Recovering Christian Hospitality in End of Life Care:
Honouring the Mi’kmaq People in Death and Dying
By
Debra Garnita Orton
B.A., University of Toronto, 1990
M.Div., Victoria University, of the University of Toronto, 2001
Sacred Theology Master, University of Winnipeg, 2006
Submitted to the Faculty of Theology, Acadia Divinity College,
In partial fulfillment of the requirements for
The degree of Doctor of Ministry
Acadia Divinity College,
Acadia University
Spring Convocation, 2015
© by DEBRA GARNITA ORTON, 2015
Dedicated to Bear River First Nations
and
other Aboriginal Elders from Atlantic Canada
who have welcomed me into their lives, community and hearts.
Wela’lioq (Thank you, plural)
ii
This thesis by Debra Garnita Orton was defended successfully in any oral examination on:
The examining committee for the theses was:
______Dr. Anna Robbins, Chair Date
______Dr. Grace Johnston, External Examiner Date
______Dr. Carol Ann Janzen, Internal Examiner Date
______Dr. Maxine Hancock, Supervisor Date
This thesis is accepted in its present form by Acadia Divinity College as satisfying the thesis requirements for the degree Doctor of Ministry.
iii
I, Debra Garnita Orton, hereby grant permission to the Head Librarian at Acadia University to provide copies of this thesis, on request, on a non-profit basis.
______Debra Garnita Orton Date
______Dr. Maxine Hancock, Supervisor Date
iv
Acknowledgement
I am very blessed to receive the hospitality of others who continually come into my life at just the right moment. Each of these individuals and/or groups of people has created a free and friendly space that enabled me to grow in both my spirituality and humanity. I would now like to acknowledge Dr. Maxine Hancock, my director who, in her own unique way, modeled hospitality as a creative interchange between people. She accomplished this by challenging me in a positive and encouraging fashion so that I could grow intellectually, spiritually and in my own humanity. Henry Nouwen claims that teaching is “the creation of space where students and teachers can enter into a fearless communication with each other and allow their respective life experiences to be their primary and most valuable source of growth and maturation, and mutual trust.” Dr. Hancock created such a hospitable place with her warmth, kindness and firmness energizing my inner spirit and intellectual abilities.
I would also like to recognize Dr. Joan Campbell, CSM., Dr. Lynne Harrigan, M.D., Michele Gerrard, CA and Dr. Shelley Hustins, DVM., who have been my support system throughout this entire work. Their ongoing support, encouragement and patience have taught me a very valuable lesson in life; friends are a gift to cherish and care for. The hospitality that has been extended to me through these wonderful women has provided me with hope and strength within my own spirit, especially when I had moments of feeling emotionally, spiritually and intellectually exhausted. I am grateful also to Dr. Anne Barry, MD and Eileen Shaw, RN for taking the time to read this thesis and provide helpful suggestions. I would also like to thank Angie Davidson for taking time from her busy schedule to carefully review and fine tune the technical aspects of my work.
It is with deep appreciation and gratitude that I give a special thanks to the librarians at Annapolis Valley District Health Authority, Nova Scotia Community Colleges and Acadia University. Librarians have a special place in their hearts for students and have a special gift for accessing research materials with great ease, keeping students calm and on track with their work.
Last but not least, I would like to salute Ms. Lily Pad and Ma (fictitious names) who awakened my spirit to spiritual hospitality by inviting me into their lives while living with dying and moving to active dying. Both of these women made me realize that the relationship between the spiritual care practitioner and the one who is dying is a
v reciprocal relationship. As I tried to make sense out of this new found relationship with the terminally ill, it was the Spirit of God who guided me to read Matt 10:40-42, John 13:20 and sent me on a journey to discover the true meaning of biblical hospitality. I will always be grateful for the spiritual connection that I have experienced with Abraham, Sarah and Jesus for modeling hospitality. Moreover, I am deeply thankful for the Spirit of God as experienced through the hospitality of Jesus, for sending me on a spiritual quest that has been unimaginable.
“Very truly, I tell you, whoever receives one whom I send receives me; and whoever receives me receives him who sent me.” (John 13:20)
vi TABLE OF CONTENTS
Preface ...... ix
Chapter I: Hospitality at the Crossroads ...... 1
1.1 Introduction ...... 1 1.2 Judeo-Christian Hospitality ...... 4 1.3 Christian Hospitality and Counseling the Vulnerable ...... 11 1.4 Hospitality in the Mi’kmaw Tradition ...... 24 1.5 Spiritual Hospitality: A Common Ground ...... 33 1.6 Spiritual Hospitality and the Therapeutic Relationship ...... 40
Chapter 2: Maintaining Quality of Life at End of Life Care of Aboriginal People ...... 48
2.1 Introduction ...... 48 2.2 Quality of Life at End of Life for Aboriginal People ...... 49 2.3 Ramifications of Failing to Maintain Quality of Life ...... 55 2.4 Three Principles of Spiritual Care-giving to Improve QOL in Health Care Settings ...... 62 (a) Self Awareness ...... 62 (b) Complicated Hospitality ...... 68 (c) Ethics of Care ...... 78
Chapter 3: Research Method and Findings ...... 93
3.1 Introduction ...... 93 3.2 A Brief History of the Mi’kmaq ...... 94 3.3 Study Background ...... 103 3.4 Method ...... 105 (a) Using Grounded Theory in Ethnography ...... 106 3.5 Theme of Spiritual Hospitality in Grounded Theory Research ...... 109 3.6 Preparing the Way ...... 110 Step 1: Learning about Aboriginal People in Canada ...... 110 Step 2: Building Relationships ...... 112 Step 3: Ethical Considerations ...... 114 Step 4: Rigor ...... 116 Step 5: Getting Ready ...... 117 Step 6: Moving Forward ...... 119 Step 7: Data Gathering ...... 124 3.7 Conclusion: What Were the Lessons Learned? ...... 136
vii Chapter 4: Analysis and Results ...... 139
4.1 Introduction ...... 139 4.2 Analysis of Themes Drawn from Data ...... 140 (a) Theme 1: Historical and Gross Misunderstandings ...... 141 (b) Theme 2: After-math of Colonialism and Residential Schools ...... 146 (c) Theme 3: Respect ...... 148 (d) Theme 4: Sacred Objects ...... 151 (e) Theme 5: Diversity in Spiritual and Religious Beliefs ...... 158 (f) Theme 6: Kin Structure and Family Visiting ...... 165
Chapter 5: Conclusion: The Critical Theme of Ancient Biblical Hospitality: A Model to Guide Best Spiritual Care Practices ...... 173
5.1 Introduction ...... 173 5.2 Implications for Patients/Loved Ones, Spiritual Care Practitioners and other Health Care Professionals ...... 185 (a) Implications for Patient/Loved Ones ...... 186 (b) Implications for Spiritual Care Practitioners ...... 186 (c) Implications for Other Health Care Providers ...... 187 (d) Implications for Future Research ...... 188 5.3 Limitations of the Research ...... 189 5.4 Conclusion ...... 190
Appendices
Appendix I: Jenu ...... 191 Appendix II: Funding per Capita ...... 198 Appendix III: Religious Code Stats at Valley Regional Hospital ...... 199 Appendix IV: Memorandum of Understanding ...... 200 Appendix V: Letter to Band Council ...... 201 Appendix VI: Letter to Bear River First Nation Community ...... 204 Appendix VII (Band Council Approval) ...... 205 Appendix VIII (Acadia University Approval) ...... 206 Appendix IX (AVH REB Approval) ...... 207 Appendix X: Consent Form ...... 208 Appendix XI: Interview Questions ...... 212 Selected Bibliography ...... 213
viii Preface
This investigation began with the recognition that it is not unusual for professionally trained spiritual care practitioners and other health care professionals serving in regional health care settings to interact with patients requiring end of life care1 whose culture, spiritual and religious beliefs may be different from their own. By the same token, it is not unusual for those seeking health care services to find that the beliefs and values of those serving them differ from their own. The quest, therefore, for an authentic Christian spiritual practice of spiritual care and counseling in end of life care demands that spiritual care practitioners find the means to offer spiritual healing and wholeness to the “Other”2 by recognizing and embracing their beliefs and values.
Research demonstrates that spiritual and cultural care plays a significant role in how those living with chronic and life threatening diseases manage and cope with their illness.
But how is this to be done, especially if spiritual and religious beliefs differ? In a bid to answer this question, this work looks at a specific area in Nova Scotia, Canada.
The service area of Valley Regional Hospital, Annapolis Valley District Health Authority,
Nova Scotia serves a diverse population, thus making it an ideal location for a
1 The term “end-of-life-care” has been used to mean (1) all health care that a person receives during the last weeks and months with a life-limiting chronic disease, (2) terminal care in the last hours and days of life, and (3) synonymously with palliative and hospice care. Johnston G. (2014) End of Life Care. In: Michalos AC (Ed.) Encyclopedia of Quality of Life and Well-Being Research. Springer, Dordrecht, Netherlands: Springer, C, pages 541-543.
2 “Other” is defined as those whose religious code upon admission into hospital has been identified as First Nation, Muslim, Jewish, none, other and unknown. ix community-based research project attempting to develop a model of spiritual care and counseling that is inclusive and holistic in its approach to planning and delivering spiritual and cultural care services to the terminally ill.
The guiding metaphor and major focal point of this model of care, hospitality, is a central theme in both the Hebrew and Christian scriptures, and Mi’kmaq culture. As this study shows, the biblical understanding of hospitality can play a major role in developing a meaningful and genuine relationship between the spiritual care practitioner, who is serving in a cross-cultural health care setting, and the one who is dying. The inclusion of hospitality is vital to providing and promoting holistic spiritual care and counseling in cross-cultural health care settings at the local level. It can play a major role in ensuring that holistic patient-centered care is at the forefront of planning and delivering health care services to individuals and their loved ones. Further, the practice of spiritual care and counseling can be more effective in today’s health care system by being open and transparent to a Canadian society that continues to evolve, becoming more diverse in its population, beliefs, values, spiritual, religious and cultural experiences and expressions.
The concept of hospitality has been influenced by my teachings from the United
Church of Canada, experiences as an ordained minister with the United Church of
Canada, Canadian Clinical Pastoral Education, and my role as Coordinating Chaplain,
Valley Regional Hospital, Annapolis Valley District Health Authority. It has also been influenced by scholars such John J. Pilch, Bruce J. Malina and Jerome H. Neyrey, leaders
x in biblical cultural anthropology. Other scholars and authors whose impact on my thinking is reflected throughout my discussion include Raphael Patai, John Koenig,
Christine D. Pohl, Henri J.M. Nouwen, Amy G. Oden, Joyce Rupp and Michele
Hershberger.
Although I go on in the following pages to cite numerous experts, from historians to health care experts, theologians and Aboriginal peoples, it would be inhospitable not to mention that the real experts behind this study are the research participants, the terminally ill, those who have died, and their loved ones. By inviting me, in my role as spiritual care practitioner, into their lives, and by willingly sharing their stories and life experiences they brought forward the real need for radical changes in spiritual care and counseling practices, and spiritual care programs in health care.
The thesis is set up as follows. Chapter 1 introduces hospitality as a common thread between three cultures that meet at the cross roads of care in Nova Scotia: the hospital culture, Judeo-Christian culture, and the Mi’kmaq. Next, Chapter 2 looks at the difficulties inherent in maintaining quality of life during end of life care for Aboriginal peoples. Chapter 3 discusses methodology and data collection and explains the project’s use of grounded theory in ethnography. Chapter 4 presents the analysis and results.
Incorporating the theme of hospitality into a new model of spiritual care-giving practice is the topic of Chapter 5. The proposed model will broaden the conceptual base and revise the working model of spiritual care and counseling in cross-cultural health care settings so that it can flourish more fully within the diverse communities served by
xi Valley Regional Hospital. It will reflect the current trend in population change and suggest a way to attend to the diversity in spiritual and cultural life accompanying these changes.
xii Chapter I: Hospitality at the Crossroads
1.1 Introduction
Members of cultural minority groups facing end of life care may find themselves surrounded by people whose values, beliefs and interpretations differ significantly from their own,1 especially Canada’s Aboriginal people who live in very distinct cultural communities, including the Mi’kmaq from Bear River First Nations, Nova Scotia. At the same time, it is not unusual for professionally trained spiritual care practitioners to serve those whose culture, beliefs and values are different from their own. Interestingly, each hospital care setting has its own values and beliefs as well. Consequently, when members of cultural minority groups, including the Mi’kmaq, enter hospital settings for end of life care, three distinct cultures meet at the cross roads of this care; Mi’kmaq, hospital culture2 and Euro-Canadian. Sadly, conflict can arise at the intersection, leaving all three cultures feeling frustrated. Finding common ground is necessary for the delivery of culturally appropriate spiritual care at end of life.
Although this may seem obvious, the first commonality between these three cultures is that they are different. However, there is a common thread that can pull
1 Cynthia Baker and Monique Cormier Daigle. “Cross Cultural Care as Experienced by Mi’kmaq clients,” Western Journal of Nursing Research 22, 1 (2000) 8.
2 Hospital culture is defined by the way hospitals organize themselves and function as institutions and health care systems. It includes roles, norms, symbols, regulations, patterns of operation, and specialized language, to name a few.
1
them together: hospitality. More specifically, hospitality is highly valued in both the
Judeo-Christian and Mi’kmaq traditions. Although the word hospitality may not be used or even identified within hospital culture, it is common practice in the day to day operations of direct patient care. This is demonstrated by the very fact that hospital settings provide shelter and food. Further, the hospital staff, health care teams and physicians knowingly or unknowingly provide acts of hospitality by attending to the physical, spiritual, emotional and psychological well-being of patients. Housekeepers, for example, often provide a great deal of comfort to patients by keeping spaces clean and uncluttered. Moreover, they listen to the stories of the terminally ill in a very unobtrusive fashion.
Mi’kmaq stories are an extremely valuable resource for understanding their culture, including the noble tradition of hospitality. In fact, some legends merit close examination since they highlight some of the same ingredients of hospitality shown in the Judeo-Christian tradition: the role of guest and host, relationship building and the significance of reciprocal relationships. A major difference between these two understandings of hospitality is the Mi’kmaq belief that relationships can be formed with both animate and inanimate beings. Numerous Mi’kmaw legends for example, tell of animals and people being transformed or transforming themselves into stones, trees, mountains and islands. A common legend associated with rocks is Kluskap who turned his Grandmother or Grandfather to stone.3
3Trudy Sable and Bernie Francis, The Language of This Land Mi’kma’ki (Nova Scotia: Cape Breton University Press, 2012), 42-43.
2 Mi’kmaw legends also illuminate the strong belief that all things are connected.
It is not unusual therefore for stories to involve animal and human figures. The Mi’kmaq believe in having an “animal spirit helper” or a personal alliance with an animal spirit that can be called upon for assistance, protection or guidance. The presence of an animal spirit helper can sometimes be experienced at end of life care by the one who is dying and/or those who have gathered. Failure to take good care of each other, the animals, plant and trees is dangerous from a Mi’kmaq perspective because it threatens the survival of all living things, including humans as clearly demonstrated in the story of
Jenu (Appendix I).
This chapter posits hospitality as a common thread between three cultures that meet at the cross roads of care. The theme of hospitality in the Judeo-Christian tradition is introduced in what follows, looking at both Greek and Judaic influences. The next section looks at some general principles and common concerns when offering hospitality to vulnerable people facing an end of life situation. In the third part, the chapter addresses hospitality as an underlining principle of Mi’kmaq family and community life. The fourth section identifies some common ingredients of hospitality between the Judeo-Christian and Mi’kmaq traditions, thus laying the ground work for a model of spiritual care-giving and counseling rooted in hospitality. The final section addresses spiritual hospitality and the therapeutic relationship between the spiritual care practitioner and the terminally ill.
3 1.2 Judeo-Christian Hospitality
The word hospitality has lost much of its meaning from biblical times. Henri
Nouwen has noted that the word hospitality in our North American society “evokes the image of soft sweet kindness, tea parties, bland conversations and a general atmosphere of coziness.”4 Further, the concept of hospitality is being revisited by some
Christian theologians as a serious search of authentic Christian spirituality, including conversations related to palliation. Since hospitality is a rich biblical term that can deepen and broaden our insight into our relationships with our fellow human beings it is worth recovering, especially in spiritual care-giving across cultures and at end of life care.
Every culture describes the way its members perceive and interpret reality. What is considered to be important in Canadian society may not be so significant in Middle
Eastern or Mediterranean societies. The word hospitality for example, may be used in all of these cultures, yet have a different meaning and social value.
Simply put, hospitality in the Judeo-Christian tradition is the practice of
“receiving” a stranger (xenos)5 or guest graciously. Contrary to our post-modern
4 Henri J.M. Nouwen, Reaching Out: The Three Movements of the Spiritual Life (New York: Doubleday, 1975), 66.
5 Interestingly, the word hospitality is never used in the Hebrew Scriptures or Christian Bible. The word most often used in the New Testament is the Greek Xenos, which literally means foreigner, stranger, host or even enemy. The Greek verb most frequently used to describe the extension of hospitality is xenizein. The Hebrew word Ger means stranger, alien or sojourner, and the Latin word Hospes has many meanings, mainly guest, host or stranger. David Noel Freedman, The Anchor Bible Dictionary (New York: Doubleday, 1992), 299-301.
4 understanding of hospitality, in the world of the Bible hospitality is never about entertaining family or friends.6 Hospitality is always about dealing with strangers. To demonstrate hospitality is to receive a stranger. Moreover, hospitality is a process of receiving outsiders and changing them from strangers to guests.
By recognizing that hospitality is defined as welcoming the stranger, we need to ask: who is the stranger? Early Christians speak of strangers as those who are most vulnerable in society; the poor and hungry, the sick and injured, the windowed and orphaned, the sojourners and strangers, the aged, the slaves and imprisoned. All of these people exist on the margins of society, both socially and economically. In Luke’s gospel, Jesus proclaims his mission to bring good news to the poor, the captives, the blind and the oppressed by drawing on Isaiah 61:1-2 (Lk 4:18-19).
The Christian understanding of hospitality was influenced by both Ancient Greek and Roman culture. Since the Christian New Testament was written in Greek and the early Christians lived in a Greco-Roman culture, the impact on early Christians is immediately apparent. In ancient Greece, hospitality toward a stranger was recognized and valued. In fact, hosting a stranger was much more than providing material goods; it was an opportunity to honour the other’s humanness and personhood. In classical
Greek culture it was also believed that the provision of hospitality was a source of happiness and blessings. Consequently, some Greek authors emphasize that there was a
6 Bruce J. Malina and John, J. Pilch, Biblical Social Values and Their Meaning: A Handbook (Massachusetts: Hendrickson Publishers, 1993), 104.
5 link between the stranger and divinity, so much so that inhospitable acts were considered sacrilegious.7 Homer and Plato often spoke of hospitality as being a key characteristic to a civilized society. Hospitality was held in such high regard in ancient
Greece that some authors correlated the stranger with the divine. Homer refers to this divine link in The Odyssey. “Rudeness to a stranger is not decency, poor though he may be, poorer than you. All wanderers and beggars came from Zeus. What we can give is slight but the recompense great.”8 In Stoic teachings it is understood that the relationship between divinity and humanity stems from the fact that all are citizens of the world; therefore, no one is a stranger. One of the longest serving traditions from the ancient Greek and Near Eastern peoples is the suggestion of a covenant relationship between guests and hosts. Hospitality was seen by these cultures as fundamental to the process of humanization and as a foundation of morality. In fact, hospitality was understood as essential to maintaining order in the world.9
Having said this, hospitality is also founded on ambivalence which is evident in the etymology of the world. In Greek for example, words from the xen stem mean
“foreign” or “stranger” or “guest”. The verb xenizo means “to surprise” or “to be strange” or “to entertain”. Hospes is the Latin word that signifies host and the word for enemy is hostis, from which the word hostile comes from. Speaking from an etymological perspective, the word for stranger may have a negative meaning,
7 Lucien Richard, Living the Hospitality of God (New York: Paulist Press, 1989), 5.
8 Homer, The Odyssey, trans. Robert Fitzgerald (New York: Doubleday, 1961), 233.
9 Richard, 6.
6 suggesting xenophobia, or a positive meaning when the stranger is given hospitality, philoxenia.10 Ancient Greeks considered hospitality a basic feature of civilized people.
Hospitality was offered to wayfarers considered vulnerable and under the protection of
Zeus. This distinguished them from more primitive cultures that demonstrate xenophobia, fear of strangers. The sense that strangers needed protection is also found in ancient Greek literature. Some stories tell of gods who disguised themselves as humans to test the hospitality of humans.11
There is a natural tension however, that comes between those who perceive themselves as natives, or insiders, and those who understand foreigners as outsiders.
Hospitality is a way of overcoming the tensions and making the one who is alien a friend. In fact, hospitality was held in such high regard by ancient Greek and Near
Eastern peoples that when a stranger or outsider was invited to feast or to lodge with the host, it was believed that the stranger underwent a temporary change from stranger to guest. While hospitality did not eliminate conflict, it placed conflict in abeyance due in part, to the specific code of conduct regulating the relationship between the guest and host, and host and guest.
Hospitality was a highly regarded virtue of civilization and a privilege of patrons in Roman culture as well. As early as 399 B.C.E., hospitality to strangers was understood as obedience to divine will. Cicero and Ovid for example, refer to the sacred duty of
10 Richard, 6.
11 Wikipedia, Xenia the Ancient Greek concept of hospitality, http://www.sfakia-xenia-hotel.gr/en/ancient.
7 hospitality. Like the Roman culture, the Judeo-Christian tradition believes hospitality is a fulfillment of one’s duty to God. Jesus was the recipient of hospitality many times during his earthly life. In fact, he was dependent on the hospitality of others when he travelled from community to community. At the same time, he often served as the gracious host in both his words and actions. Those who turned to him found him to be very welcoming. They trusted him and, therefore, could rest comfortably in his presence.
Perhaps the sense of comfort also came from the promise that they would be received into the Kingdom of God:
Come, you that are blessed by my father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me. (Matt 25: 34-37)
This scripture reading speaks to one of the most valuable acts of hospitality which is receiving the most vulnerable in society. Special attention needs to be given to this scripture reading because Jesus lays out some very important guidelines for fulfilling one’s obligations of hospitality. Hospitality is more than making an offering to chosen friends. Hospitality is about breaking down barriers by inviting the stranger or guest or other into our homes, and into the home of our hearts.
Not surprisingly, the Christian New Testament mirrors the virtue of hospitality as seen in Hebrew culture. The people of Ancient Israel recognized themselves as strangers or outsiders in Pharaoh’s Egypt. Consequently, they perceived their corporate identity as that of a stranger even though they also understood themselves to be God’s chosen
8 people.12 The Mosaic laws reflected this corporate identity by speaking to the proper attitude to “strangers and sojourners among us.” The laws provided inclusion and protection in the community. The requirement to rest on the Sabbath including slaves and resident aliens is a case in point (Exodus 20:10; 23:12; Deuteronomy 5:14-15). The
Torah prohibits abuse or exploitation of aliens, the poor, widows and orphans (Exodus
22:21; 23:9; Deuteronomy 24:14-15). Needless to say, the Ancient Hebrews took their responsibilities to care for the vulnerable strangers in their society very seriously.
Moreover, they understood their responsibility as part of what it meant to be the people of God.
Hospitality in Hebrew culture was much more than commands to avoid harming others. It was about welcoming them, a theme appearing in stories throughout the Old
Testament. A classic example of hospitality occurs when Abraham and Sarah welcomed three strangers under the oaks of Mamre. After they receive the strangers and offer them bread, water, and a fine tender calf, the strangers reveal themselves as messengers of God announcing that Sarah will give birth to a son (Genesis 18:1-15). In
Joshua 2, Rahab welcomes and protects strangers who are spies in Joshua’s army. The widow of Zarephath receives a stranger who is the prophet, Elijah. After she gives him food and shelter, Elijah reveals himself as a man of God offering her an abundance of oil and meal, and then raises her son from the dead (1 Kings 17:8-24). In all of these stories, hospitality is at the core of the household--the sharing of its resources with strangers.
12 Amy G. Oden, And You Welcomed Me: A Sourcebook on Hospitality in Early Christianity (Nashville: Abingdon Press, 2001), 17.
9 Moreover, each act of hospitality clearly demonstrates a connection and relationship developing between the host, guest and God. The relationship is also one of reciprocity.
It would be neglectful not to mention some of the other ingredients of hospitality. The rules of hospitality prohibited neglect, abuse, and exploitation. Laws of inclusion and protection are also a part of hospitality. Jesus knows the laws of hospitality very well when he asks the Samaritan woman for a glass of water. He is also well aware of the distant and tense relationship between Jews and Samaritans, but this does not stop him from asking for her help, inviting her to offer hospitality. His request for a drink of water is genuine, but the appeal for water reaches far beyond his need to quench his thirst; it symbolizing the sustenance of life, which has deep religious meaning for both of them.
The doors to hospitality open even wider when the Samaritan woman responds by offering the water to Jesus. Her actions demonstrate that this relationship is one of reciprocity because she welcomes the stranger. The reciprocal aspects of this relationship are further demonstrated when Jesus willingly accepts her act of hospitality, and then assumes the role of host by offering the spiritual sustenance of life to her. Interestingly, this is not the first time that Jesus acts as host; in fact he plays this role when he meets the woman at the well. He asks her for a glass of water, thereby demonstrating his willingness to cross the barriers of cultural and religious differences, inviting her metaphorically to “sit at God’s table of hospitality”. His actions illustrates there are no walls around God’s table of hospitality.
10 1.3 Christian Hospitality and Counseling the Vulnerable
In our post-modern society many of the same groups of people identified by early Christians as vulnerable remain so today. Sadly, there are others to be added to this list, including the dying and visible minorities. Many of Canada’s Aboriginal people for example, feel vulnerable when they are receiving health care services, including palliative care, partly because they continue to experience racism, indifference and neglect. The death of Brian Sinclair---a First Nations man who went to the Emergency
Department at an urban hospital in Winnipeg---and the discovery of his death 34 hours later is a case in point. A recent inquiry has demonstrated that Sinclair was not seen by anyone from the ED (except the Ward Clerk who processed the administration details upon his arrival) during his 34 hour stay in the waiting room.13
The fact that Aboriginal peoples, including the Mi’kmaq, feel vulnerable when receiving health care services is significant to spiritual care practitioners who want to develop a meaningful relationship with the one who is dying. They need to understand the uniqueness of those to whom they are providing spiritual counseling and therapy, so that they can maximize the therapeutic value of their caring and counseling relationship with the dying.
Insight into the vulnerability of the dying, such as the Mi’kmaq allows spiritual care
13 CBC News, Manitoba, “Brain Sinclair inquest into ER death resumes in Winnipeg” October 7, 2013. Accessed October 24, 2014. http://www.cbc.ca/news/canada/manitoba/brain-sinclair-inquest-into-er- death-resumes-in-winnipeg
11 practitioners to determine the best possible approach to developing a trusting and meaningful relationship with the one who is dying. It is necessary for spiritual practitioners to develop a trusting relationship with the dying and meet the overall goals of grief and/or anticipatory grief counseling. A primary goal is to assist both the one who is dying and/or their loved ones to complete any unfinished business between them.
Equally important is to support the terminally ill both spiritually and emotionally as they put their business affairs in order.
A third goal is to support and guide both the one who is dying and/or their loved ones as they prepare to say their final goodbyes. The goals of grief counseling correspond to five tasks of grieving and/or anticipatory grief14.
1. To increase acceptance of the reality of loss (decline in physical body, roles in society, job/career, and death itself).
2. To help the one who is dying and/or loved ones with expressed affect as they go through the process of living with dying and move towards active dying.
3. To support the terminally ill and/or their loved ones as they go through the various stages of living with dying and move into active dying.
4. To encourage both the one who is terminally ill and/or their loved ones to say their goodbyes, to ask for forgiveness or give forgiveness, to pay tribute to one another and to give thanks for the good things that each party has experienced in their life journey together.
5. To ensure the dying that they will not be forgotten, they are loved and cared for in their wholeness.
14 Both the dying and their loved ones experience grief and anticipatory grief while the one who is living with dying is going through the process of dying. Grief is often associated with the loss of job, income, career, physical appearance of the body and/or body function. Anticipatory grief is often associated with death itself “What will life be like without dad?” “I won’t be able to watch my children graduate or walk my daughter down the aisle when she gets married.”
12 In addition to providing grief counseling, Christian spiritual care practitioners must understand the role that each person plays in this relationship from a theological perspective. As noted above, the practice of hospitality was common amongst many social groups in both the Hebrew Scriptures and New Testament. One of the greatest distinctions between our contemporary understanding of hospitality and that of biblical times is the special nuances of hospitality, particularly with regards to the role of host and guest. The host for example, was the one who received the stranger into their home and turned them into a guest by attending to their needs. In biblical times, strangers were considered to be vulnerable because their lives were always at risk as they moved from community to community. Unforeseen dangers lay ahead of them as they traveled on their routes; it was also the responsibility of their host to make sure that they got to the next stage of the journey safely.
If Christian spiritual care practitioners understand their role as that of host at the beginning of their relationship with the terminally ill and cast the latter in the role of stranger, they will develop a deeper appreciation of the vulnerability of the terminally ill. The dying may feel vulnerable because their own health and/or lives are at risk. They may feel vulnerable because the health care setting, system, routines and health care workers may seem very foreign to them.
As the host in this relationship, spiritual care practitioners are responsible for welcoming the terminally ill into their lives by beginning to develop a genuine and trusting relationship with them. In their role as host, they need to ensure that the
13 physical, emotional, spiritual and psychological needs of the terminally ill are being attended to by working collaboratively with the health care team. For example, spiritual care practitioners may inform nursing staff of any concerns that the terminally ill raise with them, such as physical pain. By staying focused on the spiritual and cultural needs of the dying, these practitioners can help to make the dying feel welcome and move them from the role of stranger to that of guest.
Spiritual care practitioners who incorporate biblical hospitality into their daily practice must have a clear understanding of who is playing what role throughout this relationship. When the spiritual care practitioner has a clear understanding, her awareness of the therapeutic value of this relationship can be heightened. If the dying feel welcomed, safe and secure, their feelings of vulnerability may be diminished.
This was exemplified in the winter of 2012: in my role as spiritual care practitioner, I was called to the Emergency Department to attend to a family that was feeling very stressed about their mother’s health. In the initial assessment, I learned that this family was from one of the local Mi’kmaq communities. Their spirituality was rooted in both the Roman Catholic and Mi’kmaq traditions. When I asked if they would like Traditional medicine and/or prayer beads, they grabbed my hands and immediately said “Yes.” Their faces changed---they looked less stressed, even somewhat relieved.
One adult child said, “Thank you for honouring us.” By listening to this family and having the means to honour both of their spiritual traditions, as the spiritual care practitioner I was able to welcome them into my life and to attend to their needs. In other words, by
14 acting as the host in the relationship, spiritual care practitioners can assist in making the terminally ill and/or their family members feel welcomed.
At the same time, when spiritual care practitioners can reflect on their relationship with the dying and see themselves in the role of guest, they have a far greater chance of growing in their own spirituality and/or humanity. More specifically, upon reflection they may discover that they have learned something about themselves or their spirituality or humanity from the terminally ill. For example, by sharing their experiences while going through the dying process, the dying in my spiritual care have taught me that it is not unusual for them to experience the presence of their loved ones who have died before them (human and animal alike), to be with them in their room as they get closer to death. The terminally ill have expressed a sense of comfort and peace as a result.
Therapeutic value can also be added to this therapeutic relationship when spiritual care practitioners take time to give “thanks” to the terminally ill for being their teachers and sharing their knowledge. This acknowledgement can empower the dying: they may realize that they still have a great deal of value to add to life and to the lives of others. Moreover, they are still living a productive life in the midst of living with dying.
Good communication skills can play a key role in making the other feel welcomed, helping to establish a trusting and worthy relationship. Developing a strong rapport can empower the terminally ill by giving them opportunities to speak of their spirituality and culture. By asking the terminally how their spirituality and culture might
15 influence their end of life care and stay in the hospital, the spiritual care practitioner can sometimes give the dying a new sense of empowerment as a conversation may allow them to make some decisions about their overall health care plan. It may also allow them to envision how they would like to live out the remaining segments of their life.
Spiritual care practitioners need to build trusting and meaningful relationships with the dying in order to maximize the effectiveness of this therapeutic relationship.
Building a trusting relationship with the terminally ill is also necessary if spiritual care practitioners want to tap into both the deep spiritual needs and resources of the dying, to reach out to them in their totality as human beings, and to become spiritual healers.
With the establishment of trust, spiritual care practitioners can promote a message of spiritual healing and wholeness to those struggling with despair, spiritual distress, anxiety, depression, vulnerability and isolation from community and/or culture, and alienation from hospital culture.
Christian spiritual care practitioners can draw upon the teachings of hospitality and ancient laws of inclusivity when responding to palliative patients whose culture and spirituality may be different from their own. By heeding the instructions of hospitality, they can be reassured that the relationship that they are developing with the dying is one of caring and genuineness. Moreover, Christian spiritual care practitioners can develop a sense of comfort, knowing that their own caring attitude and practice of hospitality is born, in part, in their own traditions, beliefs and spiritual resources.
A key ingredient of hospitality is relationships and relationship building. Having
16 said this, one of the most difficult tasks of spiritual care practitioners is developing an in- depth relationship with the dying. This has become challenging in our Canadian society especially as technology has become a major player in how Canadians communicate with one another. Although this form of communication has its benefits, it has also contributed to a break down in in-depth one-to-one relationships.15 Building face-to- face and in-depth trusting relationships with the terminally ill can be extremely beneficial to their spiritual healing: it gives them the opportunity to invite the spiritual care practitioner into those places in their lives where they hurt and hope, curse and pray, hunger for meaning of life and thirst for significant relationships. Being in such a relationship demands both the spiritual care practitioner and the terminally ill16 to be engaged in the other’s presence. This is one of the highest forms of hospitality.
Incorporating hospitality into best spiritual care practices can also assist spiritual care practitioners in providing a liberating and healing ministry based on a relationship
15 Helen J. Watt, “How Does the Use of Modern Communication Technology Influence Language and Literacy Development? A Review”, Contemporary Issues in Communication Science and Disorders (2010), 37, 141-148.
16 There are two main stages of a terminal illness: living with dying and active dying. In both situations the terminally ill can be very conscious and aware of what is going on in their life and the world around them. As the dying move through the various stages of dying, spiritual care practitioners can have in depth conversation and therapeutic sessions with them. When the medical teams deem palliative patients “expected death”, then they are less likely to fully engage in an in depth conversation. Verbal communication can become limited and body language more pronounced until the medical team diagnoses them as non-responsive. Spiritual care practitioners and other health care professionals encourage family members to continue dialoguing with their loved ones even when they are considered non-responsive because it is believed that hearing is one of the last senses to go.
17 between themselves, their spiritual resource,17 the dying, and their family members.
With good counseling skills, spiritual care practitioners can promote this coming together as a time to engage in conversation and interaction. Developing a trusting and therapeutic relationship is key to providing empathetic and effective spiritual care in cross-cultural settings.
The realization that spiritual counseling across cultures falls within the tradition, beliefs, values and resources of their own faith communities can be significant to
Christian spiritual care practitioners who may feel anxiety or stress in cross cultural care.
Some spiritual care practitioners for example, who serve in cross cultural settings may question their call to ministry or faith or loyalty to God when responding to those whose culture, spirituality, beliefs and values differ from their own. Knowing that the noble tradition of hospitality is valid from within their own community of faith and that it is well founded within the human community can relieve much of their anxiety. Further, it may give them the permission and freedom they need to develop an appreciation or new understanding of the wide range of ways in which the Spirit’s gifts of hospitality are extended. They will have an opportunity to grow in their own spirituality and to find meaningful ways in which to express this new spiritual growth as they begin to know themselves in relationship with others.
By drawing on traditional teachings of hospitality, spiritual care practitioners can
17 Spiritual Resource for Christians is God. For those of other faiths or others forms of spirituality, spiritual resource may be the Creator or Buddha or Allah, to name a few.
18 also broaden their horizons by ensuring that the dying have opportunities to speak freely about their culture and/or express and experience their spirituality. This is extremely important to the terminally ill who seek recognition of their desire for self- determination and autonomy in terms of how they engage in both living and dying.
Drawing on the noble traditions of hospitality can also help spiritual care practitioners to gain the confidence they need to welcome, walk into, and value other world views. The
Mi’kmaq wants to feel respected and culturally cared for so that they, like others, can die with dignity.
Sadly, Mi’kmaw patients have not always felt welcomed or free to practice their spiritual and cultural traditions when a loved one is dying in the hospital. The provision of complete, effective and culturally sensitive health care requires familiarity with and respect for their culture. Spiritual care practitioners can play a key role in bridging the gap between the three intersecting cultures of care identified earlier by fostering communication. In their work as therapeutic practitioners, they can help the Mi’kmaq to draw on their spiritual, religious and cultural tradition’s wisdom assisting them to seek life’s meaning with the hope of finding comfort and inner peace in their living and dying.
At the cross roads of care the practice of hospitality in spiritual care-giving can be challenging, interesting and unpredictable, but developing a deeper understanding of
Christian hospitality will assist caregivers to meet the challenges, creating hospitable places for end of life care for all regardless of ethnicity. Having said this, it must be acknowledged that there are many barriers in our society which contribute to the
19 cultural oppression of First Nations people. The failure to acknowledge religious or spiritual or cultural diversity and/or the practice of stereotyping are other cases in point.
International studies of cross-cultural care warn against stereotyping and encourage the embracing of values inherent in Native culture such as respect, understanding and open communication.18 In the Nova Scotia case, opening up new conversations with First
Nations communities within the service area of the local health authorities represents a good first step to break down barriers and move towards cultural competency. The principles and application of spiritual hospitality can be the common ground for opening up this dialogue: once a dialogue is established, they can help maintain a good communication flow between the cultures of care.
In a rapidly changing society and world, the practice of Christian spiritual care- giving in health care settings can be altered radically by the context in which they are serving. In Annapolis Valley District Health Authority (AVDHA), one-third of the patients entering the hospital identify themselves as “other.”19 Although this work focuses on end of life needs for the Mi’kmaq, these data are significant: they suggest, Christian spiritual care practitioners must find a way to open up a meaningful relationship and dialogue with those from other spiritual and cultural communities who live within the service area of AVDHA so that their spiritual and cultural needs can also be attended to
18 Len Kelley and Judith Belle Brown, “Listening to Native Patients” Canadian Family Physician 28: (October, 2002): 1646.
19 “Other” is defined as those whose religious code upon admission into hospital has been identified as First Nation, Muslim, Jewish, none, other and unknown.
20 in a meaningful way. As the Spiritual Care Program at Valley Regional Hospital moves forward with its vision of shaping the direction of spiritual wellness within AVDHA it needs to include the fullness of those who categorize themselves as “other”.
As this vision moves forward, Christian spiritual care practitioners must remain involved in building meaningful relationship with more than the dying and their family members. As valuable members of the health care team, spiritual care practitioners need to build healthy relationships with their colleagues so that they can work together more efficiently in attending to various needs of patients and their family members.
Spiritual care practitioners also need to reach out and be in relationships with their own spiritual directors and/ or therapists, their own faith community, and God. These relationships are necessary if spiritual care practitioners want to remain emotionally and spiritually healthy. It is too easy for them, especially those who are a “one off” in regional hospitals, to fall into the trap of living or serving in isolation. If spiritual care practitioners in health care want to continue to develop their own spirituality and become persons of deep spirit, they cannot do life alone, they need to be connected with others and their spiritual resource, God or Creator, for example.
Furthermore, to continue to grow in their spirituality and humanity, spiritual care practitioners need to continuously welcome the stranger or guest or others into their lives, including their God or spiritual resource. To do so, Christian spiritual care practitioners must remain connected with their faith communities so that they can be nurtured and spiritually renewed. Failure to do so can lead to burn-out and the inability
21 to provide best spiritual care practices for the terminally ill. Maintaining healthy and nurturing relationships with other spiritual leaders will help spiritual care practitioners create the safe places they need to reflect on ethical issues—and these, tend to arise on a daily basis in health care. Creating safe and welcoming places whereby spiritual care practitioners can have open discussions with their colleagues and/or spiritual leaders may also help to prevent abuse and neglect.
The recovery of spiritual hospitality is more urgent then ever, especially as
Canadian society continues to move towards a high regard for individualism and ambition which seems to encourage us to be less and less interested in others, and their well being. Recovering spiritual hospitality in palliative care requires immediate attention because Canadian society has become so wired to technology that interpersonal relationships are suffering.20 Moreover, reductions in financial support and the move towards production- orientated health care systems are increasing the risk of losing a deep human connection with patients, including palliative patients.
Failure to have deep spiritual or human-to-human contact with palliative patients is serious because it can increase the risk of psychological and spiritual distress. In fact, some experts in the field of palliation claim that the lack of spiritual care intervention for the purpose of moving the dying towards a sense of inner peace and comfort can
20 Helen Lee Lin, “How Your Cell Phone Hurts Your Relationships”, Scientific American, September 4, 2012, Accessed February, 2015, http://www.scientificamerican.com/article/how-your-cell-phone-hurts-your- relationships
22 place the terminally ill in danger of dying a painful death.21
Having said this, spiritual care practitioners need to recognize that there are some palliative patients who choose, for various reasons, to disconnect from some or all health care intervention, including spiritual care. Being a good host in this situation is to respect and honour the palliative patient’s request and wishes. In the following poem
(1862) Emily Dickinson speaks to the need of some palliative patients to continue on their spiritual and life journey without healthcare intervention, including formalized spiritual care:
The Soul selects her own Society— Then—shuts the Door— To her divine Majority— Present no more—
Unmoved—she notes the Chariots—pausing— At her low Gate— Unmoved—an Emperor be kneeling Upon her Mat—
I’ve known her—from an ample nation— Choose One— Then—close the Valves of her attention— Like Stone—22
Yet many, perhaps most, palliative patients need the services of a spiritual care practitioner. In fact, a survey conducted by George H. Gallup International Institute in
1997 demonstrated that people overwhelmingly want their spiritual needs attended to
21 David Kuhl, What Dying People Want: Practical Wisdom for the End of Life (Canada: Anchor 2003),
22 Emily Dickinson, “The Soul Selects Her Own Society,” 1862, The Academy of American Poets, Poets.org December 1, 2013. Accessed October 24, 2014. http://www.poets.org/viewmedia.php/prmMID/20283.
23 when they are close to death. George H. Gallup Jr. wrote the following in the preface to the survey report: “The overarching message that emerges from this study is that the
American people want to reclaim and reassert the spiritual dimensions in dying.”23
The various needs of palliative patients clearly demonstrate the real and immediate need for the rich principles and practices of spiritual hospitality to be incorporated into the Canadian health care system, including Nova Scotia. They must be adopted in the day-to-day practices of health care professionals, including spiritual care practitioners, so that the truest meaning of patient-centered care can be achieved and best outcomes for end of life care can be ensured. But, Christian hospitality is more than an attitude or scope of professional practice; it is at the core of the Christian way of life and discipleship. It is also central to family life and community within the Mi’kmaq culture. The next section will focus on this tradition of hospitality.
1.4 Hospitality in the Mi’kmaw Tradition
Examining the virtue of hospitality in the Mi’kmaq tradition can greatly facilitate the spiritual well-being of those members of the community who are facing end of life care. Since spiritual well-being influences psychological functioning, including the amelioration of anxiety and depression in individuals with life threatening diseases24, it
23 George H. Gallop, Jr., Spiritual Beliefs and The Dying Process, (New Jersey: George H. Gallop International Institute, 1997), 1. Note: the Gallop survey did not identify the population/culture(s).
24 Harvey Max Chochivov, “Dying, Dignity, and new Horizons in Palliative End-of-Life Care.” CA A Cancer Journal for Clinicians 56, 2, (2006), 84-103.
24 is important to recognize that hospitality can play a unique role in meeting the spiritual needs of Mi’kmaq patients and family members.
As in the Hebrew tribes, hospitality is an extremely important virtue in Mi’kmaw family and tribal life. It is the basis upon which morality is built. Hospitality has always been taken very seriously by the community and Grand Council, (the traditional
Mi’kmaq government). The practice of hospitality was clearly demonstrated through acts of generosity. It was the duty of the Grand Council for example, to ensure goods were distributed amongst community members, leaving no one unattended or without basic foods and provisions. At their annual meeting the Grand Council, distributed trading and hunting territories among families and bands, a decision determined by need. Since generosity is held in high regard, the Mi’kmaq have very little attachment to material possessions. If a friend or community member is in need, the Mi’kmaq would rather deprive themselves of a possession than leave a friend or community member in need. Stinginess is not looked upon favourably.25
Hospitality extends beyond the family and community. The Mi’kmaq are known for welcoming the stranger and turning them into a guest. Dr. Daniel Paul, Mi’kmaq historian speaks to their practices of hospitality:
Hospitality is in such high esteem among our Gaspesians that they make almost no distinction between the home-born and the stranger. They give lodging equally to the French and to the Indians who come from a distance, and to both they distribute generously whatever they have obtained in hunting and in the fishery,
25 Daniel N. Paul, We Were Not the Savages: First Nations History (Halifax: Fernwood, 2006), 10-17.
25 giving themselves little concern if the strangers remain among them for weeks, months, and even entire years. They are always good-natured to their guests, whom, for the time, they consider as belonging to the wigwam, especially if they understand a little of the Gaspesian tongue.26
To fully appreciate the meaning of hospitality requires a closer look at what is going on within the oral tradition of storytelling that illuminates Mi’kmaq knowledge. In the above story for example, Dr. Daniel Paul illustrates how the practice of hospitality is incorporated into the daily lives of the Mi’kmaq by speaking to the acts of generosity offered by both the Grand Council and the Gaspesians. By looking below the surface however, we see that hospitality reaches far beyond the giving of food and shelter.
Through these acts of hospitality, relationships are established and strengthened. This insight is critical in understanding Mi’kmaq thought and way of life because being in constant relationship with one another is one of their most cherished beliefs. Further, this highly valued belief influences some of the care and rituals that are offered at the death bed.
To understand these concepts, it is necessary to briefly address the Mi’kmaq language. The language is more than a knowledge base: it reflects a philosophy of how the Mi’kmaq live with one another, how they treat one another and how all things in the world fit together.27 The belief, for example, that they live within the circle of life and within this circle each person is dependent on all the others, speaks to their philosophy of how things in the world fit together. The connection between one
26 Paul, 37.
27 Rita Joe and Lesley Choyce, The Mi’kmaq Anthology (Nova Scotia: Pottersfield Press, 1997), 147.
26 another and the circle of life is one of dependency; therefore, each person must be in constant relationship with the other.
Knowing this is critical to providing appropriate spiritual and cultural care at end of life. Let me explain. It is not unusual for a large number of Mi’kmaq (15-25 people) to gather around the death bed to support the one who is dying and immediate family members. This gathering is more than a coming together; it is a way of expressing spirituality. For the Mi’kmaq their spiritual outlook on life unites them, collectively and individually. Spirituality therefore, is expressed at such events as birthday parties, family or clan gatherings, and anniversaries or such rites as weddings, funerals, salites28 and christenings. The Mi’kmaq gather together in times of sorrow and joy, and in times of plenty and scarcity.29 The gatherings have significance: they provide a means for expressing acts of hospitality by supporting one another physically, emotionally and spiritually, and they allow the Mi’kmaq to stay connected to one another in a very profound manner. Sadly, this very important custom of family and community gatherings has conflicts with hospital culture and policy, and the number of visitors allowed in palliative patient’s rooms is often limited. The ensuing misunderstanding has increased the sense of isolation and loneliness during hospital stays. A former patient explains: “I felt very lonesome at nights when my family was gone. I guess because I have such a big family that I always have some around me at home, and I felt scared at
28 Salite refers to auctions held to raise money for family members who have lost a loved one to death. The money is often used to pay for funeral expenses. 29Angela Robinson, Ta’n Teli-ktlamsitasit (Ways of Believing): Mi’kmaw Religion in Eskasoni, Nova Scotia, (Toronto: Pearson Education Canada Inc., 2005), 34.
27 nights to be alone without any of them there.” 30 The comment affirms some key values and beliefs of Mi’kmaq philosophy, notably that family and extended family members are a central social group within the community. By expressing the loneliness that she experienced without the presence of her family, this patient was able to identify in an indirect manner that the gathering of family around the bedside plays a significant role in her spiritual and psychological well-being. In fact, research shows that the gathering around the bed side is significant to family members and the community as a whole.
Elders who participated in research conducted by Mary Hampton said preparation for death includes the gathering of community.31
Also noteworthy is the patient’s need to have her family with her. She experienced a sense of isolation from her family and community. Since it is believed in the Mi’kmaq culture that everything exists within a network of relationships and cannot exist as a separate entity outside those relationships, this would have been a devastating experience for this patient because the absence of her family and/or community would have left her feeling disconnected from one of the most significant relationships in her life. Since being in a network of relationships (including the gathering of family and community) is also considered an expression of Mi’kmaq spirituality, it can be argued that this patient’s anxiety and loneliness increased because
30 Cynthia Baker, Monique Cormier Daigle, Anne Biro, Jennie R. Joe, “Cross-Cultural Hospital Care as Experienced by Mi’kmaq Clients.”, Western Journal of Nursing Research 22, 1, (2000). 17.
31 Mary Hampton and Baydala, Angelina, “Completing the Circle: Elders speak about end of life care with Aboriginal families in Canada.” Journal of Palliative Care 26:1 (2010): 9.
28 she did not have full access to traditional ways of expressing and/or experiencing her spirituality with the absence of her family.
The significance of being in relationship is clearly articulated in the Mi’kmaq language. The word Mi’kmaq for example, refers to kinship, as an allied people.32 Since the Mi’kmaq language identifies objects and concepts in terms of their use or relationship to other things in an active process, it differs from English and its associated languages.
In short, relations and relationships play a key role. All things are connected so the Mi’kmaq must depend on one another to help each other out, including during end of life care. The connection is a process whereby the Mi’kmaq internalizes relations and relationships to the point that they become a way of life. The internalization of relationships has significance far beyond family and community for the Mi’kmaq; it means they are also in balance and harmony with the earth.
For the Mi’kmaq, being in relationship is a key aspect of spiritual hospitality, and the theme of spiritual hospitality and its many ingredients are often expressed in
Mi’kmaq legends. In her book, Six Mi’kmaq Stories, Ruth Holmes Whitehead tells six tales with valuable insights into hospitality and its expressions. Although the word hospitality is not used, the theme is clear. Similar to spiritual hospitality in the Judeo-
Christian tradition, there is a host and guest in these stories. The guest is welcomed by
32 Joe and Choyce, 148.
29 the host. In some tales the guest is received into the host’s Wigwam where he/she is given food and shelter. Within each of these stories a relationship is established between the host and guest, even when the guest may pose a threat to the host.
Despite the challenges of each relationship, the host never tries to change the guest but offers him/her the opportunity to become who he/she is meant to be. Transformation is often experienced by host and guest alike, demonstrating that the relationship is one of reciprocity.
As in the ancient Hebrew tribes, reciprocal relationships have always been very important in Mi’kmaq culture and remains so today. Interestingly, these are extended to animals and other objects (rocks or mountains, to only name a few) considered inanimate in a Western world view. In ancient Hebrew culture, relationships were considered reciprocal, because the guest might be carrying a gift. For example, the strangers hosted by Abraham and Sarah return this favour by revealing God’s promise that a son will be born to them (Genesis 18:1-15).
In our world, the relationship between the spiritual care practitioners and the one who is dying can be reciprocal. In their role as host, spiritual care practitioners have a variety of resources available to them: food, shelter, or connections to other health care and community resources. As a good host, spiritual care practitioners will ensure that the dying (in their role as guest) have access to as many resources as they need or desire so that their physical, emotional, spiritual and psychological needs are met. This is one of the gifts that spiritual care practitioners can give the dying. At the same time,
30 spiritual care practitioners can receive gifts. First, God’s grace blesses both the host and guest in this relationship. Second, spiritual care practitioners can receive many gifts from the dying. One such gift is the ability to identify, at some level with the dying, the realization of one’s own mortality, for example. This is a very powerful gift to receive because it can have a profound effect on the spiritual life of spiritual care practitioners, enabling them to make new and different choices on how they live their daily lives as practitioners of hospitality and spiritual healers.
Spiritual care practitioners may choose not to afford themselves of any privilege available to them through the resources that they have at their finger tips. Others may choose to develop a deeper understanding of their role as spiritual care practitioners.
Still others may decide to reflect further (from a theological perspective) on their role as host/guest in their relationship with the dying. Taking time to reflect is significant to the spiritual and intellectual growth: it can help some to realize that their relationship with the dying is one of fluidity. This spiritual and intellectual awakening can guide spiritual care practitioners into a deeper understanding of their relationship with the dying within the concept of spiritual hospitality. Moreover, it helps them understand their relationship with the terminally ill as one of greater mutuality.
In Mi’kmaq culture, a reciprocal relationship implies that one’s relationship to the world, including its many energies and forms of energies33, requires a respectful
33 In the Mi’kmaq culture it is believed that there are many kind of spiritual energies in the world. This teaching came from the Elders in both Pictou and Bear River First Nations communities. Filednotes 2010, 2013.
31 vigilance with the various forms of energies. Since reciprocity relies on humility, respect and generosity of spirit, individuals are required to show proper conduct towards the various forms of energies in the world. Mi’kmaq conduct depends on one’s relationship with the energies.34 Selfishness, arrogance or self-proclamation are considered inappropriate behavior and not in the best interest of the community’s well-being. The community benefits from, and protects individuals who have special connections to the world’s energies.
The relationship between immediate and extended family members is deeply rooted in reciprocal relationships. Mi’kmaq children are introduced to this concept at a very early age by ensuring that a strong element of their socialization is dependent on relationships with family and extended family members.35 Children receive nurturing from many significant others, including grandparents, aunts, uncles, godparents, brothers, sisters and cousins. The significant value placed on reciprocal relationships allows the young to have flexibility in residence, as well. In other words, children may live in their grandparents’ or aunts’ or uncles’ homes as lessons of reciprocal relationships are instilled.
Older children in the community, even those who are not blood relatives, are expected to take responsibility for nurturing the younger ones. In fact, there is an expectation by the community that the older children will teach the younger ones the
34 Sable and Francis, 24.
35 Joe and Choyce, 148.
32 significance of being in relationship. As a result, the closeness that develops between the children in the community is so deep that they understand themselves to be
“brothers” and “sisters”. It is not uncommon for this deep connection to remain throughout adulthood. Therefore, their presence at the death bed of a loved one holds that same value as immediate family members. One research participant explained it this way.
You need to understand the Mi’kmaq Way. We live in the circle of life. So when a person is dying, the immediate family is one circle and the community is the other, gathering around the family. Sometimes I feel like I have to lie when I come to the hospital. They ask me; “Are you family”. Technically I am not. In our community I am. We grow up as family. I am family and I am not. So I lie because I need to be with my “sister” who is dying.36
This participant clearly identifies the significance of what it means to be in relationship in Mi’kmaq culture.
1.5 Spiritual Hospitality: A Common Ground
There is a sense of urgency in closing the gap between the three cultures of care
(Mi’kmaq, hospital and spiritual care practitioner) in Nova Scotia, as in Aboriginal communities aging and dying is a burgeoning health care issue.37 Integrating spiritual
36 Field Notes, Voice 10, Talking Circle A, Bear River First Nation, Bear River, Nova Scotia June, 2012. 37 According to Health Canada, life expectancy for First Nations has improved since 1980 by 8.0 years for males and 8.6 for females. Increasing demands for services for elders (64+) is one result. Poor health is higher in First Nations community in comparison to the rest of the Canadian population. This increases the risk of chronic illnesses (diabetes, heart conditions and obesity). Long term care facilities and home care supports have not been designed to support the increased demands of services in First Nations communities. Health Canada. “Closing the Gaps in Aboriginal Health.” Canada: Health Policy Research Bulletin, Issue 5, March 2003, 1-41. http://www.hc-sc-gc.ca/sr-sr/pubs/hpr-rpms/bull/2003-5-aboriginal- autochtone
33 hospitality represents one way to close the gap. Cultivating a spirit of hospitality within spiritual care-giving practices ensures the cultural beliefs, values, and needs of the dying and their family members are appropriately attended to. While the practice of spiritual hospitality is of great value in all health care settings, it is especially useful in cross- cultural communities. If the terminally ill are not embraced in their totality as human beings, they may experience spiritual distress, existential suffering and loss of dignity at end of life care. This argument is supported by recent research findings in areas of death and dying conducted by Mary Hampton (2010), which suggests Aboriginal cultural beliefs and practices are very influential in designing end of life care.38 But, little work has been done to describe or support the traditional beliefs and practices of Aboriginal people who require such care in Canada. This suggests a need for Spiritual Care
Programs within local health care authorities to build meaningful relationships with local
First Nations communities with the intention of ensuring that spiritual and culturally appropriate care is provided. Many of the principles associated with spiritual hospitality will also help to develop meaningful relationships between the three cultures of care, ensuring better outcomes in end of life care.
In an indirect fashion, Hampton’s findings were supported by one of the participants in this pilot research project who said: “No one has ever come here before to ask us what our needs are for end of life care”.39 Voice 11’s comments identifies that
38 Mary Hampton, “Completing the Circle: Elders speak about end-of-life care with Aboriginal families in Canada”, Journal of Palliative Care 26:1 (2010): 7.
39 Field Notes, Voice 11, Talking Circle A, June, 2012.
34 there is real need for having the three cultures of care within the service area of
Annapolis Valley District Health Authority (AVDHA) come together to build stronger relationships.
Having said this, AVDHA has taken steps towards building stronger relations with some First Nations communities by completing a Memorandum of Understanding
(MOU).40 The MOU between both parties is extremely important because it recognizes that health for First Nations includes the physical, spiritual, mental, economic, environmental, and cultural wellness of the individual, family and community. The health for First Nations must also be addressed holistically and this MOU is significant in that it, knowingly or unknowingly, reflects some of the core principles of spiritual hospitality; establishing relationships based on mutual respect, trust, inclusiveness, and openness for teaching and learning. Some of the practical skills for incorporating spiritual hospitality into this new working relationship include good communication between both parties and cultural safety and competency.
The need to build strong relationships and closing the gaps between the three cultures of care is supported by John G. Abbot, CEO of the Health Council of Canada. He notes, for example, that the experience and needs of Aboriginal people are very different because of a “long and painful history of racism in Canadian society and efforts
40 Bear River First Nation and Annapolis Valley District Health Authority, Memorandum of Understanding Bear River First Nation, Bear River, Nova Scotia, May 22, 2012.
35 to eradicate their culture.”41 If they incorporate spiritual hospitality into their daily practices however, health care providers and the culture within health care services can create a culturally competent and safe environment, free from stereotyping and racism.
Hospitality is a common element in both Christian and Mi’kmaq spirituality.
Therefore, if the principles of spiritual hospitality (welcoming, respect, and listening) are incorporated into the daily practices of spiritual care-giving they will provide a link necessary for building an open and trusting relationship between the three cultures of care. Moreover, it is the application of spiritual hospitality that can allow the existing
Spiritual Care Program at Valley Regional Hospital to move forward to embrace the spiritual and cultural needs of the terminally ill, including the Mi’kmaq.
The incorporation of spiritual hospitality in health care services today is absolutely necessary: it promotes the sharing of a common humanity, of both blessings and sufferings. Welcoming the other into our world implies our own willingness to enter the other’s world, thereby demonstrating that their world view is valued. It is especially important for those who have experienced neglect, abuse and racism in Canadian society to feel welcomed, valued and cared for when they seek health care services, even more so when they are dying.
The urgency in which spiritual hospitality needs to be incorporated within the
Canadian health care system cannot be stated strongly enough: far too often Aboriginal
41 Health Council of Canada, “Mainstream health care services-not meeting the needs of Aboriginal People” News Release, Winnipeg, Manitoba, December, 2012, 1, Canadian Cancer Network, survivornet.ca/…/mainstream_health_care_services_arenot
36 people feel uncomfortable, fearful and powerless when they try to access health care services. As a result, some avoid trying to use health care services even when they are extremely ill. Dr. Catherine Cook (Métis), a Councillor with the Health Care Council of
Canada claims: “While these issues would be of concern for any population, it is a particular concern for Aboriginal people, who have the poorest health and shortest life expectations of all Canadians.”42 Delivering spiritually and culturally appropriate care in health care settings, particularly those serving a diverse population, can make a significant difference by assisting the terminally ill, their family members, and their community to heal spiritually and emotionally.
The delivery of spiritual and culturally appropriate end of life care can also help the dying and their family members to experience and express the fullness of their spiritual and cultural traditions. This has not always been the case for some Mi’kmaw who have been admitted into health care settings for treatment and/or care and who have been made to feel uncomfortable when traditional spiritual and/or cultural symbols are brought into their hospital rooms. Chapter 4 will demonstrate that some have had their sacred items removed or been told that these items are not welcomed. It is painful to have one’s spiritual and cultural traditions dismissed, and left feeling under- valued as a human being.
Embracing spiritual and cultural customs at end of life care is also significant
42 Health Council of Canada, News Release, Winnipeg December, 2012 Accessed October 24, 2014 www.healthcanada.ca
37 because it can help the terminally ill to express their grief, order their behavior, and find meaning to life while living with dying and while actively dying. Further, it can assist those who are suffering from spiritual and emotional distress to connect with their spiritual and/or social communities for additional support. Being denied access to spiritual, religious and culturally appropriate care at end of life care can be devastating to the emotional, spiritual and psychological well-being of the dying. One Mi’kmaq
Spiritual Leader from the Maritimes expressed her concerns when a Mi’kmaq Grand
Chief was dying and was denied access to his traditional spiritual practices:
When one is in a vulnerable position of sickness, or on the edge of the other’s road, our Spiritual Objects, and Peoples’ Teachings are strengthening our faith and connect us with our Creator and with all relations. Not being able to access our Rites, Ceremonies, Medicines and Objects is cultural genocide.43
Sadly, this is not an uncommon experience for the Mi’kmaq.
The words of this Spiritual Leader speak to the injustice of not being treated or respected as a whole human being. The horrible reality heightens the sense of urgency for developing a model of spiritual care-giving rooted in spiritual hospitality. End of life spiritual and cultural care add therapeutic value to the overall well-being of the dying.
Connecting to one’s spiritual energies or God or Creator or Spiritual Being is extremely important to many people who are living with dying or actively dying: it can help them to move from sadness or depression or loneliness or lack of hope to a new sense of
43 Field Notes, communications with First Nations Spiritual Leader from New Brunswick. According to this Spiritual Leader these teachings come from Grandmothers and Grandfathers. E-mail correspondence, November 2009.
38 peace and hope. To deny the terminally ill access to spiritual and cultural nurturing at end of life care can lead to existential suffering, a sense of hopelessness, humiliation and dehumanization. Since the main objective of hospice palliative care services in
Canada is to relieve patients of total pain, including physical, emotional, and spiritual distress, it is necessary to transform our way of thinking in health care.
It is imperative that a model of spiritual care-giving that is deeply rooted in spiritual hospitality be developed and incorporated into the daily practices of spiritual care-giving in all health care settings, including those serving in cross-cultural ones.
Moreover, the principles of hospitality must be filtered into our own beings, the delivery of service and the culture of local health care authorities. By developing best spiritual care practices based on spiritual hospitality we can increase opportunities for the other, such as the Mi’kmaq, to feel welcomed and to know their world view is valued.
Spiritual care practitioners can play an important role in supporting and guiding the dying as they search for the meaning of life. Like other people and cultures, the search for the meaning of life is important to the Mi’kmaq. In fact, it is fundamental to the ceremonial preparations of death for many Aboriginal people.44 Many of the guidelines for end of life care within the Canadian health care system, however, have been developed by non-Aboriginal health care professionals. Consequently, Aboriginal people do not always have access to their own spiritual or cultural traditions so that preparations for end of life and for death itself can be expressed and experienced to the
44 Hampton and Baydala, 7.
39 fullest. Developing a model of spiritual care based on spiritual hospitality can help to ensure that the dying person is cared for as a whole person. In the end, caring is more than a professional obligation---it is a moral responsibility.
As suggested earlier, the vision and facilitation of incorporating spiritual hospitality into a model of spiritual care-giving at end of life care begins with a radical transformation of the way we think in health care. It requires spiritual care practitioners to think of the terminally ill person as a “special guest” who has come into our lives as a fellow human beings. At a much deeper spiritual level and as part of our own humanity, spiritual hospitality needs to filter into and be embraced within the “home of our hearts”.
1.6 Spiritual Hospitality and the Therapeutic Relationship
By drawing on the ancient biblical understanding of hospitality, spiritual care practitioners can add value to their therapeutic relationship with the terminally ill. First, they can begin to understand their relationship with the one who is dying from a much more comprehensive theological perspective. Earlier, this chapter argues that spiritual care practitioners can play the role of host in their relationship with the dying, in turn seen as strangers or guests. This understanding is significant. As host, one of the first obligations that a spiritual care practitioner has to the terminally ill is to welcome them into her life. More importantly, as the host in this relationship, a spiritual care practitioner has the responsibility of ensuring guests are looked after very well.
40 By reflecting on the understanding of ancient biblical hospitality, Christian spiritual care practitioners serving in cross-cultural health care settings can also understand the “stranger” as the one who does not necessarily share the same “world view” as the spiritual care practitioner. Examples include a new immigrant, a person from a minority group, someone of a different race, gender, spiritual or religious life. In other words, the spiritual care practitioner can initially understand the dying as “the stranger” in this relationship if that person does not share her cultural pattern. Spiritual care practitioners must recognize the terminally ill as stranger in this relationship because there is a degree of vulnerability that comes naturally with the role of stranger.
Moreover, spiritual care practitioners need to be aware that feelings of vulnerability can be heightened when the terminally ill are admitted into any given health care setting.
The sense of vulnerability experienced by the dying can come from at least three different sources. First, feelings of extreme vulnerability can often accompany declining health. This holds true especially for those who begin to lose strength in their limbs, or lose control of their bowels or bladder. Second, since the hospital setting and its cultural rhythm can feel very foreign to some patients, including the dying, it can augment vulnerability. Third, the spiritual care practitioner may not share the same world view or cultural patterns as the one who is dying, leaving the latter feeling exposed.
Understanding and developing insight into this vulnerability that the dying may be experiencing is extremely important because when the dying find themselves in an unfamiliar world they can become drained physically, emotionally and spiritually,
41 leaving them feeling even more helpless. To avoid this, spiritual care practitioners must develop a care and counseling plan that promotes person-centered care.
Paying close attention to the vulnerability of the dying is absolutely necessary because the cultural pattern of the approached group (hospital professionals, including spiritual care practitioners) may differ radically from the one who is dying. In other words, there is no sharing of tradition or of a history or of narratives. The dying, in their role as stranger, can be identified as vulnerable, newcomers or outsiders, marginal figures, simply identified as “the patient” and not necessarily seen as whole human beings. Spiritual care practitioners need to pay close attention to this, because when the terminally ill begin to feel like “outsiders” this can lead to feelings of isolation or depression or loneliness, especially if the health care setting is far away from their family and/or community.
It is not unusual for the dying to feel as if they have lost their bearings when they are admitted into health care settings. Some may even feel “homeless” because nothing around them is familiar. One palliative patient expressed her need to be at home so she could be surrounded with the familiar. “Dear, it’s not that the people aren’t good to me here. The nursing staff is very good to me. I just want to be home in my own bed. I want to sit in my chair with my cat.”45 In my role as spiritual care practitioner, I have heard some of the terminally ill cry out, with tears running down their cheeks, “I just want to go home.” Home is more than a physical location: it is the place where the terminally ill
45 Field Notes, Valley Regional Hospital, Kentville, Nova Scotia. Fall, 2012.
42 can gain emotional and spiritual energy. It is their safe place, where they can capture experience and store their experiences or memories symbolically. Homes provide all of us with our identity and give order to our everyday lives. For many people home is where we start and it is where we plan to return.46
The fear of being moved from the familiar to foreign territory is very real amongst Aboriginal Elders. A report by the Nova Scotia Aboriginal Home Care Steering
Committee says potential residents for Long Term Care (LTC) do not want to leave their communities because they fear that their families and friends will not visit them. They worry they will be alone, especially if they are placed far away from the community. Of course these concerns are not unique to Aboriginal seniors living in Nova Scotia. The
Steering Committee speculates, however, that anxiety is more acute for Aboriginal
Elders who are facing these issues because of their lived experience of institutionalization in the Residential School system and the post traumatic style trauma that many continue to experience in their lives.47 The stress associated with being in an unfamiliar setting can compromise some seniors so seriously that it has a huge impact on their overall health. Some seniors, (of various populations) have been known to give up on life and die shortly after being placed in LTC. This is a concern because many seniors, including those deemed palliative, can live productive lives and have much to
46 Lucien, 7-11.
47 Hampton and Hampton “Aboriginal Long Term Care in Nova Scotia: Aboriginal Health Transition Fund Home Care on-Reserves Project.” A Report of the Nova Scotia Aboriginal Home Care Steering Committee (Nova Scotia: Province of Nova Scotia, 2010), 6.
43 give; sharing their wisdom with others, for example.
Health care settings can never replace or adequately portray the environment and social structure of the place or space that is called home. However, by incorporating spiritual hospitality into best spiritual care practices, spiritual care practitioners can assist in reducing feelings of vulnerability, isolation, or loneliness, or the sense of being in foreign territory by creating a welcoming atmosphere. This atmosphere can be created by assisting the terminally ill to experience spiritual healing and growth within their traditions, values and beliefs. For example, spiritual care practitioners can call on community clergy and/or spiritual leaders to assist in creating opportunities for the terminally ill to express and experience their spiritual and cultural traditions. They can also facilitate spirit-centered wholeness by integrating resources from the psycho-social sciences and psychotherapy and they can draw from the resources of their own theological heritage. By doing so, they can break down barriers that have far too often isolated the terminally ill from being treated and respected in their entirety
(emotionally, spiritually, physically and culturally). Henri Nouwen affirms this notion with the following words.
The paradox of hospitality is that it wants to create emptiness, but a friendly emptiness where strangers can enter and discover themselves as created free; free to sing their own songs, speak their languages, dance their own dances and, free to leave and follow their own vocations.48
48 Nouwen, 72.
44 Incorporating spiritual hospitality into best spiritual care practices means that spiritual care practitioners must transform the way they think. In fact, a unique gift that spiritual hospitality can offer spiritual care practitioners is the ability to question how they do think about themselves as individuals, as members of the Christian community, and as health care professionals. Spiritual care practitioners who incorporate spiritual hospitality into their daily lives and practices can take the lead in breaking down categories or silos that isolate their fellow human beings who occupy different spiritual spheres. They have a greater opportunity to develop a genuine and trusting relationship with others when they are willing to meet the other as one human being to another, not because they have a common heritage.
Best spiritual care practices demand that spiritual care practitioners get rid of all presumptions about what the dying might be thinking, even when they are from the same spiritual and/or cultural background. Spiritual hospitality requires spiritual care practitioners to open up communications with the one who is dying allowing them to express their spiritual and/or cultural needs as they move through the various stages of living with dying, active dying and death itself.
In ancient hospitality, the stranger is vulnerable, not at home, often in need of sustenance and shelter. So too, in various health care settings, the dying often feel vulnerable, not at home, often in need of spiritual, emotional, cultural and physical sustenance and requiring temporary shelter. Many come with the hope of being physically sustained so that they can go “back home” to a familiar and secure setting.
45 When the terminally ill enter into a health care setting whether for a long term or short term stay, spiritual care practitioners must be able to welcome them into the homes of their hearts, letting them tell their stories and listening to them hospitably. Being spiritually hospitable to the terminally ill means that spiritual care practitioners are open to receiving the dying into their lives as a whole person, willing to learn from them and being receptive to the gifts that they may offer to the spiritual care practitioner: self- awareness, for example. Living a life rooted in spiritual hospitality and incorporating it into daily practices of spiritual care-giving can create opportunities whereby spiritual care practitioners and other health care professionals can discover something new about themselves or life itself in the midst of serving others. In a similar fashion, the disciples at Emmaus had a profound spiritual awakening when they offered hospitality to a stranger and so discovered who Jesus was for them.
Practitioners must recognize that spiritual hospitality involves the sharing of our common humanity, of blessings and sufferings. They must be willing to enter into the world view of the dying and to let them know that their world view is valued and respected. Failure to do so will hinder spiritual or emotional healing. Moreover, it will fail to honour the Judeo-Christian vision of spiritual hospitality. Creating a model of spiritual care-giving based on spiritual hospitality can be instrumental in closing the gap between the three cultures of care: spiritual care practitioner, the patient and health care culture. It can lead to better outcomes for quality of life (QOL) at end of life care: when dying persons are respected as whole human beings and given access to their spiritual and cultural modalities, they are more likely to die with dignity. Since
46 Aboriginal Canadians, such as the Mi’kmaq have experienced, and continue to experience, a disproportionate burden of ill-health, along with neglect, racism and disrespect within the Canadian health care system, including Nova Scotia, the next chapter turns to a discussion of some spiritual and cultural traditions that influence care and quality of life at end of life for Aboriginal people.
47 Chapter 2: Maintaining Quality of Life at End of Life Care of Aboriginal People
2.1 Introduction
In Canada there are three main groups of Aboriginal people: First Nations, Inuit and
Métis peoples. Prior to European contact, Aboriginal peoples accessed health care through their own systems rooted in holistic and ecological understandings of health and wellness that aimed for balance in the physical, mental, emotional and spiritual aspects of life. This balance was carried out within oneself, and also within the context of family, community, natural laws and the laws of the Creator.49 For the Mi’kmaq health care was the responsibility of people trained in the science. Daniel N. Paul
(author and Mi’kmaq historian) claims physical and mental health issues were treated with care and compassion by the community. The medicine men treated physical ailments with a variety of potions and poultices available to them. Mental health issues, which were rare, were treated with psychological tools.50
Canadian Aboriginal people have faced many challenges in access to health care in Canada in peri- and post-colonialism. A literature review clearly illustrates that
Aboriginal Canadians in the 21st century experience a disproportionate burden of ill-
49 Kerrie Doyle, “Modes of Colonization and Patterns of contemporary Mental Health: towards an Understanding of Canadian Aboriginal, Australian Aboriginal and Maori People,” Aboriginal & Islander Health Worker Journal (January/February 2011): 21.
50 Daniel N. Paul, We Were Not the Savages: First Nations History (Nova Scotia: Fernwood Publishing, 2006), 23.
48 health and have endured a history of racism in accessing and using health care. This population is increasing at a rapid rate51 and people are living longer, resulting in an urgent need to facilitate better QOL in end of life care. Many health care providers across Canada have expressed the desire to provide better outcomes of QOL at end of life care for Aboriginal families and individuals, but barriers within Canadian health care systems prevent this. Lack of access to culturally appropriate health care, including end of life care is a case in point.
The first section of this chapter will define QOL as it applies to end of life care. It also discusses some key factors affecting QOL for Aboriginal people. Section two addresses the ramifications of failing to maintain QOL. The last segment focuses on some crucial principles that spiritual care practitioners can use to advance QOL in cross- cultural health care settings with the hope for better outcomes.
2.2 Quality of Life at End of Life for Aboriginal People
The term, “quality of life” in health care has been defined as the physical, psychological, social and spiritual domains of health influenced by a person’s experiences, beliefs, expectations and perceptions.52 This definition has been influenced by the World Health Organization (WHO). In 1948 a call for accessibility to the best
51 In the 2006 Canadian Census report, Aboriginal population grew by 45%, in comparison with 8% for the non-Aboriginal population. The 2006 census shows that in Nova Scotia the Aboriginal population increased by 42% while the non-Aboriginal population has shown signs of a slight negative growth.
52 Marcia A. Testa and Donald C. Simonson, “Assessment of Quality of Life Outcomes,” New England Journal of Medicine (March, 1996): 334: 835.
49 possible standard of health for all human beings came from WHO. According to its
Constitution health is not only the absence of disease and infirmity, but also the presence of physical, mental, and social well-being. Since then, WHO has added spiritual well-being to this definition as a significant element of overall health. From its inception, WHO has claimed every human being has the fundamental right to the highest attainable standard of health without distinction of race or religion or political belief or economic or social condition.53 In other words, WHO legitimizes the rights of all people, including Aboriginal people in Canada, to the best possible standards of health, including quality of life during end of life care. This includes accessibility to all health care services. Adopted by the International Health Conference, the Constitution of WHO has guided and shaped health care systems and policies in many countries, including
Canada. It has played a key role in assisting our health care leaders to design hospice palliative care services.
Acknowledging the basic standards of health care set by this world organization is significant in end of life care because it implies that pluralities of cultures exist and that cultures themselves are heterogeneous. Moreover, the Constitution of this organization can help to set the standard for how individuals, family members, communities and nations will manage health and dying, and the QOL for end of life care.
Each individual, family member and community will, however, be unique in how they
53 World Health Organization, Constitution of the World Health Organization as adopted by the International Health Conference, held in New York, 19 June to 22 July, 1946 by the representatives of 61 States (Off.Rec. WLD. Hlth. Org., 2, 100), and entered into force on 7 April 1948.
50 cope with end of life care and choose to experience their own unique QOL.
Despite the successful growth of the hospice palliative care movement during the last 30 years in Canada, cross-cultural care at the time of death is always challenging. This is due in part to the fact that cultural competency is greater than cultural awareness. “Cultural competency is a collectivity of skills, abilities, capabilities and competencies that an individual puts together in order to build high quality relationships with families from different cultural backgrounds”54. Significantly, this definition recognizes that cultural competency is contextual. In other words, it may differ from one community to another or from within one care setting to another.
Moreover, it responds to the diversity that may exist between particular cultural groups.
As Chapter 1 notes, there is considerable diversity among First Nations communities. We cannot assume that the spiritual and cultural needs in one community may be the same in another. Nor can we assume that the QOL for one First Nations community will be the same for another. Moreover, within each First Nations community the spiritual and cultural needs of each individual person may be different, making the QOL for each individual unique as well.
That being said, demographic research demonstrates that there are some similarities amongst First Nations people. The population of many communities is growing, but higher growth rates mean more deaths and types of death. End of life care,
54 Gaye Hanson, Conversations on Caring-Classic Series (CPP-009) (Canada: University of Alberta, Canadian Pallium Project, Creative Commons 3.0 License, 2009), 5.
51 therefore, is a high priority amongst First Nations peoples. Bear River First Nations, Nova
Scotia, tends to differ from the general demographic profile in that its population has remained steady at 100 people: the majority is middle-aged to seniors.55
First Nations seniors (65+) make up 3%-5% of the Canadian population in comparison to 11% in the non-Aboriginal populations. Mortality rates among Aboriginal
Canadians of all ages are four to five times higher than non-Aboriginal population, however.56 Contributing factors to these increased mortality rates are injuries which include accidents, suicides and homicides. Higher mortality and growing chronic illness rates strongly suggests the need for culturally and spiritually appropriate end-of-life health care for Aboriginal people, as this contributes significantly to QOL during end of life care.
Maintaining QOL demands more than culturally appropriate care or cultural competency, however: it must be accessible for the one who is dying and the family members. Accessibility to health care, including end of life care, has not always been easy for Aboriginal people. Traditionally, palliative care services for many Aboriginal people have only been accessible outside their home communities and/or in institutional settings such as hospitals. The lack of access to health care settings adds
55 Canada, Census Canada, “Community Profiles: 2006 Bear River, Indian Reserve, Nova Scotia”, Statistics Canada-Census Subdivision, 2006, http://www12.statcan.gc.ca/census-recensement/2006/dp- pd/prof/92-591/details
56 Mary Hampton, Angelina Baydala, Carrie Bourassa, Betty McKenna, Gerald Saul, Kim McKay-McNabb, Keb Goodwill, Velda Clark, and Jeff Christiansen, “Seven Years of Completing the Circle: End of Life Care With Aboriginal Families,” McGill University School of Nursing, CJNR (2011): 119-120.
52 additional stress to many Aboriginal people living with chronic and/or life threatening diseases who must travel long distances for palliative care services. Their energy level may already be low due to the progression of the disease: traveling saps what little energy they have. They are also leaving their main support systems, their families and communities. Unfamiliar hospital settings and systems are often experienced as “foreign territory.” These unfamiliar cultural milieus can be frightening. In contrast, for many non-Aboriginal people a hospital is often close to home and culturally appropriate.
In the last decade, many young Aboriginal Canadians have moved to urban settings where they now live in “non-isolated” communities. In 2002, National
Aboriginal Health Organization (NAHO) reported that 60% of Aboriginal Canadians live in urban settings. Regardless of where Aboriginal people live in Canada, access to comprehensive and appropriate palliative care is an enormous challenge, however. In urban centers, for example, Aboriginal people are often separated from cultural norms and needs. Accessibility to spiritual and cultural supports at end of life care is extremely important in having better outcomes of QOL because they play a major role in how the dying make meaning out of what is happening to them and of the process of dying itself.
This statement, of course, holds true also for many Canadians with a variety of backgrounds; Asian, Italian, Portuguese, European and Ukrainian, to only name a few.
Having said this, it needs to be acknowledged, that at the present time, there is no Canadian standard for addressing Aboriginal palliative care needs. This needs to be addressed and changed because the experiences and needs of Aboriginal people are
53 very different from other Canadians. As mentioned in Chapter 1, this is due to their long and painful history of racism in Canadian society, (including the health care system), and efforts to abolish their culture. Aboriginal Canadians must be able access the same set of services as other Canadians without prejudice.57 Moreover, they must be able to access health care services in Canada knowing that they are entering into a hospitable environment where they will be treated with respect, empathy and dignity as opposed to prejudice, racism and stereotyping.
Within the service area of Annapolis Valley District Health Authority (AVDHA), there are three hospitals. All three First Nations communities are in close proximity to the hospitals. Having said this, spiritual care practitioners need to be aware that it is not only physical distance that can make First Nations people feel isolated from their family and community. The very fact that one has been admitted into hospital automatically separates them from their families, communities and culture. Since AVDHA is not able to provide all treatments for patients, it is necessary for some to go to Halifax. Traveling outside the region can further increase levels of stress for patients, family members and the community.
Interestingly, some non-Native people living within the same service area have expressed similar concerns of feeling isolated from their family and community when admitted into hospital. This holds true especially for those living in more rural areas of
57 Heather Castleden, Valerie A. Crooks, Neil Hanlon, and Nadine Shuurman, “Providers Perceptions of Aboriginal palliative care in British Columbia’s rural interior”, Blackwell Publishing Ltd., Health and Social Care in the Community (2010) 18(5), 484.
54 Annapolis Valley and who have been transferred from their home hospital to Valley
Regional Hospital, known as the “Mother Ship” of AVDHA. Some rural farm families, for example, have expressed concerns that they feel out of their comfort zone when they are admitted to the larger regional hospital. Some feel insecure or not as worthy as the
“formally educated” health care professionals. Others feel isolated because their loved ones and friends cannot visit them due the long distance drive from their home to the hospital. Hence, addressing the needs of Aboriginal people, may at the same time, improve the quality of end of life care for all patients.
There are many interconnected factors that affect QOL at end of life care for
Aboriginal people. A discussion on the ramifications of failing to maintain QOL at end of life care will bring some of these themes forward.
2.3 Ramifications of Failing to Maintain Quality of Life
Neglect of QOL at end of life care can be devastating for the dying, their family members, caregivers and the community. In fact, research conducted by the Mayo Clinic
Cancer Center in the United States shows premature death occurs when QOL deteriorates. Passive surrender or active suicide is prominent in these early deaths. The research also lists four factors commonly associated with QOL that determine the patient’s will to live: depression, anxiety, shortness of breath, and sense of well-being.
The will to live is strongly associated with the sense of well-being, physically, emotionally and spiritually. This research was conducted with a group of terminally ill
55 cancer patients who were hospitalized and receiving palliative care.58 The participants were not identified by spiritual or religious or cultural affiliation.
Neglect of QOL during end of life care is devastating for many Aboriginal people, like the Mi’kmaq. Provincial hospital services have responded poorly to their healing practices and/or spiritual experiences; for example, in the following case study, a spiritual sensibility is interpreted as a possible psychosis:
Ms. Blessing59 a 32 year old Aboriginal woman was from a remote northern community in Canada. She was sent to an urban hospital for tests. Ms. Blessing was diagnosed with a life threatening disease, her prognosis was poor. After sharing her spiritual experience with a health care professional, the health worker consulted psychiatry for an assessment.
According to one Mi’kmaq Grand Chief of the Maritimes, it is not unusual for First
Nations people to be given a psychiatric assessment after sharing their spiritual experiences with health care professionals.60 According to the Grand Chief, the problem stems from the health care provider’s lack of understanding Native spirituality. Failure to provide a culturally competent and safe environment for Aboriginal people who access health care, including end of life care can increase their stress levels, unnecessarily. In addition, failure to recognize an individual’s spiritual needs and beliefs
58 Theresa A. Rummans, J. Michael Bostwick, Matthew M. Clark, “Maintaining quality of life at end of life”, Mayo Foundation for Medical Education and Research 75 (2000): 1305-1310
59 Ms. Blessing is fictitious name and is not to be associated with any one person, community, province or hospital setting. Verbatim notes taken by the author, February, 2004, Manitoba, Canada.
60 Grand Chief of Prince Edward Island, Mi’kmaq Community, interview by the author, July 2006, Prince Edward Island, Canada, field notes.
56 within a cultural context falls short of supporting the autonomy and human rights of the person(s) receiving care.
In Nova Scotia, the Mi’kmaq population is primarily rural and small. The province has nine district health authorities, each operating a palliative care program. The
Mi’kmaq have access to all of these programs. The extent of services in these programs varies, however. In AVDHA for example, some palliative patients must go to Halifax for radiation treatments, which is used in some cases for comfort measures only. Financial restrictions that prevent accessibility to full treatment services in regional communities can contribute to poor outcomes in QOL. Transportation costs and accommodation for family members in urban centres also deter patients from seeking treatment. Moreover, the absence of family members and being far from their communities can have a major impact on emotional and spiritual well-being.
Some might argue that these issues are peripheral and therefore do not have a direct link with QOL at end of life, but a key issue is the length of time that individuals are away from home. The longer a person is away, the more likely she is to feel isolated, lonely and socially excluded. These feelings are heightened when the environment is unfamiliar, such as hospice palliative care settings or hospital culture. For the Mi’kmaq, feelings of isolation, loneliness and social exclusion can be devastating especially as relationships with family and community play such a significant part in their overall health, including their spiritual and cultural well-being.
57 A report released by the Nova Scotia provincial government gives provincial hospitals a poor grade in responding to Aboriginal healing practices. The funding bodies for Aboriginal health care in Nova Scotia also deserves a poor grade because even though more money has recently been invested in Aboriginal health care, the proportion per capita is much less than the rest of Canada (Appendix II). Since lack of funding contributes to gaps in access, quality care, and health outcomes, it can be argued that it also contributes to disparities in QOL at end of life care. Other issues include provider biases, lack of continuity of care, healthcare system barriers and limited interpretation services, issues raised by indigenous peoples throughout North
America.61
The Nova Scotia Department of Health and Wellness recognizes the significance of cultural competency in the provision of health care, but there are still concerns about
QOL during end of life care. Complicated jurisdictional issues (federal and provincial governments), in combination with Treaty and non-Treaty status, and First Nations people living on and off reserves all contribute to poor QOL. The Roy Romanow report, written by a former premier of Saskatchewan, supports this argument. Appointed by former Prime Minister John Chretien in 2002 as Commissioner to examine the future of health care in Canada, Romanow identified the following five components as the main contributing factors to a disconnect that exists between Aboriginal peoples and the rest
61 Grace Johnston, Adele Vukic, and Skylan Parker, “Cultural understanding in the provision of supportive and palliative care: perspectives in relation to an indigenous population,” BMJ Supportive & Palliative Care (2012), doi: 10:1136/bmjspcare-2011-000122, 3.
58 of Canadian society in sharing the benefits of the health care system:
competing constitutional assumptions fragmented funding for health services inadequate access to health care services poorer health outcomes different cultural and political influences.62
One of the solutions that Romanow proposed was consolidating Aboriginal health funding from all sources so that Aboriginal health partnerships could be created with a clear mandate to manage Aboriginal health services. Cross-jurisdictional remedies however, are very difficult to implement in the Canadian health care system, leaving much of the work to support Aboriginal people in end of life care as an ad hoc process at the local level.
It may seem obvious, but a factor contributing to the ‘disconnect’ between
Aboriginal people and the rest of Canadian society in sharing health care benefits is colonization. In Canada, colonization led to the creation of reserves, a variety of methods amounting to forced assimilation, especially residential schools where children were not allowed to speak their languages, and were often abused. Residential schools are now closed, but many Aboriginal people suffer from the after-effects of the abuse.
Given the legacy of colonization, some argue that decolonizing practices within the Canadian health care system will help to promote effective approaches to health care for Aboriginal people. In current research conducted by Mundel and Chapman
62 James B. Waldram, Ann D. Herring, Kue T. Young, Aboriginal Health in Canada: Historical, Cultural, and Epidemiological Perspectives, 2nd edition (Toronto: University of Toronto Press, 2012), 234.
59 (2010), they asked the following question. “What might a decolonizing approach to health promotion look like?”63 By examining the Urban Aboriginal Community Kitchen
Garden Project (Vancouver, Canada), the researchers discovered that Aboriginal healing practices draw a great deal on spirituality, ceremony, time spent with others and in nature to promote health and healing. The Garden project, which is guided by Aboriginal approaches to health and healing, as well as by other cultural health teachings like the
Medicine Wheel, provides a very distinctive approach to Aboriginal health care. It differs from mainstream health care because it engages a natural setting, spiritual leaders, and cultural ceremonies for health and healing. In addition to providing culturally appropriate health promotion, the Kitchen Garden Project has made “treating the whole person” one of its goals. According to the Elders and project leaders of the community this has been accomplished by making every effort to understand the individual, family members and the community as a whole.64
Corrine, a participant in this study, spoke to the unique approach of the Garden
Project and the value of promoting holistic health: “We really try, but in our own way.
When we were not allowed to practice our spirituality, the mental anguish around that…who are we?”65 Ignorance of the role and impact of spiritual and cultural ceremonies on end of life care for Aboriginal people can be detrimental to their QOL. As
63 Ericka Mundel, and Gwen E. Chapman, “A decolonizing approach to health promotion in Canada: the case of the Urban Aboriginal Community Kitchen Garden Party,” Health Promotion International 25, .2 (2010): 167 doi:10.1093/heapro/daq016.
64 Mundel and Chapman, 166-169.
65 Mundel and Chapman, 170.
60 the Garden Project’s promotional material states: “Health will only be realized when the mental, emotional, physical and spiritual health of the individual, community and
Universe are in balance.”66 In their research, Mundel and Chapman noted the following after speaking with one of the research participants: “…what made the project feel like a comfortable and welcoming place was the way project leaders seemed to ‘get’ her and understand her context.”67
One of the outcomes of this project has been the feeling of empowerment by the participants and those taking leadership roles in the Kitchen Garden project. By becoming decision makers in their own health care system, Aboriginal people improved their QOL. Similarly, in Nova Scotia, the Eskasoni First Nation realized that they had to meet changing needs in their community by promoting healthier communities and fulfilling a dream of having a health centre: these initiatives allowed their people easier access to health care and holistic treatments. In fact, the advocacy of Aboriginal voices in a variety of political arenas across the country has played a significant role in addressing some major health care concerns.
Like people from non-Aboriginal cultures, Aboriginal people can feel a sense of empowerment when they are respected, honoured and welcomed in the health care system. Creating a hospitable atmosphere within the health care system is significant in improving QOL at any stage of an individual’s journey: it promotes holistic health care
66 Mundel and Chapman, 170.
67 Mundel and Chapman, 169.
61 by embracing and welcoming the other in their totality as a human being. Having said this, health disparities and access to appropriate health care continue to concern
Aboriginal peoples. The lower QOL during end of life treatment experienced by
Aboriginal populations such as the Mi’kmaq is directly and indirectly associated with or related to the social, economic, cultural and political inequities they experience.
2.4 Three Principles of Spiritual Care-giving to Improve QOL in Health Care Settings
All spiritual care practitioners who attend to dying patients in the hospital have important roles to play in improving QOL in palliative care. Three principles of spiritual care-giving that can help to promote better outcomes for QOL in end of life care: self- awareness, complicated hospitality, and an ethics of care.
(a) Self-Awareness
Chapter 1 considers how the word “stranger” suggests someone who belongs to another world other than ours, perhaps speaks another language and has different customs. It is important for spiritual care practitioners to recognize another stranger within their own familiar circle, someone they need to welcome and embrace: this is the stranger within themselves. Spiritual care practitioners must understand themselves as whole human beings: the better they understand themselves as whole human beings, the greater the chance they have of embracing both prayerfully and genuinely a life that is open to the needs of others.
62 Spiritual care practitioners are not exempt from the good, the bad and the ugly that life has to offer. Like other human beings, they will probably never be free from inner hostilities: nevertheless, the pain and hurts experienced in life need to be attended to and healed. It is also realistic to acknowledge that life itself can be so complex that the movement towards hospitality is not a smooth transition or a one-way street. It demands a lot of hard work by the spiritual care practitioner. Being aware of the need for inner healing, growth and self-awareness is a case in point.
In his book, Reaching Out, Henri Nouwen claims our relationships with others are determined by our own self-awareness. Expanding this can enrich our lives: it gives us the opportunity to become aware of any hostile feelings that might dominate our emotional life. Hostile feelings include bitterness, grief, jealousies, insecurity, and anger, to only name a few. These feelings can prevent us from being in an open, close and genuine relationship with others, assuming the best possible relationship that we can have with others is an emotional distance.68 For example, maintaining an emotional distance can be detrimental to developing a deep and meaningful relationship with the terminally ill. Emotional distancing can contribute to poor outcomes of QOL: it can prevent spiritual care practitioners from getting below the surface and probing the underlying issues that may prevent the dying from having a peaceful death. It can also contribute to creating a superficial relationship rather than a deep and meaningful one.
68 Nouwen, 79. 63 Before spiritual care practitioners can have a genuine and meaningful relationship with the dying, however, they must be willing to move from their own hostility to hospitality by getting to know who they are as whole human beings. This can begin by getting in touch with and/or being in relationship with themselves. When spiritual care practitioners are comfortable in their own skins, they will become more willing to take the time and effort required to build a deep, trusting and meaningful relationship with others, including the dying. Getting to know themselves can include understanding their roles as spiritual care practitioners, especially in our fast-changing world. If a clinically trained spiritual care practitioner, for example, understands her role to include liberating, empowering and nurturing the wholeness of the Spirit centered within the terminally ill, she will understand that in her role as spiritual care practitioner, she should not reprimand or proselytize the dying or act as a “do-gooder”
(in the pejorative sense). She will understand her role as one of creating an opportunity whereby the dying can identify their feelings, express their thoughts and feelings freely, and find solace within their own spiritual and cultural traditions. Having a good understanding of her role is also necessary for building confidence and strong relationships with other members of the health care team: when they see the spiritual care practitioner’s use of holistic patient-centered care, they may understand its benefits in the care of the dying.
Clinically trained spiritual care practitioners who fail to increase their own self- awareness may jeopardize their relationship with the dying and diminish the therapeutic value of this relationship. A spiritual care practitioner for example, who may
64 have lost a child to death and who has not healed from this personal tragedy may not be the best provider of care to a family whose child has just died. Such a tragedy may trigger unresolved grief for the spiritual care practitioner; making her unable to care and/or attend to this family’s need in the best possible fashion. Alternatively, a person who has embraced the pain of such a loss and grown in the process may know precisely how best to serve the needs of a family facing such loss.
Any one of us can have events in our lives (knowingly or unknowingly) that may create feelings of sadness, insecurity, distrust, suspicion, hatred, and even desire for revenge. Spiritual care practitioners need to take time to invest in their own healing before they can be in deep and meaningful relationships with others. Failure to do so can lead to boundary issues, oppression, and disregard for others in their totality as a human beings.
The movement from hostility to hospitality can be accomplished through a variety of avenues including advanced studies in theology, Clinical Pastoral Education, therapy, regular exercise programs and spiritual direction, to name a few. This work can be done in sync with formal education such as Clinical Pastoral Education or at any time in the spiritual care practitioner’s spiritual and life journey. Ongoing therapeutic work is also essential for spiritual care practitioners because they frequently work with families in crisis, facing death and dying. Failure to have a good self-care program can lead to burn-out and/or other health issues.
65 Getting to know oneself involves more than connecting with inner struggles, however. It also includes embracing the things that spiritual care practitioners like about themselves such as kindness to others or a willingness to support those whose beliefs and values may be different. Increasing self-awareness can also help spiritual care practitioners become aware of the hospitality they have received and enjoyed from others. The dying, for example, can be wonderful hosts to spiritual care practitioners by inviting them into their lives. In their roles as host, the dying can create a free and friendly space whereby the spiritual care practitioner can learn. By sharing their insights the terminally ill can teach spiritual care practitioners much about beliefs, values, and rituals, and educate them about giving and affirming life, courage, hope and faith.
Lessons learned from the dying can be influential in the spiritual care practitioners’ own self-awareness, growth in their humanity and how they practice spiritual care-giving. For example, the dying can teach them when to use the creative use of silence in their relationship. Some will begin this lesson by simply reaching out to hold the hand of the spiritual care practitioner. Some will simply stop talking while others might say, “I am too tired to talk.” Depending on their energy level and stage of dying, some may choose to close their eyes once they have grasped the spiritual care practitioner’s hand. This gesture can provide the terminally ill with great deal of comfort. For some, solace comes from the fact that the spiritual care practitioner may be the first person within the hospital context they have actually touched. In today’s health care system many health care professionals are obliged to wear gloves for the purposes of infection control. To actually feel the skin of another person allows the
66 terminally ill to feel human, as opposed to the disease or illness that has taken over their bodies.
Comfort can be experienced by the mere presence of the spiritual care practitioner. Presence alone can indicate caring. Sometimes the dying may open their eyes for a moment and speak or they may just look into the eyes of the spiritual care practitioner. If they speak, they may say little. In these moments, it is important to just be with the one who is dying, listening when they do speak and giving very little feedback, perhaps acknowledging they have been heard.
The hospitality and teachings of the dying are significant for three reasons. First, they determine the depth of the relationship the spiritual care practitioner develops with them. Second, they determine the quality of relationship between both parties.
Third, they improve the QOL for the one who is dying: a relationship that has been built on trust and commitment provides greater opportunities for the terminally ill to be embraced in their totality as human beings by the health care team as a whole, including the spiritual care practitioner.
Spiritual care practitioners who work at moving from hostilities to hospitality have a far greater chance to affirm an open attitude towards the terminally ill. In contrast, spiritual care practitioners who do not work at their own inner struggles to heighten self-awareness have a greater potential for not seeing the dying in their totality and uniqueness. The QOL for the dying may be reduced because their beliefs, values and culture are ignored and/or not recognized as significant.
67 (b) Complicated Hospitality
Incorporating hospitality into the spiritual care practitioner’s personal life and spiritual care-giving practice is not a romantic gesture by any means and can be very complicated. Complicated hospitality can be defined as those moments when spiritual care practitioners are required to create a welcoming space even when opposing views about care are being presented by the patient or family members or health care team.
Complicated hospitality can also be understood as those moments when spiritual care practitioners need to work within the reality of the situation. As a member of the health care team, spiritual care practitioners can be called into a family meeting where the patient and family members learn that there is nothing more to be done. Hearing
“there is no cure or there is nothing more we can do” can be devastating for patients and/or their family members.
In some cases, family members may experience a great deal of anger as they go through the process of anticipatory grief. These situations can become very difficult if one or more family members begin to direct their anger towards the health care team.
Misdirected anger can create a hostile atmosphere for the patient, the health care team and the family unit. Clinically trained spiritual care practitioners have specialized training helping them to navigate these difficult situations. They will recognize, for example, that the stress of the situation has led some family members to a breaking point. They will also acknowledge that outbursts of anger may allow individuals to protect themselves from the pain associated with losing a loved one. Further, this devastating news may
68 have caused individuals and/or the family unit’s traditional methods of coping to fail.
Therefore, spiritual care practitioners need to assist the family to make specific changes and move towards resolving the crisis. This may mean accepting that their loved one is going to die.
Complicated hospitality became the order of the day when the health of a 76- year- old male, who was diagnosed with a stroke, continued to decline.
After one week of intensive medical treatment it was determined by the medical team that Mr. Army’s69 body was not responding to treatment; therefore, the family needed to make a decision with regards to further medical intervention. Removing ventilation would result in death. Needless to say, the family was devastated. One family member became very hostile with the health care team following the medical update. She began to give orders to the medical team and became verbally abusive. The spiritual care practitioner worked with both the family unit and the individual with the hope of moving them towards the acceptance of Mr. Army’s impending death. The spiritual care practitioner was hoping that by working with this family their resources could be mobilized, a plan of action could be determined and specific changes made so they could resolve their crisis. This entire process took two weeks because one of the adult children put a thick wall around her heart and was unable to let anyone in so she could say goodbye to her father. Her ongoing abusive behavior towards the medical team resulted in them consulting with both ethical and legal resources. The spiritual care practitioner continued to work with the family until they were able to make a thoughtful and decisive decision with regards to Mr. Army’s ongoing health care plan. The family decided to discontinue all treatments and move towards palliation.70
Clearly, this particular case was very difficult. Complex family dynamics and behaviors of one adult child made it hard for this family to move to a place where they
69 Mr. Army is fictitious name and is not to be associated with any one person, community, province or hospital setting.
70 Field notes, Winter (2012), Nova Scotia, Canada.
69 could accept the impending death of their loved one and begin to make responsible choices for his end of life care. The spiritual care practitioner and the medical team needed to work extremely closely together so they were not pulled into the dysfunction of this family unit. More importantly, the spiritual care practitioner and medical team had to stay focused on the best interest of the patient despite the family’s dysfunction.
The spiritual care practitioner maintained her self-confidence, calmness, stability, and willingness to play an active role in the care of this patient and family unit despite the attempts by one family member to pit one team member against another.
Further, she needed to extend hospitality to this family by attending to and listening to their struggles with genuine love and care. Knowing the extension of hospitality can be very complicated can prepare spiritual care practitioners for these challenging situations: allowing them to improve QOL for the terminally ill and embracing the family in its totality. Failure to do so can limit QOL. If a family for example, cannot move towards a thoughtful and decisive health care plan for their loved one, it is quite possible that the one who is dying may experience unnecessary physical and/or, emotional and spiritual pain. After much reflection in this case, the spiritual care practitioner determined that the QOL for end of life care was limited for Mr. Army due to family dynamics, the abusive behavior of one family member and the emotional and spiritual complexities of the family unit.
So far hospitality has been understood as receiving the other. This is only one side of hospitality, however. The other side is confrontation and this can lead to
70 complicated hospitality. The word confrontation can be defined as “face boldly; oppose or face to face; place before or compare.”71 Confrontation amongst family members at end of life care occurs often when family members are in different stages of anticipatory grief: accepting the impending death of a loved one as opposed to non-acceptance. It is important for spiritual care practitioners to pay particular attention to confrontation because it can go hand in hand with complicated hospitality. How it is handled can lead to better outcomes for QOL of life at end of life care or the opposite.
Confronting patients and their family members in the midst of emotional and/or spiritual crisis is necessary in the practice of spiritual care-giving: all parties need to mobilize their coping resources in a way that will allow them to handle their immediate crisis more effectively. Spiritual care practitioners can assist the terminally ill and their family members in this process by providing help in reality testing and in planning effective approaches to the new situation in their lives that has been created by the crisis.
Creating a safe space in the midst of emotional and/or spiritual crisis is not an easy task because it demands a great deal of concentration and articulate work by the spiritual care practitioner. When spiritual care practitioners are working with families in crisis it can often feel like they are storm chasers. The winds are busy tossing a variety of unresolved issues and feelings around the periphery of the storm; anger, power
71 W.S. Avis, P.D. Drysdale, R.J Gregg, M.H. Scargill, Gage Canadian Dictionary (Toronto: Gage Educational Publishing Limited, 1973), 241.
71 dynamics amongst family members, grief, competition, frustration and fear. But the spiritual care practitioner needs to clear an emotional and spiritual pathway so the individual and/or family can find coping resources. This can be accomplished by listening attentively and attending to the emotional needs of the individual and/or family unit.
The next step in responding to a crisis situation is for the spiritual care practitioner to assist the family to identify the essential elements of the problem. Both steps can help reduce anxiety levels and enhance the self esteem of individual or family units in crisis, allowing them to pull themselves out of the storm and make thoughtful, and decisive decisions about their loved one’s health care plan for end of life care. This is absolutely necessary. If an individual and/or family unit cannot find a coping mechanism, they can become emotionally and spiritually disabled, going in a direction that will inhibit them from making appropriate decisions for end of life care, including comfort measures only.
Spiritual care practitioners need to recognize that crises are crucial times in the lives of individuals and/or families. They need to work carefully and diligently to bring a sense of calm to the situation. The one who is dying and their family members must have an opportunity to discover or rediscover their traditional coping mechanisms. This will help them to mature both emotionally and spiritually. It can also help them to take action and make decisions that will increase QOL at end of life for their loved one.
Extra care and sensitivity may be required when working with the Mi’kmaq in times of complicated hospitality. As noted earlier in this chapter, Aboriginal people in
72 Canada have a very high mortality rate. As a result, many Aboriginal people and their communities may already be facing complicated grief when called upon to serve their own loved ones who are living with dying or actively dying. Spiritual care practitioners, therefore, may need to be gentle and a little more patient with First Nations people when trying to guide them to discover or rediscover their coping mechanisms. Patient and family care can be so complex in health care today that spiritual care practitioners must consider how they should respond to confrontational situations. First, they need to realize that they must shift gears in caring and counseling. Second, they must continue to welcome the dying, family members and health care professionals into their lives by demonstrating a willingness to care. Third, they need to create a safe and friendly space where everyone involved---the terminally ill, their family members and health care professionals - can reflect without fear of being judged.
The following anecdotal case exemplifies complicated hospitality.
An 87-year-old woman entered the hospital. She was diagnosed with pneumonia. After one week of medical treatment her health continued to decline. Within a twenty-four hour time period the patient became non-responsive. She was actively dying. At this point the family moved into crisis mode.
There were at least four elements that contributed to the crisis. The external element was the impending death of the mother. The second element was the perception by several family members that the mother’s death would pose a threat to their individual well-being and that of the family. Third, unresolved grief from the father’s death and finally family conflict contributed to the crisis.
Since the family was unable to cope with the present situation they were not able to make decisions to move the mother from the treatment of cure to palliation. Consequently, the family requested the continuation of all medical treatments, including treatment that may cause unnecessary physical harm to the patient.
73 The family’s petition placed the health care team in an ethical dilemma, “to do no harm”. The medical team firmly believed that to honour the family’s wishes would increase the patient’s physical suffering. After explaining this to the family, the family continued their requests for ongoing tests and medical treatment.72
Since the spiritual care practitioner was summoned by both the family and the health care team, it was necessary to respond to the spiritual needs of both parties. In this case the family needed to be treated for anticipatory grief. Further, they needed to be supported and guided through a process that would enable them to move emotionally and spiritually from their place of hoping for a cure to acceptance and palliation. Meanwhile, the health care team needed a safe place where they could speak freely to both their professional and spiritual dilemmas. While the process to move the family out of crisis mode into a coping mechanism was in process, the QOL for this patient was jeopardized because the risk of physical suffering increased.
Regardless of the complexities involved in some cases, spiritual care practitioners need to be mindful that when they invite the terminally ill and their family members into their lives the relationship does not become one sided. Let me explain. If the spiritual care practitioner in the above case had approached this situation of moving the case along by ignoring the family’s needs and with the attitude “You can be my guest providing you believe what I believe, and think the way I think,” it is quite possible she would be imposing her thoughts or suggestions on the family. The course of action would be inhospitable, oppressive and disempowering. This kind of attitude places a
72 Field notes, February, 2013, Nova Scotia, Canada.
74 condition on the love and care that a spiritual care practitioner is willing to offer and it opens up an opportunity for the spiritual care practitioner to take advantage of the terminally ill and/or their family members when they are most vulnerable. Needless to say, this kind of attitude is detrimental to QOL.
Spiritual care practitioners need to be genuinely open to the needs of others, even in times of complicated hospitality. In this case, by extending hospitality to both the family and the health care team, the spiritual care practitioner was able to offer the family both emotional and spiritual care. She was also able to provide emotional and spiritual nurturing to the health care team so that everyone involved could get through this challenging situation. She did this by listening with an open heart and ear, offering warmth and practical support. This family needed short-term crisis intervention to finally accept their mother was dying and to make appropriate decisions for her end of life care. Once they were able to mobilize their traditional coping mechanisms, they gave the health care team permission for palliation, allowing their mother to die peacefully and comfortably. Further, the family members were able to find their own emotional and spiritual serenity: they prayed their goodbyes calmly and supported one another.
This anecdotal case is worth studying because of its complexities. It provides an opportunity for spiritual care practitioners to see the value of remaining hospitable in the midst of complex cases, moving the affected family from an emotional and/or spiritual crisis to a more constructive place where they can begin to plan effective
75 approaches to the new situation created by the crisis and make appropriate decisions about health care. Clinically trained spiritual care practitioners can move families forward by turning their unique skills in crisis care and counseling into a strategic helping opportunity, steering those in crisis away from maladaptive responses to that of more constructive ones.73 In many health care situations the crisis is temporary, stimulated by the situation at hand. If an individual and/or family unit needs more in- depth counseling, spiritual care practitioners can suggest they seek additional support through their family doctors, mental health services, private counseling services, local pastoral care services or employee assistance programs.
Spiritual care giving in cross-culture health care is a humbling and demanding task. It requires spiritual care practitioners to create a welcoming space within their own hearts for the terminally ill, their family members and health care professionals so that all those involved can freely express themselves even when the situation seems complicated. Those in crisis must find the confidence they need to move in and through this challenging time in their lives to experience hope and peace once again.
Complicated hospitality demands that spiritual care practitioners find a balance between receiving and confronting the terminally ill, their family members and health care professionals in difficult times. Facilitating spiritual healing and wholeness requires
73 Howard Clinebell, Basic Types of Pastoral Care & Counseling: Resources for the Ministry of Healing and Growth (Nashville: Abingdon Press, 1966), 188.
76 spiritual care practitioners to recognize and understand the spiritual issues that each party is facing. Praying their goodbyes74 for example, can be extremely difficult for some family members and/or the one who is dying. By guiding the dying and their family members through a therapeutic process, spiritual care practitioners can help them identify what is holding them back from saying their goodbyes. Some may find it too difficult, others may need to ask for forgiveness or give forgiveness. Ultimately, maintaining a balance in times of complicated hospitality is necessary if spiritual care practitioners are to create opportunities for nurturing healing and wholeness. This can be accomplished through spiritual care and counseling. Failure to do so can lead to poor
QOL for the terminally ill and high levels of stress and anxiety for health care professionals.
Receiving and confronting can seem like polar opposites in a spiritual care-giving rooted in hospitality. Christian spiritual care practitioners must remain in careful balance however, so they do not become agents of bland neutrality which can end up serving nobody in the long run. Yet, confrontation without receptivity can lead to an oppressive aggression which hurts everybody. The balance between receptivity and confrontation must be carried throughout the therapeutic process of crisis counseling. Spiritual care practitioners, therefore, must be diligent in focusing on the task at hand, moving all
74 “Praying Our Goodbyes” is a term that spiritual leader and author Joyce Rupp uses in her book “Praying Our Goodbyes: Understanding the spirituality of change in our lives”, of which she speaks to the many losses in our lives: jobs, homes, relationships, good health, illusions, self-importance and loved ones.
77 parties in a direction that will enable them to respond effectively to the situation while also increasing opportunities for improving QOL during end of life care.
(c) Ethics of Care
Given the changes in Canadian society, including Annapolis Valley, spiritual care practitioners need to keep a finger on the pulse of society so they can be instrumental in designing and implementing spiritual care programs inclusive in their understanding, concerns and methods for providing spiritual care. Spiritual care programs for example, must become more cross-cultural in their perspective, open to learning new ways of caring for the increasing number of patients who claim to be religious or spiritual or who have no affiliation with a religious organization or specific spirituality. Spiritual care practitioners must become more effective at integrating psychological and theological insights to promote spiritual wholeness and healing in cross-cultural care by incorporating what could be called an “ethics of care” into their practice. An ethics of care is fundamental to building meaningful and in depth relationships with the dying, including those whose beliefs and values may be different from our own. Carol Gilligan, provides an example of the concept of the ethics of care in the following:
This vision is illuminated by the actions of a woman physician who, seeing the loneliness of an old woman in the hospital, ‘would go out and buy her a root beer float and sit at her bedside just so there would be somebody there for her.’ The ideal of care is thus an activity of relationship, of seeing and responding to need, taking care of the world by sustaining the web of connection so that no one is left alone.75
75 Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Massachusetts: Harvard University Press, 1993), 62.
78 As human beings, we want to care and to be cared for, especially when we are feeling vulnerable. The ethics of care speaks about being in relationship with others so that no one is left alone. This is significant when caring for the Mi’kmaq because their world view speaks to the networks of relationships which are integral to their cultural psyche and spirituality. In the Mi’kmaq language everything and every person is spoken of in terms of being in relation with something or someone else.76 When First Nations people, such as the Mi’kmaq are separated from family and/or community, their spiritual and emotional well-being can be seriously compromised because this basic sense of relationship is lost. However, incorporating the ethics of care into hospitable spiritual care emphasizes the ideal of care as being in relationship.
The Gage Canadian Dictionary defines care as “a burden of thought; worry; watchful keeping; have a care; take care, be careful; take care of, and attend to or provide for.”77 This definition specifies different uses of care, but in the deepest human sense a basic common element is caring. To associate the word care with burden for example, may mean that I am fretting over world affairs or the Canadian economy.
Having said this, in Galatians 6:2 the Apostle Paul writes, “Bear one another’s burdens, and in this way you will fulfill the law of Christ.” Paul addresses many issues with the
Galatians’ community, including the responsibilities of Christians led by the Spirit. In
Galatians 6:2 he speaks to the corporate responsibility of carrying each other’s burdens.
76 Sable and Francis, 32.
77 Avis and Drysdale, 171.
79 In fact, “burdens” include all kinds of physical, emotional, mental, moral or spiritual burdens: living with a chronic or life threatening illness, the emotional and spiritual crisis that is created when a loved one hears the words, “You are going to die.” The list of burdens that can crush any human being at anytime, including spiritual care practitioners, seems endless. Spiritual care practitioners who work in cross-cultural health care settings are called to serve the dying, the sick, the injured, those who suffer from mental health issues or who sense a loss of culture, or family, or community, or spirituality. They need to be sensitive to the many burdens that patients might be carrying, especially the terminally ill. Christian spiritual care practitioners led by the
Spirit are called to “serve one another in love” (Gal 5:13) including carrying the other’s emotional and spiritual burdens.
Spiritual care practitioners can demonstrate that they care for the other as a whole person by embracing their beliefs and values, even when they are different from their own. Paul speaks of the significance of caring for the other and the need to extend hospitality to the other when he shares his hope for all groups to “welcome one another…as Christ has welcomed *them+”, (Rom 15:7). Paul focuses attention on the need to care when he writes to correct the abuses of the Lord’s Supper in Corinthians, namely the exclusion and dishonouring of certain believers. Paul also supports the notion of inclusivity when he insists that there are no second class citizens (1 Cor 11:17-
34). By the same token, Christian spiritual care practitioners who serve in cross-cultural health care settings are required to be inclusive, to “attend to or provide for” the dying in their totality as human beings. Christian spiritual care practitioners led by the Spirit
80 are charged with the responsibility of caring for and attending to the spiritual and cultural needs of the dying, including those whose beliefs and values maybe different from their own.
It is important to pay attention to the various uses of the word “care” because an essential element of caring is the relationship between the one who is caring and the one being cared for.78 Milton Mayeroff, author of On Caring, describes caring from the view point of the one who is caring: “To care for another, in the most significant sense, is to help him grow and actualize himself.”79 Mayeroff’s statement is crucial if we want to create a model of spiritual care-giving that is rooted in hospitality. He says the creation of a hospitable atmosphere and space is not a subtle invitation to adopt the lifestyle of the spiritual care practitioner: rather, it is an opportunity for the terminally ill to find their own.
Acts of caring are often motivated by concern about the welfare of others or when one feels the need to protect or enhance the care of another human being. The terminally ill represent one the most vulnerable groups in our society, and acts of caring are obviously important to their overall well-being. Failure to provide acts of caring can lead to poor QOL in cross-cultural health care settings. We have already noted that
Canada’s Aboriginal peoples, like the Mi’kmaq, experience significant health disparities
78 Nel Nodding, Caring: a feminine approach to ethics and moral education (Los Angeles: University of California Press, 1984), 9.
79 Milton Mayeroff. On Caring (New York: Harper & Row, 1971), 1.
81 and difference in accessing health care services. However, as an element of hospitality, acts of caring can contribute to better outcomes for end of life care and QOL for the
Mi’kmaq.
H.M. Chochinov claims in his article, “Health Care, health caring, and the culture of medicine,” that health care is readily talked about whereas health caring is never talked about. Health care refers to the delivery of evidence-based medicine and how it can be provided efficiently, equitably and cost-effectively. Moreover, it is designed to provide for the medical needs of patients---a designation that is primarily based on the specifics of a diagnosis and treatment. Chochinov also argues that the concept of health care forces patients to yield to the whims of a medical condition and to bend to the regulations and rigidity of the health care system.80
On the other hand, health caring is mindful that patients are people with feelings that matter. Those feelings almost always include a heightened sense of vulnerability, dependency, loss of control, which can be internally driven by the underlying condition or externally imposed (depending on the quality and tone of the health care encounter).
By applying the lens of health caring, Chochinov claims that the over all care of patients changes the tone of care because it acknowledges the personhood of patients. This can be accomplished by asking questions such as, “How might this make a person feel” or
“How does it feel to be kept waiting, examined, drawn on.” According to Chochinov,
80 H.M. Chochinov, “Health care, health caring, and the culture of medicine,” Current Oncology, 21, 5 (2014), e668-e669.
82 incorporating health caring into daily health care practices can create trust, open up opportunities for fuller patient disclosure and provide a more accurate assessment of the goals of care.81
When spiritual care practitioners engage in acts of caring, they need to have reasons for their action or inaction in any given situation to ensure they are acting faithfully on behalf of the one who is being cared for. This does not mean that spiritual care practitioners need a uniform method for responding to a given situation. In fact, some may have preferred alternatives which enable them to present their most genuine self in acts of caring. It is important, however, that the course of action creates opportunities for better QOL outcomes by attending to the needs of the one who is dying.
Hospice palliative care is a specialized care and within that spiritual care is a specialized kind of care. Spiritual care practitioners, in their role as valued members of the palliative care team, must engage in a standard of care that will promote QOL at end of life. This begins with a willingness and ability to meet the diverse needs of the terminally ill and their family members: attending to the emotional, psychological, cultural and spiritual needs of the one who is dying and their family members according to their needs, values, beliefs and culture. It is true that spiritual care practitioners cannot always attend to the spiritual needs of every dying person and their family members, especially when serving in a diverse community and cross-cultural health care
81 Chochinov, e668-669.
83 setting. But they can do their best to ensure each person’s spiritual and cultural needs are attended to by calling on the appropriate community clergy and/or spiritual leader or family member in the community.
In addition to this support, clinically trained spiritual care practitioners can continue to assist in maintaining psychological and theological comfort through supportive and therapeutic counseling. This is necessary for four key reasons: first, to ensure that the spiritual and cultural needs of the one who is dying and/or family members is being attended to: second, to assist in developing a health care plan focusing on the terminally ill in their totality as human beings: third, to provide additional support to the health care team as they strive to meet the various needs of the one who is dying: fourth, to ensure the one who is dying and their family members are moving in and through the grieving process in a way that will enable the one who is dying to die in peace.
The course of action for a standard of care may demand spiritual care practitioners to go beyond bedside care. Some may need to start a conversation with leaders from both the health care authority and the community. In AVDHA for example, efforts are being made to open up new communication channels with the leadership from the Mi’kmaw community so that two cultures of care can work together. The issue of burning Sweet Grass in health care settings, for example, can create many challenges for both health care authorities and the Mi’kmaq who are trying to support their loved ones. The former are bound by fire regulations, infectious disease control guidelines and
84 rules that require them to provide quality of air for all patients and staff. Meanwhile, the latter want to support their loved ones emotionally and spiritually through traditional rituals.
The question that arises then is, how do two cultures of care work together to meet the spiritual and cultural needs of the one who is dying without comprising other patients or staff? Further, how can they honour those who are dying and their community while also supporting the health care facility in its attempt to meet its obligations to its regulatory bodies?
One of the first steps in answering these questions is to apply one of the major ingredients of caring: knowledge. Ethics of care involves more than a good intention to care or warm regard.82 To care for and respond to the needs of the Mi’kmaq, spiritual care practitioners and health care authorities need to know who they are as a People and community, what their needs are and what the community understands to be conducive to their spiritual growth. They also need to know what their own limitations and powers are within this relationship. At the same time, First Nations people and their communities need to know the needs of the health care team and the health authority.
When the two cultures of care are able to share knowledge, this increases opportunities for understanding and the potential for collaboration in caring for the one who is dying and their family members.
82 Mayeroff, 13.
85 Knowingly or unknowingly, the ethics of care has been played out in some areas of Canada where the local health care authority and First Nations communities have been able to work together in embracing Ceremonial rituals: the burning of the Sweet
Grass, for example. Some have agreed that the Sweet Grass can be burned outside the hospital building and the ashes taken to the patient’s bedside. In Ontario, a Native hut has been built on the grounds of one hospital to perform Traditional Ceremonies for the sick or injured or terminally ill. Both Native and non-Native patients are welcomed to attend. The Native hut has benefitted all cultures of care. It has honoured the patient and their community by providing a familiar and comforting spiritual and cultural setting. As a result, First Nations people have felt welcomed and respected by the health care setting. The hut also symbolizes the respect that the First Nations community has for the local health authority and its need to meet its obligations to its regulatory bodies. By working respectfully and collaboratively, both parties made a significance difference to the QOL for First Nations people.
The ethics of care played a significant role in this situation because it allowed the two cultures of care to deepen their relationship by sharing their ideas and knowledge.
The act of sharing allowed each participatory group to develop a new respect for the other’s perspective. Furthermore, each party obtained a clearer sense of what is relevant and irrelevant in meeting the needs of First Nations people and their overall well-being. The application of an ethics of care also demonstrated to the First Nations people that they were being treated in their entirety as human beings within the health care system.
86 Ethics of care can sometimes move spiritual care practitioners away from bedside caring to the political arena. At such time, extra care must be taken so that the intention of caring for the dying does not fade away. The danger is that when individuals come together to discuss the perceived needs of an individual or another group, the focus can sometimes change from direct patient care to abstract problem solving. As a result, caring for the one who is dying in their totality can be lost.
Caring for the dying in cross-cultural settings requires spiritual care practitioners to step, at least partially, outside their frame of reference and into the frame of others.
This does not mean they need to let go of their own beliefs and value system. Rather, in caring for the dying, spiritual care practitioners need to embrace others in their wholeness. In other words, to be a good host in their relationship with the dying, spiritual care practitioners must realize that the extension of spiritual hospitality is about being inclusive, not exclusive. It is about creating a welcoming space for a variety of human experiences. Their way is not the only way to experience or express spirituality or spiritual growth or a spiritual resource: God, for example. It is not unusual for the terminally ill (depending on their culture and/or life experiences) to experience
God or other spiritual resources in many different ways.
Within my Christian tradition, it is believed God cannot be cornered or shaped into a specific idea or concept or opinion or conviction. God cannot be defined by a specific feeling or emotion or pitted against neighbors. Like God, the spiritual and cultural experiences of the dying cannot be shaped into the specific ideas or concepts or
87 opinions or convictions of the spiritual care practitioner. They are unique to the individual. Milton Mayeroff claims:
To care for another person, I must be able to understand him and his world as if I were inside it. I must be able to see, as it were, with his eyes what his world is like to him and how he sees himself. Instead of merely looking at him in a detached way from outside, as if he were a specimen, I must be able to be with him in his world…what life is like for him, what he is striving to be, and what he requires to grow.83
By implementing an ethics of care into the model of hospitality in spiritual care-giving, spiritual care practitioners have a greater chance of showing the Mi’kmaq and others that they are not alone in their journeys. Through acts of caring spiritual care practitioners can tell the Mi’kmaq they are worthy of being listened to as they find meaning in their lives.
It is not uncommon for spiritual care practitioners to be identified as the
“outsider” in relationships with those from a different culture. In these situations, spiritual care practitioners need to let the dying know that they are truly cared for. If the one who is being cared for senses the relationship is not genuine, the relationship has the potential of remaining superficial rather than becoming deep and meaningful. It is only when the terminally ill feel they can trust the spiritual care practitioner that they will open themselves up and allow the spiritual care practitioner to reach out to them.
This is significant to the therapeutic process: when the terminally ill are able to open themselves up, they give themselves a chance to see and understand who they are as a
83 Mayeroff, 41-42.
88 whole person, and how dying might complete their earthly life.
The spiritual care practitioner can use many different ways to let the dying know they are cared for. One of the first and most significant ways is to receive the terminally ill in their totality84. In doing so the spiritual care practitioner is acknowledging and honouring alternative perspectives. Moreover, by receiving the other, she creates the possibility of a personal motivational shift. This shift can lead her to a place where her motivational energy becomes one of serving the terminally ill as opposed to fulfilling a professional obligation.85
There is no doubt that many spiritual care practitioners would like to be thought of by the dying as caring. Therefore, spiritual care practitioners must demonstrate they have genuine affection and regard for the other; they are not simply following guidelines or rules of care. When spiritual care practitioners are caught in a web of rule- orientated responses, the chance of building a trusting relationship is reduced. Offering a ritual in the midst of the dying telling their story as opposed to listening may suggest the spiritual care practitioner is more interested in fulfilling official priestly duties than in active listening. It may also indicate she is trying to avoid listening to the dying as they talk about their death and dying. If the terminally ill sense the spiritual care practitioner is not interested there is a good chance they will shut down, shrinking the
84 Dame Cecily Saunders introduced the notion that palliative patients needed to be treated in their “totality”: physical, emotional, social and spiritual dimensions of distress.
85 Nodding, 30-33.
89 communication between them and causing increased levels of frustration or anxiety or isolation or loneliness. Their QOL may be jeopardized because they will not be given every opportunity to deal with their spiritual, psychological and emotional issues.
Unfinished business can cause depression or feelings of restlessness or increased suicidal tendencies.
An ethics of care can play a significant role in creating a hospitable atmosphere in health care settings because the behavior expected in caring is not shaped by a narrow and rigidly set of principles. Rather, acts of caring express a genuine regard for being in relationship with the terminally ill: their pain and sorrow, joys and concerns, ups and downs, high and lows, spirituality and culture all shape them into the person they have become and hope to become as they move through the dying process.
Although spiritual care practitioners do not receive a prescription as to how they must behave with those whose beliefs and values may be different from their own, in serving the dying in cross-cultural settings, they can be educated as to the kind of questions they might ask the terminally ill and/or their family members so that they can attend to their spiritual and cultural needs. By putting judgment to the side and replacing it with a commitment to serve the dying holistically, spiritual care practitioners will assist the terminally ill to die with dignity and internal peace.
Incorporating an ethics of care into a model of spiritual care-giving based on hospitality is both reasonable and important in cross-cultural care: it places morality front and centre in the pre-act consciousness of the spiritual care practitioner. An ethics
90 of care is a fundamental and directional virtue of relationships, practices and actions in health care,86 including spiritual care. Psychologist Carol Gilligan says that “women speak in a different voice”, a voice neglected by traditional ethical theory. She has identified two modes of moral thinking: an ethic of care and an ethic of rights and justice. An ethics of care responds to a network of needs, care and prevention of harm deeply associated with an ethics of rights and justice. It gives meaning to the words
“patient-centered care,” treating the dying at the core of their being.
Of course some precautions must be taken when incorporating an ethics of care into spiritual care-giving. There is a danger of promoting paternalism. This would be disempowering, as opposed to empowering one of the most vulnerable groups of people in our society and in the health care system. The relationship between the spiritual care practitioner and the one who is dying would no longer be reciprocal: the former would be trapped in the role of permanent care provider, with an ethics that is solely rooted in an ability to care. Failure to incorporate other virtues, like an ethics of rights and justice, into the practice of spiritual care-giving, can either lead to a distorted hospitality or a failure to practice it all together. The blending of care and justice needs to be considered in the practice of every day spiritual care-giving, including in cross- cultural health care settings because without justice, issues such as racism and neglect may prevail. The oppressive experiences of First Nations people in the Canadian health care system are a case in point. Good health care and better outcomes for QOL involve
86 Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2009), 36.
91 insight into the needs of the terminally ill, including perceived others like the Mi’kmaq.
Considerate attentiveness to their circumstances can be derived from a model of spiritual care-giving shaped by hospitality and two key virtues of hospitality: care and justice.
In the following chapters, the thesis turns to a specific case study and proposes a spiritual care-giving model for end of life that can be used within that setting.
Specifically, it defines a model based on hospitality and applies it to one Mi’kmaq community served by Annapolis Valley District Health Authority (AVDHA). The model has two overarching but interlinked purposes: first, to promote and increase better outcomes of quality of life at end of life care for Indigenous people living in Nova Scotia; second, to give Christian spiritual care practitioners an opportunity to revisit the ancient tradition of welcoming strangers. One expert argues, “The more opportunity that care providers have to build meaningful relationships with persons approaching the end of this life, particularly with persons whose culture differs from one’s own, the greater the likelihood that persons will receive comprehensive and compassionate care.”87 Chapter
3 addresses the research methodology for this project and cites some of the research findings related to the spiritual and cultural needs of the Mi’kmaq during end of life care.
87 Johnston, 1.
92 Chapter 3: Research Method and Findings
3.1 Introduction
Recent research into end-of-life care suggests that cultural beliefs and practices are particularly influential, but little work has been done to consider the traditional beliefs and practices of Aboriginal peoples in Canada, especially at the local level. This is unfortunate, as such consideration is necessary if we are to appreciate current health issues affecting Aboriginal people and to ensure the delivery of spiritually and culturally appropriate care at end of life. Local health authorities must assume a strong leadership role in QOL at end-of-life: although we live in an era of globalization, we must not lose sight of the fact that people live their lives at the local level of family and communities.
Moreover, it is at the local level that many health determinants have the greatest impact.88
The various Aboriginal people of Canada are diverse culturally, spiritually, socially, historically, making it is necessary to examine each community in its own right to establish its unique spiritual and cultural needs. For this research, a qualitative pilot research project was designed and conducted for one First Nations community: Bear
River First Nations, Bear River, Nova Scotia.
This chapter begins with a brief history of the Mi’kmaq followed by a discussion of life today at Bear River First Nations including structures of, and accessibility to, the
88 Waldram, Aboriginal Health in Canada, 23.
93 health care system in Nova Scotia. Section 3.3 speaks to the study background and is followed by Section 3.4 where methodology, including the reasons for using grounded theory in ethnography is detailed. Section 3.5 addresses the critical theme of spiritual hospitality as it relates to grounded theory research, while Section 3.6 looks at the seven steps used in “Preparing the Way” for the project and covers the various stages of data collection, data analysis and interpretation. Section 3.7 will articulate the lessons learned.
3.2 A Brief History of the Mi’kmaq
The Mi’kmaw are an Algonquian people: the term Mi’kmaq comes from nikmak meaning “my kin-friends.” According to archaeological findings at the Debert and Red
Bank sites in Nova Scotia, the Mi’kmaq have been living in the land now called Atlantic
Canada for over 10,000 years.89 They are the founding people of Nova Scotia and remain the predominant Aboriginal group in the province. Before European contact their territory stretched from the southern portions of the Gaspe Peninsula of the province of
Quebec eastward to most of modern-day New Brunswick, all of Nova Scotia and Prince
Edward Island, and in New England in the United States. The area was divided into seven smaller territories and was known as Mi’kma’ki. In Nova Scotia today, there are 13
Mi’kmaq First Nations with community population ranging from 240 in Annapolis Valley to 3,988 in Eskasoni First Nations. In 2012 there were 13,518 registered Mi’kmaq in
89 Angela Robinson, Ta’n Teli-ktlamsitasit (Ways of Believing): Mi’kmaw Religion in Eskasoni, Nova Scotia, (Toronto: Pearson Education Canada Inc., 2005), 19.
94 Nova Scotia and 60,928 in Atlantic Canada.90 According to the office of Aboriginal Affairs of the Government of Nova Scotia there are 24,175 people of Aboriginal identity in Nova
Scotia, an increase of 42% since 2001. This population makes up 2.7% of the total population of Nova Scotia: 14,958 Status Indians are registered in Nova Scotia with
9,773 living on reserves. The majority of First Nations people in Nova Scotia are from the
Mi’kmaq Nation. The First Nation population is much younger then the general population with a median age of 25.4 versus 41.6 for the total population.91
Bear River First Nation (BRFN), the principal research site for this study, is a
Mi’kmaq First Nation. It is also known as Li’sitkuk Band and lies in the ancient district of
Kespukwitk, a part of the Mi’kmaq Nation. In relation to Atlantic Canada, Bear River First
Nation is located in both Annapolis County and Digby County, and lies adjacent to the village of Bear River, Nova Scotia. Archaeological evidence suggests the community has existed in the area for 3,000 to 4,000 years. The registered population living on the
BRFN in 2006 was 101, a 13.5 % increase since 2001. In 2013, Aboriginal Affairs and
Northern Development reported the registered population as 322. The number registered on the reserve is 105 and off reserve is 217.92 The median age is 35.5 with
90 Office of Aboriginal Affairs, “Aboriginal People in Nova Scotia”, Government of Nova Scotia, May 2013. Accessed October 29, 2014 http://www.gov.ns.ca/abor/aboriginal-people/demographics
91 Office of Aboriginal Affairs. “Aboriginal People in Nova Scotia”. Government of Nova Scotia, May 2013. Accessed October 28, 2014. http://www.gov.ns.ca/abor/aborginal-people/demographics/
92 Government of Canada, Aboriginal Affairs and Northern Development Canada, Indian Registry System, December 31, 2012, Canada.ca
95 81.0% of the population aged 15 and over.93 The average age of BRFN is higher than its sister communities and it has the largest percentage over 15 years of age. It is possible, therefore, that they have a higher need for accessing palliative services, making it an appropriate study site.
Historically, they were a semi-nomadic people, canoe builders who used their craft for fishing and hunting porpoise in Annapolis Basin and the Bay of Fundy. After
European contact, porpoise oil was sold as machine lubricant into the early 20th century.94 For many Mi’kmaq, hunting and fishing practices were based on the principle of netukulim, “we hunt in partnership” a concept acknowledging that the practice of hunting and fishing is more than a means of economic stability. It speaks to an important value in Mi’kmaq culture: hospitality and one of its key principals---reciprocal relationships. The immediate reciprocal relationship in this situation is between human beings and the environment. Having said this, the Mi’kmaq believe there is a reciprocal environmental relationship that exists among all creatures, and this relationship supports the well-being of all. In other words, human beings are not the centre of the world order but part of a web of life in which plants, animals, humans and the four elements (earth, air, fire and water) are interdependent.95 The principle of netukulim
93 Statistics Canada, Community Profile 2006 Census, Government of Canada, May, 2013. Accessed October 28, 2014. http://www12.statcan.gc.ca/census/recensement/2006/dp-pd/prof/92- 591/details/page/cfm
94 Bear River First Nations Official Website, Bear River, Nova Scotia, Canada, April 19, 2013. Accessed October 28, 2014. http://www.bearriverfirstnation.ca/Bear_River_First_Nation/Our_History.html
95 Robinson, 20.
96 affirms that reciprocity, a key element of hospitality, reaches far and wide in the
Mi’kmaq culture.
As a traditionally peaceful and welcoming people, Li’sitkuk would have been the group greeting Pierre Dugua, Sieur de Mons, Samuel de Champlain, and others who settled in Port Royal in 1605. At the time their Sakmow or chief was Henri Membertou,
Grand Chief of the Mi’kmaq Nation. From the time of their first contact with European settlers, there was a slow yet dramatic change in Mi’kmaq culture. When the Mi’kmaq in Atlantic Canada became partners with French settlers in the fur trade for example, their traditional subsistence strategies and social organization began to change.96
The decline of the fur trade, the British occupation in the 18th century and the initiation of the colonialist project resulted in more dramatic changes in Mi’kmaq culture. The Mi’kmaq lost control of their traditional lands and were prohibited from accessing their resources. Between 1725 and 1779, the Mi’kmaq and the British Crown settled on a set of treaties recognizing specific rights and privileges for the Mi’kmaq, including entitlement to land, but by 1749 when Halifax was established, the Mi’kmaq were stripped of their land and relocated to wilderness areas deemed unsuitable for development by European settlers. By the turn of the 19th century the Mi’kmaq were denied titles to land and were granted “licenses of occupation during pleasure” on reserves: land that was owned by the Crown. The stripping of their traditional lands, resources and the creation of reserve lands led to denigration of the Mi’kmaq who in
96 Robinson, 23.
97 order to survive, resorted to making baskets, axe-handles, shingles and staves. These were easily sold to the European market but this alone could not sustain the Mi’kmaq.
They experienced widespread and continuous impoverishment for the first time in their lives.97
Today, BRFN has a vision for a food and livelihood fishery deeply rooted in their long historical relationship with the natural world. It is premised on respect and self- sufficiency to avoid hunger and sickness for all. Several stumbling blocks have prevented the community from fulfilling their dreams, however. The commoditization and privatization at the commercial fishery sector for example, has left little room for sustainable practice and knowledge at the community level. Ongoing issues related to treaty rights have also prevented the community from moving forward. Despite these challenges BRFN continues to pursue its vision of a small scale food and livelihood fishery by aligning itself with other non-Indigenous fishermen impacted by privatization and commoditization.98
In Nova Scotia, responsibility for on-reserve education has been granted to the
Mi’kmaq in a self-government agreement. BRFN has had local control of education for over five years. Their school (Muin Sipu) is on the main road leading into the community. There are 22 children registered from kindergarten to grade eight. There
97 Robinson, 24-25.
98 Pictou, Sherry, “Defenders of the Land”, May 25, 2013. Accessed October 28, 2014. http://www.defendersoftheland.org/bear_river
98 are three full-time teachers, with another one part-time. Leaders in the education system recognize Mi’kmaq language as an important part of the curriculum. Leaders and educators hope that Mi’kmaq language lessons for adults will be provided via satellite.99
Education levels are lower than in the general population: 27% of those aged 25-
64 have not completed high school in comparison to 19% in the general population; 12% of those aged 25-64 have a university degree compared to 20% in the general population.100 Statistics Canada reports 30 people aged 15 and over from BRFN do not hold a certificate, diploma or degree; 15 persons aged 15 and over have a high school certificate or equivalent: 15 have completed an apprenticeship or trades certificate or diploma and 15 have a college, CEGEP or other non-university certificate or diploma.
When Canada was formally established as a nation, the federal government assumed all administrative responsibilities for the reserves, including health and welfare. Today, the federal government has responsibility for Aboriginal peoples, but the delivery of health care services has devolved to provincial governments. Gaps and differences in services funded by each jurisdiction create challenges for Aboriginal people. Supportive and palliative care for example, is not a core service of Indian and
Northern Affairs of Canada (INAC), even though INAC has been responsible for ensuring
99 Bear River First Nation Website, May, 2013. Accessed October 28, 2014. http://www.kinu.ns.ca/excellence/bearriver.html
100 Office of Aboriginal Affairs, Government of Nova Scotia.
99 that the Government of Canada meets its obligations including for end of life care.101
Most Mi’kmaq communities have community health care nurse(s) who work in the community to provide care to individuals and families. Some communities have health centers where the nurse(s) are stationed. BRFN has one nurse, a visiting physician and a Health Care Centre. The AVDHA palliative care team also has two palliative care nurses, a spiritual care practitioner, one social worker and two doctors who can provide additional end-of-life support to individuals, families and the community. The palliative care team supports people in hospital and in their homes. As a provincially funded palliative care program, its main purpose is to assist in managing pain, and other symptoms. The palliative care team believes patients need to be treated from a holistic perspective; therefore, the team has taken on the responsibility of ensuring patients and their family members have the social, cultural and spiritual resources they need to get through challenging times. This is the reason for involvement of the spiritual care practitioner and social workers.
Some supportive and palliative care needs for First Nations are also met through the INAC adult care program. Health Canada and INAC worked together to develop a
National Framework on Home Care for First Nations and Inuit communities. This system of service delivery addresses holistic, social, and personal care needs of individuals who do not have, or who have lost, some capacity for self-care. INAC may pay for laundry, meals and housekeeping. Personal care can include pain management, spiritual support
101 Johnston, 2.
100 and comfort measures, familial support and care planning related to disease and putting personal affairs in order.102
Chapter 2 cites a provincial government report declaring hospital services in
Nova Scotia to be poorly responsive to Aboriginal healing practices. As this and other reports suggest, Canada’s indigenous people face disparities in accessing end-of-life care, quality of care, and better health care out comes. Further division in equal access stems from provider biases, lack of continuity of care, health care system barriers and limited interpretation services. Jurisdictional issues also affect access, continuity and appropriate care for the Mi’kmaq. According to author and researcher Dr. Grace
Johnston, many of these issues are related to the ongoing impact of the residential school system, which did not value Mi’kmaq ways, created intergenerational trauma, and disrupted culture, language, traditions and history. “This parallels a bias that has been reported for some primary healthcare providers who appear disrespectful and have a poor knowledge or understanding of First Nations culture and misconceptions around ‘compliance’.”103 Her findings speak to the need for best health care practices, including spiritual care at the local level of the health care system so that the individual, family and community who require care have the best possible care during end of life care. Johnston suggests the use of a holistic health approach as a bridge for
102 Johnston, 2-3.
103 Johnston, 3.
101 understanding such indigenous values such as the interconnectedness of the physical, social and spiritual dimensions of self and the impact this has on health decisions.
By acknowledging spirituality and culture as a part of the healing process, health care providers have a better chance of understanding health choices and preferences.
Further, comprehending that the integration of spirit is a part of healing and can occur through the interrelationships of self, family and community can assist spiritual care practitioners, and other health care providers to incorporate spiritual and cultural needs into the health care plan of the terminally ill. Despite cultural changes, discrimination, and abuse, the Mi’kmaq have resisted assimilation and continue to have a distinct identity as a people. Their view of health is holistic and deeply connected with spirituality. Healing is associated with restoring harmony and connections.
Ellingsen (1989) investigated the concept of health among Mi’kmaq women and found participants believed health is attained spiritually by linking the past with a present context in which unity or disunity is being experienced. More recently, Johnston
(2012) examined the provision of supportive and palliative care for indigenous people in
Nova Scotia, to further our understanding and thereby to improve cultural competency.
This research raised awareness of the need to more broadly understand and incorporate an indigenous cultural context into supportive and palliative care. This pilot research project expands on previous research by focusing on the rich beliefs, rituals and practical applications for spiritual care and comfort at the local level that emerge from
102 an understanding of Mi’kmaq spirituality, religion and culture. It creates a model of spiritual care-giving based on spiritual hospitality.
3.3 Study Background
It is not uncommon for professionally trained spiritual care practitioners and health care professionals serving in the Canadian health care system to interact with patients facing end of life care whose culture, spiritual and religious beliefs are different from their own. The quest for an authentic Christian practice of spiritual care-giving in end-of-life care demands that spiritual care practitioners find the means to offer hope, courage and confidence to people with differing spiritual perspectives and practices.
Failure to recognize and/or embrace others as human beings can have a negative impact on health care. The following case study exemplifies this point.
Ms. Blessing104 was a 32 year old woman from Northern Canada, admitted to an urban hospital. She was diagnosed with a life threatening disease, and was living with dying. After sharing her spiritual experience with a health care professional, Ms. Blessing was referred to psychiatry for consultation. Sadly, this is not an unusual experience for
First Nations people, especially when they have shared a spiritual experience that is deeply rooted in Native spirituality. As one of the caregivers for Ms. Blessing, I witnessed firsthand the negative impact this situation had on the patient. As I began to
104 Ms. Blessing is a fictitious name, not to be associated with any one person or setting. This case study comes from the writer’s own experience in a clinical setting as an intern chaplain.
103 reflect on this case, I realized that Ms. Blessing had not been welcomed in her totality105 as a human being: an injustice had been committed because she and her needs were
‘grossly misunderstood’. This awakening became the motivation for the current researcher. Patients/family members and staff must feel welcomed and embraced in their wholeness, as a whole human being, including the dying.
Like other regions in Canada, Annapolis Valley Nova Scotia and the Annapolis
Valley District Health Authority (AVDHA) is culturally, spiritually and religiously diverse.
Understanding how cultural, spiritual and religious differences may affect the manner in which the terminally ill may choose to live with dying and the process of dying will help spiritual care practitioners move beyond assumptions of spiritual care treatment to design spiritual care programs, intervention, and resources that accept and embrace the dying in their totality.
Recognizing the “Other”106 is particularly urgent as recent data show one-third of patients admitted to VRH identify their religious affiliation as “Other” (Appendix III).
More than 50% of young people between the ages of 16 to 30 who give birth in the hospital identify their religious code as none.
Since spirituality is significant in dealing with chronic illness, living with dying,
105 Dr. Cecily Saunders, leading expert in palliative care and founder of St. Christopher’s Hospice in the UK, believed in treating terminally ill patients in their totality: physical, emotional, spiritual and psychological.
106 “Other” is defined as those whose religious code upon admission into hospital has been identified as First Nation, Muslim, Jewish, none, other and unknown.
104 actively dying, and bereavement, this pilot research project focused on the spiritual needs at end of life care for the Mi’kmaq who is admitted into the hospital system. A literature review indicates increased research into end of life care for Aboriginal people across Canada, but research on the spiritual, religious and cultural needs specific to the
Mi’kmaq, especially at the local level in Nova Scotia, is limited. Some literature notes the use of beliefs, values and rituals during end of life care, without speaking specifically to the virtue of hospitality and its role in a model for professionally trained spiritual care practitioners serving in palliative cross-cultural health care settings.
This pilot research project will provide new insights and practical applications supportive of spiritual and cultural needs of the Mi’kmaq at end of life care. It is anticipated that the results will be instrumental in moving the current Spiritual Care
Program at Valley Regional Hospital forward, so that it can become more inclusive and welcoming by developing a model of spiritual care-giving rooted in spiritual hospitality.
The analysis and results will also lead to the development of practical applications promoting hospitable spiritual care-giving practices in cross-cultural health care settings, as best practices for better QOL and outcomes at end of life care.
3.4 Method
Qualitative research has its roots in cultural anthropology and American sociology (Kirk and Miller, 1986). It has recently been adopted by educational researchers (Borg and Gall, 1989). The intent of qualitative research is to understand a particular social situation, event, role, group or interaction (Locke, Spirduso, and
105 Silverman, 1987). This research project was guided by qualitative research, namely the combination of Ethnography (D.M. Fetterman, 1989) and Grounded Research Theory
(Kathy Charmaz, 2006). Grounded theory in ethnography allowed the current researcher, as a novice, to apply some very basic procedures. At the same time, it provided strategies for conducting the research on the principal site, performing focus interviews in a manner that would honour the Mi’kmaq Way, and stay close to the data.
Grounded theory in ethnography provided a logical and consistent set of data collection and analytical procedures aimed at developing a theory.
(a) Using Grounded Theory in Ethnography
Ethnography means recording the life of a particular group. It involves sustained participation and observation in their milieu, community, or social world using documents, diagrams, photographs, formal interviews and questionnaires to consider various aspects of life. The heart of this project was the exploration of spiritual and cultural care at end of life; therefore, the focus was limited to one aspect of daily life within one Mi’kmaq community, Bear River First Nations. As a result, it involved the description and interpretation of a small segment of their culture and system. This enabled me, as researcher, to gain knowledge of the multiple dimensions involved in spiritual and cultural care at end of life.
The application of grounded theory in ethnography allowed me to work with the
Mi’kmaq in their community and within the comfort of their own social world. This invited them to participate in a manner honouring their traditional ways. By the same
106 token, as researcher, I made every effort to respect Mi’kmaq traditions: conducting the focus interview within the tradition of a Talking Circle, for example. By engaging in this methodology I was able to work from the ground up, building relationships and remaining open. I worked with the community in exploring, planning and performing the research and conducted fieldwork using various modes of communication (one-to- one, one to a group, e-mail) and interaction (Summer Gathering).
The research participants were able to invite me, as the researcher, into a piece of their world through their acts of hospitality, and willingness to share their personal and collective stories. They allowed me to see some special events within their world at the Summer Gathering at Stone Bear, for example, where they prepared a community meal. Other activities included Story Telling107 where they told a story of their people using giant size puppets played by community members.
Grounded theory methods also provided a useful manner for data gathering and a set of inductive strategies for analyzing data. Data gathering included observation and intensive interviewing; namely focus group interviewing. Intensive interviewing invited participants to describe and reflect upon their experiences in ways that seldom occur in everyday life. For example, a participant in Talking Circle A (June 2012) told me that no one had ever come to their community before to ask them what their spiritual and
107 I have deliberately capitalized certain rituals out of respect for the Mi’kmaq Way. Some Elders have taught me that these words are sacred and need to be emphasized as such by capitalizing on them. I have also been taught by some Elders that when Aboriginal people refer to “my People” the word People is capitalized out of respect.
107 cultural needs were for end of life care. Intensive interviewing allowed participants to interpret their own life experiences and to share their beliefs and values on the topic. At the same time, as interviewer I was able to listen and focus on the topic and observe with intensity. I could explore the topic at hand by inviting the participants to respond to open ended and probing questions.
In addition, using methods of grounded theory, I added systematic checks into both data collection and analysis. As researcher I could go back to the data and forward into the analysis, thus avoiding some of the pitfalls of ethnography: lengthy unfocused forays into the field setting and/or superficial data collection. One of the shortfalls to the project, however, was the time allotted to conduct the research. Work and study constraints did not give me time to go back to the field to gather further data or to refine emerging themes. Since this pilot research project was also a partial requirement for doctoral studies time constraints were dictated by required datelines. This work merits a more detailed research project with appropriate time frames.
Importantly, grounded theory in ethnography provides a greater opportunity for the cultural interpretation to be from a holistic perspective; contextualized, emic108, multiple realities and nonjudgmental views of reality. Its purposeful intention of avoiding any possibility of emotional, spiritual or cultural harm to the research participants and/or their community is also eminently suitable for this type of research.
108 The emic approach investigates how local people think, how they perceive and categorize the world, their rules for behavior, what has meaning for them, and how they imagine and explain things.
108 Furthermore, it has underlining principles of spiritual hospitality. Further discussion of this topic appears in the next section.
Sadly, some research methods and their results have been disrespectful of
Aboriginal people. According to Aboriginal leaders certain researchers have painted pictures of them that misrepresent their culture and who they are as a people. It is important therefore, for researchers to consider alternative ways of asking questions and conducting research, especially in cross-cultural settings. I chose grounded theory in ethnography because it provides opportunities for participants to participate in the planning of the research project. Further, it is open and flexible: data collection can be conducted in a fashion that will honour any given culture, including the Mi’kmaq Way.
Grounded theory methods provided systematic procedures for analyzing the rich data. It also allowed the researcher to conduct qualitative research efficiently and effectively by helping to structure and organize the data gathering and analysis. Some distinguishing characteristics include: involvement in data collection, various phases of analysis, creating analytical codes and categories developed from the data and theory construction. Grounded theory methods offered the ability to check, refine and develop ideas and intuitions about the data such as discovering the underlying theme of spiritual hospitality. It allowed me as researcher, to stay close to the data and to apply principles of spiritual hospitality to the data collection and analysis.
3.5 Theme of Spiritual Hospitality in Grounded Theory Research
Grounded theory in ethnography is unique, because some key principles of spiritual
109 hospitality are inherent in its methodology and practical work. For example, it promotes a holistic and non-judgmental approach to research. In addition, researchers must seek to understand, appreciate and embrace others in their wholeness and richness. They are expected to create pictures that are respectful, truthful and thoughtful pictures of the people and/or community under study.
In exploring the deeper meaning of spiritual hospitality it is possible to see that the theme of hospitality and some of its principles are integrated into grounded theory in ethnography. This discovery is significant: incorporating the key principles of spiritual hospitality into research methodologies raises the ethical standards, credibility and reliability of the overall research project. It demonstrates that the boundaries for incorporating spiritual hospitality into our daily lives are limitless.
3.6 Preparing the Way
Step 1: Learning about Aboriginal People in Canada
Since the fieldwork for this study required stepping into a different culture, the preparation began ten years ago. The first step was learning about the history and traditions of Aboriginal people in Canada. This was accomplished through literature research and lessons learned from the Elders. The learning process began with a workshop on Native spirituality, healing and residential schools. It was sponsored by the
Manitoba Conference of the United Church of Canada, at the annual conference in
110 Brandon, Manitoba, 2002. Following this workshop I sharpened my research focus to consider Mi’kmaq.
Like the Hebrew tribes of Ancient Israel, the Mi’kmaq are an oral society. It has been difficult therefore, to find written work by their own people. In the last ten years some Mi’kmaq Elders and leaders have written books on their history and culture. I gathered many of these for my personal library. This work put me in touch with Shawn
Wilson (Canadian Cree), a well respected international Indigenous researcher and author. Since Shawn lives in Australia, communication has been through the internet. I attended two Pow Wows at Pictou Landing First Nations, as well as the United Church’s official apology (2009) to the Mi’kmaq of Pictou Landing First Nations for its role in residential schools. In addition, a healing and relationship building session held at
Tatamagouche Centre, Tatamagouche, Nova Scotia (2008) was led by several Mi’kmaq
Spiritual Leaders, including Catherine Martin a well known author, award winning film maker, Drummer109 and Spiritual Leader.
Further knowledge and education came from several radio broadcasts and programming hosted by the Canadian Broadcasting Corporation (CBC radio). Recent programming included “Aboriginal Day,” fall 2013; “Mi’kmaq language key to cultural identity,” October 21, 2013; “Albino Moose to be honoured in Mi’kmaq Ceremony,”
October 9, 2013; “Mi’kmaq traditional Canoe Trip with Counselor Caroline Potter, Bear
River First Nation,” fall 2013, and several other programs since the summer of 2010.
109 The capitalization of Drummer and Drumming is deliberate, out of respect for the tradition.
111 Connecting to various Aboriginal web sites on the internet and web pages for various
Mi’kmaq communities in Atlantic Canada was also instrumental. The website for Bear
River First Nation for example, has proven to be very fruitful to this pilot research project because it provided knowledge of their past history and current activities in the community.
Step 2: Building Relationships
The next step in this process was building relationship with Aboriginal leaders and their communities, including the Mi’kmaq in the Maritimes. Building relationships with
Aboriginal people in the Maritimes began in 2006. Since this time I have visited both
First Nations and Inuit people in their homes and communities (Nova Scotia and Prince
Edward Island). Telephone contact and Internet access also enabled relationships with
Aboriginal leaders in New Brunswick. Relationships were maintained and strengthened through personal contact and the Internet. Elders from Nova Scotia helped me connect with Elders in other provinces and/or First Nations communities.
The first contact with Bear River First Nations began in August, 2009. I contacted one of the Elders (gatekeeper) through the Internet and telephone after hearing him being interviewed on CBC radio, Halifax. A one-on-one informal meeting was set up at
Stone Bear, a retreat centre located on Bear River First Nations. Following this informal meeting, a retreat day for health care professionals from Annapolis Valley District
Health Authority working in palliative care and stroke was planned and organized for fall
2009. The retreat was at Stone Bear and included lessons on Mi’kmaq culture,
112 spirituality, Native crafts, Story Telling, Drumming, Talking Circle and an interpreted walk through the forest.
The relationship with BRFN developed further when Elders from the community were invited to be guest speakers at two of the annual Annapolis Valley District Health
Authority Spiritual Care Conferences. The purpose of this conference is to focus on incorporating spiritual hospitality at end of life care in health care while attending to the spiritual and cultural needs of the dying. Held in Wolfville, the conference is attended by health care professionals, university professors from various health care programs, spiritual care practitioners, community clergy, and health care and theology students.
Participants come from around the province. As a member of the Social Diversity and
Inclusion Committee at Annapolis Valley District Health Authority, I have taken the lead in planning and organizing these conferences.
Relationships with the community continued to develop when I was invited by the AVDHA to attend the Memorandum of Understanding Signing Ceremony110 between
BRFN and AVDHA in my role as hospital chaplain (Appendix IV). I was also invited to attend both summer and winter Gatherings at Bear River First Nations as well a Summer
Gathering at the home of an Elder who lives outside BRFN. I attended the latter one but was forced to miss the first two. The significance of relationships is expressed by Shawn
110 Memorandum of Understanding between Bear River First Nation and Annapolis Valley District Health Authority was completed and signed May 22, 2012. In this Memorandum both parties recognized that health for First Nations encompasses the physical, spiritual, mental, economic, environmental, social and cultural wellness of the individual, family and community and needs to be addressed holistically.
113 Wilson in Research is Ceremony: Indigenous Research Methods.
Relationships don’t just shape Indigenous reality, they are our reality. Indigenous researchers develop relationships with ideas in order to achieve enlightenment in the ceremony that is Indigenous research. Indigenous research is the ceremony of maintaining accountability to these relationships. For researchers to be accountable to all our relations we must make careful choices in our selection of topics, methods of data collection, and forms of analysis and finally in the way we present information.111
I take Shawn’s admonition seriously. As a non-Aboriginal, middle-class, white woman and member of the clergy, I do not claim to understand the depth or true meaning of Indigenous research as the ceremony of maintaining accountability.
Nevertheless, I attempted to develop a relationship with this research project and the people involved in it by acknowledging and understanding it to be very sacred work. It also means the research project is much more than an intellectual exercise: it is an opportunity to develop a deeper understanding of what it means to absorb spiritual hospitality into daily life, including best spiritual care practices in health care.
Step 3: Ethical Considerations
The relational accountability for this pilot research project stretches far beyond a vision or the grunt work; it includes a high standard of ethics. Since Aboriginal people have experienced racism, prejudice, genocide; and cultural, spiritual, emotional and physical abuse, I reflected long and hard before pursuing the topic. In addition to the principles of informing participants, confidentiality, the right to refuse to participate and to
111 Shawn Wilson, Research is Ceremony: Indigenous Research Methods, (Halifax: Fernwood Publishing, 2008), Back cover.
114 withdraw, I made a personal vow to work very closely with the Mi’kmaq, to honour them as a People and to avoid any emotional, spiritual and cultural harm, recognizing that the very topic of death and dying may invoke anticipatory grief or unresolved grief.
As noted above, I am a non-Native, a white middle-class woman, influenced by the Judeo-Christian belief and value system, and an ordained minister with the United
Church of Canada. I had to think carefully about the participants: not just their traditions and culture, but also their experience with colonialism and residential schools.
Knowledge of these tragic events and the after-math affected the design of the initial questions—they had to be sensitive and non-judgmental. After much consideration I sought to incorporate three key Mi’kmaq values: relationality, respect and accountability.
I cannot pretend to understand the in depth meaning of Ceremony112 nor relationality or relational accountability in the Mi’kmaq culture. I can only attempt to honour and respect the key social values and beliefs by being respectful, hospitable, and faithful, embracing the Mi’kmaq as individuals, family, extended family members and community. Furthermore, Ii cannot represent all Christian perspectives regarding perspectives on relationships with the “other”. Neither can I fully appreciate
(experientially known) the impact and implications of the historic role of the Christian
Church in devaluing and attempting to obliterate traditional Mi’kmaq spirituality.
112 It is with respect to Aboriginal people and the sacredness of Ceremony that the word is capitalized, along with any other words associated with sacred items, Drumming for example. This lesson came from an Elder and Spiritual Leader in Pictou County.
115 Step 4: Rigor
Grounded theory in ethnography demands researchers keep an open mind about the group or culture being studied. This does not imply a lack of academic rigor. Several strategies ensured the credibility and dependability of the project. The fieldwork (the cornerstone of ethnography) was conducted at the principal site, Bear River First
Nations and natural setting of the Mi’kmaq. This allowed the participants to be in their natural environment and to feel as comfortable as possible and avoided the possibility of an artificial response associated with laboratory conditions.
The research questions were shaped to stay focused on the subject matter. They were also presented to the community for input. The Band Council played a significant role in the method for selecting participants so that it would honour the Mi’kmaq Way while meeting the needs. Together we decided a Talking Circle would be the most appropriate manner for community participation and interviews (i.e. focus group interviewing).
The process in which the community was invited to participate was extremely important to the Elders and the community. Therefore, a notice on a community billboard invited the community to a Talking Circle. The billboard is located in the parking lot of the Community Health Centre which is located at one of the main entrances into the community. This invitation gave all members who are living in the community an equal opportunity to participate—if they wished. The Director of the
116 Health Centre, a member of the community, took the lead in inviting the community to the first Talking Circle, hereafter, Talking Circle A.
This way of inviting community members showed respect to the community. No one was pressured to join the project. At the same time, no one was left out. Having said this, the minimum age for participating was 18. All participants had to be members of Bear River First Nations community. Members who lived in or outside the community were welcome to participate. At the time, all participants were living in the community.
Building a relationship with the gatekeeper of the community strengthened the project. He is a highly respected Elder from the community and well respected outside the community. As an Elder and Spiritual Leader he offered both friendship and valuable information.
Step 5: Getting Ready
The next step was to get ready for the actual study. This involved seeking permission from three different ethical research committees; Acadia University
(researcher’s role as student at Acadia Divinity College), Annapolis Valley District Health
Authority (researcher’s role as professionally trained spiritual care practitioner) and
Bear River First Nations (the main research site). Each ethics research committee required some information and/or steps that were similar and other aspects unique to their committees and/or institutions. Since my primary responsibility for the project was
Acadia Divinity College of Acadia University, request for approval was forwarded to the
Ethics Research Committee, Acadia University (AU). Prior to their approval, the Ethics
117 Research Committee required me to read and follow the rules specified in the new Tri-
Council ethics regulations (December 2010). The chapter governing research “in
Aboriginal context” was a must.113 The Ethics Research Committee also required permission from Bear River First Nation (BRFN) to conduct the research before they gave their stamp of approval. There was a learning curve to the process, as Acadia
Divinity College was under the understanding that the Ethics Committee of Acadia
University had to approve the project before contacting BRFN.
The gatekeeper at BRFN put me in touch with the Band Council who had specific guidelines for seeking permission from their Ethics Research Committee. The first step was a telephone meeting with two Band Council members who clearly outlined the process required by the Ethics Research Committee. The second step was sending a letter to the Band Council outlining the pilot research project, purpose, and a small description of who the current researcher is as a person (Appendix V). Immediately following the approval of the Band Council, a second letter was sent to the community
(Appendix VI). This letter included some of the same information but the Band Council suggested it could be more informal because the main purpose was to inform the community that a research request had been submitted and received by the Band
Council. Since it was important to build a relationship with the community, it was
113 Canadian Institute of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research of Canada, “Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, Ethic Regulations, Her Majesty the Queen in Right of Canada (2010), Catalogue No: MR21-18/2010E-PDF, http://www.pre.ethics.gc.ca/eng/policy- politique/initiatives/tcps2.eptc2/chapter9-chapitieq
118 necessary to say something about me (where I live, what my hobbies are). I included a picture in the letter. Once the Band Council approved the letter, it was sent to all households. Each household was given the opportunity to add input by addressing the
Ethics Research Committee or Band Council directly.
After receiving approval to conduct this pilot research project via the Band
Council (Appendix VII), I re-submitted the application to the Ethics Research Committee at Acadia University: it was approved (Appendix VIII). I then applied to the Ethics
Research Committee at AVDHA. This proved to be an interesting exercise because the application form for the Ethics Committee at AVDHA is designed for medical research. In any event, the AVDHA decided that the application form from Dalhousie University was better suited for this project and the research project chosen, therefore the application to AVDHA had to be re-submitted and was subsequently approved (Appendix IX).
Step 6: Moving Forward
Once the various ethics research committees approved the pilot research project, an invitation was sent to the community at BRFN to attend the first Talking Circle, Talking
Circle A.114 Talking Circles are a traditional way for Native Americans like the Mi’kmaq to solve problems. They remove barriers and allow people to express themselves with complete freedom. For this reason, they are becoming more popular in main stream society (schools, corporate board rooms and team dressing rooms around the world).
114 The first Talking Circle will be referred to as “Talking Circle A” and the second as “Talking Circle B”.
119 The symbolism of the Talking Circle is significant: with no beginning and with no body in a position of prominence, it encourages people to speak openly about things that are on their minds.
Talking Circles generally work by having everyone sit in a circle. Men tend to sit to the North while women sit to the South. The conductor of the circle will generally sit in the East. A token, such as a Feather or a special Talking Stick, is passed clockwise around the circle. As each person receives the token, he/she may speak for as long as he/she wishes, including addressing a topic brought up by another in the circle. When finished the speaker passes the token along. If people do not wish to speak, they simply pass the token. The token may go around several times; when everyone has had the opportunity to speak as many times as they wish, the conductor ends the circle.
There are at least three types of Talking Circles. The most common is a simple sharing circle, where people just share whatever they have to say. Another common circle is the healing circle. This is generally guided by a conductor, and is convened to deal with issues bothering people. Another type is used to mediate problems between people, either individuals or groups. The purpose is to find a solution to the problem(s), giving everyone an opportunity to be heard and speak in complete honesty, so that both sides can become aware of the impact of the problem on the other party.
Certain guidelines for Talking Circles must be respected by both Native and non-
Native participants alike. The following five are key in honouring the Mi’kmaq Way.
120 1. Only one person speaks at a time. 2. Introduce yourself. 3. Speak from the heart. 4. Listen with respect. 5. What is said in the circle stays in the circle.
Smudging participants with sage is a ceremonial activity used to dispel any negativity that participants may be carrying with them. It is also believed that keeping a Sage
Smudge burning during the circle is necessary: if emotions are running high it will assist in keeping negativity from entering the circle.115
The aim of Talking Circle A (June, 2012, BRFN) was to inform the community in more detail about the purpose of the project, to seek their input particularly with regards to the questions proposed for the intensive interview, and to explain the process of data gathering. This dialogue included a discussion of the consent form: its need and purpose, and why each participant needed to sign it. The consent form was reviewed so that potential participants would know the contents and be able to ask any questions.
Talking Circle A proved fruitful. Notably, I experienced the community’s hospitality firsthand. Meeting community members face-to-face allowed me explain the full intentions of the pilot research project (purpose, methods and intended possible uses of the research, what their participation in the research entailed and the risks). This gathering and informational sharing provided potential participants with as much information as possible, permitting them to make an informed decision on participating.
115 Mi’kmaw Culture-Spirituality-Talking Circle, pg. 1-2, http://www.muiniskw.org/pgCulture2c.htm
121 The information provided was in addition to the details already given to the Ethics
Research Committee, the Band Council and to every household via the letter.
Talking Circle A helped clarify the project to the community. I identified the issues I wished to raise: the need to enhance the Spiritual Care Program at Valley
Regional Hospital, for example. In turn, members of the community gave their input.
One Elder affirmed the significance of the project by acknowledging this was the first time the community had been asked what their needs might be for end of life care
(cited previously). Another participant took this opportunity to inform me that the process of death and dying for First Nations does not end at death. She suggested, therefore, that one more question needed to be added to the proposed focus interview questions to include the process following death.
True to the nature of Talking Circles, the participants from Talking Circle A chose to speak about what was in their hearts and on their minds. As a result, they moved the discussion from the formality of the mechanics of the project into a dialogue on their traditions and experiences of death and dying. The data gathered from Talking Circle A was informal and written as field notes.
Immediately following Talking Circle A, the Director of the Health Centre and I scheduled a time for Talking Circle B. Once again, the invitation for the community to participate was via the billboard at the community Health Centre. The purpose of
Talking Circle B (July 2012, BRFN) was to gather data via intensive interviewing, or focus group interviewing. Before the interviewing process began, I briefly outlined the main
122 purpose of the research project and reviewed the consent form. Participants in Talking
Circle B were given the opportunity to ask any questions before signing the consent form and/or to opt out of participating. There were nine participants in Talking Circle B.
Eight participants had attended Talking Circle A, and one was a new participant. Three participants from Talking Circle A did not partake in Talking Circle B. According to the participants, two community members who wanted to attend Talking Circle B were called to attend an unexpected community matter and could not participate. There was no explanation given or questions asked as to why the other participant did not return.
This was not needed since participation was on a volunteer basis only.
When the community is invited to attend a Talking Circle, each person may choose to attend or not to attend: therefore, there is no control over who may or may not show up to any given Talking Circle. Therefore, when a Talking Circle becomes the means for data gathering, it may present challenges for some research projects because the researcher may not have the opportunity to have an in-depth discussion with some community members. Further, if a research project needs to have a certain number of participants then another mode of data gathering may need to be used and/or added.
This did not create any issues for this project, especially since many of the participants in Talking Circle A chose to attend Talking Circle B, nor was a set number of participants required.
Some participants in Talking Circle A and B did not verbally participate in the discussions. Once again, choosing whether to verbally participate honours one of the
123 guidelines of Talking Circles. Noteworthy, Talking Circles A and B were much more informal than other Talking Circles that I have seen. A token item for example, was not passed around the Talking Circle; however, participants spoke as they chose to do so and for as long as they wished. A formal Smudging Ceremony was not conducted.
Interestingly, all the sacred items to conduct such a ceremony were placed on the table for Talking Circle A and not for Talking Circle B. Note: I followed the leadership of the community at all times in the Talking Circles.
Step 7: Data Gathering
Reviewing the Pilot Research Project: Once the participants gathered in Talking Circle B,
I introduced myself. In turn, the participants introduced themselves. I outlined the purpose of the pilot research project briefly. The participants were asked if they had any questions. There were no questions raised.
Signing the Consent Form: Each participant in Talking Circle B was given a consent form.
I reviewed the form in detail, inviting participants to ask questions. Once this was completed, I asked those who were willing to volunteer in the intensive interviewing to sign the consent form which explained the study and confidentiality (Appendix X). True to Mi’kmaq culture and structure the participants discussed amongst themselves and made a group decision to remain anonymous prior to signing the consent form. As a result, each participant was assigned a number; Voice 1, Voice 2 and so on, until all participants were identified by the same numerical numbering system.
124 Data Gathering via Talking Circle B Recording the Data: Data collected from Talking
Circle B were recorded on a cassette tape recorder. For the most part, the recording was very good, but some spoken words were very difficult to make out. Therefore, a blank space was left during the transcription process. The missed words were very few and did not interfere with understanding what the participants were saying. The data gathered were transcribed into a software package called QSR, Nivo 10 for Windows.
Intensive Interviewing: Focus Interviewing: Intensive interviewing permitted an in- depth look at the diverse spiritual and culture needs of the Mi’kmaq for end of life care.
It allowed participants to share their interpreted experiences of their spirituality, religion, culture and end of life care. Intensive interviewing enabled me as researcher to demonstrate that I was genuinely seeking to understand the research topic from the
Mi’kmaq perspective. It also acknowledged that the interview participants had relevant knowledge and experience.
The open-ended focus interview questions (Appendix XI) were designed to invite the participants to describe and reflect upon their experiences in ways that seldom occur in everyday life. The interview questions were intended to focus on the topic while honouring the Mi’kmaq. Key resources used to formulate the questions included the day to day experiences of the nursing staff and the spiritual care practitioner, the literature, the Aboriginal Elders and leaders, and palliative care team. The questions from nursing and the palliative care team were genuine. Many were sparked by their concern that the spiritual and cultural needs of palliative patients should be attended to
125 in a fashion that would honour their patients. Many health care professionals are aware of the need to embrace those whose culture or faith may be different from their own.
But, they are afraid of asking the “wrong question” or doing something in the physical care of their patients that might unintentionally offend their beliefs and value systems.
It is important to acknowledge some research and resources speak to the spiritual and cultural needs of Aboriginal people at end-of-life care. As noted earlier, however, there is spiritual and religious diversity within each First Nations community: we cannot assume what holds true in one Mi’kmaq community for end-of-life care is the same in another. Nor can we assume that what holds true for one individual within a community will hold true for other members of the community. Each community and person needs to be asked about the spiritual and cultural needs for end of life care; this calls for local and regional research.
Focus group interviewing illustrated to participants that I, as the researcher, was there to listen, observe with sensitivity, and encourage them to engage in a manner comfortable for them. The focus group interviewing was blended into Mi’kmaq traditions and the interviews took place within the community. Since the open-ended questions were directed at the entire group as opposed to any one participant it can be argued that this interviewing technique honoured another guiding principle of Talking
Circles: equal opportunity to speak. I was not aware of the correlation between this method of data collection and Mi’kmaq traditions until after the fact. Focus group interviewing invited the participants to do most of the talking while the researcher
126 played the role of interviewer. It also allowed some of the practical aspects of spiritual hospitality to be incorporated into the interviews for example, in questions that were open ended and non-judgmental. Participants seemed to welcome this invitation: they responded by sharing their knowledge, stories and life experiences. Purposeful and probing questions were also incorporated into the interviewing process to explore a statement or the topic matter further, but this was done in a caring and gentle fashion with the hope that the participants would not feel overwhelmed and/or pressured into answering. By attempting to create a welcoming atmosphere, I was intentionally trying to be sensitive to cross-cultural differences and to be a good host by showing respect to the Mi’kmaq Way.
Paraphrasing was also used for clarification---to obtain accurate information and to learn about the participants’ experiences and reflections. One of the pitfalls in this interviewing process was my own use of ‘o.k.’ or ‘uh huhs’ during the interview as opposed to saying, “That’s interesting” or “Tell me more.” Having said this, I found the interview process to be stressful: I was trying to honour the protocols of the Talking
Circle such as waiting for each participant to finish speaking before moving on with the next question, asking probing questions or paraphrasing for clarification. Consequently, moments for genuinely saying ‘”Tell me more” seemed to get lost. Trying to find a comfort level within the interviewing process within a cross-cultural setting has been a significant learning curve.
In short, intensive interviewing complemented this pilot research project
127 because it welcomed open-ended questions yet directed the interview for gathering data. It also developed a good pace for the interviewing process and yet was unrestricted in that it gave the participants the opportunity to choose how they may or may not participate. It ensured we stayed focused on the topic and gave me more direct control over the data-gathering and analysis. I was able to narrow the range of interview topics to the rich spiritual and cultural values and beliefs for end of life care, for example. Through this technique, I gathered specific data in a unique fashion. Grounded theory in ethnography likes to illustrate the actions and process that helps to construct it.116
Data Analysis and Interpretation
The raw data (transcripts and field notes) were analyzed in the following seven steps.
Organizing and preparing data for analysis.
The first step was transcribing interviews from Talking Circle B and field notes into Nivo
10, a research data program. Notes taken from Talking Circle A were transcribed as field notes.
Reading through all the data
To obtain a general sense of the information and to reflect on its overall meaning I read through all the data and began to record some general thoughts and possible themes.
116 Kathy Charmaz, Constructing Grounded Theory: A Practical Guide through Qualitative Analysis (Los Angelas: Sage 2006), 22.
128 Coding: The beginning of detailed analysis
The third step involved analytical interpretation. Through qualitative coding I could assign segments of the data with a label that categorized, summarized and accounted for the data gathered. Since coding is understood as the transitional process between data collection and more extensive data analysis it was necessary to take four distinct steps in coding. The first step was initial coding followed by line by line coding, axial coding and finally In Vivo coding. Each stage was extremely important: it allowed me to organize the material so that I could bring meaning to the information. I was able to identify codes, discard some codes, develop new codes and see the significance in threading some codes together throughout the analysis.
Initial Coding: Initial coding was the first step where data could be examined both critically and analytically. Twenty codes were initially identified from the first general reading of the data gathered. The initial codes were not specific types of codes. In fact, they were more general or “first impression” codes. Consequently, they did not suggest anything about the participants’ intended meaning of words or actions associated with certain words. Words like Mi’kmaq beliefs, Native spirituality, and Christian beliefs and rituals were very general. Further analyses of these words and their intended meanings helped to shape Theme 5: Diversity in Spiritual and Religious Beliefs, which is discussed in Chapter 4.
Initial coding ensured two key aspects of grounded theory analysis were being attended to: fit and relevance. In other words, the initial codes appeared to fit the
129 empirical world under study: Mi’kmaq beliefs, values and experiences for end of life care. Initial coding demanded keeping an open mind to identify the codes. Admittedly, some ideas were held prior to the data being gathered. I knew for example, from speaking to Elders beforehand, and from the literature there is spiritual and religious diversity amongst and within Mi’kmaq communities. One participant who spoke to this spiritual and religious diversity: “Traditional beliefs and traditions are different for all of us, not all of us follow traditional Mi’kmaw beliefs. Some of us follow Christian beliefs or non-Christian beliefs.”117 By being aware of my biases I could put some checks and balances in place remaining as open as possible to the data, keeping the codes simple and precise, and staying close to data. As a result, other identifiable codes emerged from the data.
The word diversity was initially identified as a code. It came directly from one of the participant’s statements. “Many Native people nowadays integrate Catholicism or
Christianity with Native traditions, traditional beliefs. Their sacred symbols remain the same.”118 The initial codes identified were wide in range. I had to read the transcript several times to identify codes because the tradition of Storytelling allowed participants to address many issues. Moreover, each story was extremely valuable because each represented real life experiences of the participants.
117 Transcript, Voice 1, Focus Interview, Talking Circle B, Bear River First Nation, Bear River, Nova Scotia, July, 2012.
118 Transcript, Voice 2, Focus Interview, Talking Circle B, July, 2012.
130 Admittedly, as the researcher, I am an outsider and may have neglected to pick up on codes that are more obvious to insiders. In addition, some of the initial codes took me away from the data being presented and forced me to re-read the transcripts several more times. With careful reading I could cluster similar topics together and discard themes that did not fit the data presented. The code “Christian beliefs at
Mi’kmaq gatherings” for example, was eliminated while “awareness, respect, beliefs, values and experiences” were constant.
Line-by-line coding: Line-by-line coding enabled re-examination of the initial 20 codes permitting me to verify some codes and disregard others. I could condense the data and begin a more in-depth thematic analysis. This step allowed me to stay close to the data: at the same time it offered a fresh perspective. I got a better look at what the participants were saying, what they were struggling with and what kinds of actions are involved in attending to the spiritual and cultural needs of the Mi’kmaw at end of life care. The line-by-line coding took the work from first impressions to closer analysis by clustering the data into sections that enabled comparison. Implicit actions and meanings became clear. The gathering at the death bed, for example, is more than “family visiting”; it is part of the spiritual life of the Mi’kmaq. In addition, line-by-line coding helped me to identify such codes as “aftermath of residential school” in the following exert from Talking Circle B:
I can remember him (father) teaching me stuff in the woods and, and, just remembering stuff from his childhood that he was probably taught to him but would say a lot of it was forgotten because it was either forbidden or not speak of or out of pain…lots of times my father was not able to go back home to his family
131 members or on special occasions summer breaks and stuff like that so he spent most of his whole life in residential schools…all they speak of, all they really wanted was a hug. And then I, I think about my father growing up in residential school at age going without any kind of comfort, any kind of emotional support, nurturing, embracing, …119
With this coding I understood why the Mi’kmaq lost many of their traditions because of residential schools. They were forbidden to even speak of their own language at school.
Later some survivors found it too painful to remember and/or talk about the traditions stripped from them. By the same token, line-by-line coding revealed the code neglect. It was prevalent in data that spoke to both the Mi’kmaq experience in residential schools and their present day experiences with the Nova Scotia health care system. Basic needs such as comfort, nurturing and emotional support were identified as being ignored in both experiences. Other related codes included lack of respect and embracing the other in their totality as a whole human being.
One of the key objectives in using line-by-line coding was to stay close to the material. This was accomplished by keeping the codes short and simple. This helped me maintain a clear focus and to differentiate between: describing versus description, stating versus statement, and leading versus leader.
In one particularly interesting instance, Voice 2 spoke to the Mi’kmaq experience with early Europeans and the negative impact of Colonialism and residential schools.
This participant’s comments influenced the final analysis because she was able to link these historical events with their mental, physical, emotional and spiritual well-being in
119 Transcript, Voice 3, Talking Circle B, July 2012.
132 the 21st Century. Voice 2 underlined the need for and sense of urgency in providing spiritual and culturally appropriate care within Nova Scotia’s health care system, including end of life care.
Line-by-line coding enabled me to articulate the ultimate theme of this thesis: identifying and coding one of the core values of Mi’kmaq culture as “hospitality.” It is true that the word hospitality was never used; however the actions within the stories that were shared demonstrated the virtue of hospitality. The following excerpt from the transcriptions demonstrates at least three virtues of hospitality: “ …the lady was coming back and yet from another community…I sat down and explained to her that she didn’t have to go home and destroy and destroy her First Nations pictures and take either off the wall.”120 In welcoming a woman from another community, Voice 3 demonstrated the hospitality of the Mi’kmaq. A second virtue of hospitality was shown when she embraced the other in her totality as a human being. A third principle was demonstrated when Voice 3 created a safe and hospitable place so that the other woman could share her story and discover her own spirituality.
The process of line-by-line coding revealed some gaps in the data. Either individual interviews or a third Talking Circle may have assisted in clarifying some statements by participants from Talking Circle B. But the time allotted to this pilot research project did not permit follow-up interviewing. A follow-up research project would be beneficial.
120 Transcript, Voice 3, Talking Circle B, July 2012.
133 Axial Coding: Axial coding assisted in sorting, synthesizing and organizing the data so that it could be reassembled in new ways. Similar coded data were grouped into new categories or “families.” Codes assigned to Roman Catholic, Agnostic, Native spirituality and more than one way, for example, were re-categorized and coded as spiritual and religious diversity. Other codes such as rituals for death, knowledge of sacred items,
Sweet Grass Ceremonies, and Sweat Lodge Ceremonies were re-categorized and coded to Sacred Items. By linking related codes, I could consolidate meaning. For example, I learned that one of the main purposes of the rituals associated with “Sacred Items” is to provide spiritual and cultural comfort for the one who is dying and his or her loved ones.
Re-grouping and re-coding the data led to the development of a more solid framework upon which to build the final analysis. It extended the analysis into categories that had not been considered before the intensive interviewing, including some preconceived concepts gleaned from the literature reviews. One such category was the death bed scene. Admittedly, the code gathering of loved ones around the death bed was a preconceived notion. Through axial coding, I re-grouped both codes into a new category, kin structure. This gave a better picture of kin structure and the significant role it plays in the custom of family visiting at end of life care. For example, extended family members are responsible for providing spiritual and cultural care to the one who is dying and their immediate family members. Many non-Aboriginal health care professionals are not aware of the need or purpose of kin members gathering around the death bed. Sadly, it is seen by some health care professionals and other patients/and or family members as simply a “large number of visitors” who are difficult
134 to accommodate. The gathering around the death bed, however, is much more. It is about meeting the spiritual and cultural needs of the one who is dying, and fulfilling one’s spiritual and cultural obligations as kin. This will be discussed further in Chapter 4.
The application of axial coding also helped me to eliminate clutter (codes and/or material that did not fit or were irrelevant or off topic). The code arrogance of hospital workers for example, was eliminated even though it was relevant and legitimate, because it ended up hanging on its own.
In Vivo Coding: Since some of the language of participants grabbed my attention, I applied In Vivo coding for further analysis. This allowed the analysis to move to a new level. Themes like Historical and Continuing Gross Misunderstanding, Diversity in
Spiritual and Religious Beliefs, and Kin Structure and Custom of Family Visiting began to surface. Many of themes took on new meaning because they came directly from the participants’ voices and words. On the other hand, the theme Historical and Continuing
Gross Misunderstandings for example, addresses issues that some participants firmly believe led to the atrocities inflicted on the Mi’kmaq by early Europeans. On the other hand, the theme Sacred Objects reflects my definitions of actions and events.121 The participants identified for example that Prayer, Drumming and the Sacred Pipe may be used to attend to the spiritual needs of the one who is dying: hence, my creation of the theme.
121 Actions and events are rituals that are performed and the symbols associated with the ritual.
135 While all themes identified here reflect the participants’ voices, their beliefs, values and concerns, the elementary theme of Spiritual Hospitality is a blend of spiritual life as expressed by the Mi’kmaq and my own preconceived notions.
3.7 Conclusion: What Were the Lessons Learned?
I was surprised by the lessons I learned from the project. First, conducting research is a huge responsibility for a novice researcher. Trying to determine the methodology and why one methodology may be better than another demands a great deal of care and critical thinking, especially in cross-cultural research. My awareness, for example, of the atrocities experienced by Aboriginal people and the aftermath, forced me to reflect deeply and to find a methodology that would honour the Mi’kmaq.
In addition, like many novice researchers, I wanted to jump right into doing the research. But, as mentioned earlier I had to get approval from three different ethic research committees (Bear River First Nation, Acadia University and Annapolis Valley
District Health). I understood the reasoning for this process and agreed with it, but it created a certain amount of anxiety, as I wanted to start researching. Having said this, the three step process was valuable: the feedback from each committee strengthened the project. BRFN ethics committee helped build relationships with the community and the other two made suggestions for strengthening focus interview questions and methodology.
Another lesson learned is the responsibility that goes with community research.
One of my biggest responsibilities has been the reliability, validity, and credibility of the
136 research and analysis. The responsibility associated with the project cannot be over- emphasized, especially since it has been conducted in a cross-cultural setting with participants who have faced innumerable problems. In health care, medical and nursing professionals take a vow “to do no harm” and they can face a variety of ethical issues on any given day. While I am not a medical or nursing professional, I found the four words
“to do no harm” guided me as I determined the ethics and manner for conducting this research project as a clinically trained spiritual care practitioner, United Church
Minister, and who I am as a whole person.
The lessons learned from this pilot research project seem endless. I now know I want to do other research projects related to spiritual hospitality and health care. At the same time it might be advantageous to enroll in some sociology courses to improve my knowledge of methodologies and processes for data gathering and analysis.
Of course, the lessons learned go beyond academic learning. This project gave me an opportunity to grow in both my spirituality and humanity. It was more than an academic exercise; it was a sacred journey. For example, in addition to experiencing the spiritual hospitality of the Mi’kmaq, I developed a new sense of what it really means to be in relationship. As mentioned earlier the relational is extremely important to the
Mi’kmaq. Being in relationship can include both animate and inanimate objects; therefore, it can be integrated into everyday life.
I found myself crying on the way home from Talking Circle A and B. I had connected spiritually, one human being to another, and the participants had welcomed
137 me into their lives by freely sharing their feelings, knowledge and life experiences. More tears were shed when I transcribed the data gathered from the tape recorder to the computer program. During this exercise, I realized I was carrying the participants and the community of BRFN in my heart. At the same time, I recognized that building relationships with BRFN cannot be taken lightly: relational accountability is part and parcel of being in relationship with the Mi’kmaq, and I must continually work on building relationships with the community. I realized that I must be accountable to the community both during and after this research project, continuing to work collaboratively with the community so that the Spiritual Care Program at Valley Regional
Hospital can move forward.
Finally, I reflected on my own Judeo-Christian tradition. I was reminded of the spiritual hospitality that Jesus offered to others, including the woman at the well whose spiritual and cultural beliefs differed from his. The lessons learned from the teachings of
Jesus and the Mi’kmaq Elders has motivated me to continue growing in my spiritual life and practices.
138 Chapter 4: Analysis and Results
4.1 Introduction
As noted in the previous chapter, grounded theory ethnography was used to identify common themes in the focus group transcripts from Talking Circle B and the field notes.
Four levels of coding: initial, line-by-line, axial and In vivo coding (Charmaz 2006) generated the final thematic formulation. Emergent themes from the focus interview
(Talking Circle B) were sent back to the participants for further input. Six themes were taken directly from the participants’ statements. Since Theme 7, hospitality represents a significant discovery and stands alone it will be addressed in Chapter 5.
The results from this pilot research project were used to determine Mi’kmaw family and community needs for end of life care at the local level. They were also used to develop a model of spiritual care-giving rooted in the ancient biblical understanding of hospitality for the purpose of enhancing the Spiritual Care Program at AVDHA. This will allow health care providers, including spiritual care practitioners, to recognize and support culturally specific spiritual experiences and expressions of the terminally ill and their loved ones. The enrichment of the Spiritual Care Program at AVDHA will reflect the concerns and recommendations of the focus group participants. Improvement will also stem from common elements of hospitality in both Mi’kmaq culture and the Bible: creating a welcoming atmosphere, receiving the other, having respect, being in relationship, having reciprocal relationships, being inclusive, embracing the other in totality as a human being, listening and maintaining good boundaries.
139 In addition to participants’ statements transcribed from the focus group interview, the research made use of three other resources. First, field notes were recorded during certain community activities: introduction to Stone Bear (2010), the
Summer Gathering BRFN (August, 2012), and a cultural awareness and retreat day
(October, 2011), held at Stone Bear for staff from AVDHA. Second, research material and data were gathered at Canadian, provincial, and local hospice palliative care conferences. Third, research conducted by Chief Jasen Sylvester Benwah (Mi’kmaw historian) was used to illustrate the social, spiritual and psychological benefits of the traditional Mi’kmaq death bed scene.
Since I found a great deal of data convergence during analysis, with participants describing similar concerns for appropriate end of life care, I will include many of their comments in the following sections. The use of quotations (thick descriptions)122 adds credibility to analysis.123 Note, as this is a pilot project neither the research nor the analysis is complete.
4.2 Analysis of Themes Drawn from Data
A number of common themes emerged from the focus interviews and field notes. These
122 Thick descriptions are the most identifiable features of field notes. By using quotes from the focus interviews and field notes, I am sharing the participants’ understanding of spiritual and cultural needs for end of life care and the barriers to meeting those needs. By revealing their views, feelings, intentions and actions, participants provided a means for gathering rich data.
123 Kathy Charmaz, Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis (Los Angeles: Sage, 2006), 14.
140 can be slotted into seven categories: 1) Historical and Continuing Gross
Misunderstandings, 2) After-math of Colonialism and Residential Schools, 3) Respect, 4)
Sacred Objects, 5) Diversity in Spiritual and Religious Beliefs 6) Kin Structure and Family
Visiting, 7) The Critical Theme of Ancient Biblical Hospitality. The implications of these findings for spiritual care practitioners and other health care providers will be discussed in the last section of this chapter. As noted above, Theme 7 is addressed in Chapter 5.
(a) Theme 1: Historical and Gross Misunderstandings
One participant spoke of Europeans grossly misinterpreting Mi’kmaq124 spiritual beliefs and practices. According to Voice 2, early Europeans did not see any physical evidence of European religious structures amongst the Mi’kmaq; therefore, they understood this to mean the Mi’kmaq had no religious or spiritual ideologies. They also interpreted
Mi’kmaq religious practices as superstitions. However, these were based on strong spiritual beliefs founded on respect for both the living and the dead:
The early European came….to the Mi’kmaw.125 They grossly misinterpreted their spiritual beliefs and practices and instilled it because there was no physical evidence of European religious structures. This somehow meant that the Mi’kmaw possessed no form of religion or spiritual ideologies. Further, the Europeans perceived their religious practice of the Mi’kmaq people as mere superstitions when in fact these practices were pursued out of spiritual beliefs based on respect on both living and deceased…Mi’kmaw spirituality is a philosophy and way of life that is encompassed in their beliefs which dictates their actions and their lives and Mother Earth and life in a Spirit world.126
124 Mi’kmaq (plural)
125 Mi’kmaw (singular)
126 Transcripts, Voice 2, Focus interview, Talking Circle B, July 2012.
141 Sadly, the lack of understanding is not limited to past history. One participant
(Voice 3) spoke to more recent times when a man dying in a long-term care facility had
Sweet Grass removed from his hand by a health care professional:
I feel that Sweet Grass is very sacred to our people and I remember an older gentleman who was living in a nursing home from down here on our reserve and he had, he, he, had this blade of Sweet Grass and of course it meant so much to him in his mind that they (family) wanted the Sweet Grass close. While close to him so, they had taken, they had taken the Sweet Grass from him somehow or whatever because it did not mean anything to them. But anyway that really upset him and he couldn’t speak and but the Sweet Grass was so, meant so much to him, it was so sacred that I feel like any object like, that a Native person has like, that they should be able to still have it.127
Unfortunately, the cultural insensitivity created added stress for the dying man, his family members, and the community. If the surroundings are not supportive and positive individuals and/or the family may struggle with emotional, spiritual and psychological well-being. Failure to provide good support to family members can ultimately become a public health issue if surviving family members become patients in the health care system, ineffective employees or a burden on society.128
Both participants validate the principle that the health of any human population is the product of physiological, psychological, spiritual, historical, sociological, cultural, economic and environmental factors. Their comments identify some of the challenges faced by Mi’kmaq when they access the health care system in the 21st century. The
127 Transcripts, Voice 3, Focus interview, Talking Circle B, July, 2012.
128 Canadian Hospice Palliative Care Association. A Model to Guide Hospice Palliative Care. (Canada: 2002), 13-14.
142 correlation between the historical context and the present day experiences suggest their culture and spiritual beliefs are still being dismissed; they continue to lack access to a more appropriate type of holistic and/or patient-centered care.129
Another participant spoke of the lack of cultural awareness and sensitivity she experienced after giving birth to one of her children:
I can remember being in the hospital and sometimes I almost regret it because it’s that Sacred time too and I had friends die too…having that time with babies seeing light for the first time, they [health care workers] walk right in, lights out, I got to check the baby again. They are so focused and also arrogant, that their job is the most important thing they need to do but culturally though sometimes we need to do is also especially when these Sacred times you know is also very, very important….so wonder if…we were having a moment when I was, we putting energy, holding a rock because her grandfather was having a Sweat and holding it to her was just trying you know, for her to feel the peace, connecting to the grandfathers, and I need to finish that. So what if we were silent and the person kind of peeked in and came in to do dadadada, and yet this was something that was so important to me….I think hospital workers coming in with so much I got to do this, got to do this, got to do this, and maybe not being as in the moment to see.130
This participant confirms that lack of communication, cultural awareness and sensitivity can lead to gaps in services between the three cultures of care; the patient, health care professional, and the health care system. For example, she notes the differences in focus of care between herself and the health care professional attending to her baby.
Voice 4 is attending to the spiritual needs and overall wellness of her baby, but the
129The Institute of Medicine (IOM) defines patient-centered care as: “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” See IOM “Crossing the quality Chasm: A New Health System for the 21st Century.” Accessed November 12, 2013. http://iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A- New-Health-System-for-21st-Century.aspx
130 Transcripts, Voice 4, Focus interview, Talking Circle B, July, 2012.
143 health care professional is concentrating on the medical needs of the newborn.
Consequently, there is a clash: Voice 4 is left feeling her baby’s spiritual needs are neglected and disrespected because the health care professional makes no attempt to seek an integrated understanding of her world and/or needs.
Theresa Muise (Mi’kmaq Spiritual Leader and author) had the opposite experience which she shared at the annual Spiritual Care Conference sponsored by
Annapolis Valley District Health Authority and the Ministry of Health and Wellness.
According to Theresa, her mother was admitted into an urban hospital in Halifax for surgery. On the day of her mother’s surgery, Theresa and her sister were visiting.
Theresa’s sister brought an Eagle Feather into the room for her mother. The Eagle
Feather is a very sacred item for the Mi’kmaq: the Eagle is the only creature to have seen the face of God. Acknowledging that her mother would soon be going down to surgery, Theresa’s sister said to her mother, “I better take this with me (the Eagle
Feather) because they won’t let it stay with you.” At that moment a nurse came into the room and said, “What won’t we let you keep?” Theresa’s sister showed her the Eagle
Feather. The nurse asked if she could have it for a moment. Theresa’s sister gave it to her. The nurse wrapped it in a plastic bag and placed it under the mother’s pillow. She looked at Theresa’s mother and said, “This will go to the operating room with you.”
When the mother returned from surgery, Theresa looked under her mother’s pillow. To her surprise the Eagle Feather was still there. In her presentation Theresa said to the
144 conference participants, “You will never know what this meant to us, to know that our
Traditional Ways were honoured.”131
Theresa’s experience demonstrates the possibility for the three cultures of care to be supportive of one another and bridge the gap that often exists between the user and provider. The nurse was in tune with the spiritual and cultural needs of the
Mi’kmaq. She honoured this particular Mi’kmaw family by ensuring the Eagle Feather could travel to the operating room with Theresa’s mother. Before this could be accomplished however, the nurse needed to meet hospital policy and standards for infection control: thus the Eagle Feather being wrapped in plastic. In other words, the nurse was able to follow hospital policy while delivering holistic patient-centered care.
Knowingly or unknowingly, this nurse extended ancient biblical hospitality to this family through her caring attitude. Moreover, she incorporated one of the most highly regarded principles of both biblical hospitality and Mi’kmaq culture into her caring attitude and practice; respect. For example, she asked permission to have the Eagle
Feather; she did not simply pick it up. Since hospitality is a highly regarded value, the nurse’s extension of hospitality was greatly appreciated by the family. Her actions also created an opportunity to advance the relationship between the patient/family members and the health care professional.
131 Field Notes, Theresa Muise, “Spirituality as Hospitality: There is More to Death than Dying,” Spiritual Care Conference, Ministry of Health and Wellness and Annapolis Valley District Health Authority, April 2012, Wolfville, Nova Scotia.
145 (b) Theme 2: Aftermath of Colonialism and Residential Schools
One participant spoke about the cultural and religious oppression following colonialism.
According to Voice 2, today’s Mi’kmaq spiritual leaders believe their people experienced a difficult transition following their acceptance of Christianity in the 1600s, partly because they moved from their familiar belief system of being in relationship with the earth to a relationship with the unfamiliar. They were no longer full participants in familiar ceremonies: they became onlookers, watching rituals being performed by one person:
Whatever forms of worship that existed, were taken away by the early missionaries. When the Mi’kmaw accepted Christianity in the 1600s we would presume that this was a difficult transition for our ancestors to move from a relationship with the earth to a relationship….from being full-participant, to familiar ceremonies to on lookers of a ritual performed by one person and then from a language that was totally foreign and, ummm, and it is true because many people would uhhh, were never used to just one person, one participant. Despite the cultural and religious oppression many of us continue to be faithful people.132
Residential schools in Canada have also left a mark on the emotional, psychological and spiritual well-being of Aboriginal people across Canada, as one participant explained:
…when I was growing up my mother came from a Catholic family and my father came from residential school. Residential schools was run by priests and nuns so my father never spoke of any Catholic beliefs he just kind of umm and traditional stuff he was limited because all of that stuff was taken out of him in residential school. Once and a while he was going to go out hunting first thing in the morning. I would get up early and say, “Papa can I come with you?” He would say, “Yah, get ready.” So I would get up and go out to the woods. I can remember him teaching me stuff in the woods and just remembering stuff from his childhood that he was probably
132 Transcripts, Voice 2, Focus Interview, Talking Circle B, July, 2012.
146 taught to him but would say a lot of it was forgotten because it was either forbidden or not speak of or out of pain or just not encouraged to participate.133
Here, Voice 3 explains the spiritual, cultural and psychological damage that her father suffered as a result of his experience at residential school. Her insights can alert spiritual care practitioners to some critical issues. Ultimately, the residential schools affected not just the original student, but also his children: he was not able to pass some traditions on to his children, thus limiting opportunities to preserve traditional ways.
Sadly, some survivors of residential schools were taught that any kind of touching was inappropriate. Consequently, some have found it very difficult to express their feelings for their loved ones by offering them a hug, for example. As a result, their children have not always been able to experience the kind of nurturing they have needed and/or desired from their parents. These insights are significant because they can help health care providers to understand why they might see very little physical affection between family members.
The lingering effects of colonialism are complicated by the effect of residential schools and racism. It is not unusual for the Mi’kmaq people to experience violent deaths in their communities. Sadly, many of the children see death from the time they are babies. Death and dying has become a way of life.134 Spiritual care practitioners and other health care professionals need to be aware of Mi’kmaq history and how it is likely
133 Transcripts, Voice 3, Focus interview, Talking Circle B, July, 2012.
134 Filed notes from interview with Catherine Anne Martin, Mi’kmaw Drummer/Film Maker/Chanter/Story Teller, November 2009, Halifax, Nova Scotia.
147 to affect their health, including spiritual well-being. It is not unusual for survivors of abuse to experience distress, emotional and/or physical pain, and anguish, for example.
They can be left emotionally and spiritually crippled.
(c) Theme 3: Respect
Some participants took a great deal of time and care to share their history. The Mi’kmaq firmly believe that non-Natives need to learn about Mi’kmaq roots to develop an appreciation of who they are. In sharing her Mi’kmaq history, Voice 2 was also able to provide insight into a highly regarded social value: respect.
Voice 2 linked the value placed on respect to the spiritual and religious belief system of her Ancestors. Because they believed for example, that God was active in their lives, they incorporated respectful rituals into their daily lives including prayers or the offering of Traditional medicines. Eventually these rituals became a form of worship to the Creator.135 Paying homage to the Creator was expressed through all living things, including animals, birds, and plants. Ceremonial dances mimicking the graceful movements of animals or birds constituted another traditional way to show respect to the Creator.136 These spiritual practices and traditions continue to be a key component of Ceremonies conducted today.
135 Transcriptions Voice 2, Focus interview, Talking Circle B, July, 2012
136 Field Notes, Pow Wow, 2009, Pictou Landing First Nations, Pictou Landing, Nova Scotia.
148 Paying respect to the Creator is also expressed in the prayerful and careful manner in which the Mi’kmaq create the clothing and symbols for Ceremonies. Some clothing is designed to represent a bird or animal. An Aboriginal Spiritual Leader (2008) showed me some sacred objects she had made. The attention to detail in the colour and shape of animals carved or painted on many of the sacred items was obvious. I was taken to a special corner in the house where the Spiritual Leader and her mother made clothing and sacred items for Ceremonies. It took them over 60 hours to create and finish one spiritual symbol. During this time they were in constant communication with the Creator so that they could show their respect for the materials they were using. The
Spiritual Leader also spent many hours walking the land waiting for the Spirit to guide her to the materials she needed. Once she found the items, she gave thanks to the
Creator by offering Traditional Medicines to Mother Earth. She offered prayers for any animals killed for food. Her prayers included thanks for other parts of the animal used for clothing, the creation of Ceremonial objects and Traditional Medicines.137
Some participants deplored the failure of early Europeans to recognize and/or understand their spiritual and cultural traditions as legitimate and valuable. For example
Voice 2 said: “The Europeans perceived their religious practices as mere superstitions when in fact these practices were pursued out of spiritual beliefs based on respect on both living and the deceased. The Mi’kmaq forms of worship were taken away by early
137 Field notes, Pictou County, Nova Scotia, Spring, 2010.
149 missionaries.”138 Like other participants, Voice 2 emphasizes that spiritual beliefs are rooted in respect.
As noted earlier, Voice 3 shared her encounter with a woman from another community who was experiencing a great deal of spiritual distress:
I can remember when I was around 29, 29 years old, I was living up in the community and somebody from another community had asked if she could have a Sweat in my back yard and umm, she let the community know that she was going to have this Sweat, and uhh, I said, no problem….She come out in tears crying and just so upset and she said she was going to go home and destroy all her Native pictures on the wall and anything Native she wanted to get rid of it and she was just going to go back to her religious pictures of uuh, umm, the Catholic God and what not and I sat down and talked to her and explained to her that she didn’t have to go home and destroy her First Nations pictures and take either one off the wall and uhh and I talked to her and told her she could be both.139
There are at least three major insights into the internal frame of reference of the
Mi’kmaq to be gleaned from this life experience. First, the distressed woman was experiencing an identity crisis, not knowing if her spiritual life rested in Native or Roman
Catholic traditions. Second, Voice 3 assured the distressed woman she could live and practice a spiritual life encompassing both traditions. She would be respected for whatever choice she made with regards to her spiritual life. Last but not least, Voice 3 was able to demonstrate the Mi’kmaq Way to her by being extremely hospitable. She created a safe place whereby she could express her most inner thoughts and feelings without being judged. She showed hospitality by opening up an opportunity for the
138 Transcripts, Voice 2, Focus interview, Talking Circle B, July, 2012.
139 Transcripts, Voice 3, Focus interview, Talking Circle B, July, 2012.
150 distressed woman to find her own God and/or spiritual way, demonstrating a great deal of respect for her.
Voice 2 provided further insight into the value placed on respect when she identified that abuse and greed are unacceptable behaviors in Mi’kmaq culture.
According to this participant, her Ancestors only took from the land or water what was needed at the time. To give thanks to the Creator for providing the necessities of life certain rituals were performed, offering Tobacco to Mother Earth, for example:
We begin with the belief that our ancestors lived and practiced a life style that was mainly spiritual. God was truly active in our daily lives for to honour the Creator Spirit in all of life and the animal, birds, the plants and all living things. Great respect was bestowed on the land and water and they constantly gave thanks to the Creator because of this respect nothing was abused. People only took what they needed for the time and their belief. Respect is all that is shown….respect is a great principle. Everything is considered sacred.140
Since respect is a principle found in both Mi’kmaq culture and ancient biblical hospitality, it can become a means by which spiritual care practitioners can develop a trusting and caring relationship with the dying and their family members. Further, it can be the foundation for constructing a strong and genuine relationship between three cultures of care so that the needs of the dying can be attended to in a meaningful way.
(d) Theme 4: Sacred Objects
Three participants spoke to the Mi’kmaq belief that everything is sacred including their traditional medicines and items used for Ceremonies; the Drum and Talking Stick, for
140 Transcripts, Voice 2, Focus interview, Talking Circle B, July, 2012.
151 example. Two participants mentioned health care providers’ lack of knowledge about sacred items and how to be respectful to them. Voice 4 talked about the sacredness of the Drum at end of life:
It could also be a drum and you might not if you are not from the culture realize that some people are really strict about the kinds, it could depend on what kind of cultural teaching you have…I was going to bring it up later about the drumming as a passing rite and umm, it can be something like putting the drum down maybe on a chair or on the other bed in the room or whatever and some people (hospital workers) come in and pick it up and some of these people maybe think that they should be covered up and put away but just in case that can be a sacred item.141
This participant has provided good insight into the significance of sacred items at end of life. First, drumming is a rite of passage. Second, some Mi’kmaq are very strict about how sacred items are handled. Third, the protocol for handling sacred items is dependent on the individual and can be based on cultural teachings. Cultural teachings can vary from one person to another: what may be understood as a sacred item by one
First Nation person may be appreciated differently by another.
In other words, health care providers should not make assumptions about sacred items. If a Drum for example, is resting on a chair, it is best not to pick it up or move it with out asking permission from the one who is dying and/or their family members. A good option is to ask a family member to move it. One participant spoke in detail about the significance of having a terminally ill person and/or their family member move sacred items. First, it is accepted by the Mi’kmaq that each sacred item has its own
141 Transcripts, Voice 4, Focus interview, Talking Circle B, July, 2012.
152 energy. Second, it is believed that when a woman is on her Moon time142 she has a special energy which can change the energy of a sacred item. Consequently, at such times, she is not permitted to touch sacred items.
Touching sacred items inappropriately can create a lot of stress for some
Mi’kmaq especially if they are sensitive and deeply committed to traditional ways.
Taking time to ask permission demonstrates respect: “I think that if there are sacred items and medicines in the room they have to be treated with respect. Sometimes you don’t touch peoples stuff at all unless you have permission. So, umm, disrespect for those sacred items.”143
Having said this, some spiritual care practitioners and/or health care professionals may experience moral stress as they try to honour the cultural and spiritual traditions of others. Some women for example, may find it distressing that it is considered disrespectful to touch Mi’kmaq Sacred items when they are on their Moon time. Each individual health care professional, including spiritual care practitioners, needs to come to some understanding within themselves as to what their limitations are when serving others. In some situations it may be more appropriate to ask a colleague to serve the patient if the moral distress is too great. Others may need to ask themselves some tough questions. “Am I pushing my beliefs and values on the other, if I do not honour their traditions or beliefs?” “Is it ok for me to not accept the beliefs and
142 Moon time is when a woman is on her monthly menstrual cycle.
143 Transcript, Voice 1, Focus Interview, Talking Circle B, 2012.
153 values of the other and yet honour his or her traditions?” “Does it compromise who I am or enhance who I am by allowing my humanity and spirituality to grow?”
One participant explained how non-Natives might identify sacred items in a patient’s room:
Maybe just umm, maybe through this it might also be helpful to make not necessarily a list of things, of what might be in their mind considered a sacred item but I don’t know because if you have this in red (tobacco wrapped in red cloth) you must know that if someone walks up to a room and sees something covered in red cloth it might be a Drum in there, it might be Medicine in there, it could be a Pipe in there, it could be something special, some kind of special thing. We don’t know what kind of special thing but if you see red cloth, that’s a good time to just ask permission because a lot of things, might see a lot of things wrapped in red cloth.144
According to this participant items covered with a red cloth (a sacred colour of the
Mi’kmaq) automatically signifies that the item is considered very sacred. Therefore, under normal circumstances, health care providers need to seek permission before they touch it and/or move it. Exceptions can be made if the item needs to be moved for emergency medical attention. She also suggested that other items in a patient’s room might be considered sacred: therefore, raising cultural awareness and sensitivity can decrease conflict between the three cultures of care.
Some participants emphasized that sacred items can play a significant role in deepening the spiritual life of the one who is dying. It is believed for example, that sacred items can help guide the terminally ill to the Spirit World. One participant talked about the role of the Smudging Ceremony in end of life care. Having the opportunity to
144 Transcript, Voice 4, Focus Interview, Talking Circle B, July, 2012.
154 experience the beautiful fragrance of a Smudging Ceremony, for example, may enable the one who is dying to connect with the familiar and reach peace. Voice 1 explained the craving that the terminally ill sometimes have for a Smudging Ceremony:
Because in memory like you know you’ve craved…the burning smoke and ahh, it was so important because I know when my mom passed away I opened the window because that one part of the little ritual that you open a window and light a candle because it would help to bring the Spirit along the way in passing over.145
Smudging Ceremonies and drumming play a significant role in end of life care: they can help the dying to feel connected to family, friends and the familiar rather than feeling alone and/or isolated. Being surrounded by familiar sounds and smells can also provide the terminally ill with spiritual and emotional comfort. The sound of Drumming for example, can give a sense of peace as they move towards the Spirit World.
Moreover, it can give them the sense that they are moving towards the Spirit World. 146
The sound of a window opening or the knowledge that a window has been opened can give the terminally ill the sense that the Spirit is coming to move over them.
The significance of this ritual and the comfort it can give was observed by a health care team at Valley Regional Hospital in the spring of 2013 when a locked down window was opened for a palliative patient who wanted to experience her Mi’kmaq spirituality to the fullest at end of life.147 By creating an opportunity for this patient and her family
145 Transcript, Voice 1, Focus Interview, Talking Circle B, July, 2012.
146 Transcript, Voice 3, Focus Interview, Talking Circle B, July 2012.
147 Field notes, Spring 2013, Regional Hospital, Nova Scotia.
155 members to freely experience and express their cultural-specific spiritual expressions, the health care team gave them a great deal of comfort.
Experiencing and expressing one’s spirituality and culture involves more than the presence of sacred items; it is also the opportunity to engage in the meaningful rituals that accompany these items. Voice 1 talked about the significance of participating in specific rituals when her mother was dying: the Sweet Grass Ceremony, lighting a candle and opening a window. Participation in these rituals served two purposes. First, she showed respect to her mother by honouring her spiritual and cultural traditions.
Second, she honoured the Mi’kmaq belief that death is a part of the circle of life. She was also able to honour the belief that the soul of the dead goes to the Spirit World. For example, lighting the candle signifies the light given at birth. It is believed that this same light will help the dying to find the path to the Spirit World.148
All of these rituals and many more are significant in attending to the spiritual and cultural needs of the dying. The Mi’kmaq believe there are two worlds; the Spirit World and a physical world. According to Mi’kmaq tradition, the Creator teaches them they can gain knowledge and wisdom from both worlds. Having the opportunity to perform rituals symbolizing the connection between these two worlds is significant at end of life.
By participating in traditional rituals for end of life care, Voice 1 showed that she and her mother continued to be in relationship with the many energies of the world,
148 Mi’kmaq Association for Cultural Studies, Spirituality (Membertou, Nova Scotia 2013), 3 Accessed November 2, 2014. http://mikmaqculture.com/index.php/mikmaq_history_culture_songs
156 including the Spirit. Moreover, she displayed respect (on behalf of her mother and herself) to the Spirit and energies of the world by remaining connected to them in a meaningful way.
Cultural awareness and sensitivity must be a two way street if the three cultures of care are going to create a new sense of respect for one another and develop genuine relationships. Patients and families for example, need to know health care professionals have certain standards of care. Having said this, it is possible to eliminate some of the barriers if all parties are willing to openly share their knowledge, identify each other’s needs and work together in a collaborative fashion.
Lack of communication and understanding can have a negative impact on the relationship between the terminally ill and health care providers. One participant spoke about her uncle’s experience in the hospital:
That nurse or hospital worker might not know, so if they come in and are touching because I know when I going umm, when I was going to the hospital with my uncle, he was you know, passing away, and uhh, you know we were having family members come in and of course we grasped his hands and some other things, something that he had, he had, he had was a deck of cards that was lying there beside him and the nurse or whoever come in every 15 minutes and move stuff and you know set it on the little table there. Oh we have to check this and that and do what they had just done 15 minutes ago and not bother putting anything back and just go out the door and then its like OK, now we start all over again….We ended up not like rolling Sweet Grass up and shutting it in his hand, into his fist so he could still do everything and he had it in his hand instead of like having it like this, instead of a compromise…149
In the eyes of the participant, the relationship between the three cultures of care was
149 Transcript, Voice 3, Focus Interview, Talking Circle B, July 2012.
157 extremely stressed. From the family’s perspective there were several factors that created tension. First, the dying man was not able to fully participate in his spiritual and cultural traditions. Second, he and his family did not feel respected by health care providers when items were moved and not put back in their place. Removing Sweet
Grass from the dying man’s hands, for example, without permission and/or not placing it back into his hands was considered disrespectful to the dying man, his family members and the community. Third, the family did not believe they could fully engage in and/or fulfill their spiritual obligations to their loved one. For example, the family declined to engage in any further spiritual Ceremonies following the Sweet Grass incident.
(e) Theme 5: Diversity in Spiritual and Religious Beliefs
Nine participants spoke to their own spirituality and/or religious beliefs. Seven identified a spiritual and religious diversity in their community. Some follow Mi’kmaq Traditional
Ways while others follow Roman Catholic or non-Christian beliefs. Still others combine
Mi’kmaq Traditional Ways with their Roman Catholic traditions. One participant acknowledged growing up in an agnostic household. It was later in life that she connected with her Mi’kmaq Traditional Ways:
….my parents, I hope I use the right term, agnostic, but we didn’t talk about anything like that at all but I was ahhh, we certainly had reasons for all that…we were the way we were taught at school. It was science based…I got the school perspective on that you know not believing in anything…being left on my own however, in relationships uhhh with Elders… all over the country because you meet all of them…I guess I started to realize that I am a spiritual person. I wasn’t taught how to interpret sensation, to just have sensation, to feel connected to. It doesn’t
158 matter if I felt that there was a God Creator or a word to that just being open to the sensation of things feeling connected, umm, feeling respectful, feeling that everything has a purpose….150
As Voice 4 explained, diversity is respected and accepted within the larger Mi’kmaq community, individual family homes and by individuals themselves. Moreover, respecting and accepting diversity is a highly regarded social value within Mi’kmaq culture. She described her own spiritual journey and how she was encouraged to explore spirituality outside the teachings from her immediate family. Taking time to explore her own spirituality led her to connect in a unique way with her Mi’kmaw roots and spirituality. True to the Mi’kmaw Way, Voice 4 also demonstrated the Mi’kmaw philosophy of respecting and accepting the beliefs of others. She acknowledged and embraced her parents who followed a spiritual path different from her own. The fact that this participant was in tune with her own spirituality and the Mi’kmaq teaching of being respectful of the beliefs of others seems to have given her the permission she needed to explore her own spiritual life freely. This was evident when she said: “I guess I started to realize I was a spiritual person…It doesn’t matter if I felt that there was a God
Creator or a word to that, just being open to the sensation of things, feeling connected, umm, feeling respectful, feeling that everything has a purpose…”151 The Mi’kmaw philosophy of non-interference is reflected in the interaction of the Mi’kmaq with their
150 Transcript, Voice 4, Focus interview, Talking Circle B, July, 2012.
151 Transcript, Voice 4, Talking Circle B, July, 2012.
159 children, who are taught from an early age to make decisions that affect their lives.152
Clearly Voice 4 made her own decision to explore her spirituality further.
The Mi’kmaq values of respect and acceptance of others were embraced by the
Elders who welcomed her into their lives and gave her the opportunities she needed to explore her spirituality. Voice 4 also acknowledged the significance of being in relationship when she mentioned feeling “connected” and being “in relationship” with the Elders, reinforcing the principle of existing within a network of relationships. The significance of being in relationships was highlighted when she talked about giving birth to her baby and the importance of fulfilling certain rituals which would begin the process of her baby being linked to others. It was important for example, that her baby felt at peace and connected to its birth grandfather. “…wonder if…we were having a moment when I was, we, putting energy, holding a rock because her grandfather was having a Sweat and holding it to her was just trying you know, for her to feel the peace, connecting to the grandfathers,…”153 This ritual was extremely important to Voice 4: it introduced the baby to its network of relationships: birth grandfather, the grandfathers who have walked before her (the Grandfather rock), and the community.
All aspects of the life cycle are important to the Mi’kmaq, including the birth of a child. This involves more than bringing another life into the world. As identified by Voice
152 Government of Nova Scotia, Department of Education and Culture, “Nova Scotia Past and Present: A Resource Guide, Mi’kmaq Rules of Protocol, 1,” hrsbstaff.ednet.ns.ca/mwebb/Mi’kmaq%20rules
153 Transcript, Voice 4, Talking Circle B, July, 2012.
160 4 each child is understood as being a part of ongoing creation. Birth demonstrates the depth and breadth of connecting to a variety of meaningful relationships.
Death and dying are also a part of ongoing creation. Like the birth of a child, the one who is dying demonstrates the depth and breadth of relationships in Mi’kmaq culture. They remain connected to those who gather around the death bed while at the same time they prepare to connect with the Ancestors who have gone before them to the Spirit World. By acknowledging the significance of diversity and the network of relationships within Mi’kmaq culture, Voice 4 clarifies that spirituality is more than a belief or value system; it is a way of life.
Voice 4 also indicates that finding her place or identity in relationship to her environment and/or how she sees the world around her depends on her ability to freely experience and express her Mi’kmaq spirituality. By the same token, creating hospitable places in health care can assist the Mi’kmaq to experience and express their spirituality in a way that is meaningful and valuable to the one who is dying, their family members and community. The value of embracing diversity in cross-cultural health care can never be underestimated: it can make a difference to the quality of life for the one who is dying by enabling them to die with dignity as a whole human being.
The diversity within BRFN was expressed by Voice 9 who spoke to the blending of Mi’kmaq Traditional Ways with Roman Catholic customs:
My mother was a staunch Catholic. One day I brought her out to Stone Bear. She had a great day. We went for a walk through the forest. She said, “You need to have a bench to rest on,” so I built this bench and put it here, where she stopped for a
161 rest. She enjoyed Stone Bear. She experienced a real connection to Traditional Ways when she was here. She saw the beauty in it. When my mother died we did a Traditional Mi’kmaq Walk to the Church. Drummers were playing. When we entered into the church we did a traditional Catholic service.154
In describing his mother’s experience at Stone Bear, Voice 9 revealed a basic tenet of
Mi’kmaq culture. Specifically, the walk through the forest enabled his mother to connect with the land in a new and unique way.155 According to Voice 9, his mother’s relationship with the land began to take shape almost immediately. This relationship deepened while she was walking through the forest: “She experienced a real connection to Traditional Ways.”156 As a result, she was able to live the rest of her life embracing both her Mi’kmaq Traditions and Roman Catholic customs. The community as a whole was able to embrace her spirituality and who she was as a whole human being on the day of her funeral when they honoured her with a Traditional Mi’kmaq Walk to the church followed by a customary Roman Catholic funeral service inside the church.
A second participant described her personal spiritual experience of blending her
Roman Catholic and Mi’kmaq traditions together in this fashion.
I was brought up Catholic. My grandmother was very much Catholic. I never learned anything about Native spirituality, it just wasn’t, I just wasn’t taught anything about it, but I guess the impact started to. I just learned about the church….I’m a spiritual slack right now but anyway…we used to have a lunch hour, a whole hour so I would go for a walk, and I would walk back to the reserve and the fire pond back here that’s kind of the pit stop and I remember one day I was
154 Field Notes, Voice 9, Stone Bear Retreat, Bear River First Nations, Bear River, Nova Scotia, August 2011.
155 Sable and Francis, 18.
156 Field Notes, Voice 9, Bear Stone Retreat, August 2011.
162 walking, in the sky it was a bit breezy, and some cloud and some sun, it was back and forth, it was beautiful, anyway and you know whether it be our imagination or whatever it is, whatever you experience you experience it, it is what it is, it is real to you, no matter what it is, ummm, going back to reserve umm I looked up and for me of course being Catholic to me in the sky full of clouds I was praying the rosary, it was like the outline of Mary in the sky. That was a wild moment, but you know you interpret it a little bit like maybe whatever, so I left the fire pond and I remember I was praying the historical mysteries. I was praying the Lord’s prayer, I was standing there and the sun was kind of comforting as I could hear this noise and I looked up and there’s three eagles, three eagles, right there and it was like, “Oh my God,” moment, again that was confirmation for me that I can embrace both.157
This participant clearly describes the broadness and the networking of relationships in her spiritual life. She explains how they guided her to enhance her spiritual life by embracing both her Mi’kmaq Traditional Ways and Roman Catholic customs (i.e. sun, clouds, rosary, fire pond and the three Eagles). Voice 1 was also able to enhance her spiritual life by weaving her network of relationships, (a key principle in Mi’kmaq culture).
Voice 1 was also able to elevate her spiritual life by weaving her relationships with her Roman Catholic theology. Let me explain. As mentioned earlier the Eagle is integral to the spiritual and cultural life of the Mi’kmaq, so seeing three Eagles flying above her was a rich spiritual experience. According to Voice 1, this spiritual experience was magnified when she was able to tie the symbol of the three Eagles to one of the most central doctrines of the Christian Church: the Trinity (Father, Son and Spirit). She described this unique experience as influential on her spiritual life and growth: it gave her the permission she needed to embrace both her Mi’kmaq and Christian traditions.
157 Transcript, Voice 1, Focus interview, Talking Circle B, July, 2012.
163 According to Mi’kmaq Traditional Ways, this spiritual experience and enlightenment depended on Voice 1’s ability to have a respectful openness towards being in relationship with the various forms of energies in this world. To appreciate this spiritual experience to its fullest, Voice 1 was required to respond to the energies correctly. Her response depended on her relationship with each energy source.158 The fact that she responded to the energies by welcoming them into her life indicates respect.
The blending of two very rich spiritual and religious traditions was fruitful for both Voice 9’s mother and Voice 1: it allowed them to enhance their spiritual lives and growth. They gained comfort and confidence in their spiritual lives when they realized they could embrace both traditions in an honourable and respectful fashion. They accepted and embraced the diversity within their own spiritual lives thereby demonstrating they were able to change their own relationship within their innermost self—an act of hospitality. According to Henri Nouwen, it is when we become more sensitive to our own inner movements that we are able to have a more open attitude toward our fellow human beings.159 By extension when we become more sensitive to our own inner movements we develop a more open attitude toward our God or spiritual resource(s).
158 Sable and Francis, 24.
159 Nouwen, 79.
164 The significance of spirituality was emphasized by four other participants who discussed moving away from their Christianity to get in touch with their traditional
Mi’kmaq spirituality. Beginning a journey back to Mi’kmaq Traditional Ways requires community members to explore their Mi’kmaq roots. According to some participants this exploration has allowed some to grow in their spirituality. Moreover, it has allowed them to reclaim their identity as a First Nations and Mi’kmaq person. The journey to reclaim Native spirituality, however, has not been easy. In fact, some participants acknowledged that the search for their Native spirituality has left them in a state of transition:
…Others have chosen to take a different route and have begun a journey back to the Native Traditional Ways in order to reclaim their identity. We must respect these people for their choice they have made, we are all journeying moving forward in faith and once again we have found ourselves in transition as we try to reclaim some of our past in Native spirituality.160
This participant acknowledges that spiritual diversity is alive and well amongst the
Mi’kmaq.
(f) Theme 6: Kin Structure and Family Visiting
Four participants made it clear that failure to appreciate the world view and kin structure of the Mi’kmaq has created a division between the three cultures of care in health care. Two participants said the lack of awareness of their kin structure has led to tension between the three cultures of care. The number of people who gather around the death bed for example, has not always been understood or appreciated or
160 Transcript, Voice 2, Focus interview, Talking Circle B, July, 2012.
165 welcomed by health care facilities or staff, or other patients and/or their family members.
Voice 1 raised the issue of defining the word family. If family for example, is defined as “immediate,” this places restrictions on who can and who cannot visit the sick and dying in hospital. These restrictions are not always conducive to the Mi’kmaq world view. They reduce opportunities for the terminally ill to fully experience their spiritual and cultural traditions: both the immediate and extended family members provide spiritual support to the one who is dying. More importantly, within Mi’kmaq communities every community member is family. Voice 1 addresses the conflict that may arise when the understanding of the words “immediate family” differs:
…I think that if we have a loved one in the hospital that is dying there could be 20 people that want to be in the room, maybe or maybe not, umm, not having restrictions or something telling you that you are not allowed because you are not immediate family. We talked about that before, what is immediate family, you know. In our communities we are all family. So you know, for example, if I was dying in hospital and Voice 3 wanted to come see me, we grew up together, we’re not blood relations but were sisters in so many ways. You know, so you are related, you *interviewer+ mentioned that too, that our sense of family isn’t your immediate family.161
Being connected to one another is a central tenet in Mi’kmaq kin structure. At end of life both the immediate and extended family members take on different roles.
Immediate family members, in addition to providing support and emotional comfort, will work closely with health care professionals to ensure their loved one is physically comfortable. They may also act as the spokesperson for the one who is dying. On the
161 Transcript, Voice 1, Focus interview, Talking Circle B, July 2012.
166 other hand, extended family members will attend to the spiritual and cultural needs of the dying by Drumming, praying or sitting in silence. Since the Mi’kmaq believe
Drumming will assist the terminally ill to connect with the Spirit and the energy that will guide them on their journey into the Spirit World, it is an important ritual in end of life care.
Extended family members also care for immediate family members by ensuring they are fed physically and spiritually. It is not uncommon to see extended family members bring in food to nourish immediate family members. Spiritual rituals of
Drumming, praying and sitting in silence are for the benefit of immediate family members: spiritual needs are also attended to by the community at large who may be praying at the Sacred Fire. Knowing that the community is praying can bring a great deal of comfort to the one who is dying and their family members.
The gathering of immediate and extended family members around the death bed reaches far beyond a physical presence. It can assist the terminally ill to find meaning and hope in the midst of living with dying or actively dying. As identified earlier in this chapter, it can also give the dying and their loved ones the opportunity to pray their goodbyes to one another in a meaningful way. The terminally ill will know they are not alone in their journey: they are loved and cared for by family, friends and their spiritual resources, whether that be the Creator or God or Spirit or any other spiritual energies in the world that maybe named or nameless.
167 The gathering of family can allow the one who is dying to feel a sense of control.
In addition, the presence of family and familiar customs offers a sense of normalcy.
Spiritual rituals and customs can relieve stressful situations and/or free the terminally ill from stress. As mentioned earlier by one participant, the Sweet Grass Ceremony can bring a sense of the familiar back into the lives of the dying. The smell of home cooked meals brought into their rooms can evoke the familiar, especially if the terminally ill are able to eat or taste some of the food.
Assembling family members around the death bed gives family members the opportunity to reconcile their differences with the one who is dying. This is extremely important to the Mi’kmaq because they believe that reconciliation will afford the one who is dying the opportunity to travel to the Spirit World in peace. Finding meaning and purpose in the midst of living with dying or actively dying is integral to spiritual healing and the overall well-being of the terminally ill. The gathering of immediate and extended family members around the death bed attends to the spiritual and emotional well-being of both the dying and their loved ones.
Voice 4 described the role and responsibilities of extended family members as the following:
…it is taking care of people, and you take care of those who are first family, immediate family circle, ten people in the day and night and they have been singing and praying all those days they need to be taken of, so they need to be nurtured…I was not sure what I could offer my cousin…but I remember certain times that we had drummed because that was really important and so I brought my drum and so there are certain times that it was just quiet and then there were certain times when it was ok to, you
168 know, to drum for her and its part of connecting to Spirit and energy, and helping her on that journey…162
According to Voice 4, immediate family members need to be nurtured first. Extended family members attend to their needs by taking the lead in providing spiritually and culturally appropriate rituals.
Chief Jasen Sylvester Benwah (Mi’kmaq historian) has examined writings by the early Jesuits who wrote extensively about the customs and rituals at the death bed scene, as for example, in the following.
The sick man having been appointed by the Antmoin [medicine authority] to die, as we have said, all the relations and neighbors assemble and, with the greatest possible solemnity, he delivers his funeral oration: he recites his heroic deeds, gives some directions to his family, recommends his friends: finally, says adieu (farewell, goodbye, valediction).163
The dying man takes time to reflect on his life, to inform his family of his wishes, to speak to his own legacy, and to say his goodbyes to his family and friends.
Interestingly, all of these steps are incorporated into the spiritual care plan that spiritual care practitioners develop for end of life care with the terminally ill today. In fact, professionally trained spiritual care practitioners take a great deal of time in assisting the terminally ill to reflect on their lives so they can speak to their accomplishments and/or regrets, and to open up good communication with their family
162 Transcript, Voice 4, Focus interview, Talking Circle B, July, 2012.
163 Jason Sylvester Benwah, Historical Mi’kmaq Death customs and Rituals, August 8, 2013. Accessed November 2, 2013. http://www.benoitfirstnation.ca/mikmaq_article8.html
169 and friends to explain their wishes for end of life care. Each step can assist the dying to express their most inner thoughts and feelings. These spiritual exercises free the terminally ill of any burdens or stress. Moreover, they can help them move towards acceptance or a sense of peace as they learn how to live with dying and move towards active dying.
In the observations made by the Jesuits, the act of saying his goodbyes to his family and friends enabled the dying man to give his family the permission they needed to let go of him. This moved the family towards acceptance of his impending death. In many ways he was able to give his family a blessing by guiding them through their own emotional and spiritual turmoil: in effect the freedom to express their grief openly. By partaking in these spiritual exercises and traditions, the family drew on past coping and managing skills as they worked their way through the grieving process. The responsibilities of the dying man did not stop here: he hosted a great celebration and feast (Tabagie) with all his family and friends. The feast played a significant role in attending to the spiritual and cultural needs of the dying man and his family members.
For example, they offered prayers of thanks. Giving thanks can have therapeutic value for family members: it can afford them the opportunity to reflect on the meaningful relationship they have had with the one who is dying. Open communication between the one who is dying and their loved ones can give each party the opportunity to speak words that have never been spoken before and/or to ask for forgiveness and/or to give forgiveness.
170 The feast plays an important role in the grieving process: it provides a hospitable place where family members can express their pain and sorrow. Family members feel they are not alone in their journey. Gathering together in community and around the death bed engenders a warm and nurturing sense of belonging. In Mi’kmaq tradition, it is during this ritual that family and friends may reconcile differences with the one who is dying. In addition, it enables the one who is dying to go in peace to the Spirit World.
So if the dying man has some supplies on hand, he must make Tabagie [great celebration and feast] of them for all his relatives and friends. While it is being prepared, those who are present exchange gifts with him in token of friendship…Having banqueted they begin to express their sympathy and sorrowful Farewells, their hearts weep and bleed because their good friend is going to leave them and go away; but he may go fearlessly, since he leaves behind him beautiful children, who are good hunters and brave men: and good friends who will avenge his wrongs, etc.164
In this citation from the Jesuits, we understand the dying man was given the gift of reconciliation when he could “go fearlessly.”
Mi’kmaq spirituality and culture is complex. Spirituality cannot be defined simply as the worship of a higher being or holding certain ceremonies. It is wrapped up in language and songs, in their stories and dances, in how people live and interact and who or what they honour.165 In other words, spirituality is integrated into everyday life, including the process of death and dying and their kin structure. Having some insight into Mi’kmaq spirituality and culture can assist spiritual care practitioners to validate
164 Benwah, Death Customs and Rituals, 1-2.
165 Mi’kmaq Association for Cultural Studies, 1-5.
171 Mi’kmaq spiritual and cultural needs at end of life. Excellence in spiritual care-giving demands an ongoing commitment to a practice of hospitality which encompasses an ethics of care and respect for the other in his or her totality as a human being.
172 Chapter 5: Conclusion: The Critical Theme of Ancient Biblical Hospitality: A Model to Guide Best Spiritual Care Practices
5.1 Introduction
Working within the spiritual and cultural context of the terminally ill is essential to increasing their quality of life (QOL) and enabling them to die with dignity. Spiritual and cultural influences can significantly impact those who are dying and their reaction to the dying process. Fostering a trusting and meaningful relationship with the terminally ill and their loved ones is vital to their care. The present work proposes linking the virtues of biblical hospitality and Mi’kmaq cultural hospitality to create a model to guide best spiritual care practices in cross-cultural health care settings, looking specifically at
Annapolis Valley District Health Authority. The implementation of this model of care will allow spiritual care practices to be transparent and holistic. It will cultivate a culture of spiritual care-giving that is welcoming, sensitive, respectful and attentive to the spiritual and cultural needs of many patients and their loved ones, including the terminally ill.
Clinically trained spiritual care practitioners and community clergy who come from the Christian tradition are well aware of the significance of being in relationship with one another, with community and with God. But this suggested model of spiritual care will help them develop a new sense of the significance of the relational aspect in spiritual care and counseling. It will facilitate spiritual/emotional healing and growth in cross-cultural health care settings. The model is based on the following six tenets:
173 Welcoming the other is the process of receiving the terminally ill into our lives. It requires creating a safe and open space in our hearts whereby our fellow human beings know we are inviting them to a new relationship. The conversations in which spiritual care practitioners engage cannot be manipulative; they must be sincere. Our purpose is not to persuade the other that our God or spiritual resources and ways are the only possibilities. Rather, we must create a safe and welcoming space so the terminally ill can find their own God or spiritual resources or ways as they try to make sense of death and dying.
Receiving the terminally ill as the “guest within one’s heart” is an attitude that can be expressed in a variety of ways. First, spiritual care practitioners need to realize that the terminally ill are not properties: they are gifts to cherish and care for. These guests have come into our lives so that we can respond to their needs. One of the most difficult tasks for spiritual care practitioners is to assist the dying to grow in their spirituality and humanity allowing them to move on in their life and spiritual journey with peace and dignity. To receive the dying, spiritual care practitioners must welcome them into the home of their hearts.
Respecting denotes humility and the desire to be in relationship with the other. It is also the process of creating an open dialogue so that the respective life experiences, beliefs, values and traditions of the caregiver and of the terminally ill become primary and valuable sources for them to grow and mature in their own spirituality. Mutual trust must comprise the basis of this relationship: the one who is caring and the one who is
174 receiving care must become present to each other by recognizing their common struggles. In welcoming and receiving the dying, spiritual care practitioners show respect to the Mi’kmaq and other populations.
Relational is the ongoing process of building a genuine, trusting and mutual relationship with the other. It requires spiritual care practitioners to reveal and/or affirm the life experiences of the terminally ill, along with their own insights and convictions. For some cultures this can be experienced with both animate and inanimate objects.
Reciprocating relationship is formed by receiving the terminally ill in their totality and thus discovering the gifts received from the dying. Traditionally, if respect is shown to Mi’kmaq they reciprocate with respect, making the relationship fluid. Spiritual care practitioners who can detach themselves from the need to be in control and who are receptive to what the dying have to reveal to them will discover that when they are received, their gifts become visible. Spiritual care practitioners are good hosts when they see the dying person not as the one who is needy but as the guest who will make a contribution to this relationship.
Embracing the other in his or her wholeness helps move the terminally ill towards some form of spiritual/emotional healing. When the terminally ill sense that the spiritual care practitioner is genuinely interested in knowing who they are, they can experience spiritual/emotional healing. By embracing the terminally ill in their totality, spiritual care practitioners can offer them a welcoming space with safe boundaries,
175 allowing them to reflect on their lives, to express and experience their spirituality and culture as they live with dying and move towards active dying.
Listening with the heart and ears is one of the highest forms of hospitality. Listening is not a technique as much as it is an art that must be developed. It promotes spiritual/emotional healing because it enables the one who is dying to become familiar with the journey he/she is on and who he/she is or is becoming in this journey. The art of listening links directly to reciprocal relationship because spiritual care practitioners can become students of the dying if they are open to learning from the wisdom, life and/or spiritual experiences of the terminally ill. When spiritual care practitioners listen with their heart and ears they can embrace the other in his/her wholeness.
Maintaining healthy boundaries is the responsibility of the spiritual care practitioner. The concept of spiritual hospitality makes it very clear that the relationship between the spiritual care practitioner and the terminally ill is not power or authority or
“owning” the other. Spiritual care practitioners are called to serve the dying and to create a welcoming space where that is possible. By so doing, spiritual care practitioners have a greater chance of moving the relationship towards one of greater mutuality.
Reaching out to the dying without being receptive or embracing them in their wholeness can lead to manipulation and/or the crossing of boundaries resulting in emotional, spiritual, physical or sexual abuse. Inviting the terminally ill into the life of a spiritual care practitioner means that one must do so without putting conditions on the relationship. If a spiritual care practitioner says, “You can be a guest in my heart as long
176 as you believe what I believe,” then a condition is placed on this relationship.
Consequently, this becomes an inhospitable act. The truest form of Christian spiritual hospitality is to receive the other without imposing one’s religious viewpoints or ideologies as a condition for love or friendship or care. Maintaining healthy boundaries also means respecting the decision of those who do not wish to receive spiritual care services, while leaving the relationship open in case the one who is dying and/or their family members decide to seek such services.
Applying these six principles of spiritual hospitality to best spiritual care practices will help spiritual care practitioners and other health care providers to become competent in identifying the full range of issues commonly faced by patients and their loved ones. It will guide them to be more holistic in their care and assist them in understanding and recognizing the unique influences of spirituality and culture on a patient’s behaviour, attitude, preferences and decisions about end of life care.
Incorporating spiritual hospitality into best spiritual care practice is neither lateral nor unilateral in its application. It is circular. In many ways, the application of spiritual hospitality is like throwing a stone into still waters and watching the ripples spread.
Once spiritual hospitality is dropped into the relationship between the spiritual care practitioner and the one who is dying the relationship experiences a ripple effect. Out of the act of welcoming for example, flows receiving; receiving turns into respect; a reciprocal relationships will often surge from the act of being respected because the one who has received respect will return it.
177 Each time another ingredient of hospitality is added to the relationship, the opportunity for the relationship to deepen increases. Deep relationships are often built on trust and confidence, making these qualities vital to the therapeutic relationship between the spiritual care practitioner and the one who is dying. A deep and trusting relationship can create a safe place for the terminally ill to reveal issues they might be grappling with as they face their own mortality. It can assist them to discover a positive and constructive manner to deal with their concerns leading in turn to spiritual and emotional healing. Moreover, when the terminally ill are given the opportunity to deal with their emotional and spiritual issues in a manner that enables them to experience and/or express their spiritual/cultural traditions, opportunities are created to increase
QOL at end of life care.
Resolving issues can help the terminally ill discover a sense of peace and freedom from burdens they may be carrying. Having a chance to release these burdens within their own familiar traditions, beliefs and values system can allow the terminally ill to die with dignity. When we think back to an earlier example, the failure to support the elderly Mi’kmaq man who was holding Sweet Grass in his hands while he was dying took away his dignity as a whole human being. In his case, as in many other cases, the health care system failed to provide him with either holistic or person-centered care.
Of course, clinically trained spiritual care practitioners are equipped with a very specific set of skills, gifts and knowledge. Their training, education and experience are extensive. Spiritual care and spiritual care programs in Nova Scotia however, must
178 liberate themselves from dominant traditions by becoming more inclusive in their understanding, concerns and methods of providing spiritual care. Programs must become more trans-cultural in their perspective, open to learning new ways of caring for the diverse populations that live within the service areas of local health care authorities. Enabling others to mature in their own spirituality and humanity by honouring their traditions, beliefs and values of others will make a significant difference in providing holistic and patient centered care, especially increasing QOL at end of life care.
Clinically trained spiritual care practitioners play a unique role on health care teams.
In addition to providing spiritual care and counseling, they understand their role to include taking the initiative to actively reach out and engage themselves in a relationship with those who need caring and counseling. By incorporating spiritual hospitality into their daily practices of spiritual caring and counseling, spiritual care practitioners can become better facilitators of spiritual/emotional healing and growth because they will become more effective in ensuring that the terminally ill are given every opportunity to become the persons that they are intended to be according to their spiritual/emotional given potentials.
Simply stated, clinically trained spiritual care practitioners can strengthen their conceptual base and methodologies by drawing on the correlations between the ancient biblical understanding of hospitality and the Mi’kmaq cultural understanding of hospitality, as this will lay the foundation for holistic, inclusive, transforming and
179 transparent care. Hopefully incorporating spiritual hospitality into best spiritual care practices will:
Bridge the gap between three cultures of care;
Develop genuine and trusting relationships between the spiritual care practitioner and the one who is dying and/or loved ones;
Embrace the other in his/her totality;
Increase understanding and communication between the spiritual care practitioner and the one who is dying and their kin;
Ensure that the high quality of care provided by spiritual care practitioners adds therapeutic value;
Ensure that spiritual care programs manage their activities, resources and functions in a manner that is consistent with their approach to care delivery by attending to the spiritual and cultural needs of the other.
While this model of spiritual care-giving encourages the welcoming of others and holistic care, it does not imply uniformity of spiritual care-giving practices. Spiritual care practitioners will continue to differ in how they deliver service. The same applies to spiritual care programs. Yet, this model of spiritual care practices will encourage spiritual care practitioners and the programs under their watch to become more open as they learn to embrace the other in his/her totality as a whole human being.
It is important to remember that simply because a person is identified with a particular ethnic group or practices or a certain religion does not necessarily mean he/she holds beliefs commonly associated with that ethnicity or religion. It is not uncommon at Valley Regional Hospital for example, for patients to identify themselves
180 as Christian and say they believe in God or a Higher Power: yet they do not necessarily follow Christian traditions or affiliate themselves with anyone particular church. In fact, in my role as Coordinating Chaplain I heard some hospitalized Christians claim they have not lost faith in their spiritual resource166 or God but they have lost faith in the institution of the church. Spiritual care practitioners, therefore, must be open to the various spiritual experiences, expressions, and cultures to serve the dying in their wholeness.
The model of best spiritual care practices proposed here is built on the understanding of the health, the illness and bereavement experiences (anticipatory grief, complicated grief and grief) of the terminally ill. It is influenced by the role played by spiritual care practitioners in relieving spiritual and/or emotional suffering and how this can lead to improving QOL at end of life. It aims to guide the process of providing spiritual care to the terminally and/or their loved ones through both the illness and bereavement experiences immediately following death in the health care setting.
The participants in this pilot research project identified several issues that separated them from health care providers, including spiritual care practitioners: lack of understanding communication, cultural awareness and of cultural competency. It is important, therefore, that this model be designed to improve the Mi’kmaq experience, and by the same token, the experience of other populations of care in local health care
166 Some hospitalized patients who claim to be Christians prefer not to use the word God, and will sometimes use the term “spiritual resource” to replace the word God.
181 settings. The terminally ill and their family members must be able to seek assistance from spiritual care practitioners, and other health care providers in addressing their issues, expectations, spiritual and cultural needs, hopes and fears.
Providing spiritual care in today’s health care system demands a process for creating “wanted” change that is based on:
The development of a therapeutic relationship between the spiritual care practitioner and those who are living with or dying from chronic illness and their loved ones as a family unit and/or community. The relationship between parties evolves over time to be genuine, trusting, meaningful and valuable.
The evolution of a therapeutic process evolves (spiritual/emotional healing, spiritual wholeness) through a series of therapeutic encounters between the spiritual care practitioner, those who are dying and/or their loved ones.
The understanding that spiritual care will attend to the spiritual and cultural needs of the one who is dying.
The ability of spiritual care practitioners to affirm the terminally ill and their loved ones in their totality: spirituality, culture, values and choices throughout this therapeutic relationship.
The development of cultural competency as an ongoing journey of commitment and active engagement through the process of cultural awareness, knowledge, skills, collaboration and encounter.
The use of cultural competency to deliver individualized and/or community health care services within the spiritual/cultural context of the patient while avoiding stereotyping.
The following key elements of cultural and spiritual competency are also required if spiritual care practitioners wish to commit to a practice of spiritual care-giving rooted in hospitality, one that is both holistic and transparent in its approach:
182 Informed spiritual care practitioners must have the desire to learn and incorporate biblical hospitality into their daily practice. They must have the desire to know how the practice of hospitality can advance spiritual care practices in a Canadian health system and society that is continually evolving.
Informed spiritual care practitioners must want to actively engage in and commit to becoming culturally competent. The gift of humility is significant in this process: the humble spiritual care practitioner will have a genuine willingness to discover the uniqueness and worthiness of the other: what he/she is thinking, feeling and needs.
Informed spiritual care practitioners will also have the desire to embrace the compatibility of ancient biblical understanding of hospitality and Mi’kmaq cultural hospitality to shape the therapeutic relationship.
Informed spiritual care practitioners will want to commit to life long learning that will enhance health care services, including QOL at end of life care (e.g. active engagement in and perhaps time spent in another culture).
To give some specific examples of the final point, the Tatamagouche Center, located in Tatamagouche, Nova Scotia provides a variety of programs designed to increase cultural awareness of a variety of health care professionals. Building relationships with local communities can also enhance lifelong learning. More formal educational opportunities can be sought through community colleges, universities, through the Canadian Spiritual Care Association, conferences and self-education.
Spiritual and cultural details are significant to end of life care. In fact, it would be advantageous for spiritual care practitioners to include a cultural assessment as part of their initial and ongoing patient assessment: this would permit them to gather information on the terminally ill person’s spiritual and cultural beliefs, values, meaning of life, spiritual experiences and expressions as these relate to his/her understanding of
183 and response to their illness, living with dying and active dying. Since each community is unique, a cultural assessment can be designed in partnership with other health care professionals and community/spiritual partners. The cultural assessment should be designed in a manner so that it can be conducted by any health care provider. At the same time, the assessment tool should be modified to meet the needs of the health care provider’s discipline, interests and therapeutic goals. For example, spiritual care practitioners and nursing will likely need entirely different tools to honour the one who is dying. Yet all assessment tools must focus on the uniqueness of the individual patient and/or loved ones and/or community.
This represents a pilot research project, conducted by a novice researcher. Needless to say, the research work is incomplete. Yet the findings are substantial and call for more research. The finding of a correlation between the understanding of ancient biblical hospitality and the Mi’kmaq cultural understanding of hospitality is particularly fascinating. As Canadian society evolves, spiritual care practitioners need to manage the shift in the spiritual and cultural needs of those they are called to serve. More importantly, it is critical that spiritual care methods and programs establish spiritual and culturally appropriate and effective care so that opportunities to increase QOL for the terminally are a given.
It is true that this new model of care is not without its challenges, for example, financial resources, potential tension from some community spiritual/religious leaders, individuals and communities, time demands for education and the need for measurable
184 results. As leaders in health care however, spiritual care practitioners must be intentional in recovering and incorporating spiritual hospitality into their daily practices of care and counseling in order to promote holistic care and patient centered care, to increase QOL at end of life, to ensure inclusivity and to embrace others in their totality as whole human being. There is much work to be done in advancing this model of care.
Equally important, there is more work to be done in fostering relationships with
Aboriginal people and their communities in Nova Scotia so that spiritual and cultural programs in health care can meet their spiritual and cultural needs. This work needs to be extended to other populations so the spiritual and cultural needs of the terminally ill and their loved ones can be attended to in a fashion that will honour their beliefs, values and traditions.
5.2 Implications for Patients/Loved Ones, Spiritual Care Practitioners and other Health Care Professionals
The research is vital to increasing quality of life at end of life care at the local level. The model of spiritual care that has been presented here creates a vision of best spiritual care practices and spiritual care programs that will respond to the spiritual and cultural needs of many who seek spiritual care during hospitalization. Incorporating spiritual hospitality into the everyday practices of spiritual care is necessary for spiritual care practitioners and other health care professionals who are responding to the needs of patients in a rapidly changing world. The research aims at a holistic model of spiritual care and counseling. It also strives to liberate the terminally ill from their emotional and spiritual suffering while empowering them to find their own spiritual journey.
185 To stay relevant, spiritual care practitioners serving in cross-cultural health care settings must be open to the future, especially to the spiritual differences of others. In a world of constant change, spiritual practices must be guided by an evolving vision. My purpose here has been to delineate a guiding model of spiritual care and counseling that will assist clinically trained spiritual care practitioners and other health care professionals to grow in ways relevant and responsive to the ongoing changes in our society. It does so by correlating my interpretation of ancient biblical hospitality with
Mi’kmaq cultural hospitality. It is my hope that the model will suggest a path for the future of spiritual care and counseling. The model will have the following implications.
(a) Implications for Patient/Loved Ones
Their experience of an illness, living with dying and active dying will change;
They will seek assistance from spiritual care practitioners who they believe will be knowledgeable, skilled and supportive in addressing their issues, expectations, spiritual and cultural needs, hopes and fears;
They will identify and assess their existing issues, concerns and opportunities for spiritual growth;
They will share information about their illness and bereavement experiences as they so choose to do;
They will establish their own goals for spiritual and cultural care;
They will obtain, experience and express their own traditions, beliefs, values and rituals of spiritual and cultural care;
They will appreciate the value/outcomes of the therapeutic intervention.
(b) Implications for Spiritual Care Practitioners
They will develop a therapeutic relationship with the terminally ill and their loved ones that revolves around genuineness, trust and embracing the other as a whole human being;
186 They will assist in the evolution of the therapeutic process through a series of encounters (formal and informal) with the terminally ill and their loved ones;
They will understand that spiritual care has the potential to benefit the terminally ill according to their rich traditions, beliefs and values;
They will affirm the traditions, beliefs and values of the terminally and their love ones, including their choices;
They will identify and respond to the complex/multiple issues of the terminally ill and their loved ones including consulting with other team members and/or health care providers. Failure to do so can compound the issues and lead to increased distress and further complications;
They will create a focused spiritual and cultural assessment tool to assist in developing insights into the terminally ill and their understanding of disease and the dying. Questions that are family or loved one focused can be added.
(c) Implications for Other Health Care Providers
They will understand that spiritual and cultural care comprises a vital part of patient/family focused care. Since most patients are part of a family and/or circle of loved ones, when care is provided they must be treated as a unit. All aspects of care must be provided in a manner sensitive to their personal, spiritual and cultural beliefs, values and traditions. Care must promote the development of their spiritual life and journey so that they can prepare to deal with disease and dying;
They will use a general spiritual and cultural assessment tool to develop some general insights into the patient’s understanding of their illness and death. Again questions can be added for loved ones. This may help to understand family dynamics and/or cultural needs. The assessment may also give nursing and medical personnel insight into the behavior of patients, their responses to pain and expectations of treatment. It may assist in pain and symptom management, including the provision of pain medication on a routine basis as opposed to patients asking for medication.
As the service area of Annapolis Valley District Health Authority becomes increasingly diverse, health care providers, including spiritual care practitioners, must work together to establish services that will meet the needs of the patients. Spiritual and culturally
187 appropriate care enhances patient/family focused care. It also allows for the delivery of service to be individualized. It avoids stereotyping and can create a trusting and genuine therapeutic relationship between the spiritual care practitioner and the one receiving care.
(d) Implications for Future Research
While this pilot research project is a good beginning it represents a springboard for further dialogue with and research into Mi’kmaq communities and other populations about spiritual and cultural needs at end of life care. Lack of understanding, lack of communication, and lack of respect have created barriers to quality of life at end of life care within the service area of Annapolis Valley District Health Authority. This echoes findings from other research studies across Canada. Unique to this study, however, is the correlation between the ancient biblical understanding of hospitality and the
Mi’kmaq cultural understanding of hospitality. Both points call for more research.
In addition, implementing a new model will bring new challenges and questions.
Is adding a spiritual and cultural assessment tool to patient care one more stressor for an over-taxed health care system? How does education for spiritual and cultural care begin? Who is responsible for it? How can the model of spiritual care be implemented?
How can it be integrated with the spiritual care offered? How can existing community resources be more fully integrated into this model? These questions can only be answered through further research.
188 5.3 Limitations of the Research
Since this pilot project was subject to deadlines for a Doctorate of Ministry Degree, at
Acadia Divinity College, Acadia University, time was limited in terms of going back to the research site for individual and/or focus interviews following Talking Circle A (informal interview) and B (formal focus interview). This prevented further data collection and clarification on some topics raised and/or words used by the participants.
The research design (qualitative; grounded theory research ethnography) and methodology (focus group interviews, conducted within the Mi’kmaq tradition of a
Talking Circle) was similarly limited due to academic time schedules. It did not allow a longitudinal study at the site or more input from the participants in the focus group or individuals who may have wished to participate individually as opposed to a focus group. The focus group interviews were conducted over a relatively short period of two months. That said, data collection has been ongoing informally and formally for approximately ten years. In addition, research findings and written thesis were sent back to the participants for their comments. No further comments were given.
The reported outcomes depended on a few participants in the focus interviews.
According to Mi’kmaq tradition, participants in Talking Circles can choose to speak or be silent. Some participants who attended Talking Circle A for example, chose to be silent.
In future, research should be carried out for a longer period, giving opportunity for more focus groups and individual interviews.
189 Implications
The information gathered identified several barriers that contribute to gaps in services and poor outcomes for QOL at end of life care: lack of communication, lack of understanding and lack of respect. More importantly the finding of a correlation between ancient biblical hospitality and Mi’kmaq cultural hospitality suggests how a model of best spiritual care practices can be created.
5.4 Conclusion
The research provides a snapshot of the concerns of one cultural group who mention poor outcomes in QOL at end of life care. It also captures a fascinating correlation between the ancient biblical understanding of hospitality and Mi’kmaq cultural hospitality. The six common tenets can contribute to best spiritual care practices in cross-cultural health care settings by creating the foundation for a genuine and trusting relationship. The research also demonstrates how these six principles of hospitality can close the gaps between three cultures of care while promoting better outcomes for QOL at end of life care.
190 Appendix I: Jenu
A man of the People takes his wife and his little son trapping. It is fall. They go far, far up a river to the northwest. They are going to live all by themselves in the forest along this river. They are going to live there until the spring comes, then they will go home.
There is a nice place to make a camp. They stop there. The man hunts. The woman fixes the food. The man traps. The woman prepares the furs and looks after the little boy.
So, one day the woman is outside. She is getting firewood, picking up all the dried sticks and branches. She pauses. Something is coming through the brush, she can hear it. It is coming straight towards her, and it is big. Big like moose or caribou. Big like a bear. This woman keeps her eyes right on that place and slowly, slowly, she begins to move backwards towards the wigwam.
The noise comes out of the forest. Now she sees what it is, and she is filled with horror. It is something taking the size and form of an old man. This old man is naked, his face is hideous, his lips and shoulders look as if they have been gnawed away. He has little pack on his back.
The woman knows what is taking this shape, and she is desperately frightened. It is Jenu. It is the Cannibal Giant. He will kill her. He will eat her. He will kill the child and the man too. So, this brave woman decides to try to save them all. She has no Power, so she will try kindness.
She runs towards the old man, crying, “Father! Father! Where have you come from, teli-pkittu’n, after being gone so long. Come inside! Come.”
She takes him into the wigwam, leading him by the hand. “You are tired Father, “she says. “Your clothes are worn. Take these nice soft new clothes and put them on.” She gets him some of her husband’s things. Jenu puts them on. She sits down.
Still he says nothing. His face is fierce and angry.
The woman holds onto her fear, so that it will not come out of her mouth. She asks if Jenu is hungry. Still she calls him father and talks to him while she makes a meal, telling him how glad she is. She is happy he has come. She tells the little boy not to pass between his Grandfather and the fire, so that Jenu will not be touched or disturbed.
191
After a while the fire gets low. The woman must go outside to bring in her firewood for the night. Jenu rises. Jenu comes out after her. “Now,” thinks the woman, “now I am to die. Now he is going to kill and devour me.” Jenu asks for the axe. It is the first time he had spoken. He asks for the axe and this frightens the poor woman even more.
But Jenu takes the axe and begins to cut trees. He cuts trees with a fury. He cuts them like they were grass. Jenu has the Power. He cuts trees until there is a huge pile of wood. Politely the woman speaks to him: “Nu’, tepiaql puksukul, my father, there is wood enough.” Jenu lays the axe down. He walks into the wigwam and sits down again.
The woman also goes in. She goes in and sits near the door in deep silence. Jenu does not speak. The woman does not speak. She is listening for her husband; she is looking out for his return.
Now she sees him in the distance.
The woman slips out of her wigwam quickly. She stops her husband before he can enter, and whispers, “Jenu is here. He is in the wigwam. I am calling him ‘my father.’ He has not eaten us. He has cut wood.” The man nods. “I will call him father-in-law.”
Coming into the wigwam, the woman’s husband greets Jenu. “Njilj, my father-in- law, where have you come from? You have been away so long!” He pretends to be delighted to see him. And the fierce face of Jenu relaxes a little.
The husband starts to tell the old Jenu all the interesting things that have happened since they supposedly seen him last. Jenu listens, but he shows no interest. Food is given to him, but he doesn’t touch it. “Eat something my, Father,” urges the woman. Jenu eats a tiny bit. Then he lies down to sleep.
The hunter and his wife lie down as well, but they are too frightened to sleep.
All the next day Jenu never speaks. He stays fierce and sullen. The man sits with him, he does not leave his wife and son alone in the wigwam.
On the third day, the woman’s kindness begins to work on him. He calls her to him.
“Tu’s, my daughter,” he calls her. “Do you have any fat?”
Jenu says, “Melt it for me. Melt it and make it very hot.” So the woman puts the
192 white cakes of fat into her pot. She melts it and brings it to him boiling. And Jenu drinks it boiling. He raises the pot to his mouth and drinks it down.
Now the fat is making him sick. Jenu turns pale. Vomit comes from his mouth. He vomits the fat. He vomits garbage and rotten meat and he vomits up things too terrible to speak of. The smell is going to kill them. The man and the woman begin to shovel vomit out the wigwam.
Jenu is pale, but he is feeling better. He lies down and goes to sleep. And when he wakes, he asks for food. This time he is able to eat. “Tu’s,” he says politely, “put a screen between me and the fire. For I am full of ice, and the fire is hurting me.”
Now Jenu is so kind and polite, so familiar. They are not afraid of him any longer.
One day he calls the woman to him. “Daughter,” he says in a gentle voice, “have you got any fresh meat?”
“No my Father." There is only dried meat.”
So Jenu asks the man if there is a spring of fresh water nearby.
“No,” says the man. “There is one a half-day’s journey away.”
“Show me where it is. We must go to it. We will start tomorrow, and you will show me the way.
They prepare for the journey. The woman packs them some fat and meat. The man chooses several pairs of snow-shoes---a large pair for walking on light snow, and a smaller pair for walking on crusted snow. Jenu has snowshoes too.
In the morning the sun is coming up. They begin their journey, leaving the woman behind with the child. The hunter is surprised, the old man is very strong. The hunter is walking his fastest and the old keeps up with him without tiring.
At midday, they reach the spring. It is a very beautiful spring, and the snow is melted all the way around it. Jenu takes off his robes. The Power is filling him with the need to dance. He dances a Calling Dance around the spring. The water begins to rise and to fall. Something is coming. The water heaves as if a monster is there below the surface.
“E’e,” says the hunter, “there is a monster coming out of the water!” It was a huge taqtaloq. Jenu drags his body out and lays him dead on the bank. This was the male taqtaloq.
193 Jenu is dancing again. He calls up female taqtaloq. He kills her and lays her body on the bank. Now he begins to clean them. He cuts off their heads. He cuts off their tails. He cuts off their feet. He skins them, he guts them. Jenu takes all these things--- heads, feet, tails, guts and skins---and he throws them back into the spring to turn into little taqtaloq, little lizards. It is his Power which made taqtaloq into monsters.
The taqtaloq meat looks like bear meat. Each carcass weighs two hundred pounds. The man could not lift one of them. Jenu takes roots, he binds the two bodies together and straps them to his back. Now he says to the hunter, “Lead off. We will go home.”
The hunter is going fast, but Jenu with his load is going right on his heels.
“Can you not run faster?” he asks the man. The hunter shakes his head.
“Well,” says Jenu, “the sun gets low in the sky. If we do not go faster, the darkness will reach us before we reach the wigwam.” He orders the man to get up on his back, on top of the taqtaloq meat. Then Jenu begins to run.
Nipisoqnu’jul samtesskajl wikwa’sumukwekl, the bushes almost whistled as they flew through them. So Jenu carries the hunter, and they get home before sunset.
The man tells his wife what happened. She doesn’t want to cook such strange meat.
“Dress it and cook it for our guest,” says her husband. “But do not eat it yourself.” The woman won’t eat it, but the man tastes it. He says it looks and tastes like bear meat. The man eats a tiny bit and Jenu devours all the rest.
When it begins to be spring, something happens. Jenu has the Power. He says to the man and the woman, “In three days we have a visitor.”
This visitor is another Jenu. It is coming to do battle with the first Jenu, and they must all prepare for its arrival. The sounds, the battle screams and the war cries of a Jenu can kill. There is great Power in them. The friendly Jenu tells the hunter and his wife to take their son and hide under the earth with their ears stopped up, so they cannot hear this noise. If they can live through the first yell, the others would not be as powerful.
“Once you hear my voice again, you will be all right,” says Jenu.
Before the third day comes, Jenu sends the woman outside. “Fetch for me the small bundle I had on my back when I first came to you. It is hanging on a tree. No one
194 has touched it. Open it. Take out and throw away anything you see in it which disturbs you. But bring me the smaller bundle inside.”
So the woman opens the pouch. There is a pair of human heels and legs inside. There are the remains of Jenu’s dinner from long ago. She throws them as far away as she can throw and brings the little package down at the bottom of the pouch to Jenu.
He unwraps it, carefully, carefully. Inside there are the horns of a jipijka’m, a Horned Serpent. Two horns. One is straight, one is forked. Jenu gives the forked horn to the hunter. It has two small branches. It is about six inches long.
“Take this,” says Jenu. “This is the only weapon that can kill this Jenu who comes. I will go out alone to fight him. You must all hide. But if you hear me call, ‘My son-in-law, come out and help me!’ then you must come to see me at once”
“I will,” says the hunter.
The sun comes up on the third day.
Jenu helps the man, the woman and the child into the earth and stops up the hole. They cover their ears and wait. The second Jenu is coming. The ground shakes. The two cannibal giants are fighting up there on the earth. And the new Jenu gives his terrible yell.
Even beneath the earth, with their ears stopped up, the sound of it nearly kills the man and the woman. It almost splits their heads. It makes them nearly crazy. But then their friend screams in reply, and everything is all right again. The heads stop ringing.
Above them the battle is raging. Trees are torn up by their roots and used as clubs, rocks are hurled in all directions, the ground is being ripped apart. The forest breaks and crashes down as they slam each other through it. Underground the humans hold their breath and wait.
Then they hear Jenu: “My son-in-law, come to my aid!” The hunter flies up through the earth. He sees the two Jenuaq. They have become as big as mountains. The enemy Jenu has pinned their friend down. He tries to stab a jipijka’m horn through his ear. But Jenu turns his head so fast from side to side, his foe cannot find his ear.
“Stab your horn in his ear!” cries the good Jenu to the man. The hunter is so small, the other Jenu cannot see him. The first Jenu says to the enemy Jenu: “You have no son-in-law to assist you, and ne’pliko’l! I am going to take your accursed life!”
195 So the man stabs his forked horn into the enemy’s ear. He stabs it in one powerful blow, and that jipijka’m horn goes right through his head and comes out the other ear. It is now the size of crowbar.
Quickly the hunter plants one end of the jipijka’m horns in the ground. It takes root, it grows into the ground and cannot be removed. He takes the other end and touches it to a tree. It sprouts, it grows around the tree, tight like a vine, and cannot be removed. The enemy is caught, he cannot get away. Jenu and the hunter are going to kill him. They are getting fuel, heaps and piles of wood. They are making a fire, the flames are very hot. They begin to cut up the prisoner. They begin to burn his flesh.
All his flesh must be burnt. All his bones must be consumed. If one little piece escapes, it will shape itself into Jenu once more. They would have to fight him all over again. So they are burning him all up, one chunk at a time.
Finally, all is done but the heart. This Jenu heart is made of ice. It is ice, so cold and hard that it puts the fire right out. Jenu and the hunter light the fire. They light it again and again, burning the heart. Each time the heart is a little smaller. Then Jenu strikes it with his axe. He cuts it into smaller pieces.
This heart melts and vanishes. The enemy is dead. Jenu and the hunter can return to the wigwam. They have the victory.
Now spring is coming. The hunter and his wife and son are packing up. They are going down the river to find the People. Jenu says he will go with them.
They have made a moose-hide canoe. They have covered it with moose skins instead of birch bark, this musu’lk. The river is running high. It is full of melt water and ice now that spring is here. They launch their canoes and go down very fast. The hunter leads the way in his birch bark canoe. Jenu follows him in the musu’lk.
They are crossing a wide lake. The river runs into it. The river runs out of it on the other side. In the middle of the lake, Jenu jumps. He dives under the thwarts of his canoe.
“What is happening?” calls the hunter.
“Look there,” says Jenu. “There, in the distance, where you see the rims of the blue mountains. One of my brothers is standing there. He can sense me from that distance. But he cannot see you or the canoes.”
Jenu will hide. He does not want to fight another Jenu. So the hunter tows his
196 canoe until the lake begins to empty out into the river again.
“I will get out,” says Jenu. He leaves the canoe. He will not go on water again. “Where shall we meet tonight? I will be there, I can go fast on the land.”
The man and the woman are paddling fast. The river is roaring downstream. But when they come to the campsite, they see smoke. It is Jenu. He is sleeping by the fire. He has come before them! And the next day the same thing happens, Jenu is in camp before them.
They journey south. Every day it becomes warmer. The heat hurts Jenu. He is weaker and weaker every day. By the time they reach the camps of the People, he is nearly dead. The whole camp comes out to look at him. He looks like man. His lips and shoulders are healed up. His teeth no longer frighten people. He is human. He is tamed.
But Jenu is ill. This is not his country, he needs the cold. The People send for the priest. Jenu is instructed. Jenu is baptized. He dies a Catholic. And kespi-a’tuksit here ends the story.167
167 Retold by Ruth Holmes Whitehead. Six Mi’kmaq Stories. Halifax: Nimbus Publishing and the Nova Scotia Museum, Province of Nova Scotia, 2010, 45-52
197 Appendix II: Funding per Capita
Table 1-2001-2 Funding Per Capita168
First Nations Number Mean Median Range SD Inuit Health Branch
Pacific (British 5 $890 $887 $233 $96 Columbia)
Alberta Not 1 N/A N/A N/A available
Saskatchewan 4 $738 $729 $469 $216
Manitoba 4 $610 $633 $104 $50
Ontario 4 $780 $728 $336 $150
Quebec 8 $847 $761 $894 $350
Atlantic 4 $544 $494 $324 $144
Total Average 30 $759 $734 $337 $144
168 Josee G. Lavoie, Evelyn Forget and John D. O’Neil, “Why Equity in Financing First Nations On- Reserve Health Services Matters: Findings from the 2005 National Evaluation of the Health Transfer Policy”, Canada: Health Care Policy, May (2007), 2(4): 83. http://www.ncbi.nlm.nih.gov/pmc/articles/PMCC2585472
198 Appendix III: Religious Code Stats at Valley Regional Hospital
33% 34% Mainline Christian Denominations (United Church, Presbyterian, Baptist Anglican, Roman Catholic)
Other 1 (None, Unknown, Jewish, Muslim) 2 3
33%
199 Appendix IV: Memorandum of Understanding
200 Appendix V: Letter to Band Council
February 20, 2012
Chief and Council
Bear River First Nations
Bear River, Nova Scotia
B0S 1B0
Dear Chief and Council
My name is Debra Orton. I live in Annapolis Valley, with my three cats, Ruah, Toasty and Shalom. I am an ordained minister with the United Church of Canada and I am presently serving as the full-time chaplain at Valley Regional Hospital, in Kentville. I am also a student at Acadia Divinity College, working on a Doctorate of Ministry Degree, examining the diversity of spiritual and cultural needs of the dying.
I am writing this letter to ask permission to work with your community to assist me in enhancing the Spiritual Care Program at Valley Regional Hospital. I am hoping that members of your community might help to guide me in setting up a spiritual care program that will be more attentive to the spiritual and cultural needs of your people who might be in hospital, including those facing end of life. My commitment to honouring the spiritual and cultural needs of others comes from my experience as an intern chaplain. I would like to share this experience with you.
Ms. Blessing (fictitious name) was a young First Nation’s woman who was brought to an urban hospital. She was away from her family, friends, and community. While in hospital she was diagnosed with a life threatening disease. Sadly, after sharing her spiritual experience with a health care professional, Ms Blessing was referred to psychiatry for a consult. I cannot imagine how painful this experience must have been for her. She has never left my heart or mind. Some First Nations Elders have taught me that this is not an unusual experience for your People. So I am coming to you to learn how I might best support your People in my role as Chaplain so that their spiritual and cultural needs can be attended in a supportive and comforting way.
I would also like to share with you the wonderful support that I have received from Frank Meuse. Since my arrival a year and a half ago I have had the pleasure and honour
201 to work with Frank. Members of both the stroke and palliative care teams from Valley Regional Hospital spent a day at Stone Bear. The purpose of this day was to introduce the health care team to some of the rich spiritual and cultural beliefs and values of the Mi’kmaw. Frank was also a guest speaker at a spring workshop held in Wolfville 2011. This workshop was designed to introduce health care professionals, volunteers, students and community clergy to the rich spiritual and cultural needs at end of life care. The presenters were a diverse group of spiritual leaders and community clergy. This workshop was very successful. Attendees went away from it feeling that the information they received would be helpful in both their professional and personal lives. It is my hope that we can continue to work together beyond my studies at Acadia Divinity College; providing ongoing education for example, in health care with regards to your spiritual and cultural needs.
Title of Project: Spiritual Care as Hospitality in End of Life Care: Honouring the Mi’kmaq in Death and Dying
Purpose of Research: The purpose of this research is to explore ways of supporting spirituality during end of life care for Bear River First Nations, Nova Scotia by identifying some of the rich diversity of beliefs, rituals and practical applications for spiritual care and comfort that emerge from an understanding of their spirituality, religion and culture.
After speaking with Frank the following research steps are being suggested.
Research Method:
1) The Band Council would invite members of the community and my self to a talking circle. My role would be to listen to the People. In honour of the sacredness of the talking circle I would not record what takes place within the talking circle.
2) The Band Council would ask for 5 or 6 volunteers from the community to talk with me one on one. I would set up appointments with the volunteers. In accordance with the Research Ethics at Acadia University and the Ethics Watch, I will have a consent form for people to sign. The purpose of the consent form is so that the volunteers will know what I am doing and why; to inform them that they can choose to participate or not to participate in the project and that they can also withdraw. (I can provide you with a copy of the consent form).
3) For those who wish to participate in the project we can exchange e-mails if they are willing to do so. This way we can continue our dialogue plus I can send the
202 volunteers my written work related to your spirituality and culture for their input and approval before I send my final paper into my professor. It is with respect to your People, your traditions and culture that any written work truly represents the Mi’kmaq, your rich traditions and beliefs. Please note that my professor and at least three examiners will read my thesis. Once the thesis is approved and completed three copies will be kept in the library at Acadia University. I can also provide your community with a copy, if you so choose.
Please feel free to ask me any questions. Thank you.
Take care
Debra
203 Appendix VI: Letter to Bear River First Nation Community
January 30, 2012
Dear Members of Bear River First Nations Community
My name is Debra Orton. I live in Annapolis Valley, with my three cats, Ruah, Toasty and Shalom. I am an ordained minister with the United Church of Canada and I am presently serving as the full-time Chaplain at Valley Regional Hospital, in Kentville. I am also a student at Acadia Divinity College, working on a Doctorate of Ministry Degree, looking at how the Spiritual Care Program at Valley Regional Hospital might best honour the spiritual and cultural needs of the dying, including the Mi’kmaw.
Since I have been the chaplain at Valley Regional Hospital I have been focusing on how to enhance the Spiritual Care Program so that those who are sick and dying will feel comfort and peace by having their spiritual and cultural needs attended to in a meaningful way. This work has led me to meet Frank Meuse who has introduced me to the Mi’kmaw ways of seeing. I have become more interested in the rich beliefs and values of the Mi’kmaw, as a result.
Since my role as chaplain and my work as a student go hand in hand I would like to have the opportunity to work with your community in enhancing the Spiritual Care Program at Valley Regional Hospital. I can only do this by sitting down and talking with you. I am wondering if you would like to volunteer. I would certainly appreciate any support you can offer. As a student at university I will need to write down paper. With respect to you, your People, spirituality and culture. I would like to exchange e-mails with those who volunteer to meet with me so that I can send my writing back to you for feedback and approval. Once my thesis is written it would be reviewed by my professor and the examining committee at Acadia Divinity College.
The title of my project for university is Spiritual Care as Hospitality in End of Life Care: Honouring the Mi’kmaw in Death and Dying
Please feel free to ask me any questions. Thank you for considering my request.
Take good care
Debra
204 Appendix VII (Band Council Approval)
205 Appendix VIII (Acadia University Approval)
206 Appendix IX (AVH REB Approval)
207 Appendix X: Consent Form
Consent Form to be signed by Research Participants
Title of Research: Spiritual Care as Hospitality in End of Life Care: Honouring the Mi’kmaq People in Death and Dying
Researcher: Debra Garnita Orton
Address: Valley Regional Hospital, 150 Exhibition Street, Kentville, Nova Scotia
B4N 5E3
Phone Number: 902-679-2657 ext. 2252
E-mail address: [email protected]
Supervisor: Dr. Maxine Hancock
E-mail address: [email protected]
Funding: N/A
Introduction:
The following information is being provided to you so you can decide whether you wish to participate in this study. You should be aware that you are free to decide to participate or not participate. You are also free to withdraw at any time without affecting your relationship with the researcher or the community.
Why am I doing this research?
This research is being conducted for two reasons. First the researcher is completing requirements for a Doctorate of Ministry degree at Acadia Divinity College, Acadia University, Wolfville, Nova Scotia. Second the researcher is a full-time chaplain at Valley Regional Hospital, Kentville, Nova Scotia. In her role as the chaplain, the researcher would like to enhance the existing spiritual care program so that the spiritual, religious and culture needs of the Mi’kmaq people living within Annapolis Valley, Nova Scotia are attended to at the end of life care.
208 What will happen during this research?
The researcher will be dialoguing with 3-5 Mi’kmaq people who are spiritually aware169 and willing to talk with the researcher. The purpose of these conversations is for the researcher to learn about the rich traditions, beliefs and values that are significant in end of life care. During these conversations the research will have some specific questions to ask, and the conversational partners will be asked if they have any questions as the dialogue moves forward and at the end of the conversation. When the researcher writes what she has learned she will send it back to the conversational partners for feedback. The purpose for this process is to ensure that the data collected represents the intention, beliefs, values and practical application expressed by the conversational partners. The learning and data collected from the dialogues will be a part of the final research paper. With permission from the conversational partners some of the teachings and data collected will be used for educational purposes in work shops and journal publications so that other health care workers can become aware of how to attend to the spiritual needs of the Mi’kmaq people at end of life care.
The conversational partners will be asked to sign a consent form to participate in this research project. All participants are free to leave the research project at anytime. At anytime participants are free to decline from answering any questions. Numbers and alphabetical letters will be assigned to conversational partners so that their identity will be kept confidential.
The dialogue between you and the researcher may last 1 to 1.5 hours. The researcher may wish to contact you following the interview to clarify or to seek further information. The research will take place from June 1, 2012 to October 2012. All conversational partners are welcome to read the results from the research.
Are there good things and bad things about the Research?
The good things about this research project include the following: the researcher is genuinely interested in enhancing the spiritual care program at Valley Regional Hospital, being attentive to the spiritual needs of the Mi’kmaq people who are terminally ill, inviting the Mi’kmaq people to participate in this research project, and
169 Spiritually aware is defined in this research project as the acknowledgement of spirituality as part of human experience.
209 open to the Mi’kmaq people being her teacher. Further, the researcher has entered into this research to learn from the Mi’kmaq people.
Since the researcher is from another culture, it will be impossible for her to have an in depth understanding of the Mi’kmaq culture and spirituality. Since the researcher is focusing on a specific subject, end of life care, the researcher is at risk of controlling the dialogue too rigidly. Some questions therefore, will be open-ended and framed to invite narrative replies. Some of the conversational partners may feel vulnerable at sharing sacred information. It has also been noted that if any of the research participants are grieving the death of a loved one, this subject matter may increase emotions related to grief.
In the event that a participant may be triggered by their own grief issues, grief support will be available. Bear River First Nations Health Centre has a comprehensive system available in the community to work with members of the community who are experiencing grief. There is a team available to community members. The team consists of a Registered Nurse, the Chief and Spiritual Leader. There are other community members who are also assigned to work with those who are suffering from grief. In addition, the Health Center is connected with the wider community, including additional health care professionals should extra support be required.
Who will be involved in this research?
The participants will include volunteers from the community who are willing participants in the research and the principle investigator Debra Orton.
Who will have access to the research results?
The researcher, the research supervisor, the conversational partners, Bear River First Nations Band Council and community, the examining board at Acadia Divinity College, Acadia University, and Annapolis Valley District Health Authority will be aware of the research method and findings. The findings will also be shared in educational settings such as workshops for AVDHA staff, physicians and volunteers, end of life care workshops, journals and books. A copy of the thesis will also be stored in library at Acadia University.
Can I decide if I want to be in the Research?
Each conversational partner is free to make his or her choice as to whether they want to participate in this research. At any time during the research conversational partners are free to leave. Likewise, a conversational partner who has left the research
210 project and chooses of their own volition to rejoin the research project is free to do so without any penalty. Once the data has been submitted or published, participants will not be permitted to withdraw. Further, there are no financial or other forms of compensations for participating in this research. If conversational partners wish to have their name acknowledged for participating in this research, this can be done by signing another consent form for this purpose.
Confidentiality:
The identity of the conversational partners will be kept confidential. A number with a letter from the English alphabet will be assigned to conversational partners. With permission from conversational partners all dialogues will be recorded on a tape recorder and written notes for the benefit of the researcher only. The researcher will record the data from the tape recorder and written notes onto a computer program within her personal computer. The computer (secure file), tape recordings and written notes will be kept in her home study office. The tape recordings and written notes will be destroyed one year following the completion of the research project, thesis writing and dissertation. The researcher’s employer will not have access to the data collected. Participant’s identity would be revealed and/or confidentiality would be broken by the researcher when provincial or federal law requires the researcher to do so.
Each participant is asked to keep information shared in the focus group confidential. Having said this, I cannot guarantee confidentiality.
(D.Orton)
Research Ethics Board Contacts:
Dr. Stephen Maitzen, Chair, Research Ethics Board, Acadia University, E-mail Address: [email protected]
Dr. Dylana Arsenault, Chair, Research Ethics Board, Annapolis Valley District Health Authority, E-mail address: [email protected]
Please sign your consent with full knowledge of the nature and purpose of the procedures. This consent form does not waive right to legal discourse for harm. A copy of this consent form will be given to you to keep.
211 Appendix XI: Interview Questions
Interview Questions:
1) What are the traditional Mi’kmaw beliefs and values about death and dying? Are they generally held by the Mi’kmaw People today? If not what are the current beliefs?
2) What do you think are the most important aspects of beliefs and/or traditions to acknowledge and respect, at end of life care?
3) What do you think care providers (nurses, doctors, homemakers, chaplains) need to know so that they can be supportive to the dying and their family members?
4) What would be most helpful in enabling the Mi’kmaw People to express and exercise spiritual practices at end of life care?
5) Can you describe what would be seen as a “good death” for a Mi’kmaw person?
6) Can you describe what the rich spiritual and cultural values, beliefs and practices are following the death of a loved one? What do you think care providers need to know following the death of a loved one? (Rituals, preparation of the body, prayers, for example).
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Movies
Lawrence of Arabia. Sam Spiegel; Producer. California: Academy of Motion Picture Arts and Sciences, 1962.
Unpublished Materials
Annapolis Valley District Health Authority. Pastoral Care Services, Valley Regional Hospital Policy and Procedure Manual. Annapolis Valley District Health Authority. June, 1992. Revised April, 2006.
Unpublished Interview by the Author
Catherine M. Martin of Halifax, Nova Scotia, Mi’kmaq Drummer/Film Maker/Chanter/ Story Teller, November, 2009.
Conferences
Theresa Muise, Mi’kmaw author and Guest Speaker, “Spiritual Hospitality in Health Care” sponsored by the Ministry of Health and Wellness, and Annapolis Valley District Health Authority, Wolfville, Nova Scotia, April 2012
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