). Numerous variables, especially those in the WDI data file were found to contain missing values that ranged from 2 % to 9 % for variables of interest. The next section explains the treatment of cases with missing data.
Data recoding and missing data strategy Comparability and reliability of the data across countries had been established by both the World Bank and World Health Organization but there were multiple cases that had missing data. In the original gathering of data, the World Bank imputed data where possible with simple totals, median values, weighted averages or simple averages for countries that did not report their data or where statistics were unavailable (World Bank, 2006). According to WHO (2006), the estimates for 2002 to 2006 World Health Statistics were derived from multiple sources, depending on each indicator and the availability and quality of data. In many countries, statistical and health information systems are weak and the underlying empirical data may not be available or may be of limited quality. Every effort was made to ensure the best use of country-reported data. Due to the size of the sample for this study (around 192 countries), a strategy for dealing with missing values was necessary. For the variables with missing values in all data files, the WHO and World Bank had adjusted data where necessary to deal with missing values, to correct for known biases, and to maximize the comparability of the statistics across countries and across years. In addition, statistical techniques and modeling were used to fill data gaps. In this method, data is imputed using data from other observations in other sources (Altmayer, 1999; Andridge & Little, 2010). To ensure comparability across years with the outcome variable, data used were from 2002 to 2006. Most of other variables from the 2006 WDI and WHO health statistics had missing data ranging from 3 to 37 countries with missing cases on various variables. Since the World Bank and WHO had originally imputed the data when collecting it, no further imputation was done in this study. The logistic regression procedure in SAS automatically excludes cases with missing data from the analysis. For instance, the HIV prevalence rates for 37 countries were not available in the WHO statistics. Attempts to impute using the WDI data were also not feasible because the WDI dataset had similar number of missing data. Attempt to find HIV prevalence data from
83
other sources such as United Nations Joint Programme on HIV/AIDS (UNAIDS) led to similar problem of missing data. This may be from the fact that some countries have low prevalence rates of HIV or never report these data for reasons identified by WHO and World Bank for unavailability of data. Another important variable with missing data was the old age dependency ratio variable. This is a very conceivable measure for international comparisons for population aging as opposed to proportion of people above age 65 (Swanson, Siegel, & Shryock, 2004), the few missing cases were not imputed. Conventionally, the old age dependency ratio is calculated using the formula (population below 15 and population above 65/working age population (15 – 64)). Although the WHO dataset contained age structure for 65-plus population, the age dependency ratio was calculated using age structure data from World Health Statistics 2006 (the only the dataset with age structure for all the countries). The two reasons for not imputing the 65- plus measure were 1) the sample size was adequate enough even with missing cases (i.e., > 150 cases in all variables) for statistical significance at a p-level of .05 and 2) imputation at this stage would create more bias in estimating standard errors and coefficients since both WDI and WHO had imputed data in the original data gathering.
Measures Several measures for the dependent variable and covariates came from several sources as described.
Dependent variable The dependent variable was based on the IOELC study‘s four-level of palliative care development typology. The four levels indicated that all countries in the world were at different stages of development for palliative care service. These levels are: a) no hospice-palliative care activity known; b) capacity building activity but no service available yet; c) localized provision of palliative care services but not available to the whole population; and d) palliative care activities are approaching integration with the mainstream health care systems (see Appendix B for descriptions for each of these levels). The distribution of the 234 countries and economies whose level of palliative care development as categorized by the IOELC study were as follows:
a. no known activity (n = 78) c. localized provision (n = 80) b. capacity building (n = 41) d. approaching integration (n = 35) 84
The dependent variable, ―presence of palliative care services‖ was developed using the information from the typology. It was clear from the typology that countries in levels 1 and 2 had no palliative care services at all while countries in levels 3 and 4 had some kind of services although level 4 had more integrated services than level 3. Therefore, presence of palliative care services was coded as a dichotomous variable, where level 1 and 2 were coded ‗0‘ and levels 3 and 4 were coded ―1‖. Thus, it was appropriate to use binary logistic regression because the outcome variable was dichotomous (Agresti, 2007; Long, 1997; O‘Connell, 2006). Recoding for the dependent variable was only done for countries in the principal WHO data file (i.e., 192), where 101 countries were in category ―1‖ and 91 countries were in category ―0‖. 28 countries that were in the IOELC data were dropped for levels 1 and 2, and 14 countries dropped from levels 3 and 4.
Independent variables Three categories of explanatory variables were employed to predict which among many factors are significant in the presence or absence of palliative care in any given country. These independent measures reflect the four recommended contexts in which palliative care should be implemented and integrated into the healthcare systems according to the literature (Sepulveda, et al., 2007; Stjernsward, Foley & Ferris, 2007a). The four contexts as earlier identified are culture, disease demographics, socioeconomics, and health care system. However, given a lack of measures that accurately reflect culture, one measure was created based on the political and cultural influence by the process of colonialization and included in the model for socioeconomics context. Thus, the three categories of independent variables are: disease demographics (i.e., cause-specific mortality rates and prevalence of chronic and terminal diseases), socioeconomic and demographics, and health systems. To ensure uniformity and comparability of data across years and sources, the WHO and World Bank data were used only for years when IOELC data was collected (2003 – 2005). The exception was the source for creating the political/cultural variable (i.e., Pearson Education, 2007; see Appendix E) where data was for 2007.
Disease demographics measures The study sought to understand how disease demographics influence the establishment and development of palliative care services by countries. Stjernsward, Foley & Ferris (2007b) identified mortality rates and proportion of patients with advanced diseases as some of the
85
measures under this context. Mortality rates data from various causes including for illnesses that are common in palliative care (i.e., Cancer and HIV/AIDS) are available for most of the countries. However, morbidity data for these illnesses except HIV prevalence rates are not readily available from the WHO. (Other morbidity data is available for tuberculosis and poliomyelitis, which are infectious in nature and not commonly featured in palliative care). Instead, risk factors (e.g., alcohol consumption and improved access to clean water) that are precursor to ill health were used as measures in the disease demographics model. These measures in this model were: Adult HIV prevalence rates for the year 2005 measured as the number of HIV cases per 1000 people in the population. As earlier identified, some countries do not report their HIV prevalence rates. Percent of years lost to non-communicable diseases (for 2002) is measured as the percent of the years of life lost (YLLs), taking into account the age at which deaths occur by giving greater weight to deaths occurring at younger ages and lower weight to deaths occurring at older ages. YLL is a measure of years of life lost for people who die prematurely (before the average life expectancy for their age). The contribution of particular kinds of diseases to YLL is an indicator of the disease burden in a country. A country in which a high percentage of YLL is attributable to communicable diseases will likely be suffering the burden of contagious and epidemic diseases, while a country in which YLL is largely attributable to non-communicable diseases has likely moved beyond the stage of high rates of infectious diseases to the stage of degenerative and chronic diseases. In conceptualizing this measure, the WHO classifies all the causes of mortality into three broader categories (i.e., communicable diseases, non- communicable diseases, and injuries). This study uses the percentage of YLLs for non- communicable because of its importance in palliatable diseases. Alcohol consumption per capita is the amount of pure alcohol consumed in litres per person per year among adults aged above age the 15 years. This variable is included in the model because alcohol consumption is a risk factor in numerous chronic illnesses also is associated with socioeconomic status. Its effect, it tested both the disease demographics and socioeconomics models. Access to clean water is measured as the percent of the people in the population that have access to clean and improved sources of water for both rural and urban areas. Age standardized cancer mortality rates (for 2004) are age-standardized death rates per 1000 people in the population from all malignant neoplasms (i.e., forms of cancers). HIV mortality rates (for 86
2004) are age-standardized death rates per 1000 people in the population from HIV/AIDS. The criteria for including the two cause-specific mortality rates is because all-cause mortality rates were highly correlated with the years lost to non-communicable diseases indicator. That is, all- cause mortality rates is a combination of a range of mortality causes, thus, it is convincing to include only the important cause-specific mortality rates. In addition, as pointed out earlier, HIV and cancer are the two illnesses that prominently featured in the palliative care discussions.
Socioeconomics and demographics measures The influence of social, political, economic, and demographics indicators as measures of economic development in any given country to the establishment of palliative care is examined in this model. For the socioeconomic context, Stjernsward, Foley & Ferris (2007a) identified social and family structures, income levels, religions, social action networks, and nongovernmental organizations in the area of palliative care. As mentioned earlier, it is challenging to find country-level data to reflect this range of socioeconomic indicators. However, direct as well as proxy measures were used to reflect the socioeconomic circumstances as the most feasible approach to this modeling. The measures for this model included: GDP per capita growth is the annual growth rate (in percent) in the gross domestic product (GDP) per capita measured by current international dollars at purchasing power parity (PPP). Using national incomes at PPP ensures that the gap between richer and poorer nations is unexaggerated and the income estimate is not biased (Anand & Bärnighausen, 2004; Lassey, Lassey, & Jinks, 1997). The benefit of using the GDP per capita measure is that it is adjusted for population size, and thus, it a fair comparison across nations in terms of output per person (World Bank, 2006). Income level is a measure of economy classification developed by the World Bank based on the gross national income (GNI) per capita into four categories of low income, middle lower income, middle upper income, and high income for 2006. This variable is a categorical variable with the four levels coded as 1 to 4 respectively. Low income economies were coded ‗1‘; middle lower income economies were coded ‗2‘; middle upper income economy were coded ‗3‘; and high income economies were coded ‗4‘. Income level is a control variable in this model and it was moderately correlated with GDP per capita growth. Old age dependency ratio is a measure of population aging expressed as a ratio of the number of older dependents (i.e., people age 65 and older) to the working-age population (i.e.,
87
people age between 15 and 64). Even though population aging may not necessarily mean presence or absence of terminal and chronic illnesses that require palliation, it is necessary to determine how population aging impacts the presence or absence of palliative care services in any given country. As noted earlier in the literature, palliative care is usually provided to people of all age groups in a population because palliatable diseases are not age-specific. Thus, it‘s imperative to investigate the influence of population aging to the establishment of palliative care services. Population density is measured as the number of people in the population per square kilometer. This measure was included in the model to control the effects of other demographic indicators (i.e., population growth). Also, the literature shows palliative care is developed in urban areas where density is likely to be higher. Due to some outliers on some of the cases creating skewness, population density was transformed using natural logarithms to have this variable normally distributed and to avoid bias in estimation of the coefficients and inflating the standard error as a result of the outliers. Average annual growth rate measured as the exponential annual change in population expressed as a percentage (World Bank, 2006). Commonwealth is a dummy variable that was constructed to examine whether palliative care services has diffused to other members of the British Commonwealth of Nations due to the origin of palliative care in Great Britain in 1960. The importance of this measure in this study is to examine the diffusion of palliative care through the commonwealth, which is a voluntary association of 54 independent states working together in the common interests of their citizens for development, democracy, freedom, peace, rule of law and opportunity for all set and agreed upon by the Commonwealth heads of government (The Commonwealth Secretariat, 2009). Most member states of the Commonwealth are the former British colonies, hence the need to examine whether membership to commonwealth may have impact Countries that are members of the Commonwealth are coded ‗1‘ while non-members were coded ‗0‘. Appendix E has a list of the countries that are members of British Commonwealth. Due to a lack of data to reflect the concept of culture for integrating palliative care into health care system as suggested by Stjernsward, Foley & Ferris (2007a), a proxy measure that combined the historical, colonial, and political aspects of palliative care was created based. This indicator was based on whether a country was colonized by a Western European power in the 19th and 20th century, when the development of modern medical practice evolved (Enderle, Bronzino, & Blanchard, 2005). Colonialization by Western European nations (Roemer, 1993) 88
and arrival of Christian Missionaries in African and Latin America have influenced the evolution of modern health practices in other parts of the world (Baidoo, 2009). Colonialists were typically from Britain, France, Spain, Portugal, Germany, the Netherlands, and Belgium. In coding the ‗political/culture‘ variable, the criteria used was a manifestation of whether a country was colonized by any of these colonial powers if they use a Western European language as a national language (see Appendix E for list of languages used in all countries). The dummy variable had countries that were colonized and use a Western European language as first or second language coded ‗1‘ and those uncolonized and use native languages as either first or second language coded ‗0.‘ The complexity of creating this variable was that there is no comprehensive list of countries colonized by Europeans especially those of the Asian region. All Western European colonizers were also coded as ‗1‘ to mean that they had modern medical practices and they may have influenced their colonies to adopt these practices. This variable was included in the model for socioeconomic indicators because the social, economic, cultural and political conditions of any given nation are intertwined.
Health care system measures Whereas health care design in each country is influenced by a host of economic, political, historical and cultural forces (Lassey, Lassey, & Jinks, 1997; Sanders, 2002; Wright, et al., 2006), this study examined how the organization and financing of health care is impetus to presence or absence of palliative care services. Stjernsward, Foley & Ferris (2007a) identified financing of health care delivery, health care personnel, medications and therapies, medical equipment and supplies as the main components of healthcare context under which palliative care is to be implemented into the general systems of health care. This study employed several measures in the health systems model. Health expenditure per capita is measured as the total healthcare expenditure divided by the total population in international dollars ($) at PPP (World Bank, 2006). As Anand and Bärnighausen (2004) identified earlier, comparing income and expenditures at PPP has the advantage of containing the disparity between richer and poor nations and also ensure the estimated coefficients are unbiased. Government expenditure health care is the amount government spends on health care expressed as a percentage of the total expenditure on health for 2006. Total expenditure on health care consists of both private and public expenditures (World Bank, 2006).
89
Out-of-pocket expenditure is measured as the percentage of health care expensive paid privately for 2006. Out-of-pocket health expenditure consists of direct outlay by households, gratuities and in-kind payments to healthcare practitioners and suppliers of pharmaceuticals, therapeutic appliances, and other goods and services that are aimed at restoration of health status of individuals or populations (World Bank, 2006). Social security expenditure on health is measured as the percentage of the government expenditure that comes from compulsory health insurance for 2006. External resources for health measured as a percentage of total expenditure on health for 2006. External resources are funds or services in kind that are provided by entities that are not a part of the country under consideration. These resources come from international organizations, other countries through bilateral and multilateral arrangements and foreign nongovernment organizations (NGOs) (World Bank, 2006). It is worthy to note that the external resources for health care data are mostly reported for developing nations. Since the all the financing ratios employed are not mutually exclusive, the external resources measure control for the effects of other variables measuring financing structures. Number of hospital beds is measured as the number of hospital beds per 1,000 in the population. Hospital beds include in- patient beds available in public, private, general, and specialized hospitals and rehabilitation centers for both acute and chronic care (World Bank, 2006). Health workers density reflecting the combined density of physicians and nurses for 2003 is the number of physicians per 1,000 and number of nurses per 1,000 people in the population.
Data analysis Data analysis involved three distinct levels of statistical analyses: descriptive statistics for all categories of independent variables; bivariate statistical analysis by presence or absence of palliative care employing chi-square (for categorical variables) and t-tests (for continuous variables) and multivariate statistical analysis using binary logistic regression models for the three sets of measures reflecting the contexts suggested by Stjernsward, Foley & Ferris (2007a). Logistic models regressed the presence/absence of palliative care services on a range of independent measures for each model. Logistic regression was appropriate for this analysis because the outcome variable had two categories (i.e., presence or absence of palliative care), and thus, not enough categories for linear regression (Agresti, 2007; Allison, 1999; Long, 1997).
90
The interaction effects for the variables that are likely to be interdependent were tested in the socioeconomics model.
Results Descriptive statistics for disease demographics The descriptive statistics for all the independent variables were obtained for three separate categories of measures: disease demographics measures, socioeconomic measures, and healthcare system measures. These descriptive statistics include the means, standard deviation, minimum and maximum values, and number of cases for all independent variables. As pointed out earlier, there is no particular source of authoritative country-level data that contains HIV prevalence for all the countries. The WHO data reported HIV prevalence for 155 countries in 2006. However, countries with missing values for HIV were those likely to have very low prevalence especially the small island nations and Middle East nations. All countries with missing data for HIV were imputed with an arbitrary non-zero value of 0.5. Table 3.2 presents the descriptive statistics for disease demographics independent variables.
Table 3.2: Descriptive Statistics for Disease Demographics Indicators ______
Variable Name Variable description N Mean SD Min. Max. Adult HIV prev. *Adult HIV prevalence (per 1,000) (2005) 192 17.54 44.56 0.50 344.57
Years lost to non- Years of life lost to non-communicable diseases 191 47.40 26.41 4.00 87.00 comm. disease (%) (2002)
Alcohol consump. Alcohol consumption among adults aged above15 191 5.15 4.19 0.00 16.20 per capita years (liters of pure alcohol per person per year)
Access to water Access to clean water (%) (2002) 192 82.11 16.19 15.00 100.00
Cancer mortality Age-standardized death rates per 1000 from all 192 1.29 0.35 0.52 3.06 rates malignant neoplasms (2004)
HIV mortality rates Age-standardized death rates per 1000 from HIV- 192 0.84 2.38 0.00 21.44 AIDS (2004)
*WHO in 2006 reported adult HIV prevalence rates for 155 countries; data for 37 countries were imputed. N = number of cases; SD = standard deviation; Min. = minimum value; Max. = maximum value.
91
As it is illustrated in Table 3.2, most of the disease demographics measures had low missing data except for adult HIV prevalence rates which had about 20 percent missing cases. This high proportion for missing data is explained in part by the fact that by 2005, only 60 percent of the countries in the world had adequate surveillance system for HIV/AIDS which reported their statistics to WHO (WHO, 2006) and in part is the fact that prevalence in some countries is insignificantly small in as observed in the WHO data. Even with this high proportion of missing values, and due to the importance of this indicator in palliative care especially in sub- Saharan Africa (APCA, 2007; Clark, et al., 2007; Connor, 2009; Downing, Powell, & Mwangi- Powell, 2010; Krakauer, et al., 2007; Mmbando, et al., 2007; Singer, et al., 2000; Stjernsward, Foley, & Ferris, 2007a), it was conceptually sound to include HIV prevalence in the analysis. The HIV prevalence rates across all countries ranged from <1.0 to 345 per 1,000 population, with a mean of about 18 people living with HIV cases per 1,000 population (SD = 44.56). Most of countries with high prevalence are from the sub-Saharan Africa, for example, Botswana is 236 per 1,000 population, Malawi is 125 per 1,000 population and Swaziland is 345 per 1,000 population. The percent of years lost to non-communicable diseases, a measure of burden of disease in terms of the proportion of years of life lost to non-communicable diseases, ranged from 4 percent to 87 percent, implying that countries on the upper bound experienced significant cases of premature mortality. The mean percent of years lost to non-communicable disease for 2002 was 47.4 percent, implying that nearly half of the years of life lost are due to non-communicable diseases. For example, the percent of years of life lost to non-communicable diseases in Australia is 78 percent; in Denmark is 86 percent; in Yemen is 28 percent; and in Nicaragua is 36 percent. It can be seen there are higher proportions of years of life lost to non-communicable diseases in developed nations unlike in the developing nations where proportions are relatively lower. This observation relates to an argument made by Webster, Lacey and Quine (2007) that majority of the deaths in developed nations are from non-communicable diseases. In the developing world, however, lack of prevention measures such as surgery, chemotherapy, and radiation therapy leads to excessive premature deaths from non-communicable diseases. The average alcohol consumption across the world ranged from 0.0 to 16.20 liters per person per year in the population, with a mean of 5.15 liters per person per year of pure alcohol (SD = 4.19). Although alcohol consumption per capita is an aggregate measure, at the individual 92
level, it has been associated with a number of health issues that are likely to require palliative care such as cancer. The percent of people accessing clean water in 2002 ranged from 15 to 100 percent with a mean of 82.11 percent. Although lack of clean water is mostly associated with infectious diseases, improved access to clean water has been associated with better health benefits (Skolnik, 2008). Alcohol consumption per capita and access to clean water measures were included in this model to reflect the risk factors suggested by Stjernsward, Foley and Ferris (2007a) and also to control for the effects of the other measures in the model (more discussion of this in a later section). Age standardized cancer mortality rates ranged from <1 to 3 people per 1,000 in the population with a mean of about 1 person per 1,000 (SD = 0.35). Similarly, the age standardized HIV/AIDS mortality rates ranged from 0 to 21 people per 1,000 in a population, with a mean of about 1 per person per 1,000 (SD = 2.38). Although available data show that there are higher number of deaths from Cancer (6 million annually in 2006) and relatively lower number of deaths from HIV/AIDS (3 million annually in 2006) (Stjernsward, Foley & Ferris, 2007a; Webster, Lacey, & Quine, 2007), it is clear that Cancer mortality rates are evenly distributed across all the nations whereas HIV/AIDS mortality rates are higher in some nations than others especially those of sub-Saharan Africa (Clark, et al., 2007; Connor, 2009).
Descriptive statistics for Socioeconomics and demographics measures The social, political, demographic, and economic indicators of any nation are important to understand the dynamics of development of any kind. In this case, it is the development of health and palliative care. Economically developed and wealthy nations tend to have greater investment in health care implying that the health care systems in these nations are advanced (Sanders, 2002). However, there is great disparity of health care spending between richer and poorer nations. The spending gap when comparing developed and developing nations is arrested by quoting the expenditure ratios at PPP rather than reporting at the current market exchange rates in US$ (Anand & Bärnighausen, 2004). However, Sanders (2002) points out that other factor (e.g., political ethos, culture) influence government involvement in health care spending. This argument is extended to palliative care where also national governments have varying priorities in spending. Hence, statistical modeling will be used to investigate this argument. The
93
descriptive statistics are given in Table 3.3, showing a range of social, economic, demographics, political, and cultural indication that affect establishment and development health care.
Table 3.3: Descriptive Statistics for Socioeconomics and Demographics Indicators ______
Variable Name Variable description N Mean SD Min. Max. GDP per capita *GDP per capita growth (annual %) 183 4.36 4.09 -9.18 33.03 growth Income level according to World Bank 192 - - 1.00 4.00 Income level classification (2006)
Old age dep. ratio Old age dependency ratios 192 17.18 10.40 2.00 50.00
Population density Population density 188 249.00 1272.00 2.00 16266.00 per square kilometer
Pop. growth rate Population growth (annual %) 188 1.46 1.33 -1.35 12.23
Commonwealth Membership to commonwealth 192 0.30 0.46 0.00 1.00
Political/cultural Colonial and political influence on culture 192 0.79 0.41 0.00 1.00
*About 9 nations with missing GDP per capita growth data were excluded from regression model N = number of cases; SD = standard deviation; Min. = minimum value; Max. = maximum value.
Table 3.3 shows that the range of GDP per capita was from – 9.18 to 33.03 percent with a mean of 4.36 percent (SD = 4.09). About 15 percent of the economies had negative GDP per capita growth which is likely to have effect on the expenditures for healthcare. For income levels as discussed earlier, the World Bank classifies economies into low income, middle lower income, middle upper income, and high income. The old age dependency ratios range from 2 to 50 older persons for every 100 persons in the working age group, with a mean of 17 older people per 100 working group people (SD = 10.40). The population density ranged from 2 to 16,266 people per square kilometer, with a mean of 249 people per square kilometer (SD = 1272). Annual population growth rate ranged from - 1.35 to 12.23 percent with a mean of 1.46 percent (SD = 1.33).
Descriptive statistics for health care system measures The health care systems measures represent two broader aspects of organization of health care: organization in terms of workforce and financing structures. Sanders (2002) argued that the
94
socioeconomic forces in a country influence the government commitment to funding health care. Therefore, it is important explore these variables as listed in Table 3.4.
Table 3.4: Descriptive Statistics for Healthcare Systems Indicators ______
Variable Name Variable description N Mean SD Min. Max. Govt health exp. Government expenditure on health as 191 60.09 19.80 12.30 98.60 percentage of total expenditure on health (2006)
External resources for health as External health exp 191 9.66 15.56 0.00 73.10 percentage of total expenditure on health, (2006)
Outpkt health exp. Out-of-pocket expenditure as percentage 191 80.24 20.58 14.40 100.00 of private expenditure on health (2006)
Social health exp. *Social security expenditure on health as 173 24.32 32.68 0.01 98.40 % of general government expenditure on health (2006)
Density health wrks Density of health workers (physicians 192 4.95 4.47 0.19 17.98 and nurses, 2003)
Per capita health exp Per capita total expenditure on health at 191 781.25 1410.00 0.00 6714.00 average exchange rate (US$) (2006)
Hosp. beds coverage Hospital beds coverage 2005 192 3.13 2.56 0.20 13.90
*most countries especially those in sub-Saharan Africa did not report data for social insurance health expenditure N = number of cases; SD = standard deviation; Min. = minimum value; Max. = maximum value.
Table 3.4 illustrates that the important health care expenditure ratios are: the percentage of government healthcare expenditure as percentage of the total health expenditure which ranged from 12.3 percent to 98.6 percent (i.e., in national health systems like those in Canada and UK) (Fried & Gaydos, 2002; Sanders, 2002). Also for external resources for healthcare expenditure (i.e., foreign aid), it ranges from no external funding (0 percent) and some countries excessively rely on external funding for their health care (73.1 percent), with a low mean of about 10 percent (SD = 15.56). Examples of countries‘ proportion of health care expenditure that came from external resources include: Canada, 0.0 percent; Ireland, 0.0 percent; Ethiopia, 31.5 percent; and Mozambique, 40.8 percent. This exemplifies the developing-developed countries divide on
95
receiving external resources to finance health care, where developing nations are more likely than developed nations to receive external aid for health care. Other health care expenditure ratios will be discussed in details elsewhere in this study. Also, as noted earlier, the health care expenditure ratios are not mutually exclusive. Density of health workers is also an important component of health care design. The combined density of physicians and nurses ranged from <1 to 19 nurse/physicians per 1,000 of population with a mean of 5 physicians and nurses per 1,000 (SD = 4.47). Similarly, the number of hospital beds per 1,000 people in the population shows health care is delivered in an in-patient setting. This measure ranged from <1 to 14 hospital beds per 1,000 of population (SD = 2.56).
Bivariate statistical analyses: chi-square for categorical independent variables and t-tests for continuous independent variables Further summary statistics are provided to show both the distribution and association between the outcome variable and three sets of independent variables. Chi-square, a test for categorical variables will show the distribution of the categorical variables on the two categories of the outcome variable. Chi-square is an intuitive statistic to use on the categorical variables (Field & Miles, 2010) to show how the values of each of the three categorical variables are distributed among the categories of the outcome variable (with and without palliative care). Table 3.5 below is a 2x4 contingency table showing the distribution (i.e., bivariate relationship) of palliative care presence by the income levels of nations.
Table 3.5: Contingency table for presence/absence of palliative care by income levels
Country income level Presence/absence of palliative Low- Middle - Middle- High- care income lower upper income Total
Has no Frequency 39 20 18 8 85 palliative care (Percent) (44 %) (23 %) (20 %) (9 %)
104 Has palliative Frequency 20 33 20 31 care (Percent) (19 %) (32 %) (19 %) (30 %)
Total 59 53 38 39 189
96
The percentages of income levels for countries that have palliative care were significantly different from those that do not have palliative care, with a chi-square value of 24.82 (4, N= 189, p <.0001). However, the significance of this relationship requires further investigation because income level is not sufficient for a country to have palliative care but rather an interaction of several factors (i.e., political, cultural, economic, and historical). Income level is only a single measure of the levels of national income. In other words, statistical significance of this bivariate relationship only explains partly how national incomes influence a country to have palliative care services. Also, as is evident from the table, the percentages of countries with no palliative care decrease along the income level continuum. That is, fewer countries in the high-income level group have no palliative care. On the contrary, the percentages of countries with palliative care services increase along the income level continuum. That is, there are a higher number of high- income countries with palliative care. In conclusion, the proportion of high-income countries with palliative care is relatively higher than the proportion of countries with palliative care in middle- and low-income levels. Chi-square test statistic for the categorical variables The other two categorical variables in this analysis are the membership to commonwealth and the political/cultural influence. These two variables are dichotomous, and therefore, are presented in a separate table that shows the distribution of their categories by the categories of the outcome variable. The chi-square test statistic for the association between presence/absence of palliative care and the two categorical variables are shown in table 3.6 below.
Table 3.6: Chi-square table for Commonwealth membership and political/cultural influence Categorical variables Commonwealth membership Political/cultural influence Yes No Yes No Has no palliative Frequency 25 63 66 22 care (Percent) (46.30 %) (45.70 %) (43.40 %) (55.00 %) Has Palliative care Frequency 29 75 86 18 (Percent) (53.70 %) (54.30 %) (56.60 %) (45.00 %) Total Total frequency 54 138 152 40
The percentages of the Commonwealth countries that have palliative care were not significantly different from the non-Commonwealth countries that have palliative care, with a chi-square value of 0.08 (1, N=192, p = 0.1210). That is, the chi-square value for the relationship 97
between presence/absence of palliative care services and membership in the Commonwealth of Nations was not statistically significant. This suggests that even though palliative care has its origins in the Great Britain and the bulk of member states of the Commonwealth are former British colonies, models other than Commonwealth membership have led to member countries to adopt palliative care services. Such other models that may have led to such adoptions include the international hospice movement, which has also roots in Great Britain and Canada (Connor, 2009; Saunders & Kastenbaum, 1997; Watson, et al., 2009). Probably, the international hospice movement has influenced more countries to establish palliative care services other than the Commonwealth of Nations. No data is however available to investigate the influence of the international hospice movement although the literature has overwhelmingly indicated this social movement has had an impact in influencing countries to establish palliative care. However, further investigation is required to establish whether membership to Commonwealth of Nations is a significant predictor for a country to have palliative care services. Similarly, the percentage of the countries that were politically and culturally influenced by colonialization by the Western European colonial powers and have palliative care services were not significantly different from non-colonized countries that have palliative care, with a chi-square value of 1.71 (1, N=152, p = 0.0607). However, it can also be argued that p-value of 0.06 is statistically significant at small sample size (N=192). Factors other than colonialization may have had an influence on countries to establish palliative care. As pointed out earlier, the international hospice movement is one of those factors that have led to the growth of palliative care services around the world. However, the channels of the hospice movements are not necessarily similar to the patterns of colonialization. In other words, although the presence of the colonizers in the colonized nations may have been motivated by several pursuits, palliative care was found not to be one of those reasons as the test of the association between presence/absence of palliative care and political/cultural influence of colonialization indicates. Studies have also found that establishment of palliative care in most of the countries are likely to follow social movements rather than political movements (see, Clark, et al., 2005 work on history of hospice care). The international hospice movement was a social movement for advocating growth of palliative care (Clark, et al., 2005), especially in the 1970s and 1980s. However, investigating the influence of international hospice movement being a social movement rather than a political movement is beyond the scope of this study. Future studies should investigate the existence of 98
political movements in supporting of growth of palliative care since the two political measures (i.e., membership in the Commonwealth of Nations and colonialization) employed in this study did not support the thesis of growth of palliative care globally.
T-test for continuous variables Further descriptive statistics of the measures employed in this study for the continuous variables is important. The previous section tested for the significance of the differences in frequencies of countries that have and those have no palliative care services. This test is extended to continuous independent variables. Instead, the t-tests compare the means of two groups, in this case, countries with and with no palliative care. As shown in Table 3.7, there were means of countries with palliative care that were significantly different from means of countries with no palliative care.
Table 3.7: Bivariate Statistics – t-test for continuous independent measures ______
Has palliative care Has no palliative care
95 % CL 95 % CL Lower Upper Lower Upper Variables Mean Limit Limit Mean Limit Limit GDP per capita growth (%) 5.1371 4.3623 5.9119 3.4092 2.5061 4.3124 Old age dependency ratio 21.8173*** 19.6714 23.9633 11.6932*** 10.4012 12.9851 Population density (per sq. 4.2712 4.0081 4.5343 4.0594 3.732 4.3868 km) Population growth rate (% 1.0188*** 0.8178 1.2199 2.0131*** 1.6987 2.3275 annual) Adult HIV prevalence rate 18.1057 8.2293 27.9821 16.6692 9.0017 24.3367 (per 1,000) Years lost to non- 56.2233*** 51.1892 61.2574 37.1932*** 32.2305 42.1558 communicable diseases (%) Alcohol consumption per 6.499*** 5.6839 7.3141 3.5716*** 2.8021 4.3411 capita (liters per year per adult Access to water (%) 86.5529*** 84.0276 89.0782 76.8636*** 73.047 80.6802 Age-standardized HIV 1.0909 0.5205 1.6613 0.5387 0.231 0.8463 mortality (per 1,000)
99
Age-standardized Cancer 1.3018 1.2398 1.3638 1.2852 1.2027 1.3677 mortality (per 1,000) Govt. expenditure on health 58.8221 55.1465 62.4978 61.6069 57.1648 66.049 care (percent of total health expenditure) External resources on health 4.5641*** 2.6439 6.4843 15.6193*** 11.6623 19.5764 care as a percentage of total expenditure Out-of-pocket health care 77.5538* 73.5205 81.5872 83.446* 79.1736 87.7184 expenditure as a percentage of private health expenditure Social security expenditure 33.197*** 26.1445 40.2495 11.8667*** 6.5062 17.2272 as a percentage of government expenditure on healthcare Density of health workers 6.6821*** 5.7252 7.6391 2.9104*** 2.3308 3.49 (physicians and nurses per 1,000) Per capita health 1125.6*** 802.1 1449 369.6*** 183.6 555.6 expenditure (at average exchange rate (US$) Total health expenditure as 6.8084* 6.3364 7.2805 5.9786* 5.3171 6.6401 percentage of GDP Hospital beds coverage per 3.924*** 3.3855 4.4626 2.1818*** 1.7788 2.5848 1,000
______*p<.05, **p<.01, ***p<.001
The dependent t-test statistics given in Table 3.7 shows that indeed there are some significant differences between the means of the countries with and without palliative care. The statistical significance in the t-test indicates that there is variability between the two groups of the outcome variable (i.e., has and has no palliative care) and the range of continuous independent variables (Field & Miles, 2010). The general description of the variability between the two groups is presented. Countries with palliative care have relatively higher mean old age dependency ratios (22 older adults per 100 working-age adults) than those with no palliative care (12 older adults per 100 working-age adults). Similarly, countries with palliative care have relatively higher mean proportion of years of life lost to non-communicable diseases (56.2 percent) than those with no palliative care (37.2 percent). Countries with palliative care have lower mean population growth rates (1.1 percent) than that of countries with no palliative care 100
(2.0 percent). In terms of alcohol consumption, countries with palliative care have higher average alcohol consumption per capita (6.5 liters per year per adult) unlike countries with no palliative care (3.6 liters per year per adult). Access to clean water also shows disparities between the two groups, where, the mean proportion of residents in countries with palliative care accessing clean water is 86.6 percent as opposed to 76.7 percent for residents in countries with no palliative care. In terms of external resources for health care, the mean proportion for external resources for health care for countries with palliative care is only 4.6 percent unlike 15.6 percent for countries with no palliative care. The out-of-pocket resources for health care also show some disparities between the two groups, where the mean proportion for out-of-pocket expenditure in countries with palliative care is 77.6 percent as compared to 81.6 percent for countries with no palliative care. The mean proportion for health care expenditure that comes from social security in countries with palliative care is 33.2 percent as opposed to only 11.9 percent in countries with no palliative care. There mean of density of health workers is higher in countries with palliative care (6.7 per 1,000) unlike in countries with no palliative care (2.9 per 1,000). The average per capita health care expenditure is higher in countries with palliative care (US$1,125) as opposed to countries with no palliative care (US$370). The mean total health care expenditure as percentage of GDP is slightly higher in countries with palliative care (6.8 percent) in relation to that of countries with no palliative care (6.0 percent). Lastly, the average number of hospital bed coverage in countries with palliative care is higher in countries with palliative care (3.9 per 1,000) as compared to countries with no palliative care (2.2 per 1,000). The discussion of the means that have significantly different t-tests reflects on the differences that are typical to the developing-developed countries divide. For the most part, the means of these different indicators are clearly indicative that health care systems in developed countries are more advanced, with greater investments in health care, higher densities of health care workers, and better coverage for hospital beds. However, further analysis in the next section will show how these indicators with significantly different means are good predictors of countries having palliative care. Multivariate analysis will provide more information showing the direction and magnitude of the effect produced when variation in independent variables leads to variation in dependent variable.
101
Multivariate statistical analysis: logistic regression models Logistic regression (i.e., binary logit) models examined the significant predictors of presence or absence of palliative care in any given country. This data analysis strategy is the most suitable because the outcome variable level of presence/absence of palliative care activity is binary (i.e., presence or absence of palliative care services) (Agresti, 1996, 2007; Allison, 1999). Due to limited sample size and lack of adequate comparable data at the country-level, the predictive power of these analyses may be limited. However, as bivariate analyses show, there are differences in measures that are statistically significant. Multivariate analyses were employed to determine the predictive power of various measures. Coding of presence or absence of palliative is as shown below to allow the use of logistic regression models. 1 = no known activity 3 = localized provision 2 = capacity building 4 = approaching integration
The four categories were recoded as follows: Categories 1 & 2 coded ‗0‘ to mean absence of palliative care services Categories 3 & 4 coded ‗1‘ to mean presence of palliative care services
The binary logit model equation takes the form:
(1)
Where: logit is the log of odds that a country has palliative care services
pi is the probability of presence of palliative care services in any given country
α is the intercept term and β‘s are the coefficients of the logit model
Three different models were run based on the set of variables representing each set of independent variables (i.e., for each context suggested by Stjernsward, Foley & Ferris, 2007a) and one final model for variables that were statistically significant in the three individual models. The first model regressed the presence/absence of palliative care on a range of mortality, morbidity, and risk factor indicators (i.e., the disease demographics indicators). In the second model, the outcome variable presence/absence of palliative care was regressed on a range of socioeconomics independent variables. The third model involved regressing presence/absence of palliative care on a set of healthcare system independent variables. The final model combined all the significant predictors from the three separate models, where there were a total of eight 102
variables for the combined model. This model reflects overall contexts as suggested by Stjernsward, Foley and Ferris (2007a).
The Disease Demographics Model The measures employed in the disease demographics model as predictors of presence or absence of palliative care are in three sub-categories of mortality (i.e., HIV and Cancer mortality rates), disease prevalence (i.e., years lost to non-communicable diseases and adult HIV prevalence rates) and risk factors (i.e., alcohol consumption and access to clean water). The correlations and variance inflation factors (VIF) were examined in linear probability model for all the predictors and found that all the variables were slightly correlated with correlation coefficients ranging from (r = -.08 to r = .49) and VIF values not exceeding 10. The results of the disease demographics indicators are presented in Table 3.8.
Table 3.8: Presence/absence of Palliative Care Logit Model for Disease Demographics ______
Parameter Std. Odds Variable Name Estimate Error Wald X2 DF p-value Ratio 95 % CI Intercept -4.0738 1.5183 7.1988 1 0.0073** - - - Adult HIV prev. 0.00141 0.00571 0.0614 1 0.8042 1.001 0.99 1.013 Years lost to non-comm 0.0311 0.0133 5.4856 1 0.0192* 1.032 1.005 1.059 diseases (%) Alcohol consumption per 0.1601 0.0706 5.1429 1 0.0233* 1.174 1.022 1.348 capita Access to water 0.0266 0.0175 2.3269 1 0.1272 1.027 0.992 1.063 Cancer mortality rates 0.1442 0.7284 0.0392 1 0.8431 1.155 0.277 4.815 HIV mortality rates 0.2942 0.1368 4.6269 1 0.0315* 1.342 1.026 1.755
Chi-sq. DF p-value Likelihood Ratio 60.6468 6 <.0001*** Wald 37.0450 6 <.0001*** ______*p<.05, **p<.01, ***p<.001
From Table 3.8, three measures in the disease demographics model were found to be significant predictors of a country having palliative care services. A 1-percent increase in the years lost to non-communicable diseases raises the odds of having palliative care services by 3.2 percent. In other words, when the proportion of years lost to non-communicable diseases (i.e., 103
premature mortality from non-communicable disease) increase, the likelihood of a country having palliative care also increases. Alcohol consumption per capita was also found to be significant predictor of presence of palliative care. An increase in one liter of alcohol consumption per capita increases the odds of having palliative care services by 17 percent. However, this finding should be interpreted with caution because alcohol consumption itself is not a sufficient predictor of a country having palliative care even though it‘s one of the risk factors associated with some non-communicable diseases. Other intervening factors such as socioeconomic status may be at play in this relationship such as income levels, where, on average, wealthier nations are likely to have higher alcohol consumption than in low-income nations. Another explanation is that countries in the high income groups may have high alcohol consumption per capita and also have alcohol rehabilitative services for alcohol dependency, thus, averting the risks that may lead to heightened use of palliative care services. Also, in this model, cancer mortality was not a significant predictor for palliative care. Although there is strong evidence that alcohol is a risk factor for many chronic illnesses including cancer of the mouth and liver (American Cancer Society, 2007, 2009; Gaydos & Veney, 2002), the relationship between alcohol consumption measure and cancer mortality was also not significant. Modeling cancer mortality on alcohol consumption had a p-value of .086, indicating that alcohol consumption is not a sufficient cause for mortality from cancer. Thus, cancer mortality does not have mediating relationship with alcohol consumption in influencing a country to have palliative care services. It was also evident that cause-specific mortality rates from HIV disease are associated with presence of palliative care services. Indeed, an increase in one HIV mortality case per 1,000 people in the population increases the odds of a country having palliative care services by 34 percent even while controlling for adult HIV/AIDS prevalence rates. This finding implies that countries establish palliative care services as response to HIV mortality as opposed to increasing HIV/AIDS prevalence. A similar argument was made by Clark and colleagues (2007) that most palliative care services were introduced in sub-Saharan African countries as they responded to increasing number of HIV-related deaths. Probably the development of preventative measures is health systems‘ initial responses to high prevalence of HIV/AIDS. For instance, the campaigns for behavioral change, marital faithfulness and abstinence are common among sub-Saharan Africa countries. While such initiatives are meant to slow the spread of the disease, the 104
increasing HIV-mortality rates that have been observed in the recent years can be associated with the establishment of palliative care in most countries (Selwyn, 2007). Nevertheless, further modeling will be required to examine if HIV/AIDS mortality is moderated by other factors in influencing presence or absence of palliative care around the world.
The Socioeconomics and Demographics Model The Socioeconomics model includes measures reflecting the social, economic, demographic, political, and cultural drivers of the general health care systems as well as palliative care. Presence of palliative care services in any given country can be influenced by a set of social, economic, political, and cultural factors (Wright, et al., 2006). This study examined which, among the many socioeconomic factors, are significant predictors for countries to have or not to have palliative care services. Although there was support for some of the socioeconomic and demographic factors, the majority of the predictors in this model were found not to be significant. The correlations and variance inflation factors (VIF) were examined for all the predictors and found that all the variables were moderately correlated with correlation coefficients ranging from (r = -.58 to r = .22) and VIF values not exceeding 10. The results of the socioeconomics and demographics indicators are presented in Table 3.9.
Table 3.9: Presence/absence of Palliative Care Logit Model for Socioeconomics and Demographics
Parameter Std. Odds Variable Name Estimates Error Wald X2 DF p-value Ratio 95 % CI Intercept -2.1818 1.0235 4.5438 1 0.033* - - - GDP per capita growth 0.1178 0.0528 4.9732 1 0.0257* 1.125 1.014 1.248 Income level -0.1311 0.2238 0.343 1 0.5581 0.877 0.566 1.36 Old age dep. ratio 0.1412 0.0377 13.9944 1 0.0002*** 1.152 1.07 1.24 Logged pop. density -0.1067 0.1292 0.682 1 0.4089 0.899 0.698 1.158 Pop. growth -0.1363 0.2313 0.3469 1 0.5558 0.873 0.555 1.373 Commonwealth 0.2056 0.395 0.271 1 0.6026 1.228 0.566 2.664 Political/cultural 0.6835 0.4801 2.0265 1 0.1546 1.981 0.773 5.076
Chi-sq. DF p-value Likelihood Ratio 62.8016 7 <.0001*** Wald 35.7234 7 <.0001*** ______*p<.05, **p<.01, ***p<.001 105
As illustrated in Table 3.9 above, economic growth can be an important condition for a country to have palliative care services. In other words, a 1-percent increase in the GDP per capita growth rate corresponds to 12.5 percent higher odds for the country to have palliative care services controlling for income level. This finding confirms a similar finding by Wright and colleagues (2006), who found that a country‘s wealth is related to palliative care establishment, as is the case with the health care systems (Sanders, 2002). However, a weakness in their study was that they used GDP per capita measured at current US$ which is measured at a single point in time, which can amplify the gap between the richer and poorer nations. GDP per capita growth rate, however, is an indicator of whether an economy is growing or shrinking. Old age dependency ratio, a measure of population aging, was also found to be a significant predictor of presence of palliative care services. That is, for every increase in one older person above age 65 per 100 people of working age, there is a 15 percent higher odds of having palliative care in a country, net of the effects of population growth rate and population density. This finding supports an argument by Weber and colleagues (2007) that population aging and rising cases of non-communicable disease have driven the demand for palliative care and so it will in the future. Whereas political forces have been argued to be salient in the design and delivery of health care, the two measures constructed to examine the influence of the political forces external to a country were not significant. First, membership in the Commonwealth of Nations was constructed as a dummy variable to examine whether countries that are members of commonwealth have been influenced by their former colonizer (i.e., Britain) to establish palliative care services since modern palliative care has its origin in Britain. However, this was found not to be the case. Similarly, colonialization by Western European nations might have led to the diffusion of modern health care in the colonized nations. A measure constructed to assess this supposition was found not to be significantly related to existence of palliative care. Perhaps a more appropriate factor external to a nation is structure of education systems as influenced by colonialization. No data was, however, readily available on types of education systems for the colonized nations. Nevertheless, as discussed earlier, Clark and colleagues (2005) maintained that expansion of palliative care globally follows social movements such as international hospice movement and not political movements as reflected in colonialization. The measures that mirror political factors were further tested for interaction effects in the socioeconomics model to show if 106
presence/absence of palliative care is significantly related with the interaction term of political movements (i.e., the membership to commonwealth and colonialization).
Proxy measures for cultural and political factors Colonization by Western European powers in the 18th and 19th century or membership to the Commonwealth of Nations had no impact to a country‘s having palliative care services because none of these indicators were statistically significant. Although literature points out that palliative care establishment follows a social movement model to diffuse to other nations (see Clark, et al., 2005), the political movements such a membership to a political union (i.e., Commonwealth of Nations) or political contacts between nations (i.e., colonization) were found not to be good predictors of a country having palliative care. There is also a body of literature that has shown that adoption of modern health care systems was influenced by the state of being colonized, especially in the nations of Africa (Baidoo, 2009; Roemer, 1993), Asia, and Latin America (Roemer, 1993). Palliative care, being a component of modern health care, nevertheless has been said to take a different path to be established in the nations that were colonized as well as those not colonized. For instance, palliative care has its origins in the United Kingdom. However, not all its colonies and subsequent members of the commonwealth have palliative care services. Some of the nations that were colonized have palliative care services and some of those never colonized also have palliative care services. In essence, palliative care services are not influenced by political arrangements between nations. Further investigation is thus required on how political relations between nations influences establishment of palliative care. Health Care System Model The nature of a health care system is an important vehicle for palliative care. Palliative care is part of a system that also includes preventative and curative care prior to onset of (i.e., preventative measures such as cancer screening), and during the management of chronic disease (i.e., hospital care). However, palliative care becomes necessary when curative care is no longer feasible (WHO, 2002), and thus, the overall health care system is important (Stjernsward, Foley & Ferris, 2007a). There are essential components of a health care system, including financing structures and health personnel (Sanders, 2002). Thus, this model explores the impact of these salient components of health care on having palliative care in any given country. The
107
correlations and variance inflation factors (VIF) were examined for all the predictors and found that all the variables were moderately correlated with correlation coefficients ranging from (r = - .02 to r = .37) and VIF values not exceeding 10. The results of the health system indicators are presented in Table 3.10.
Table 3.10: Presence/absence of Palliative Care Logit Model for Healthcare Systems ______
Parameter Std. Odds Variable Name Estimates Error Wald X2 DF p-value Ratio 95 % CI Intercept 2.7029 1.1298 5.723 1 0.0167** - - - Govt health exp. -0.0459 0.0115 15.9092 1 <.0001*** 0.955 0.934 0.977 External health exp -0.00744 0.0159 0.2197 1 0.6393 0.993 0.962 1.024 Outpkt health exp. -0.017 0.0105 2.6202 1 0.1055 0.983 0.963 1.004 Social health exp. 0.0193 0.00719 7.2293 1 0.0072** 1.02 1.005 1.034 Density health wrks 0.3224 0.0823 15.3383 1 <.0001*** 1.38 1.175 1.622 Per capita health exp -0.00017 0.000233 0.5056 1 0.4771 1.000 0.999 1.000
Chi- sq. DF p-value
Likelihood Ratio 66.0655 6 <.0001***
Wald 39.7000 6 <.0001*** ______*p<.05, **p<.01, ***p<.001
Two of the major components of health care system (i.e., funding mechanisms and healthcare personnel) were found to be significant predictors of having palliative care. In other words, the financing of health care may, in part, influence countries to have palliative care services as is the case with the health care workers, more notably the physicians and nurses who cater for the physical domain of palliative care. Although a significant predictor, government expenditure as a percentage of the total expenditure on healthcare had lower odds of a country having palliative care. That is, for every percent increase in government expenditure for health as percentage of the total health care expenditure, there were about 4 percent lower odds for a country to have palliative care. This finding was contrary to a claim by Webster, Lacey and Quine (2007) that for palliative care to be successful, government commitment to fund this care is critical. An explanation offered by Sepulveda and colleagues (2002) may illuminate why increasing government expenditure in health care may not necessarily translate to opportunities
108
for palliative care growth. They pointed out that most of the resources for palliative care come from donor funds by charitable organizations and in-kind resources (e.g., trained volunteers instead of paid professionals). The other significant health care financing component as predictors for countries to having palliative care is social security expenditure as a percentage of the government health care expenditure. This measure should also be interpreted with caution because the data on government expenditure discussed previously excluded the social security component because government expenditure is primarily from general tax revenues while social security expenditure is primarily mandated by the government. That is, the two expenditure ratios are independent measures of health care expenditure. For every one percent increase in social security expenditure in health care as a percentage of the government expenditure on health care, there are 2 percent higher odds of a country having palliative care. Some of the countries that reported their social security expenditure on health care showed it was insignificantly small proportions (i.e., less than 1 percent). All values with less than 1 percent were rounded to 1 percent. Other countries especially those in sub-Saharan Africa, had missing data on this measure. One argument that can support this finding is that social security benefits on health care are likely to provide other forms of care (e.g., acute sickness and maternity benefits, workers‘ medical benefits, dependants‘ medical benefits--Social Security throughout the World, 2008), which were most likely included in the reporting of the country‘s data. Further investigating will explore if the effect of social security spending on healthcare is mediated by other health care expenditure ratios. Lastly, the healthcare workers density was found to be a significant predictor of having palliative care. That is, for every increase of 1 healthcare worker (i.e., nurse and physician) per 1,000 in the population, there were 38 percent higher odds of a country having palliative care. It‘s worthy to note that this measure combined the density of nurses and density of physicians into a single measure. However, a test model also showed that when used separately, the density of nurses and density of physicians had the same effect and significance level on the presence of palliative care as when combined into a single measure. It was intuitive to combine the two densities into single measure to optimize the confidence level. A combined density of nurses and physicians has also been employed in other studies. For instance, one South African study on human resources for health workers employed combined density of nurses and physicians and 109
found that the combined measure had similar effects as when measures were used separately (Anand & Bärnighausen, 2004; Chen, et al., 2004). In later modeling, an investigation of whether density of health workers has a causal relationship with countries‘ presence or absence of palliative care services will be conducted.
The final model: salient predictors of presence of palliative care Modeling the predictors of presence of palliative care in separate contexts (i.e., disease demographics, socioeconomics, and healthcare systems) suggested by Stjernsward, Foley, and Ferris (2007a) as important for implementation and integrating palliative care into health care systems revealed several of those predictors were found to be significant under those particular contexts. However, in the final model, all significant predictors in the separate models were combined. The final model followed a suggestion by Sepulveda and colleagues (2002), that the public health approach for palliative care be implemented under all prevailing social, economic, cultural, and health care contexts and to be tailored to the target populations. The final model extends the preceding modeling by combining all the eight significant predictors from the individual context models. Table 3.11 shows that of the eight predictors, four were still significant in the combined model. This implies that there was probable mediating or moderating effects by other predictors in the separate models as discussed earlier or that the contexts influence each other.
110
Table 3.11: Presence/absence of Palliative Care Logit Model for all significant variables in the previous models ______
Estimated Std. Wald Odds Variable Name coefficients Error X2 DF p-value Ratio 95 % CI Intercept -0.2021 0.7545 0.0718 1 0.7888 - - - Years lost to non- -0.0057 0.0149 0.1455 1 0.7029 0.994 0.966 1.024 comm disease Alcohol consump. -0.0651 0.0733 0.7882 1 0.3746 0.937 0.812 1.082 per capita HIV mortality rates 0.2792 0.1235 5.1094 1 0.0238* 1.322 1.038 1.684 GDP per capita 0.088 0.0603 2.128 1 0.1446 1.092 0.97 1.229 growth Old age dep. ratio 0.1168 0.0471 6.1372 1 0.0132* 1.124 1.025 1.233 Govt health exp. -0.0437 0.0123 12.5464 1 0.0004*** 0.957 0.934 0.981 Social health exp. 0.0119 0.0086 1.9391 1 0.1638 1.012 0.995 1.029 Density health wrks 0.206 0.0945 4.753 1 0.0292* 1.229 1.021 1.479
Chi-sq. DF p-value Likelihood Ratio 74.0987 8 <.0001*** Wald 40.0276 8 <.0001*** ______*p<.05, **p<.01, ***p<.001
As seen from Table 3.11, HIV mortality rate in the final model remains significant at p<.05 level. That is, for every one mortality case from HIV per 1,000 people in the population, there were 32 percent higher odds of having palliative care in any given country. As the earlier discussion showed, establishment of palliative care has been in response to higher HIV mortality rates especially in sub-Saharan Africa, even though high prevalence of HIV is not a significant predictor. This finding is in agreement with the literature on HIV-related palliative care (Clark, et al., 2007; Connor, 2009), and especially so in regions of the world where HIV prevalence, and consequent morality rates, are much higher. Whereas cancer is also a common illness in the palliative care arena, cancer mortality does not increase the odds that a country will have palliative care. It is most likely that nations with higher prevalence of cancer have better strategies of providing care for cancer patients within the mainstream hospital care, and thus, the need for palliative care services is relatively
111
lower. This is contrary to the palliative care literature which has emphasized the importance of establishment of palliative care when cancer morbidity is beyond cure. The alcohol consumption variable was significant in the disease demographics model. However, when included with the significant measures from the other models, alcohol consumption loses its predictive power. The effect of alcohol consumption was also tested in a separate model by controlling for GDP per capita growth rate where alcohol consumption was not a significant predictor (see Appendix G for model with eliminated effects of alcohol). Similarly, in the final model, the effects of alcohol consumption in predicting presence of palliative care were eliminated by the measure of economic growth. As discussed earlier, although the alcohol consumption per capita is a risk factor for illnesses that eventually may require palliative care, it does not have causal relationship with the presence of palliative care. That is, alcohol consumption is moderated by economic growth of a country (i.e., GDP per capita growth as illustrated in the model in Appendix G). In other words, alcohol consumption rates were not a sufficient influence on the establishment of palliative care as it was found in the final model. It is worth to note that these two predictor, GDP per capita growth rate and per capita alcohol consumption per capita also show the developing-developed countries divide, where, there is likely to be higher alcohol consumption in countries with higher GDP per capita growth. Old age dependency ratio, expressed as the number of older adults above age 65 for every 100 people in the working age group (age 15 – 64), remained significant in the final model. Although the effect of old age dependency was slightly lower in this model than in the socioeconomics and demographics model, this change can be contributed to the competing effect of the years of life lost to non-communicable diseases measure; such diseases are more prevalent among older adults than among the younger people. However, further investigation is necessary because population aging and HIV mortality are likely to have confounding effects on the presence of palliative care. Old age dependency ratio in this study has a negative correlation with HIV mortality rates, implying that countries with higher proportions of older adults have lower HIV mortality, but both are significant predictors of palliative care presence. The developing and developed nations divide is a likely to be a factor in this observation, as the study by Wright and colleagues concluded.
112
Government expenditure on health care remains significant in the final model, where countries are less likely to have palliative care when proportion of government expenditure increases. That is, for every 1 percentage increase in government expenditure on health care, there are 4 percent lower odds for a country having palliative care. In the previous model, government expenditure had 5 percent lower odds, confirming the earlier assertion that palliative care funds come from sources other than government expenditure. There are several possible explanations to this finding. As seen in an earlier discussion, government expenditure on health care is mainly for curative and preventative services. In addition, Higginson and Foley (2009) maintained that palliative care has its origin in voluntary and non-profit sector and that state does not necessarily have to provide it. Also, in countries where healthcare is publicly financed, palliative care needs are embedded within the hospital care and thus the two are indistinguishable. Some examples illustrate that this is unusual case where, higher government expenditure in healthcare is associated with lacking palliative care services. In small island nations like Brunei Darussalam, the government expenditure in health care was 80 percent of the total health care expenditure. Similar situations are evident in other small nations like Micronesia (88 percent government expenditure on health care); Niue (98.4 percent government expenditure on health care); and Tonga (85.1 percent government expenditure on health care). However, there were no palliative care services identified by the IOELC study in these island nations. The relationship between the government expenditure on health care and establishment of palliative care is likely to be more complex because there are different dynamics at play in both developed and developing nations. The likely variability from such relationships may however be masked by the analytic technique employed in this study. Perhaps future study can attempt to explore the relationships between government expenditure on health care and the criteria used by Wright and colleagues (2006) to classify countries in different levels of palliative care development. The density of health workers, which combines both the number of nurses and physicians per 1,000 in the population, was also found to be statistically significant in the final model. The higher density of health workers was associated with greater likelihood of a nation establishing palliative care. This finding has been supported by other studies. For instance, there have found to be positive associations between greater density of health workers and a number of health outcomes [e.g., better maternal and child health coverage in countries with higher density of health workers (Chen, et al., 2004)]. 113
Assessing causal relationship of various independent measures on the establishment of palliative care would have been of interest, given the timing of the data collection for the independent variables and the outcome variable. A few examples illustrate this, the density of health workers measure would probably have allowed one to measure causality because there was a time interval of three years between when the WHO reported this statistic (i.e., in 2003) and when IOELC compiled data for levels of palliative care development (i.e., in 2006). This would have allowed to some degree measurement of the effect of demand and supply of health care workers on countries having palliative care. The demand and supply is explained in terms of the need for general health care services (palliative care being a component thereof) and the availability of adequate health care workers. In other words, time interval enables the temporal ordering of the events in question in a causal relationship. Likewise, HIV mortality data was collected in 2004 and could probably allow for time ordering for the cause and effect relationship. However, the cross-sectional nature of data used and methodology employed were not sufficient enough to assess the cause and effect between the two events (i.e., growth of palliative care as a result of availability of health care workers and HIV mortality). The other significant measure in the model (i.e., government expenditure on health care and old age dependency ratio) were measured in the same year (i.e., 2006) as the outcome variable, and thus, it is impractical to determine the causal relationship. Future studies on factors associated with countries having palliative care can attempt to examine the causality to shed more light on whether presence or absence of palliative care in any given country is influenced by the predictors found in the final model and over a specific period of time.
Discussion In this study, literature on two critical frameworks associated with the establishment and development of general health care systems and one of its components, palliative care, was reviewed. The conceptual schema (in Figure 3.1) shows the development of health care system is as a result of the interrelationships between historical, cultural, economic and political experiences of a nation as summarized by Lassey, Lassey and Jinks (1997). In their summary, they argue that these factors are critical in influencing and shaping the design of health care system. Additional literature posits that these factors interact and are part of the internal factors that are influential for the structure of health care system in any given country (Roemer, 1991,
114
1993; Sanders, 2002; Skolnik, 2008). In a similar vein, the Public Health Strategy pioneered by the WHO in the 1990s provides a framework for integrating palliative care services within the structures of general health care systems. This framework proposes four contexts (i.e., culture, disease demographics, socioeconomics, and health care systems) for implementation of palliative care that overlaps to some extent with the political, economic, demographic, social and historical factors discussed by Lassey and colleagues (1997). This study however found the differences in disease demographic indicators, socioeconomic and demographic indicators, and health care systems indicators to be typical of the developing-developed countries divide in establishment of palliative care services. The interconnectedness of the factors for development of health care systems and contexts for the growth of palliative care presented a critical gap in the literature for the current study to empirically examine the salient factors that have led countries to establish palliative care. No past studies have attempted to investigate salient country-level factors in palliative care despite research in other areas of health care system development (e.g., maternal and child health). The need to understand palliative care development is suggested by Brown (2008) who argues that the same degree of health care attention given to first ten years of life should be accorded to the last ten of years of life. In light of the gaps in the literature and the need to accumulate evidence for better outcomes in palliative care, this study employed statistical analysis to examine the three of the four contexts of palliative care integration suggested by Stjernsward, Foley, and Ferris (2007). Wright and colleagues (2006) study gathered data from all countries of the world and developed a typology to describe the phenomenal growth in these services and to document differential in levels of palliative care growth. That landmark study provided some of the data for this study to investigate the factors that have been associated with the observed growth. Country level data were also obtained from the WHO and World Bank for this investigation. From the investigation, there was some evidence that a number of factors are significantly related to the current growth in palliative care, leading to countries establishing services of one kind or the other. Also, as Connor (2009) notes, the observed growth is supported by the heightened social interest and commitment to providing care at the end-of-life. In addition, the growing interest is evidenced by the number of countries (i.e., about half) that have embraced care for the terminally ill patients by establishing some level of palliative care. 115
The key question that this study attempted to answer is the salient factors that have driven the growth of palliative care across the globe. Generally, this study found that indeed factors within the countries play a significant role in establishment of palliative care. Economic forces influence the spending and organization of health care system. For instance, Veney (2002) pointed out that the level of wealth of a nation is the single most deterministic characteristic for the investment in general health care. He concludes that there are indeed differences the wealth of a country determines investment in health care services. The wealthier nations have established health care systems providing a wide range of health care services whereas transitional nations struggle to provide variety of health care services and in the poorest nations, adequate health care services reach a minimal section of the population most notably the affluent upper middle and high class who are a minority in those nations.
Salient factors for establishment and development of palliative care This study found several indicators in the broader categories of disease demographics, socioeconomic and demographics, and health care systems to be positively associated with the presence of palliative care in countries across the globe. This range of indicators reflects on the separate contexts for implementing palliative care suggested by Stjernward and colleagues (2007a) and the overall country‘s social, economic, political, demographic and cultural situations suggested by Sepulveda and colleagues (2002). The discussion of the salient factors from this study and their interrelationship with past literature is presented for the measures found to be significantly associated with establishment of palliative care.
Health care expenditure Several health care expenditure ratios were explored for their influence on establishment of palliative care. All the ratios employed were however not mutually exclusive and only those conceptually relevant in this study were modeled. The government expenditure on health care was significantly associated with presence of palliative care. These measures, as used, were aggregate for countries in the developing and developed regions. It has been noted that developing nations typically have low public funding to health care (Skolnik, 2008). The findings from this study showed that increase in government expenditure on health care is associated with slightly lower odds of having palliative care (i.e., 5 percent lower odds). While an earlier discussion showed that small island nations classified as high-income countries have
116
higher government expenditure on health care and no palliative care, a similar observation has been made in developing nations as well. For instance, in a country like Papua New Guinea, the government expenditure on health care in 2006 was 89 percent of the total health expenditure yet there were no palliative care services identified by IOELC study. Other low-income countries with higher government expenditures on health care as a proportion of the total health care expenditure and no have palliative care services include: Angola, Algeria, and Lesotho. Skolnik (2008) however warns that even with seemingly high proportions of government expenditure health care, health outcomes are always remarkably different between high-income and low- income nations. This observation also relates to the developing-developed nations divide. Although social security expenditure on health care was found to be no longer significant predictor of palliative care in the final combined model, little emphasis is paid to it as a salient factor for establishment of palliative care. However, to further the discussion on developing- developed nations divide, it is important to note that most of the countries with missing data on this indicator were from the sub-Saharan Africa region (i.e., 11 countries), where, either governments spend little on social welfare programs for health care or no data was made available to the WHO (WHO, 2006). Additionally, about 40 countries in the dataset had their proportions of social security expenditure on health care insignificantly small, that is, less than 1 percent, most of which were developing nations. It has also been noted that in developing nations, the low level of social security expenditure on health care is limited to few benefits such as sickness, maternity, and workers‘ injury and disability compensation according to the 2008 Social Security throughout the World report by U.S. Social Security Administration. The discussion on the relationship between government health care expenditure and presence of palliative care in a country may further be supportive of an important claim made by Higginson and Foley (2009). In their claimed, they argued that government provision for palliative care many be unnecessarily because palliative care has roots in voluntary and charitable sector. This claim can further be traced to the initial work of palliative care done by Dame Cecily Saunders to provide relieve from physical and emotional distress experienced by dying cancer patients . As such, higher proportion of government expenditure on health care maybe unrelated to presence of palliative care. However, this claim needs to be investigated empirically using some of the criterion that Wright and colleagues (2006) used to create the typology (see Appendix B for a list of features of each level of palliative care development). 117
Population aging Population aging has become a major area of concern especially with the rising cases of non-communicable and palliatable diseases. The measure population aging used was the old age dependency ratio (OADR), which was found to be positively associated with the presence of palliative care. This finding is consistent with an observation by Higginson and Foley (2009) and Yancik (2005) that aging of the population has and will drive the need for palliative care globally as a result of chronic illness associated with advanced age. However, they made a contradictory argument that, in high-income nations, where, there are significant proportions of older adults, the costs of health care will keep rising and thus palliative care will be seen as a ―luxury‖ when nations attempt to contain the higher health care costs. But indeed, palliative care will become a necessity in the future to address the issues associated with rising cases of palliatable diseases among the aging populations as this study found. One of the indicators of health care expenditure associated with population aging is higher per capita expenditure on health. For instance, Austria, Switzerland, and Belgium have high rates of old age dependency and higher per capita expenditure on health care. An examination of the association between health expenditure per capita and population aging (measured as old age dependency ratio) found a strong association, with a correlation coefficient of .72. However, statistical modeling found that health expenditure per capita was not a significant predictor of palliative care. Hence, it can be argued that the role of government in financing palliative care services remains unclear despite the undeniable need for palliative care as a result of population aging and increasing prevalence of non-communicable diseases occurring in old age. For instance, the Medicare program in the U.S. provides health care for older Americans including hospice care. However, a study by Huskamp and colleagues (2004) found that in Medicare Hospice Benefit Program, beneficiaries are not able to utilize palliative care sooner than the program allows because eligibility is based on disease severity and disability than prognosis. Huskamp and colleagues also observed than under the hospice benefit program, it is difficult to provide expensive medication and procedures to caps for the per diem rates. These observations in relation to the higher health expenditure per capita in the U.S. illustrate the unclear picture on the government expenditure on health care in the wake of needs rising palliative care needs.
118
Morbidity and mortality associated with palliatable diseases Palliative care seeks to provide relief and comfort when an illness is incurable (Connor, 2009; Watson, et al., 2009, WHO, 2002). There are specific illnesses that are common in palliative care arena (e.g., cancer, HIV/AIDS, cardiovascular diseases, etc). As such, palliative care can be provided as a nation‘s or society‘s response to rising mortality from a particular or a set of causes. This study attempted to investigate whether morbidity and mortality are predictors. The only morbidity data available specific to palliative care was adult HIV prevalence rates for adults. However, contrary to the literature on the importance of HIV morbidity in palliative care, this study found no support for this measure in absence or presence of palliative care. HIV prevalence rates were not a significant predictor for palliative care establishment despite that strong support in the literature that HIV/AIDS have led to the growth of palliative care in sub- Saharan Africa (see Clark, 2007). One of the challenges in obtaining HIV epidemiological data identified by Salomon, Gakidou, and Murray (n.d.) is lack of proper disease surveillance, poor reporting of diagnosed cases, undiagnosed cases, and generalizing of prevalence based on the cases diagnosed at antenatal clinics (ANC) especially in Africa. The data used in this study was problematic in the sense that some countries had missing data or had exceptionally low prevalence to almost zero. Such countries include Japan and those of Middle East region. Another measure related to morbidity in this study was the percentage of years of life lost (YLLs) to non-communicable diseases. This measure is for burden of disease, which according to the WHO, takes into account the proportion of life that is lived in disability and premature loss of life due to non-communicable diseases. It was used a proxy measure of non-communicable diseases since it measures the premature mortality attributable this kind of diseases. The YYLs was a significant predictor of presence of palliative care in the disease demographics model but however was not the case in the final model. Hence, no much emphasis will be given to YLLs as a measure of palliative care establishment because of its lack of significance as a predictor in the final model. Equally important are the measures of mortality in influencing countries to establish palliative care services. The two mortality measures explored in this study are cancer and HIV mortality rates, which are the most common in the palliative care literature. In industrialized nations, there are high mortality rates from cancer although even developing nations are catching up with this trend (Gaydos & Veney, 2002). There was no supporting evidence in this study 119
however, that palliative care establishment is driven by cancer mortality. This finding contradicts the empirical evidence about the importance of palliative care in improving the end-of-life care for cancer patients (Mori, et al., 2010; Tse, et al., 2007). It might also be argued that the two indicators already discussed, population aging and years of life lost to non-communicable diseases shadow the effect of cancer mortality as important predictor of presence of palliative care services. Although cancer prevalence rates are higher in developed nations, mortality associated with this cause has a stronger effect in developing nations, that is, 70 percent of cancer deaths occur in the latter regions (Webster, Lacey, & Quine, 2007; WHO, 2011). HIV-related mortality was a significant predictor of presence of palliative care in both the disease demographics model and in the final combined model. This finding suggests that higher mortality rates from HIV/AIDS in developing nations especially those of sub-Saharan Africa, explain the development of palliative care programs there (Clark, et al., 2009; Connor, 2009; Harding & Higginson, 2005; Krakauer, 2008). A 2008 Joint United Nations Programme on HIV/AIDS (UNAIDS) report indicated that there were high prevalence rates of HIV in southern African nations (i.e., exceeding 15 percent of the population) and more than three quarters of HIV-related deaths occurred in the sub-Saharan Africa region in 2006 (UNAIDS, 2008). Further, the report highlighted the increasing importance of palliative care in the sub-Saharan Africa region as an integral component of nations‘ response to exceedingly high HIV mortality. Also a study by Collins and Harding (2007) emphasized on the importance of palliative care in sub- Saharan Africa as response to HIV morbidity and mortality despite the seemingly absence of adequate services in the region. For example, Uganda and South Africa are countries that are in the highest level of palliative care development typology and have higher HIV-mortality and prevalence rates. HIV-mortality in Uganda in 2004 was 68 per 1,000 and in South Africa it was 79 per 1,000 in the same year.
Risk factors associated with palliatable diseases Besides morbidity and mortality, risk factors associated with chronic diseases were examined for their influence on presence of palliative care in any given country. The only data available for risk factors associated with cancers and other malignant problems was alcohol consumption per capita. In the disease demographics model, increase in alcohol consumption was found to raise the odds of a country having palliative care. This finding was consistent with
120
a previous study that found that alcohol consumption was partly to blame for cancer mortality. That is, 43 percent of cancer deaths are due to tobacco use, unhealthy diets, alcohol consumption, and inactive lifestyles (Petersen, 2009). However, in the final model, the effect of alcohol consumption on the establishment of palliative care was no longer significant. In a test model, alcohol consumption was found to be interdependent with GDP growth per capita (see Appendix H). This suggested that indeed alcohol consumption is higher in countries with positive economic growth. Nevertheless, alcohol consumption per capita may not be a sufficient predictor of palliative care existence even though is a risk factor associated with palliatable illnesses (e.g., cancer). These findings on the impact of risk factors, morbidity and mortality on the palliative care may correspond to an important premise raised by Vallin and Mesle (2004) drawing from Omran‘s theory of epidemiological transition. Although Omran‘s earlier work suggested a convergence of life expectancies among all societies, possibly at age 75 or even 85, which was as well contested, newer challenges have emerged that have led to divergence in mortality. Among the newer challenges was the emergence of HIV/AIDS in the early 1980s and re-emergence of disease that were nearly eradicated such as drug-resistant strains of tuberculosis. Of importance to this study is HIV-related mortality, which occurs at relatively young ages (e.g., at age below 40 years in some southern Africa countries). Emergence of HIV, which also results to co- infection with tuberculosis, posed challenges to the gains made in life expectancies and elimination of infectious pandemics. Therefore, the Omran‘s proposition for convergence of life expectancies in later life is unlikely in the light of the challenges presented by recent morbidities, more especially the HIV pandemic in Africa. Instead, it has resulted in divergence in mortality where, in developed countries, mortality occurs in later life and from non-communicable disease while in developing nations, mortality occurs at younger and productive ages. This observation can in part explain why, palliative care services exist in both developed and developing nations, with different focuses.
Human resources for health care The availability and composition of human resources for health was found to be important for a country to have palliative care. Clearly, the ability of the health system to support the growth of palliative care requires adequate human resources to provide different pillars of
121
this care. Although there is no consensus about the optimal level of health workers for a population, there is ample evidence that the number and quality of workers are positively associated with better health outcomes such as immunization coverage, outreach of primary care, and infant, child and maternal survival (WHO, 2006). Such benefits are potentially derived in palliative care where adequate levels of health care workers may support establishment and sustenance of these services. The measure used in this study was the density of nurses and physicians combined and there was strong evidence that indeed greater density of health care workers is associated with existence of palliative care. As pointed out earlier, studies in other areas of health care found the positive association of adequate health personnel with the better outcomes. For instance, Chen and colleagues (2004) found better health outcomes for child and maternal health in South Africa in regions where there were greater densities of health workers. If applied to palliative care, it is expected that the outcomes for patients and families receiving these services would benefit from improved management of physical and emotional distress associated with pain from terminal illness. The WHO (2006) recommends community health workers as well as trained volunteers to be part of the team that provides palliative care services.
Factors internal and external to a country The preceding discussion centered on factors that are internal to the political, economic, social, and cultural forces operating within the country that drive the growth of palliative care. This study also attempted to analyze the impact of factors external to a country as predictors of presence of palliative care. As is the case, proliferation of palliative care services follows a social movement (e.g., international hospice movement) (Clark, et al., 2005; Watson, et al., 2005). This has been because, in a more globalized world, there has been free flow of information on best practices for health care, which also extends to palliative care. For instance, international associations in palliative care arena gather and disseminate information useful not only in establishing ways of advocating for palliative care but also for providing best clinical practices (Help the Hospices UK, n.d.). As such, countries have benefitted from information gathered by palliative care specialists and disseminated to them. Unfortunately, there were no readily available data on measures of social movement. An attempt to construct a dummy variable for countries with national palliative care association as a
122
result of influence of World Palliative Care Alliance and such other bodies with worldwide reach on advocacy for palliative care showed unusually higher odds ratios (OR = 22), implying that this was a perfect predictor of palliative care presence. Two proxy variables (political/cultural influence by colonialization and membership to Commonwealth of Nations) constructed to examine the influence of political movements were found not to be significant predictors of presence of palliative care. Future research should investigate empirically the models that growth of palliative care follows by using measures that reflect on both social movements as lobbyists and advocates pressure for palliative care as a social, human rights, and public health issue.
Conclusion and implications Despite the growth and heightened interests that palliative care has received globally, there remains much to be done to ensure these services reaches significantly larger proportion of patients and families who require them to alleviate their suffering. Findings from this study show some of the important factors that have and will continue to propel growth of palliative care since the establishment of the first modern hospice in 1967. These salient factors, in combination with the gaps in the distribution of palliative care services which remains heavily skewed to the wealthy nations (i.e., higher per capita palliative care services in the top six countries vs. rest of the world, see Table 1.3 on page 7) shows how palliative care subspecialty has evolved and grown globally. The gaps in distribution also speak not only to lacking services but other factors (e.g., lack of basic sustenance and high poverty) that compound the distress brought by terminal illnesses and the consequent death. For instance, in resource poor settings, needs for terminally and chronically patients and families include even basic needs such as food, financial, and housing. These are among the issues that should be part of successful implementation of palliative care services. The findings from this study have a number of policy implications are important to both palliative care and public health. As the population ages and the prevalence of non- communicable diseases increase, it will be essential for countries to consider palliative care as a necessity in order to manage distresses associated with terminal chronic illness. Since this study found population aging to be an important predictor of existence to palliative care, nations that have not established palliative care programs may have to make such policy considerations to address the needs of population aging and those presented by palliatable diseases that
123
proportionately affect a larger number of older adults. Health care workers are integral to the successful delivery of any type of health care. Palliative care is not an exception because this study found that a greater density of health care worker is associated with presence of palliative care services in a country. In the light of this finding, countries should make considerations of increasing the number of health workers density (i.e., nurses, physicians, and community health workers), and establish curriculum for specialized training in palliative care in medical, nursing, and pharmacy schools. This policy recommendation is also in agreement with the proposition of Public Health Strategy, which advocates for palliative care education in medical and nursing schools to provide skills that are necessary for effective palliative care programs. High mortality rates from HIV have driven growth of palliative care in countries, especially with higher HIV prevalence rates. As illustrated previously, Uganda and South Africa are the only sub-Saharan Africa countries that have relatively integrated their palliative care services within the mainstream health care systems. An important policy recommendation to other countries in Africa with higher rates of adult HIV prevalence is to follow the Ugandan and South African models and establish palliative care at all levels of society as recommended by the Public Health Strategy. As pointed out earlier in the literature section, there are diverse models for delivering palliative care and they can be adapted to different social and economic settings. For instance, the neighborhood network model in India can be employed by African countries struggling to deal with the effects of HIV mortality. Also in the preceding discussions, it was noted that government expenditure has an association with establishment of palliative care. While palliative care in developed nations is well integrated into health care systems and also government expenditure in health care is relatively higher, developing nations could benefit by forging and encouraging public-private partnerships in funding and providing of palliative care. As Higginson and Foley (2009), private non-profit sector can support government efforts in developing nations to develop palliative care programs. All these policy considerations pointed here are aimed at improving access to palliative care for the patients for better health outcomes because studies have found that palliative care is beneficial to patients suffering from terminal illness and also to their families. In turn, the seemingly enormous burden of patients requiring palliative care (estimated at 100 million globally by Stjernsward and colleagues) could reduce drastically and their quality of life improved. 124
Limitations In the course of this investigation, a number of limitations were encountered, which, if overcome, would be helpful for better understanding of processes of growth of palliative care services globally. First limitation was that the outcome variable came from a study where data were collected over three year-period and compiled on a single point of time (i.e., data collected between 2003 and 2005 and compiled in 2006) to create a four-level typology indicating the different levels of palliative care development. There were great inter-level and intra-level variations stemming from the developing-developed nations divide. In addition, the data used as the explanatory variables came from different sources and for different years which intensified the variations. Although great variability is beneficial to empirical studies, the analytic strategy employed (i.e., binary logistic regression) was limited to analyze data with over-time variation. To overcome this limitation, the current study split the countries in two groups, those with palliative care and those without to enable use of binary logistic regression on a cross-section data for the outcome variable. This study however recommends use of time-trend data (i.e., longitudinal data) from several years and analytic approaches such as time-trend analysis to establish if development of palliative care follows the model represented by the IOELC typology. Such approach can explain how, over the time, palliative care has developed in different regions of the world since the inception of modern hospice in the late 1960s. The second limitation was identified with the IOELC typology was that it was not based on any previous frameworks or existing literature to show that, indeed palliative care to develop along the four-level typology. However, Wright and colleagues cited two ways that the European Association of Palliative Care (EAPC) uses to classify palliative care in European countries, by the type or setting and by the number of individual programs. Their data collection across the whole was partly guided by EAPC approach and partly by the criteria they created (see Appendix B for characteristics used to classify countries into the four levels). This raises concerns and questions on the criteria employed to develop the typology that classified countries with dissimilar levels of economic development and health care systems into single category. For instance, Qatar is a relatively wealthy nation in the Middle East region is in the same category of capacity building with Lesotho, a country with high prevalence of HIV/AIDS. For the most part, Lesotho may be in much immediate need for palliative care programs than Qatar is. There is
125
therefore need to refine the Wright and colleagues criteria for classifying countries with closely similar needs for palliative care. The third limitation was regarding time when and sources where data were collected (i.e., for outcome variables and for covariates alike). That is, data were obtained from different sources and from different years. Whereas the data used for creating the binary outcome variable of presence/absence of palliative care was collected over span of years (2003 to 2005), the final compilation was done in 2006 and from one source (i.e., IOELC). However, different sources were used for independent variables (mainly WHO and World Bank) and a few dummy variables created based on other authentic information. It was therefore difficult to find country-level cross-sectional data from a single year and from a single source. This limitation is not unique when using cross-national data because different countries use different statistical methods and report same indicators in different years and in different ways. However, to address this problem, efforts were made to use data from years as close as possible to the years when the data for outcome variable were used. This enable comparison for the prevailing conditions across the six year range (2002 to 2008). Notably there were two variable that came from these two years, 2002 (years lost to communicable diseases) and 2008 (old age dependency ratio). However, most of the other variables came from 2004 to 2006. The fourth limitation was that the empirical evaluation of the four different contexts of Public Health Strategy (i.e., culture, disease demographics, socioeconomics, and health care systems) was only possible using a few measures that mirrored these contexts. It was not, however, possible to find comprehensive data to represent all the four contexts or accurately reflect on all the contexts for effective empirical investigation of Public Health Strategy. Future studies should attempt to include a range of measures for each country that closely reflects on the four contexts that the proponents of Public Health Strategy highlight to be crucial for the establishment of palliative care and integrating it into palliative care. A number of indicators that could have better reflected on the four contexts were excluded from this analysis due to missing or unavailable data. For example, in specific models, data could have reflected on the four contexts. In the health systems model, data on the number of community and traditional health workers, pharmaceutical personnel, and per capita opioids consumption were unavailable or had excessive missing data. In the disease demographics model, data on adult women who had Pap smear and mammography, and antiretroviral therapy coverage could be useful if were complete. 126
In the socioeconomic model, data on adult literacy would have reflected on the social aspects of nations. In recoding the outcome variable as presence or absence of palliative care, which either showed either a country had or had no palliative care led to loss of variability across the levels of development of palliative care. In other words, although the countries that were in the zero category were similar in terms of availability of palliative care services, it was quite different story in terms of development palliative care because at development level 2, there was an understanding of the need for palliative care services and efforts were underway to initiate these services. This variation was lost when the level 1 and 2 of development of palliative care services was collapsed into a single category of no services available. In a similar way, level 3 and 4 of development of palliative care were collapsed into a single category of availability of palliative care services. Level 3 according to IOELC study indicated that there were few localized services and at level 4, there was quite substantial development of palliative care and these services were approaching integration with the mainstream health care service. With time trend data can examine whether for a country to be in the highest level, if it went through the model and explain the variations across time. The measures employed as factors external to a country in having palliative care were constructed using the information that reflects the political movements through colonialization. The colonialization takes only direction because most of the developed nations were colonizers and colonies. For instance, the political and cultural influence by colonialization was measured using whether a country deemed to have been colonized uses a Western European language. While there is no comprehensive list of the colonizers and colonized countries, use of Western European language was not sufficient to determine if a country was colonized or not, and if colonization subsequently influenced the establishment of modern health care and consequently palliative care. For instance, Ethiopia was never colonized but uses English language as a second language. Even though this nation was in the ―no palliative care‖ for the outcome variable, it‘s a difficult task to establish how, in the entire globe, colonization may have influenced establishment of palliative care. Future should employ more intuitive measures of political and cultural influence on the modern health care systems and palliative care. Lastly, employing other potentially suitable analytical approaches (such as ordinal logistic regression appropriate for ordinal outcome measures) was hindered by lack of clear 127
information on the difference between the levels of development. The conceptual distance between the levels in the typology may be unknown and not constant. Long (1997) recommended that the conceptual and mathematical distance between categories of ordinal measures be clearly articulated and their direction be known. In this case, the distance between the level of countries with no palliative care activity and those building capacity to initiate palliative care would be necessary the same as the distance between countries with localized provision and those whose palliative care is approaching integration to the mainstream health care system. It is thus important to pay particular consideration to the ordering of the categories of the response variable because it is easier to interpret and hypothesis testing is more powerful (Allison, 1999). However, this analysis was limited by lack of intuitive conceptualization of the distance between the levels in the typology.
Directions for future research on factors for palliative care growth Two important aspects guided this quantitative study. The Public Health Strategy for palliative care was pioneered by the WHO to promote the growth and integration of palliative care services into the mainstream health care systems (i.e., using structures and resources available) provided contexts for investigating which factors are important in establishment of palliative care. The IOELC typology provided information on the current level of development of palliative care services globally, where different countries are in different levels, with only 15 percent of the countries at the highest level. However, there remained unanswered questions on the Public Health Strategy that future studies can focus on. One is the probable role that the Public Health Strategy has played in the current level of development in palliative care. That is, to examine if countries have integrated palliative care into the health care following the IOELC typology. This is a critical gap in palliative care literature because the IOELC typology was not based on any past frameworks or literature. Two is the attempt to make a contribution to the theoretical development for palliative care at the macro-level which is notably absent. The Public Health Strategy is a model that can be refined to a macro-level theoretical framework using country-level data. Future studies should also attempt to empirically investigate the influence of factors external to a country in the development of palliative care. Literature has shown that external factors such as international hospice movement have led to the growth of palliative care but no
128
empirical evidence has supported this claim. This study employed a host of internal factors and several were found to be significantly associated with establishment of palliative care. However, no country level data were readily available on factors external to a country. An attempt to construct proxy measures to reflect the political movements was not successful because the proxy measures constructed in this study were not significantly associated with growth of palliative care. Future research using information available can construct conceptually sound measures external to a country and examine them empirically for their influence on growth of palliative care.
129
CHAPTER FOUR CONCLUSION Palliative care has evolved over the last four decades so as to improve the quality of life of patients and their families when faced with chronic and terminal illnesses. By its nature, this type of care is multidisciplinary and requires a multiprofessional staff to provide different needs for patients and their families. The World Health Organization defines palliative care to include the very basic domains of physical, social, psychological and spiritual (i.e., micro-level domains). Other definitions have extended domains so as to underscore the role of society, state, and formal structures when death is imminent as is the case with patients who receive palliative care (i.e., macro-level domains). Thus, palliative care has both formal and informal components. The formal component on the one hand includes the international organizations, national, state, and local governments, and health care systems and facilities. The formal component provides services that mainly touch on the physical, and perhaps to some degree, on the psychological aspects of palliative care. The informal component, on the other hand, includes communities and families. The informal component is well-suited to address needs touching on the social well- being and emotional satisfaction of patients when facing terminal illness.
Obviously, some aspects of palliative care are appropriately addressed within the purview of formal systems (i.e., physical aspects and a few psychological aspects) while others aspects of palliative care are better addressed informally at community and family levels (i.e., spiritual, emotional, and social aspects). Even though families and communities have traditionally been known to care for their dying members, modern healthcare practices have apparently expunged some of the responsibilities of end-of-life care from the family and community arenas and integrated them as palliative care in the health care systems. This shifting creates a complexity with no clear borderline between the formal and informal components of palliative care. The argument is that formal structures cannot entirely replace the aspects of end-of-life care that are well embedded within family and community circles such as spiritual, social, and emotional well-being. As Norwood (2009) puts it, the scene of death has changed over the last century in terms of place and time. As she suggests, modern death results from decline associated with chronic illnesses in later life and in a hospital setting where healthcare personnel make all efforts to maintain the life of dying patients. The modern approaches to the place and time of dying are 130
defined by Clark (2007) as the art and science of caring for the terminally ill patients which explain the philosophy of palliative care. However, there is a visible divide between developed and developing nations‘ approaches to the concept of modern death. In developed nations, there are explicit expectations at the imminence of death. For instance, in the United Kingdom, the recent policies on the end-of-life decision making revolves around patient choices (e.g., withholding of life sustaining treatments, Do-Not-Resuscitate (DNR) orders), and advance directives (e.g., living wills) (Ashcroft, 2005). In developing nations, state requirements are more relaxed for slow dying patients. For instance, in Brazil, Pessini (2005) contends that the legislation that was enacted in 1999 for patients‘ self-determination and autonomy was misunderstood by the doctors and thus created a dilemma in end-of-life care even when death is imminent.
The question that arises is what specific aspects of palliative care do the formal and the informal provide. For instance, societies can satisfactorily provide emotional and spiritual support to patients and their families which formal services cannot effectively address or offer. There is, however, contradicting evidence that receiving palliative care in formal settings improves survival rates for imminently dying patients (Lamba & Quest, 2011). In these settings, patients and families‘ needs may not be comprehensively met in regard to emotional and social care. Therefore, in every care setting, it should be made clear how the formal components of care are to meet the sole goal of improving quality of life and how informal components within structures of societies and families are to supplement formal care.
Lack of a clear understanding of the factors related to, and reflective of, the growth of palliative care around the world indicates that there are critical gaps in the palliative care literature. Also, the underlying conceptual frameworks that drive the creation of standards for palliative care are not well-articulated since the standards started to appear less than two decades ago. This study sought to fill the gaps in the literature by asking two important questions: what are the underlying frameworks that guide the creation of palliative care around the world and what are the salient factors associated with the growth of palliative care globally? To attempt to answer these questions, this project proceeded in two separate but related studies. One part examined the concepts and frameworks that are the foundation of standards for palliative care at the levels of practice (i.e., at patients, families, and care settings). The second study investigated 131
the salient factors associated with country-level growth of palliative care (i.e., at the national level). At the patients/families (i.e. micro-level) and care settings level (i.e. meso-level), guiding frameworks have been conspicuously missing or inconsistent in their scope and specificity. The review of relevant literature found that there have been no programmatic theories available to guide standardization of palliative care despite the obvious similarity in needs experienced by patients and families requiring such services across different levels of society. Although some countries have already created palliative care standards, there seems to be consensus from the analysis of the standards that framework(s) to guide the standardization are necessary. This consensus is reinforced by the fact that most of the countries have adopted the WHO definition for palliative care. Consequently, this study suggests that because the WHO definition is widely employed, it should be the basis for creating guiding framework for palliative care standards. Besides the inclusion of the WHO definition, this study found that palliative care education for health workers is becoming increasing important throughout the world. All the countries that have created standards have in one way or another incorporated education in medical or nursing schools curriculum. At international and national level (i.e. macro-level) unlike at the patients and family level (i.e., micro and meso levels), the WHO‘s framework of Public Health Strategy has been used to guide national governments in adopting palliative care and integrating the services into the existing systems of health care (Stjernsward, 2007; Stjernsward, Foley, and Ferris, 2007a, b). This study found that there are indeed several country-level salient factors associated with the establishment of palliative care. For instance, population aging, increasing HIV-mortality, and greater density of health workers were positively associated with the presence of palliative care services. Also, the increasing proportion of government expenditure on health care is associated with the presence of palliative care, although there are exceptional cases for small island nations where a higher proportion of government expenditure on health care does not translate to the existence of palliative care services. The findings from this study, therefore, have crucial practice and policy implications for palliative care. For practice, a framework is required to guide palliative care that is consistent, relevant, and practical to the patients and families who need these services. For policy, the salient factors associated with palliative care indicate that the WHO, international or pan-national palliative care organizations and individual countries need to emphasize palliative care to improve access by the population in need. 132
In the analysis of palliative care standards from 17 countries, there were several findings that are useful to the field of palliative care. There were four facets of analysis: the authority that creates the standards; primary domains; auxiliary domains; and the components of the Public Health Strategy. The study found that the WHO‘s definition of palliative care was employed by most of the countries (i.e., ten countries), even though some use earlier versions or variants of this definition. Seventeen countries embrace all the four domains of: physical, social, psychological, and spiritual. Among the auxiliary domains, most of the countries (i.e., sixteen) consider the ethical and legal aspects of palliative care to be an important part of their standards. However, the cultural aspects were considered as important by only 11 countries, while providing care for actively dying patients was important in standards of 13 countries. The structure and processes of care where patients‘ and families‘ expectations and goals are recognized as important were considered in standards of only 13 countries. There were four components of the Public Health Strategy that were examined specifically assessing whether they were implicit or explicit in standards for palliative care. The four components are: appropriate palliative care policies; adequate drug policy; palliative care education for health care workers, caregivers, and the public; and implementation of palliative care at all levels of society. Interestingly, all the 17 countries include education for health workers as an important component when developing standards for palliative care. Similarly, 13 countries consider implementation of palliative care at all levels of society in their standards while 11 countries have a drug policy component in their standards to ensure availability of opioids. However, it was difficult to discern how appropriate palliative care policies are created within standards, but at least 11 countries seemed to have made provisions for this component. From these observations, this study suggested a ―primary domains‖ framework to comprise the four basic domains (i.e., physical, social, psychological, and spiritual), which emphasizes the interdisciplinary nature of the field. Some scholars recommend that countries strive to offer all four domains for the patients (Connor, 2009). However, a lack of multiprofessional staff influences the effectiveness of palliative care programs, especially those in developing nations. Further, these basic tenets of palliative care relate to the holistic approach in providing relief to patients and families. Connor (2009) also emphasizes that the four domains are intertwined, with physical distress permeating the other three aspects more severely thus necessitating the palliative care to all patients needing these services. However, auxiliary 133
domains such as cultural, ethical, and legal were found to be similarly important but the primary domains are particularly important as they are comparable across contexts (Ahmedzai, et al., 2004; Connor, 2009; Otis-Green, et al., 2002). The authority or organization charged with the responsibility of creating the standards for palliative care was an important finding from the analysis of standards. Since palliative care standards began to appear in the early 1990s, the advocacy for such development was mainly from the non-governmental sector. The earliest standards that appeared were in Australia (1994) by Palliative Care Australia (PCA) and in Canada, consensus building efforts started in the early 1990s involving Canadian Association of Hospice Palliative Care (CAHPC). In both cases, the non-governmental organizations advocated for standardization in palliative care. This observation may relate to the fact that palliative care has its roots in the non-governmental sector as Webster, Lacey and Quine (2007) maintained. However, national governments have subsequently in recent years been involved in the development of palliative care standards. The involvement by both governmental and non-governmental organizations provides an excellent opportunity for private-public sector partnerships in improving the practice of palliative care through creating standards. These partnerships further can foster an effective and efficient way of utilizing resources to meet the needs of patients as well as those of their families. An example to illustrate this, for the Malawian standards, the Ministry of Health (i.e., a government agency) and Palliative Care Association of Malawi (PACAM) (i.e., the national association) collaborated to write the standards. Palliative care education for health care workers is also important for the implementation of palliative care. As Ahmedzai and colleagues (2004) pointed out, palliative care should preferably be delivered by a multiprofessional staff who possesses the right skills and qualifications. As such, education, training, and continuous professional development are necessary to ensure that the best quality of care is delivered as Connor (2009) observes. Standards for all 17 countries in the study emphasize palliative care education of some kind. For example, in the U.K., the standards emphasize workforce development of all staff who deliver care through education, training, and support. As a response, a considerable number of institutions of higher education in that country offer palliative care education to meet the workforce needs. This clearly indicates that countries make efforts to achieve quality palliative care by considering skills and knowledge development. However, education and training are also 134
required for patients, their families, professional and paid and unpaid caregivers, and the public in general by allowing access to information and education for palliative care. For instance, in Australian palliative care, standards and modules for training public and volunteers have been developed. This effort supplements the care provided professional staff (McDermott, 2005). Consistent to the literature, the public health approach recommends the need for inclusion of palliative care education at all levels of society (Stjernsward, 2007; Stjernsward, Foley & Ferris, 2007a). However, there were no modalities found both in the standards and in the literature on how education is to be delivered to the general public. From the empirical investigation of factors associated with growth of palliative care, four predictors were found to be significantly associated with the observed growth. First, the relationship between the government expenditure on health care and the existence of palliative care services was unusual in that a higher proportion of government spending on health care led to slightly lower odds for countries to have palliative care. In other words, the study found that countries with higher government expenditure in health care had lower chances of having palliative care which is contrary to the literature. Palliative care has developed within the systems of health care. Thus as governments invest more resources in health care, it is expected that palliative care growth is propelled by such investments. However, upon further examination, the data revealed that government in small island nations such as Tonga and Niue have relatively higher proportion expenditure on health care but there are no palliative care in those countries. In addition, the developing/developed nations divide further explains the reason for higher government expenditure in health care and lower chances of having palliative care. For instance, developing countries such as Angola, Algeria, and Lesotho have higher proportions of government expenditure in health care but have no palliative care services. In addition, Skolnik (2008) warned that even with seemingly higher proportions of government expenditure on health care, the outcomes differ remarkably between high-income and low-income nations. Although Webster, Lacey & Quine (2007) argue that palliative care has its roots in the non-governmental sector and the state does not necessarily have to provide this care, this may not be the case in the small island nations and developing nations. In addition, private-public partnership in palliative care may be necessary in such nations to bridge the gaps that governments leave in provision of such care. Also, encouraging public-private partnerships between government care and non-profit section may lead to the establishment of palliative care 135
in those countries. In such arrangement, the public sector (i.e., government) would provide resources and the private sector take the initiative to assess the needs and provide palliative care services. An example of the private-public partnership is the one between Help the Hospices and National Health Service (NHS) of the U.K. Help the Hospices is a registered charitable organization that supports palliative care throughout the U.K., thus providing a platform for connecting the palliative care providers with the resources offered by the government‘s health agency, NHS. If similar arrangements are planned in countries where palliative care has not been well established, significant progress can be made in establishing services and more government resources committed to palliative care. The other three salient factors associated with establishment of palliative care are population aging, HIV mortality, and greater density of health care workers. Advanced age is a risk factor for non-communicable diseases such as cancer, diabetes, cardiovascular diseases, among others. Countries that are experiencing an aging population are also likely to be facing the challenges associated with non-communicable and palliatable diseases. At a very advanced stage of these illnesses, palliative care may be necessary to provide relief to both patients and their families. This argument was supported by the findings of this study that palliative care presence is now likely in other societies. Industrialized nations have higher proportions of older adults than developing nations and proportionately higher prevalence of non-communicable diseases. Similarly, existence of palliative care is also influenced by HIV-related mortality. Countries with higher mortality from HIV have responded by initiating palliative care programs. Harding and Higginson (2005) pointed out that the growth in palliative care in the sub-Saharan Africa region accelerated in the wake of increasing deaths as the HIV prevalence in the region increased. Examples of countries that fit this description are Uganda and South Africa, where there are higher HIV mortality rates, at 68 per 1,000 and 79 per 1,000 in 2004 respectively, and where the palliative care is integrated in the health care system according to IOELC typology (i.e., both countries are at the highest level of development of palliative care). Whereas literature cites both HIV/AIDS and cancer as the most prevalent diseases in the palliative care arena, this study only found HIV-mortality was a significant predictor for palliative care existence in countries, especially, those in sub-Saharan Africa. These observations point to the developing- developed nation divide, where a very different host of factors contributes to palliative care
136
development (i.e., population aging in developed nations and HIV mortality in developing nations). The density of health care workers, measured as the combined number of nurses and physicians per 1,000 people in population, is related to whether a country has palliative care. The greater the number of nurses and physicians, the more likely a country has palliative care. This finding speaks to some degree to the nature of the health care system in any given country; higher density of health care workers suggests a more fully developed health care system.
The current status of palliative care at micro and macro levels The project employed a mixed-method approach to assess the development of palliative care at both micro and macro levels. The qualitative study in this project examined the frameworks underlying palliative care standards for hospice and palliative care practices. As Ferris (2004) and Connor (2009) pointed out, standards for palliative care explain the ways care is to be delivered for better outcomes. The study employed a conceptual framework for palliative care at micro- and meso- levels (i.e. primary domains framework) that was modified from the existing literature and the WHO definition of palliative care. The ―primary domains‖ framework was primarily supported by analysis in the countries where WHO definition is used to operationalize palliative care. As this study proposes, the multiprofessional staff and activities/tasks for each domain need to be articulated and also embedded in the framework for palliative care. There were four components of Public Health Strategy: palliative care policies at the national level; education for health care workers and general public; adequate drug policy; and implementation of palliative care at all levels of society. Only the 'education for health workers' component appeared consistent in all 17 countries. Also, for adequate drug policies and implementation of palliative care, countries have recognized the need to have drugs used to manage the physical aspects of palliative care. However, palliative care policies at the national level were not explicit from the palliative care standards because these are two separate documents and address different audiences but for the same purposes. It was apparent that some countries use standards and policies interchangeably. However, standards and policies are quite different because standards are statements that give guidance to the health care worker to provide
137
quality care to the patients while policies are overarching frameworks that create structures that allow the implementation and growth of palliative care. Standards can be created by either national associations (which are mostly non-profit entities) or governments, whereas policies are created, owned, and implemented by the government even though national associations may have input in the policymaking process. In other words, palliative care standards apply to micro and meso level settings (i.e. to patients, families, and facilities) while policies apply entirely to the macro-level. This made it somewhat difficult to determine if the Public Health Strategy is a practical framework for guiding the standards. In order to establish the relevance of Public Health Strategy in the context of palliative care, the second study in this project employed it as a guiding framework to investigate the salient factors related to the growth of palliative care. The quantitative study, on the other hand employed Public Health Strategy framework to investigate the factors that influence palliative care growth worldwide under several contexts suggested by Stjernsward, Foley and Ferris (2007a). The four components are: culture, disease demographics, socioeconomics, and health care systems. Country-level data from the World Bank and the WHO employed in this study reflected on the four contexts for implementation of palliative care enabling the use of the Public Health Strategy to guide the quantitative examination of the factors associated with the growth of palliative care. Despite the successful use of Public Health Strategy to guide the quantitative study, it became apparent that there is a lack of other frameworks to explain the growth of palliative care at the macro-level. That is, there are no appropriate guiding frameworks that exist to guide palliative care research at the macro-level and for cross-national comparisons. This study, however, highlights the need for such guiding frameworks to allow empirical investigations across nations for palliative care that have also been lacking, especially when comparing developing and developed nations. For instance, the EAPC has been conducting cross-national comparisons of palliative care for European nations but they are all homogeneous in terms of economic development. Perhaps, the relatively shorter period of time the field has existed (i.e., for about four decades) may not have been sufficient enough for such developments.
138
Importance of the current study There is an important need across the world to have an overall reference for standardization of palliative care. Although Ferris (2007) argued that setting global palliative care standards is impractical, there are fundamental areas that can sharpen the focus on better outcomes for patients and families. Lunder (2005) offered an explanation that standards in palliative care (and in most medical specialties) are developed to ensure that all staff involved are skilled and knowledgeable in order to perform their roles effectively (Lunder, 2005). This study found that countries have a shared focus that is embedded in the WHO definition and operationalization of palliative care. The primary domains, concerned with the alleviation of pain and distress of all the parties involved (i.e., patients and families), were present in all standards documents, while the auxiliary domains relate to how cultures handle the cases relating to terminal illness and imminent death are not consistently embedded. For example, the analysis presented in the auxiliary domains show some differences in consideration of cultural, ethical, and legal aspects when dealing with terminal illnesses and death unlike primary domains that universally address physical, social, psychological, and spiritual aspects. For instance, palliative care for ethnic minorities (e.g., for Maori in Australia and New Zealand) is included in the standards. Also, confidentiality and informed consent as part of ethical and legal considerations in several other countries show that not all countries pay particular attention to auxiliary domains. As such, auxiliary domains are likely to deal with complex situations despite the distress associated with the illness. In addition, auxiliary domains may also involve professions and skills different from those typical to palliative care settings. The lack of a clear borderline between palliative care and other fields that deal with end-of-life care and death makes the auxiliary domains more complex to analyze in the context of palliative care. For instance, legal, ethical, and cultural aspects of palliative care require professionals other than those in the mainstream palliative care. Legal professionals or experts, law enforcement, and criminal justice, are a few of those services that provide skills that are not typically found to be relevant under the primary domains. However, despite the complexities that may confront palliative care provision, this study was able to underscore the importance and universality of primary domains and also understand the absence of auxiliary domains from the mainstream palliative care.
139
Most of the approaches in palliative care seem to favor the multifaceted primary domains focus. The distress associated with impeding death may require more comforting approaches thus making the postulations of auxiliary domains to be extraneous to the care settings although there can be significant issues that can accentuate distress. However, focusing on the primary domains of palliative care present the health care workers (i.e. professionals and lay personnel) with opportunities to deal with concerns emanating from both the patients and families, unlike in general medical practice, which is patient-focused, and may necessarily address a few aspects (e.g. physical and psychological). The interaction of different skills, capabilities, and ethos in palliative care maximizes the opportunities for better outcomes. As noted, the palliative care standards offer an excellent arena for a micro-level framework to be adopted in a similar manner that the Public Health Strategy has been employed at the macro level. The enormous growth in palliative care services in the last decades since the establishment of the first modern hospice and international hospice movement by Cecily Saunders has been fueled by a number of factors. These factors, although not necessarily parallel across particular countries or regions, have brought the palliative care subspecialty to its current status globally. However, without empirical evidence, it certainly cannot be argued that any particular set of factors is indeed responsible for the observed growth. In addition, palliative care being an interdisciplinary area can be well understood by health workers other than physicians and nurses who were examined in this study. This study highlighted the importance of the greater density of health workers per population but only in part. This was because data on other important personnel such as community health workers was not available to fully understand how palliative care needs other than physical needs are met. In this context, the developing and developed nation divide was evident from the fact that in developing nations, there are inadequate health care personnel due to limited education and training capacity and brain drain of experienced health care workers to ―greener pastures‖ in the developed world.
Contribution to the palliative care literature This project makes some contributions to palliative care literature. First, it acknowledges that there are a few frameworks to guide the creation of palliative care standards. This important gap is exhibited by an earlier attempt by Lunder (2005) to examine standards, guided by the framework of Liverpool Clinical Pathway and to analyze standards documents from a number of
140
countries and hospice facilities across Europe and North America. In his work, he proposed clinical pathways as a model for standardization of palliative care. However, Lunder‘s approach had shortcomings because it focused on limited aspects (i.e. physical domain) of palliative care that can only be provided by specific professionals (i.e., nurses and physicians). Also, in Lunder‘s work, he analyzed documents that were clinical guidelines and country-level standards. Using such mix of documents (i.e., data) hinders the understanding of what standards should entail because they have a broader scope in the palliative care arena unlike clinical guidelines that are care setting specific. In contrast, the WHO describes palliative care to encompass broader facets and that it is also comprehensive. Thus, this study employed the approach recommended by the WHO to analyze only country-level standards of palliative care. Also, the sources of standards were extended to include countries from across different regions of the world. This approach illuminated the diversities that exist in palliative care standards in terms of particular illnesses common in palliative care, the primary and auxiliary, and the diversity of the authorities creating standards. Also, the study illustrates differences in how countries have considered the components of Public Health Strategy in palliative care standards, with palliative care education being the most common consideration that countries make when writing standards. This study employed wider perspectives on the processes of standardizing palliative care, which suggests the need to have a framework at the micro and meso levels. Past studies have not attempted to recommend the WHO domains as a framework for standardization palliative care. The literature has emphasized the importance of four domains (Connor, 2009; Gwyther & Krakauer, 2009; Watson, et al., 2009; WPCA, 2009). This recognition, thus, can be translated into good practice which all palliative care professionals can use as a reference. The primary domains framework employed in this study illustrates the centrality of focus to the patients/families with skills required for each of the domains listed. A further suggestion to the primary framework is to provide an exhaustive list of activities/tasks to be undertaken for each domain, without overlapping across domains because such activities and tasks are notably missing from the WHO primary domains list and also not very comprehensive on the WPCA list of activities. Therefore, the absent framework to be used in the care settings (i.e. facilities and other settings) for care receivers (i.e. patients and families) is a product of this study. The literature has acknowledged a lack of global level framework on the standardization of palliative 141
care (irrespective of the settings) but very little efforts have been made and the few efforts that so have been attempted at regional and pan-national levels (e.g. EPCA has gold standards for European nations) in Lunder 2005) study. The second contribution that this project makes to the palliative care literature is an empirical investigation using the macro-level framework (i.e. Public Health Strategy). Interestingly, at the macro-level, the Public Health Strategy seemed to be a reasonable framework to guide the investigation of the salient factors that are an impetus to the growth of palliative care services worldwide. Since the time that palliative care came into existence about four decades ago in the U.K., no empirical investigation has attempted to examine the factors that are associated with its growth into over 10,000 programs of one kind or another in 115 countries across the world. In addition, no previous studies have employed the Public Health Strategy as a framework to underscore its relevance in the growth of palliative care at the macro level (i.e. national, regional, and pan-national/international levels) across the globe. This study, therefore, made a contribution to the field palliative care by underlining some of the factors that are salient in bringing palliative care to its current status and by employing the Public Health Strategy as a framework to guide this investigation.
Limitations and directions for future research There were limitations related to both data and methodology in the current study. These limitations are not unique to cross-national comparisons because countries are not only diverse across variables but there are also variations in methods of collecting and compiling data. For instance, the standards of palliative care used for analysis were obtained from a variety of sources. These sources included the websites of national, regional, and professional associations, national governments‘ agencies of health such as departments or ministries of health, or a combination of any of these sources. For instance, Canada‘s and India‘s standards were jointly created by the national and regional associations. U.S.‘s standards are created by joint efforts of a national association and a number of professional associations. Malawi standards were created by a joint collaboration of Ministry of Health and national association. As a result of variations in authorities involved in standards, the level of expertise also differed consequently leading to a variation in the level of detail as well as in the quality of the standards. In this analysis, the depth of the detail and quality of the standards were paid less emphasis because the examination
142
entailed checking whether standards meet certain criteria. For instance, in examining the provision for legal and ethical aspects in the standards, the level of detail ranged from a few statements indicating how these aspects are considered to several detailed paragraphs on how the rights, confidentiality, and choices of the patients and families are safeguarded and respected in palliative care settings. As was the case with the standards of palliative care, the data used for the quantitative empirical investigation of the factors that fuel the growth of palliative care also had limitations. Country-level data on development indicators collected by the World Bank has limitations because some countries do not report their statistics for one reason or another. Among the main reasons identified by World Bank are political situations and weak statistical systems hampering data collection efforts by individual countries. In order to report complete data, the World Bank imputes the data with simple or weighted means. Similarly, the world health statistics created by the WHO regional bodies included imputed data where national governments do not report their statistics. Also the WHO uses population surveys to collect health data to supplement incomplete data from various countries. These imputations have the effect of reducing the variability that exists within and across countries, thus leading to biased coefficients (i.e., overestimation or underestimation). However, this study did further impute data in case of any missing values. Across all measures employed, there were a sufficient number of cases to enable run regression analysis and report significant findings at p<.05 significance level. Although the four-level typology developed by IOELC showed that most of the developed nations are in the top two levels (i.e. localized provision of palliative care and palliative care approaching integration with the health care system), this study examined only the influence of population aging and non-communicable diseases on the presence or absence of palliative care. Future research should therefore examine the relationships between the levels of palliative care development and population aging and non-communicable diseases since the developed countries have a higher proportion of older adults, and also most deaths in those countries are caused by non-communicable diseases. The IOELC typology has also conceptual weaknesses because at its creation, no previous frameworks or literature was used. Although Wright and colleagues (2006) acknowledged citing the EAPC criteria for classifying palliative care by either the type of service or by the number of individual services in a country, this approach was not sufficient to create the four-level 143
typology. They also provided features or characteristics of each level of the typology (see Appendix B), which potentially accentuate the disparities between developing and developed nations. That is, characteristics of each level of the typology assume that the manifestations of palliative care in developing and developed nations are comparable. Due to these reasons, the conceptual differences among the levels in the typology are unclear. For instance, at the lowest level in the typology, there are no characteristics to describe what is happening in those nations. In the second level, there are descriptions provided of characteristics of countries building the capacity to initiate palliative care services, while on the third level, descriptions are provided for characteristics of countries with localized provision of palliative care services. At the highest level, the typology presents descriptions of the characteristics of countries where palliative care services are approaching integration with health care systems. In the descriptions, it was quite difficult to understand the conceptual differences between one level and the preceding or succeeding level. To attempt to address this problem, all countries with no palliative care activity and those building capacity were classified into a single category of ‗no palliative care‘ because ideally none of them has services. Similarly, countries with localized provision and whose services are approaching integration were classified as ―has palliative care‖ because these countries have services of one kind or another even though the level of development may differ. This approach made allowed use of binary logistic regression because the outcome variable had two categories. Future research may, however, use the original categories and employ ordinal logistic regression approach because the four categories are in a descending order. Lastly, using the guiding framework of Public Health Strategy, the study employed cross-sectional data from several years from 2002 to 2006. Although this type of data may be ideal for time-trend analysis, the study was limited by the analytic technique used (i.e., binary logistic regression). Ideally, this analysis would have been better to examine if the Public Health Strategy indeed helps in integrating palliative care into the health care systems if longitudinal data were employed. Future research should attempt to investigate whether the Public Health Strategy pioneered by the WHO in 1990s has been successful in its mandate of helping countries integrate palliative care into the health care systems. In addition, future studies should also use time-trend data to examine the variations over time for the covariates because the four-level typology of palliative care shows there are variations in the development of palliative care services over time. 144
Concluding remarks In summary, it is evident that current development in the field has been partly a result of the WHO‘s role in palliative care (Ahmedzai, et al., 2004; Gwyther & Krakauer, 2009; WHO, 2002) and partly due to important bodies such as international hospice movements and the emergence of regional and pan-national associations. As such, growth of palliative care on the global scale has been a result of interaction of factors internal to the countries as well as those that are external to it. The internal factors include a combination of political, social, cultural and economic forces; demographics (i.e. population size); health care systems (i.e. design and financing structures of health care and human resources for health care); and the burden of disease (i.e. incidence and prevalence of certain chronic and progressive diseases and mortality rates). Palliative care therefore has a niche in gerontology because as societies age, the incidences and prevalence of chronic and terminal disease will increase as well.
Factors external to a country that influence the growth of palliative care globally include: the role of the international hospice movement, the role of the WHO, and pan-national associations. This study found a number of important factors internal to a country that past studies have not investigated. Unfortunately, few measures explored (membership to Commonwealth of Nations and colonialization by Western European powers) were thought to be external to a country and potentially influence introduction of modern health practices and subsequently palliative care establishment. However, these two measures were not found to be significant predictors of the presence or absence of palliative care. Therefore, as a suggestion for future research, factors external to a country needs to be empirically explored for their significance in establishing palliative care. A similar suggestion was made by Stjernsward (2007) that effective strategies for palliative care should involve stakeholders from within countries and in the international arena.
145
Appendix A – Countries by their income levels (2006)
Low-income Lower-middle income Upper-middle income High-income Afghanistan Albania American Samoa Andorra Bangladesh Algeria Antigua & Barbuda Aruba Benin Angola Argentina Australia Bhutan Armenia Barbados Austria Burkina Faso Azerbaijan Belize Bahamas Burundi Belarus Botswana Bahrain Cambodia Bolivia Chile Belgium Cameroon Bosnia & Herzegovina Costa Rica Bermuda Central African Brazil Croatia Brunei Republic Chad Bulgaria Czech Republic Canada Comoros Cape Verde Dominica Cayman Islands D R Congo China Equatorial Guinea Channel Islands Cote d‘Ivoire Colombia Estonia Cypress Eritrea Cuba Gabon Denmark Ethiopia Djibouti Grenada Faeroe Islands Gambia Dominican Republic Hungary Finland Ghana Ecuador Latvia France Guinea Egypt Lebanon French Polynesia Guinea-Bissau El Salvador Libya Germany Haiti Fiji Lithuania Greece India Georgia Malaysia Greenland Kenya Guatemala Mauritius Guam North Korea Guyana Mayotte Hong Kong Kyrgyzstan Honduras Mexico Iceland Laos Indonesia Northern Mariana Ireland Islands Lesotho Iran Oman Isle of Man Liberia Iraq Palau Israel Madagascar Jamaica Panama Italy Malawi Jordan Poland Japan Mali Kazakhstan Russia South Korea Mauritania Kiribati Seychelles Kuwait Moldova Macedonia Slovakia Liechtenstein Mongolia Maldives South Africa Luxembourg Mozambique Marshall Islands St. Kitts & Nevis Macao Myanmar Micronesia St. Lucia Malta Nepal Morocco St. Vincent & Monaco Grenadines Nicaragua Namibia Trinidad & Tobago Netherlands Niger Paraguay Turkey Netherlands Antilles Nigeria Peru Uruguay New Caledonia Pakistan Philippines Venezuela New Zealand Papua New Guinea Romania Norway Rwanda Samoa Portugal Sao Tome and Principe Serbia & Montenegro Puerto Rico Senegal Sri Lanka Qatar Sierra Leone Suriname San Marino Solomon Islands Swaziland Saudi Arabia 146
Somalia Syria Singapore Sudan Thailand Slovenia Tajikistan Tonga Spain Tanzania Tunisia Sweden Timor-Leste Turkmenistan United Arab Emirates Togo Ukraine United Kingdom Uganda Vanuatu United States Uzbekistan West Bank & Gaza Virgin Islands (U.S) Vietnam Yemen Zambia Zimbabwe
147
Appendix B – Typology descriptions for each level of palliative care development
1 No known 2 Capacity building 3 Localized provision 4 Approaching activity integration
No palliative activity Presence of sensitized A range of capacity Capacity building and identified personnel building localized activities but also: activities but also: Expressions of interest with key organisations Critical mass of activists in Critical mass of activists (e.g., APCA, HAU, one or more locations countrywide IAHPC, Hospice Information) Service established – often Range of providers and linked to home care service types Links established international) with service Local awareness/ support Broad awareness of providers palliative care Sources of funding Conference participation established (though may Measure of integration be heavily donor with mainstream service Visits to hospice-palliative dependent and relatively providers care organisations isolated from one another, with little impact on wider Impact on policy Education and training health policy) (visiting teams) Established education Morphine available centres External training courses undertaken Some training undertaken Academic links by the hospice Preparation of a strategy organisation Research undertaken for service development National Association Lobbying: policymakers/ health ministries
Source: Wright, et al. (2006). Available: http://www.eolc-observatory.net/global_analysis/regions_main.htm
148
Appendix C – Countries under each level of palliative care development No activity Capacity building Localized provision Approaching integration 1) Afghanistan 1) Algeria 1) Aland Islands 1) Argentina 2) American 2) Bahrain 2) Albania 2) Australia 3) Samoa 3) Belize 3) Armenia 3) Austria 4) Andorra 4) Bolivia 4) Azerbaijan 4) Belgium 5) Angola 5) British Virgin 5) Bangladesh 5) Canada 6) Anguilla Islands 6) Barbados 6) Chile 7) Antigua & 6) Brunei 7) Belarus 7) Costa Rica Barbuda 7) Cambodia 8) Bermuda 8) Denmark 8) Aruba 8) Democratic 9) Bosnia & 9) Finland 9) Benin Republic of Herzegovina 10) France 10) Bhutan Congo 10) Botswana 11) Germany 11) Burkina Faso 9) Cote d‘Ivoire 11) Brazil 12) Hong Kong 12) Burundi 10) Dominica 12) Bulgaria 13) Hungary 13) Cape Verdi 11) Ethiopia 13) Cameroon 14) Iceland 14) Central African 12) Fiji 14) Cayman Islands 15) Ireland Republic 13) Ghana 15) China 16) Israel 15) Chad 14) Haiti 16) Colombia 17) Italy 16) Comoros 15) Holy See 17) Congo 18) Japan 17) Cook Islands (Vatican) 18) Croatia 19) Kenya 18) Djibouti 16) Iran 19) Cuba 20) Malaysia 19) Equatorial Guinea 17) Kuwait 20) Cyprus 21) Mongolia 20) Eritrea 18) Lebanon 21) Czech Republic 22) New Zealand 21) Falkland Islands 19) Lesotho 22) Dominican 23) Netherlands 22) Faroes Islands 20) Madagascar Republic 24) Norway 23) French Guiana 21) Mauritius 23) Ecuador 25) Poland 24) French Polynesia 22) Mozambique 24) Egypt 26) Romania 25) Gabon 23) Namibia 25) El Salvador 27) Singapore 26) Greenland 24) Nicaragua 26) Estonia 28) Slovenia 27) Grenada 25) Oman 27) Georgia 29) South Africa 28) Guam 26) Palestine 28) Gibraltar 30) Spain 29) Guinea 27) Papua New 29) Greece 31) Sweden 30) Guinea-Bissau Guinea 30) Guadeloupe 32) Switzerland 31) Kiribati 28) Paraguay 31) Guatemala 33) Uganda 32) North Korea 29) Qatar 32) Guernsey 34) United Kingdom 33) Laos 30) Reunion 33) Guyana 35) United States of 34) Liberia 31) Rwanda 34) Honduras America 35) Libya 32) Saint Lucia 35) India 36) Liechtenstein 33) Seychelles 36) Indonesia 37) Maldives 34) Sudan 37) Iraq 38) Mali 35) Suriname 38) Isle of Man 39) Marshall Islands 36) Tajikistan 39) Jamaica 40) Martinique 37) The Bahamas 40) Jersey 41) Mauritania 38) Tunisia 41) Jordan 42) Mayotte 39) Turkey 42) Kazakhstan 43) Micronesia 40) Uzbekistan 43) South Korea 44) Monaco 41) Puerto Rico 44) Kyrgyzstan 45) Montenegro 45) Latvia 46) Montserrat 46) Lithuania 47) Nauru 47) Luxembourg 48) Netherlands 48) Macao Antilles 49) Macedonia 49) New Caledonia 50) Malawi 149
50) Niger 51) Malta 51) Niue 52) Mexico 52) Norfolk Island 53) Moldova 53) Northern Mariana 54) Morocco Islands 55) Myanmar 54) Palau 56) Nepal 55) Pitcairn 57) Nigeria 56) Saint Helena 58) Pakistan 57) Saint Kits & 59) Panama Nevis 60) Peru 58) Saint Pierre & 61) Philippines Miquelon 62) Portugal 59) Saint Vincent & 63) Russia the Grenadines 64) Saudi Arabia 60) Samoa 65) Serbia 61) San Marino 66) Sierra Leone 62) Sao Tome & 67) Slovakia Principe 68) Sri Lanka 63) Senegal 69) Swaziland 64) Solomon Islands 70) Tanzania 65) Somalia 71) Thailand 66) Svalbard 72) Gambia 67) Syria 73) Trinidad & 68) Timor-Leste Tobago 69) Togo 74) Ukraine 70) Tokelau 75) Uruguay 71) Tonga 76) United Arab 72) Turkmenistan Emirates 73) Turks & Caicos 77) Venezuela Islands 78) Vietnam 74) Tuvalu 79) Zambia 75) US Virgin Islands 80) Zimbabwe 76) Vanuatu 77) Wallis & Fortuna 78) Western Sahara 79) Yemen
150
Appendix D – Palliative care definitions (different revised versions)
1986 states that palliative care is:
‗‗…the active totals care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anti-cancer treatment,‘‘ (Ahmedzai, et al., 2004).
1990 states that palliative care is:
‗the active, total care of patients at a time when their disease is no longer responsive to curative treatment, and when control of pain (or other symptoms) and of psychological, social and spiritual problems is paramount,‘ (Collis, 2003).
2002 states that palliative care as:
‗an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual, (WHO, 2002, n.p.).
151
Appendix E – Member states of Commonwealth of Nations 1. Antigua & Barbuda 28. Mozambique 2. Australia 29. Namibia 3. The Bahamas 30. Nauru 4. Bangladesh 31. New Zealand 5. Barbados 32. Nigeria 6. Belize 33. Pakistan 7. Botswana 34. Papua New Guinea 8. Brunei Darussalam 35. Rwanda 9. Cameroon 36. Saint Kitts and Nevis 10. Canada 37. Saint Lucia 11. Cyprus 38. Saint Vincent and the Grenadines 12. Dominica 39. Samoa 13. Fiji Islands 40. Seychelles 14. The Gambia 41. Sierra Leone 15. Ghana 42. Singapore 16. Grenada 43. Solomon Islands 17. Guyana 44. South Africa 18. India 45. Sri Lanka 19. Jamaica 46. Swaziland 20. Kenya 47. Tanzania 21. Kiribati 48. Tonga 22. Lesotho 49. Trinidad & Tobago 23. Malawi 50. Tuvalu 24. Malaysia 51. Uganda 25. Maldives 52. United Kingdom 26. Malta 53. Vanuatu 27. Mauritius 54. Zambia
152
Appendix F – Moderating effects of GDP per capita growth on alcohol consumption ______
Parameter Std. Odds Variable name Wald X DF p-value 95% CI Estimate Error Ratios Intercept -2.3397 1.1106 4.438 1 0.0351* - - - GDP per capita 0.1064 0.0523 4.1478 1 0.0417* 1.112 1.004 1.232 growth Income level -0.4181 0.2779 2.2632 1 0.1325 0.658 0.382 1.135 Old age dep. ratio 0.163 0.0467 12.1843 1 0.0005*** 1.177 1.074 1.29 Pop. density -0.0696 0.1454 0.2289 1 0.6323 0.933 0.702 1.24 Pop. growth -0.0549 0.251 0.0479 1 0.8267 0.947 0.579 1.548 Commonwealth 0.3768 0.4849 0.6037 1 0.4372 1.458 0.563 3.771 Political/cultural 0.9056 0.5155 3.0857 1 0.079 2.473 0.9 6.794 Social health exp. 0.00954 0.0096 0.9992 1 0.3175 1.01 0.991 1.029 Alcohol consumption -0.0302 0.0700 0.1864 1 0.6659 0.97 0.846 1.113 per capita
Chi-sq. DF p-value Likelihood Ratio 56.4363 9 <.0001*** Wald 30.3726 9 <.0001*** ______*p<.05, **p<.01, ***p<.001
153
References Aboderin, I. (2008). Advancing health service provision for age-related non-communicable disease and older persons in Africa: Identifying key information and training needs. AFRAN Policy-Research Dialogue Series No. 2, African Research on Ageing Network (AFRAN). Oxford Institute of Ageing, University of Oxford. Abu-Saad, H. H. (2000). Palliative care: an international view. Patient Education and Counseling, 41(1), 15-22. Addington-Hall, J., & Karlsen, S. (2005). A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care. Palliative Medicine, 19(1), 40-48. Agresti, A. (1996). An introduction to categorical data analysis. 1st edition. New York: John Wiley & Sons, Inc. Agresti, A. (2007). An introduction categorical data analysis. 2nd Edition. New York: John Wiley & Sons, Inc. Allison, P. (1999). Logistic regression using the SAS system: theory and practice. Cary, NC: SAS Institute, Inc. Altmayer, L. (1999). Hot-Deck Imputation: A Simple DATA Step Approach. Washington, DC: U.S. Bureau of the Census. American Academy of Hospice and Palliative Medicine (n.d.). Research funding for palliative care. Glenview, IL: AAHPM. American Cancer Society. (2007). Cancer and alcohol. Atlanta, GA: American Cancer Society. Retrieved on March 9, 2011 from http://www.cancer.org/acs/groups/content/@healthpromotions/documents/document/acsq -017622.pdf American Cancer Society. (2009). Cancer Facts & Figures 2009. Atlanta, GA: American Cancer Society. Anand, S., &Bärnighausen, T. (2004). Human resources and health outcomes: cross-country econometric study. The Lancet, 364, 1603–09. Andridge, R. R., & Little, R. J. A. (2010). A Review of Hot Deck Imputation for Survey Non- response. International Statistical Review, 78, 40–64.
154
APCA. (2007). National palliative care associations. Retrieved on October 31, 2010 from http://www.apca.org.ug/index.php?ty=page&i=95. APCA. (n.d). Palliative care situation in Cameroon. Retrieved on October 31, 2010 from http://www.apca.co.ug/advocacy/workshop/Ghana/Cameroon%20Presentation.pdf Ashcroft, R. (2005). Death policy in the United Kingdom. In R. H. Blank & J. C. Merrick (Eds.), end-of-life decision making: a cross-national study. Cambridge, MA: The MIT Press. Baidoo, R. (2009). Toward a comprehensive healthcare system in Ghana. (Unpublished Thesis, Ohio State University). Bingley, A., & Clark, D. (2009) A Comparative Review of Palliative Care Development in Six Countries Represented by the Middle East Cancer Consortium (MECC). Journal of Pain and Symptom Management, 37, 287-296. Brennan, F. (2007). Palliative Care as an International Human Right. Journal of Pain and Symptom Management, 33(5), 494-499. Brown, G. (2008). The living end: the future of death, aging, and immortality. New York: McMillan. Bruera, E. (1993). Palliative care in Latin America. Journal of Pain and Symptom Management 8, 365-368. Callaway, M., Foley, K. M., De Lima, L., Connor, S. R., Dix, O., Lynch, T. et al. (2007). Funding for Palliative Care Programs in Developing Countries. Journal of Pain and Symptom Management, 33(5), 509-513. Chakravarty, S. R. (2003). A Generalized Human Development Index. Review of Development Economics, 7(1), 99-114. Chen L et al. (2004). Human resources for health: overcoming the crisis. The Lancet, 364, 1984– 1990. Clark, D. (2007). End-of-life care around the world: achievements to date and challenges remaining. OMEGA, 56, 101 – 110. Clark, D., & Centeno, C. (2006). Palliative care in Europe: an emerging approach to comparative analysis. Clinical Medicine, 6, 197-201. Clark, D., Small, N., Wright, M., Winslow, M., & Hughes, N. (2005). A Bit of Heaven for the Few?: An oral history of the modern hospice movement in Britain and Ireland. Lancaster, UK. Lancaster University Press. 155
Clark, D., ten Have, H., & Janssens, R. (2000). Common threads? Palliative care developments in seven European countries. Palliative Medicine, 14, 479 – 490. Clark, D., Wright, M., Hunt, J., & Lynch, T. (2007). Hospice and Palliative Care Development in Africa: A Multi-Method Review of Services and Experiences. Journal of Pain & Symptom Management, 33, 698-710. Claxton-Oldfield, S., & Claxton-Oldfield, J. (2007). The Impact of Volunteering in Hospice Palliative Care. American Journal of Hospice and Palliative Medicine®, 24(4), 259-263. Clover, A., Browne, J., McErlain, P., & Vandenberg, B. (2004). Patient approaches to clinical conversations in the palliative care setting. Journal of Advanced Nursing, 48, 333-341. Cole F.L. (1988) Content analysis: process and application. Clinical Nurse Specialist 2, 53–57. Collins, K. & Harding, R. (2007). Improving HIV management in sub-Saharan Africa: How much palliative care is needed? AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 19, 1304-1306. Collis, K. (2003). The psychological aspects of palliative care. Surgery (Oxford), 21, 265-268. Commonwealth Secretariat, The. (2009). The commonwealth. London: The Commonwealth Secretariat. Connor, S. R. (2009). Hospice and palliative care: the essential guide. 2nd edition. New York: Routledge Taylor & Francis Group. Copp, G. (1998). A review of the current theories of death and dying. Journal of Advanced Nursing, 28, 382 – 390. Defilippi, K. M., & Cameron, S. (2007). Promoting the Integration of Quality Palliative Care— the South African Mentorship Program. Journal of Pain and Symptom Management, 33, 552-557. Downing, J., Powell, R., & Mwangi-Powell, F. (2010). Home-Based Palliative Care in sub- Saharan Africa. Home Healthcare Nurse, 28, 298–307. Eagar, K., Green, J., & Gordon, R. (2004). An Australian casemix classification for palliative care: technical development and results. Palliative Medicine, 18, 217-226. Elo, S., & Kynga, S. H. (2008). The qualitative content analysis process. Journal Advanced Nursing, 62, 107-115. Enderle, J. D., Bronzino, J. D., & Blanchard, S. M. (2005). Introduction to biomedical engineering. Burlington, MA: Elsevier Academic Press. 156
Fernandes, R., Braun, K., Ozawa, J., Compton, M., Guzman, C., & Somogyi-Zalud, E. (2010). Home-Based Palliative Care Services for Underserved Populations. Journal of Palliative Medicine, 13, 413-419. Ferrell, B., Connor, S., Cordes, A., Dahlin, C., Fine, P., Hutton, N., et al. (2007). The National Agenda for Quality Palliative Care: The National Consensus Project and the National Quality Forum. Journal of Pain & Symptom Management, 33, 737-744 Ferris, F. (2004). Standards and Guidelines: Do They Matter? Journal of Palliative Medicine, 7, 750-752. Ferris, F. D., Balfour, H. M., Bowen, K., Farley, J., Hardwick, M., Lamontagne, C. et al. (2002). A Model to Guide Patient and Family Care. Journal of Pain and Symptom Management, 24, 106-123. Ferris, F. D., Gómez-Batiste, X., Fürst, C. J., & Connor, S. (2007). Implementing quality palliative care. Journal of Pain and Symptom Management, 33, 533-541. Fried, B. J., & Gaydos L. M. (2002). World health systems: challenges and perspectives. Chicago: Health Administration Press. Gaydos, L. M., & Veney, J. (2002). The nature and etiology of disease. In B. J. Fried & L. M. Gaydos (Eds.), World health systems: challenges and perspectives, pp. 67 – 82. Chicago: Health Administration Press. Gelfman, L. P., Meier, D. E., & Morrison, R. S. (2008). Does palliative care improve quality? A survey of bereaved family members. Journal of Pain and Symptom Management, 36, 22- 28. Glass, A. P., Chen, L., Hwang, E., Ono, Y., & Nahapetyan, L. (2010). A Cross-Cultural Comparison of Hospice Development in Japan, South Korea, and Taiwan. Journal of Cross-Cultural Gerontology, 25, 1 - 19. Goh, C. R. (2008). Successful development of hospice and palliative care in Asia. Conference presentation at 13th International Conference for Infectious Disease, Kuala Lumpur, MALAYSIA, 19th-22nd June 2008. Good, M., et al. (2000). Palliative care issues in sub-Saharan Africa. International Journal of Palliative Nursing, 6, 108. Gronemeyer, R., Fink, M., Globish, M., & Schumann, F. (2005). Project on hospice and palliative care in Europe: Helping people at the end of their lives. Berlin: Lit Verlag. 157
Gwyther, L. & Krakauer, E. (2009). WPCA policy statement for defining palliative care. London: World Palliative Care Alliance. Gwyther, L. & Rawlinson, F. (2007). Palliative Medicine Teaching Program at the University of Cape Town: Integrating Palliative Care Principles into Practice. Journal of Pain and Symptom Management, 33, 558-562. Gwyther, L., Brennan, F., & Harding, R. (2009). Advancing palliative care as a human right. Journal of Pain and Symptom Management, 38, 767-774. Harding, R., Powell, R. A., Downing, J., Connor, S. R., Mwangi-Powell, F., Defilippi, K. et al. (2008). Generating an African Palliative Care Evidence Base: The Context, Need, Challenges, and Strategies. Journal of Pain and Symptom Management, 36, 304-309. Harding, R., Stewart, K., Marconi, K., O‘Neil, J. F. & Higginson, I. J. (2003). Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services, challenges and priorities. BMC Public Health, 33, 1 -6. Harding, R., & Higginson, J. (2005). Palliative care in sub-Saharan Africa. The Lancet, 365, 1971-1977. Help the Hospices. (n.d.). An Advocacy Tool Kit for Hospices and Palliative Care Organisations. London: Help the Hospices. Hoffman, S. J. (2010). The evolution, etiology and eventualities of the global health security regime. Health Policy Planning, 25, 510-522. Hospice Care Kenya. (2008, August). Kijabe Hospital – Palliative Care Unit. Summer Appeal Newsletter. Retrieved on May 1, 2010 from http://www.hospicecarekenya.com/doc/NLS08.pdf Hsieh, H., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277 – 1288. Huskamp, H. A., Buntin. M. B., Wang, V., & Newhouse, J. P. (2004). Providing care at the end- of-life: do Medicare rules impede good care? In C. Harrington & C. L. Estes (Eds.), Health policy: crisis and reform in the U.S. health care delivery system, 4th ed., pp.138 – 146. Sudbury, MA: Jones and Bartlett Publishers. IAHPC. (2009). History of International Association of Hospice and Palliative Care. Houston, TX: IAHPC. Available on http://www.hospicecare.com/History/history.htm retrieved May 13, 2010. 158
IAHPC. (2010). Promoting Hospice and Palliative Care Worldwide. Houston, TX: IAHPC. Retrieved on May 2, 2010 from http://www.hospicecare.com/contact.htm IAHPC. (n.d). Hospice and palliative care travelling fellows 1998 – 2007. Houston, TX: IAHPC. Retrieved October 31, 2010 from http://www.hospicecare.com/travelfellow/fellows.htm International Observatory on End of Life Care (IOLC). (2003 – 2008). Country Reports. Lancaster, UK: IOLC. Accessed from http://eolc- observatory.net/global_analysis/country_by_country.php Jaspers B, & Schindler T (2005) Stand der Palliativmedizin und Hospizarbeit in Deutschland und im Vergleich zu ausgewählten Staaten. Gutachten im Auftrag der Bundestags-Enquete- Kommission ―Ethik und Recht der modernen Medizin‖. Access on May 2, 2010 from website: http://www.bundestag.de/parlament/kommissionen/ethik_med/gutachten/gutachten02_pal liativmedizin.pdf Kastenbaum, R. & Wilson, M. (1997). Hospice care on the international scene: today and tomorrow. In D. C. Saunders, & R. Kastenbaum, Hospice on the International Scene, pp. 267 – 272. New York: Springer Publishing Company. Kirn, M. (1998). [Review of the book Hospice Care on the International Scene]. Journal of Palliative Medicine, 1, 201 – 202. Krakauer, E. L. (2008). Just palliative care: responding responsibly to the suffering of the poor. Journal of Pain Symptom Management, 36, 505 – 512. Krakauer, E. L., Ngoc, N. T. M., Green, K., Van Kham, L., & Khue, L. N. (2007). Vietnam: Integrating Palliative Care Into HIV/AIDS and Cancer Care. Journal of Pain and Symptom Management, 33(5), 578-583. Lassey, M. L., Lassey, W. R. & Jinks, M. J. (1997). Health care systems around the world: characteristics issues, and reforms. Upper Saddle River, NJ: Prentice Hall. Lamba, S., & Quest, T. E. (2011). Hospice care and the emergency department: rules, regulations, and referrals. Annals of Emergency Medicine, 57, 282-290. Long, J. S. (1997). Regression models for categories and limited dependent variables: advanced quantitative techniques in the social sciences. Thousands Oak, CA: Sage Publications.
159
Lunder, U. (2005). Identifying effective ways of implementation of palliative care into Slovene health care system. Research paper for International Policy Fellowship (November, 2005). Lunder, U., Furst, C.J., Sauter, S. (2003). Palliative care standards - An up to date review. The Hague: EAPC Conference, Book of abstract. Maddocks, I. (2000). Teaching palliative care in east Asia. Palliative Medicine, 14, 535-537. Matzo, M., & Sherman, D. W. (2010). Palliative care nursing: quality care to end of life. New York: Springer Publishing Company. McDermott, E. (2005). Advocating hospice and palliative care: challenges, contexts, and changes. Report of the 2nd Global Summit of National Hospice and Palliative Care Associations 15-16th March 2005, Seoul, Korea. Lancaster University, UK: IOELC. McElvaine, D. (1997). Zimbabwe: the Island Hospice experience. In D. C. Saunders & R. Kastenbaum (Eds.), Hospice on the International Scene, pp. 13 – 20. New York: Springer Publishing Company. McNamara, B. (2004). Good enough death: autonomy and choice in Australian palliative care. Social Science and Medicine, 58, 929-938. Mmbando, P., Hartwig, K. A., Hofgren, B., DiSorbo, P., Smith, S. D., & Hartwig, K. N. (2009). Care for the most vulnerable children in Tanzania: a faith-based model of care and support for children affected by HIV. Journal of Health Care for the Poor and Underserved, 20, 13-21. Mori, M., Parsons, H. A., De la Cruz, M., Elsayem, A. F., et al. (2010). Changes in symptoms and inpatient mortality among advanced cancer patients admitted to a palliative care unit in a comprehensive cancer center. Journal of Clinical Oncology, 28, 15s. Moyano, J., Zambrano, S., Ceballos, C., Santacruz, C. M., & Guerrero, C. (2008). Palliative sedation in Latin America: survey on practices and attitudes. Supportive Care in Cancer, 16(5), 431 - 435. Munday, D. F., Johnson, S. A., & Griffiths, F. E. (2003). Complexity theory and palliative care. Palliative Medicine, 17, 308 – 309. Murata, H. (2003). Spiritual pain and its care in patients with terminal cancer: Construction of a conceptual framework by philosophical approach. Palliative and Supportive Care, 1, 15– 21. 160
National Consensus Project (NCP). (2004). Clinical practice guidelines for quality palliative care, Second Edition. Pittsburg, PA: National Consensus Project for Quality Palliative Care. Accessed on May 13, 2010 from http://www.nationalconsensusproject.org/guideline.pdf National Consensus Project for Quality Palliative Care (2009). Clinical Practice Guidelines for Quality Palliative Care, Second Edition. Accessed on June 6, 2010 from http://www.nationalconsensusproject.org National Hospice and Palliative Care Organization (NHPCO). (2008). International Standards/Guidelines of Practice. Alexandria, VA: NHPCO. Accessed on March 11, 2010 from www.nhpco.org/standards Neundorf, K. (2002) The Content Analysis Guidebook. Sage Publications Inc., Thousand Oaks, CA. NICE. (2004). Improving Supportive and Palliative care for adults with cancer. London: National Institute for Clinical Excellence (NICE). Accessed on February 11, 2010 from http://www.nice.org.uk/CSGSP. Norwegian Association for Palliative Medicine [NFPM]. (2004). Standards for palliative care. The Norwegian Medical Association. Norwood, F. (2009). The maintenance of life: preventing social death through euthanasia talk and end-of-life care – lessons from The Netherlands. Durham, NC: Carolina Academic Press. O‘Connell, A. A. (2006). Logistic regression models for ordinal response variables. Thousand Oaks, CA: Sage Publications, Inc. Omran, A. R. (1971). The epidemiology transition: a theory of the epidemiology of population change. The Milbank Memorial Fund Quarterly, 49, 509 – 538. Omran, A. R. (2005). The epidemiology transition: a theory of the epidemiology of population change. The Milbank Quarterly, 83, 731–757. Otis-Green, S., Sherman, R., Perez, M., Baird, R., & Pamela, B. (2002). An integrated psychosocial- spiritual model for cancer pain management. Cancer Practice, 10, s58-s65. Paice, J. A., Ferrell, B. R., Coyle, N., Coyne, P. & Callaway, M. (2008). Global efforts to improve palliative care: the International End-of-Life Nursing Education Consortium Training Programme. Journal of Advanced Nursing, 61, 173–180. 161
Palliative Care Association of Malawi. (2008). Service delivery. Lilongwe, Malawi: PACAM. Retrieved on March 12, 2011 from http://palliativecaremalawi.org/service_delivery.html Palliative Care Australia (1999). Standards for Palliative Care Provision. 3rd Edition. Canberra, Australia: PCA. Palliative Care Australia. (2003). Palliative Care Service Provision in Australia: A Planning Guide. 2nd Edition. Canberra, Australia: PCA. Palliative Care Australia. (2005). Standards for providing palliative care for all Australians. Canberra, Australia: PCA. Pastrana, T., Jünger, S., Ostgathe, C., Elsner, F., & Radbruch, L. (2008). A matter of definition – key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine, 22, 222-232. Payne, M. (2006). Social objectives in cancer care: the example of palliative day care. European Journal of Cancer Care, 15(5), 440-447. Pessini, L. (2005). Ethical questions related to end-of-life decisions: the Brazilian reality. In R. H. Blank & J. C. Merrick (Eds.), end-of-life decision making: a cross-national study. Cambridge, MA: The MIT Press. Powell, R. A., Namissango, E., Teera-Sseentoogo, J., Mogoi, B. N. et al. (2008). Bridging the gap: extending palliative care services to older people in two East African countries. A Research Report. Kampala, Uganda: African Palliative Care Association. Retrieved from http://www.apca.org.ug/uploads/file/Help%20the%20Aged%20report%20Dec%2008_fin al%20041208.pdf on May 12, 2010. Praill, D., & Pahl, N. (2007). The worldwide palliative care alliance: networking national associations. Journal of Pain and Symptom Management, 33, 506 – 508. Roemer , I. M. (1993). National Health Systems of the World: The issues. New York: Oxford University Press. Roemer, I. M. (1991). The countries. New York: Oxford University Press. Rossignol, A. (2005). Principles and practice of epidemiology: an engaged approach. New York: McGraw-Hill. Salomon, J. A., Gakidou, E. E., & Murray, C. J. L. (n.d.) methods for modeling the HIV/AIDS epidemic in sub-Saharan Africa. Retrieved March 21, 2011 from http://www.who.int/healthinfo/paper03.pdf 162
Sanders, J. (2002). The nature and etiology of disease. In B. J. Fried & L. M. Gaydos (Eds.), World health systems: challenges and perspectives, pp. 67 – 82. Chicago: Health Administration Press. Saunders, D. C., & Kastembaum, R. (1997). Hospice on the International Scene. New York: Springer Publishing Company. Schutt, R. K. (2006). Investigating the social world: the process and practice of social research. Thousand Oaks, CA: Pine Forge Prss. Selwyn, P. A. (2007). Palliative care in HIV/AIDS. In A. M. Berger, J. L. Shuster, & J. H. von Roenn (Eds.), Principles and practice of palliative care and supportive oncology, pp. 833 - 848. Philadelphia: Lippincott Williams & Wilkins. Sepulveda, C., Marlin, A., Yoshida, T., & Ulrich, A. (2002). Palliative care: The World Health Organization‘s global perspective. Journal of Pain & Symptom Management, 24(2), 91- 96. Sharma K., Oliver D., Blatchford G. & Higginbottom P. (1993). Medical care in hospice day care. Journal of Palliative Care 9, 42–43. Simpson, D. A., & Pitorak, E. F. (1998). Hospice or palliative care? American Journal of Hospice and Palliative Medicine, 15(2), 122-123. Singer, P. A., & Bowman, K. W. (2002). Quality end-of-life care: A global perspective. BMC Palliative Care, 1, 1 -10. Singer, Y., et al. (2000). Worldwide hospice and palliative care: Focus on Africa. American Journal of Hospice and Palliative Medicine, 17, 298-9. Skolnik, R. L. (2008). Essentials of global health. Sudbury, MA: Jones and Bartlett Publishers, Inc. Social Security Administration. (2008). Social security throughout the world: Asia and the Pacific. Washington, DC: Social Security Administration, Office Retirement and Disability Policy. Stjernsward, J. (1997). The international hospice movement from the perspective of the World Heal Organization. In D. C. Saunders & R. Kastenbaum (Eds.), Hospice on the International Scene, pp. 13 – 20. New York: Springer Publishing Company. Stjernsward, J. (2007). Palliative Care: The Public Health Strategy. Journal of Public Health Policy, 27, 42 – 55. 163
Stjernward, J., Foley, K. M., & Ferris, F. D. (2007a). The public health strategy of palliative care. Journal of Pain and Symptom Management, 33, 486 – 493. Stjernsward, J., Foley, K. M., & Ferris, F. D. (2007b). Integrating palliative care into national policies. Journal of Pain and Symptom Management, 33, 514-520. Stjernward, J. & Clark, D. (2003). Palliative Medicine – a global perspective. In D. Doyle, G.W.C. Hanks, N. Cherny, & K. C. Calman (Eds.). Oxford Textbook of Palliative Medicine, 3rd edition. Oxford: Oxford University Press. Sutton, L. (2005). How basic is palliative care? Responses to Harmala Gupta: NICE guidance and the need for palliative care development in the UK. International Journal of Palliative Nursing, 11, 35. Swanson, D., Siegel, J. S., Shryock, H. S. (2004). Methods and materials of demography. San Diego: Elsevier Academic Press. Torres Vigil, I., Aday, L. A., De Lima, L., & Cleeland, C. S. (2007). What Predicts the Quality of Advanced Cancer Care in Latin America? A Look at Five Countries: Argentina, Brazil, Cuba, Mexico, and Peru. Journal of Pain and Symptom Management, 34, 315- 327. Tse, D. M., Chan, K. S., Lam, W. M., Leu, K., & Lam, P. T. (2007). The impact of palliative care on cancer deaths in Hong Kong: a retrospective study of 494 cancer deaths. Palliative Medicine, 21, 425-33. U.S. Department of State. (2009). Independent States in the World: A factsheet. Washington, DC: Bureau of Research and Intelligence. UNAIDS. (2008). The Global AIDS Epidemic 2008. New York: Joint United Nations Programme on HIV/AIDS. United Nations (2005). World population prospects: The 2004 revision. New York, NY: United Nations. Vallin, J. & Mesle, F. (2004). Convergences and divergences in mortality: a new approach to health transition. Demographic Research, Special Collection Article 2, 11 – 44. Vargas-Schaffer, G. (2010). Is the WHO analgesic ladder still valid? Twenty-four years of experience. Canadian Family Physician, 56, 514- 17.
164
Veney, J. (2002). Introduction to the countries. In B. J. Fried & L. M. Gaydos (Eds.), World health systems: challenges and perspectives, pp. 67 – 82. Chicago: Health Administration Press. Vivat, B. (2008). Measures of spiritual issues for palliative care patients: a literature review. Palliative Medicine, 22, 859–868. Watson, M. Lucas, C., Hoy, A. & Wells, J. (2009). Oxford handbook of palliative care. Oxford: Oxford University Press. Watson, M., Lucas, C., Hoy, A., & Buck, I. (2005). Oxford handbook of palliative Care. Oxford: Oxford University Press. Webster, R., Lacey, J., & Quine, S. (2007). Palliative care: a public health priority in developing countries. Journal of Public Health Policy, 28, 28 – 39. Weeks, J. R. (2008). Population: An introduction to concepts and issues, 10th ed. Belmont, CA: Thomson Wadsworth. Wenk, R. & Bertolino, M. (2007). Palliative care development in South America: a focus on Argentina. Journal of Pain and Symptom Management, 33, 645 – 650. World Atlas. (n.d.). How many countries are there in the world? Galveston, TX: World Atlas. Retrieved on May 31, 2010 from http://www.worldatlas.com/nations.htm World Bank. (2006). 2006 World Development Indicators. Washington, DC: World Bank. International Economics Department Development Data Group. World Health Organization. (1986). Cancer Pain Relief. First Edition. Geneva: WHO. ______. (1996). Cancer Pain Relief: with a guide to opioids availability. Second Edition. Geneva: WHO. ______. (2000). The World health report: health systems: improving performance. Geneva: WHO. Accessed on January 30, 2010 from http://www.World Health Organization.int/whr/2000/en/whr00_en.pdf ______. (2002). WHO definition of palliative care. Geneva: WHO. Retrieved February 7, 2010 from http://www.WorldHealthOrganization.int/cancer/palliative/definition/en ______. (2003). The World Health Report 2003: Shaping the future. Geneva: WHO. ______. (2004). Better palliative care for older people. Geneva: WHO. retrieved on September 7, 2010 from: http://www.euro.who.int/__data/assets/pdf_file/0009/98235/E82933.pdf ______. (2006). World Health Statistics 2006. Geneva: WHO 165
______. (2007). The World Health Organization’s Fight Against Cancer: Strategies That Prevent, Cure and Care. Geneva: WHO. Retrieved on May 08, 2010 from http://www.who.int/cancer/publicat/WHOCancerBrochure2007.FINALweb.pdf ______. (2011). Cancer. Geneva: The WHO Media Center. Retrieved on March 28, 2011 from http://www.who.int/mediacentre/factsheets/fs297/en/index.html. World Palliative Care Alliance (WPCA). (2009). Quality and Standards. London: WPCA. ______. (2010). About palliative and hospice care: what is hospice and palliative care? London: WPCA. Retrieved May 20, 2010, from http://www.thewpca.org/about-hospice- and-palliative-care/ Wright, M. (2003). Models of hospice and palliative care in resource poor countries: issues and opportunities. Lancaster University, UK: International Observatory on End of Life Care, Institute for Health Research. Wright, M., Hamzah, E., Phungrassami, T., & Bausa-Claudio, A. (2009). Hospice and Palliative Care in Southeast Asia: A review of developments and challenges in Malaysia, Thailand and the Philippines. New York: Oxford University Press (USA). Wright, M., Lynch, T., & Clark, D. (2008). A review of donor organisations that support palliative care development in five world regions. A report prepare for the Open Society Institute. Lancaster University, UK: International Observatory End of Life Care, Institute for Health Research. Wright, M., Wood, J., Lynch, T., & Clark, D. (2006). Mapping the levels of palliative care development: a global view. Lancaster University, UK: International Observatory End of Life Care, Institute for Health Research. Yancik, R. (2005). Population aging and cancer. A cross-national concern. Cancer Journal, 11, 437 – 441.
166