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Home , Health professional, Hospice

HEALTH REFORM AND : 2017 UPDATE

Jassin M. Jouria, MD

Dr. Jassin M. Jouria is a medical doctor, professor of academic , and medical author. He graduated from Ross University School of Medicine and has completed his clinical clerkship training in various teaching throughout New York, including King’s County Center and Brookdale Medical Center, among others. Dr. Jouria has passed all USMLE medical board exams, and has served as a test prep tutor and instructor for Kaplan. He has developed several medical courses and curricula for a variety of educational institutions. Dr. Jouria has also served on multiple levels in the academic field including faculty member and Department Chair. Dr. Jouria continues to serves as a Subject Matter Expert for several continuing education organizations covering multiple basic medical sciences. He has also developed several continuing courses covering various topics in clinical medicine. Recently, Dr. Jouria has been contracted by the University of Miami/Jackson Memorial Hospital’s Department of to develop an e-module training series for trauma management. Dr. Jouria is currently authoring an academic textbook on Human Anatomy & Physiology.

Abstract

Palliative care and services that involve a whole interdisciplinary team approach aimed at improving patient-centered and quality of life outcomes are based on patient prognosis as well as patient and family preferences for treatment. Such an approach helps to avoid unnecessary health costs and improves patient and family satisfaction in services rendered. The current literature suggests that the shifting paradigm of palliative and hospice care away from prior medical models for end of life care have led to improved outcomes and even prolonged life for palliative care . The Affordable Care Act of 2010 had an important impact on the availability of palliative care services, creating new processes for palliative team members to improve services to patients and families needing services.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 1 Policy Statement

This activity has been planned and implemented in accordance with the policies of NurseCe4Less.com and the continuing education requirements of the American Nurses Credentialing Center's Commission on Accreditation for registered nurses. It is the policy of NurseCe4Less.com to ensure objectivity, transparency, and best practice in clinical education for all continuing nursing education (CNE) activities.

Continuing Education Credit Designation

This educational activity is credited for 4.5 hours. Nurses may only claim credit commensurate with the credit awarded for completion of this course activity.

Statement of Learning Need

Some health clinicians are unaware of how palliative and hospice care services have expanded to include new multidisciplinary team roles working together to transform end of life care for patients. Specialized palliative care team models enhance available services for patients in multiple health locations, including at home. Health costs will need to be better managed as multidisciplinary teams supporting palliative patients improve approaches to treatment for patients and their .

Course Purpose

To provide clinicians with knowledge of palliative and hospice care structures and processes and of the national legislation endorsing its need and benefit to patients and families.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 2 Target Audience

Advanced Practice Registered Nurses and Registered Nurses

(Interdisciplinary Health Team Members, including Vocational Nurses and Medical Assistants may obtain a Certificate of Completion)

Course Author & Planning Team Conflict of Interest Disclosures

Jassin M. Jouria, MD, William A. Cook, PhD, Douglas Lawrence, MA,

Susan DePasquale, MSN, FPMHNP-BC – all have no disclosures

Acknowledgement of Commercial Support

There is no commercial support for this course.

Please take time to complete a self-assessment of knowledge, on page 4, sample questions before reading the article.

Opportunity to complete a self-assessment of knowledge learned will be provided at the end of the course

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 3 1. People in the now live an average of ______after they receive a terminal diagnosis.

a. six months b. one year c. thirty months d. 24 months

2. True or False: Modern palliative care is limited to the treatment of terminally ill patients and is focused on extending both quality and quantity of life.

a. True b. False

3. Which of the following defines or describes the role of palliative care in treating patients?

a. Palliative care affirms life and disregards dying. b. Palliative care is applicable during the last 6 months of an illness. c. Palliative care intends neither to hasten nor postpone . d. All of the above

4. The role of palliative nursing is to assess needs of the patient and the patient’s family related to their

a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above

5. Palliative intervention is distinct from specialized palliative care because palliative intervention distinctively concerns intervention

a. when the disease is not curable. b. for patients only. c. that is vital in all clinical practice for illnesses at all stages. d. that is intended to postpone death.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 4 Introduction

Although palliative care has its roots as an essential part of hospice care, modern palliative care has evolved to encompass the treatment of non- and injury in an effort to extend both quality and longevity of life. Advancements in treatment options, along with improved access to medical professionals and extended benefits for beneficiaries, have made the field of palliative care an emerging and rapidly expanding health service. The Affordable Care Act of 2010 had an important impact on the availability of these services and, while there is still opportunity for improvement, the field of palliative care is on track to continue its growth in upcoming years.

Palliative Care And Quality Of Life

The Affordable Care Act did not explicitly address palliative care, but it did make some potential improvements to hospice services. There are opportunities in payment reforms and quality improvement initiatives that will hopefully have a positive impact on cancer patients, both terminal and those who will become survivors. It is imperative that palliative care be addressed and not avoided in some of the bundling payment and Accountable Care Organization (ACO) pilot programs, no matter how operationally challenging this may be. With a rapidly aging population that faces more chronic diseases than any previous generations, palliative care cannot be excluded from legislation and coverage.1

Palliative care focuses on achieving the best possible quality of life for patients and their based on patient and family needs and goals, independent of prognosis. Interdisciplinary palliative care teams assess and treat symptoms, support decision-making and help match treatments to meet patient and family goals, mobilize practical aid for patients and their family caregivers, identify community resources to ensure a safe and secure living environment, and promote collaborative and seamless models of care across a range of healthcare settings (i.e., hospital, and in-). nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 5 In the United States, palliative care is provided both within and outside hospice programs. Palliative care outside hospice is offered independent of the patient's prognosis and simultaneously with life-prolonging and curative for persons living with serious, complex, and life-threatening illness. Ideally, palliative care should be initiated concurrently with a diagnosis of a serious illness and at the same time as curative or disease-modifying treatments, given the near universal occurrence of patient and family distress and their need for information and support in establishing achievable goals for the patient's medical care. Unlike hospice, palliative care may be primary, secondary, or tertiary.

Primary palliative care should be part of what all health clinicians provide patients (such as pain and symptom management, discussions about advance care planning); secondary palliative care is offered when the clinician refers to specialist-level palliative care experts for unusually complex or difficult problems; and, tertiary palliative care includes research and teaching in addition to specialist-level palliative care expertise.2

Palliative care is a broad term that refers to care provided at any point in the trajectory of an illness for the purpose of alleviating physical and psycho-social- spiritual suffering, enhancing quality of life, effectively managing symptoms, and offering comprehensive, interdisciplinary support to the patient and family throughout the course of illness, regardless of stage of disease. Palliative care also helps patients and families make difficult medical decisions that enable them to work toward their goals, especially as outcomes become more uncertain. Palliative care ideally begins at the point of initial diagnosis of a serious, potentially life-limiting illness and can be delivered concurrently with other therapies that are intended to cure a disease or prolong life. If disease directed stops working, palliative care can become the main focus of care.

Although the primary focus is enhancing quality of life, palliative care also may positively influence the course of illness and even extend life if provided early nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 6 enough. Palliative care also encompasses care provided through the later stages of serious illness and dying. In the later stages of serious illness, palliative care includes end of life (EOL) care, which might involve referral to a formal hospice program as well as support of the family through the bereavement period. Hospice refers to an aspect of palliative care devoted to alleviating symptoms and enhancing quality of life during the last six months of life for patients who accept that disease-directed therapy can no longer benefit them.3,4

Palliative care is a comprehensive approach to improve the quality of life for people who are living with serious or potentially life-limiting illnesses. Palliative care programs are made up of a multidisciplinary team of , nurses, therapists, counselors, and social workers. The entire team works in collaboration together as well as with the patient and their family to provide the medical, emotional, and social support needed to cope with the burdens of a serious illness. Since no two patients are alike, palliative care treatments are tailored to the individual based on his or her medical needs and wishes for how they want to be treated – physically, psychologically, and spiritually.

Palliative care is a resource available for anyone with a serious or life-limiting illness. Some types of conditions that may be appropriate to receive palliative care include cancer, congestive (CHF), chronic obstructive pulmonary disease (COPD), Parkinson’s disease, Alzheimer’s disease, dementia, liver failure or end-stage kidney disease. Palliative care provides treatments for symptoms even if the underlying disease cannot be cured. The main goals of palliative care are to relieve the pain and suffering and discomfort associated with an illness and to reduce patient and family members’ stress. Palliative care can be provided in a number of healthcare settings including a patient’s home, outpatient palliative care , nursing homes, hospitals, or other specialized clinics.5,6

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 7 As with any new specialty of medicine, hospice and palliative care is not well understood by either the public or the medical profession. This is generally not a comfortable topic, and the role of physicians to treat patients with EOL care needs is continually evolving. However, good EOL care is something that medicine must do. After all, it is often part of the problem. By curing many of the acute ailments, medical clinicians have created chronic disease. The dying process has become more complex, and now takes much longer. People in the U.S. now live an average of thirty months after they receive a terminal diagnosis. In addition to the human impact, there is also a huge economic impact. By some estimates, the average patient will spend 75% of the healthcare dollars over an entire lifetime during the last thirty months of life. Therefore, medical clinicians must treat suffering as well as disease. As suggested, sometimes in treating the disease, with modern technology, medical clinicians become the source of suffering itself. The wise health clinician knows when to transition from cure to palliation.7

Palliative care of EOL patients encapsulates all facets of good . If a medical clinician performs family practice well, he or she will do palliative care well. However, while palliative care can be relatively straightforward, problems can arise that are beyond the skills of family medicine. Now that palliative care specialist teams exist there is backup advice and support for most family practice clinicians. But having specialist teams available in most locations is not a reason to cede all palliative care to them. Specialist teams cannot meet the demands of the number of people who are dying in any given time. It is in everyone’s interest for family medicine clinicians to be competent and strong collaborators in this area of patient care.8

The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 8 treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: • provides relief from pain and other distressing symptoms. • affirms life and regards dying as a normal process. • intends neither to hasten nor postpone death. • integrates the psychological and spiritual aspects of patient care. • offers a support system to help patients live as actively as possible until death. • offers a support system to help the family cope during the patient’s illness and in their own bereavement. • uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated. • will enhance quality of life, and may also positively influence the course of illness. • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications.

The WHO definition of palliative care for children states that it “represents a special, albeit closely related field to adult palliative care,” with principles related to pediatric chronic disorders. Palliative care for children:9

• is the active of the child’s body, mind, and spirit, which also involves giving support to the family. • begins when illness is diagnosed, and continues regardless of whether a child receives treatment directed at the disease. • requires a broad multidisciplinary approach that includes the family and makes use of available community resources. • can be provided in tertiary care facilities, in centers, and even in children’s homes.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 9 The above definition reflects the 21st century view that palliative care is applicable whatever the life-threatening illness, and is the first time that the definition does not overtly refer to cancer. Indeed, more and specialist palliative care units accept referrals of patients with diseases other than cancer. The objectives of palliative care are, therefore, to 1) palliate physical symptoms, 2) alleviate disease and maintain independence for as long and as comfortably as possible, 3) alleviate , and fear associated with advancing disease, 4) provide as dignified a death as possible, and 5) support those who are bereaved.

The palliative care movement was born out of the hospice movement and Professor Mount, a Canadian who worked with at St. Christopher’s Hospice in , first coined the term. Since 1987, palliative medicine has been recognized as a distinct medical specialty.10 All life- threatening illnesses – be they cancer, neurological, cardiac or respiratory disease – have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative medicine and nursing is therefore to assess needs in each of these areas and to collaboratively plan, implement and evaluate appropriate interventions aimed at improving the quality of life and to enable a dignified death.

With the current growth of palliative care as a specialty, there can be some confusion as to the definition of specialist palliative care and how it is practiced. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) advocates the palliative care approach as a vital and integral part of all clinical practice, whatever the illness or its stage. A knowledge and practice of palliative care principles inform such an approach. Palliative intervention, on the other hand, involves disease intervention when the disease is not curable; sometimes known as generic palliative care. Specialist palliative care requires a high level of professional skills from trained staff, as well as a high staff to patient ratio. It refers to a service provided by a multi-professional team led by nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 10 clinicians with recognized specialist palliative care training. The aim is also to support patients and their families, wherever they may be, such as in the hospital, home or under the care of hospice.2

End-of-life caregiving presents a number of particular challenges, including the necessity of making life and death decisions about matters such as whether to utilize life-sustaining treatments and hospice care, intense care demands, and witnessing pain and suffering in loved ones. Decision making at the end-of-life can be particularly stressful for families. Family members may be asked whether to begin tube feeding, institute antibiotic therapy for , or to decline medical procedures that might extend duration of life when the quality of life is poor.

Presence of written advance directives or even a history of verbal discussions of EOL issues helps families cope. Family stress associated with the decision to withdraw treatment tends to be high immediately following the death of a decedent and, while it decreased over time, remained high half a year later. Research shows, however, that family stress is highest in the absence of advance directives; and, stress is lower when verbal advance directives guide the family, and lowest when written advance directives are in place.11

Cultural diversity issues can become particularly prominent at the end-of-life as well, and may affect decision-making. For example, African American older adults are less likely than others to agree to withhold life-sustaining treatment even when quality of life is poor, and cultural values among many Asian groups discourage direct disclosure to dying patients and instead encourage decision- making by family members.12

Palliative care utilization is consistently related to higher satisfaction with EOL care. Families report lower anxiety while caregiving and lower depression during bereavement when families receive palliative care. In addition, nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 11 EOL caregivers who are taught problem solving and coping skills have improved caregiver quality of life, and reduced perceived burden.

Models of Palliative Care

There are varied models of palliative care services and teams, as previously noted, and these are specifically described here.13

• Inpatient palliative care unit: Is within a general (secondary or tertiary referral) hospital

• Outpatient palliative care unit: Is detached or even distant from a hospital; often termed either a "free- standing unit" or a "hospice"

• Community palliative care service: Involves caring for patients at home, in nursing homes or living with relatives

• Hospital palliative care team: Operates with or without dedicated beds, in a secondary or tertiary referral hospital

• Day palliative care unit: Involves caring for patients living at home but able to be brought in for clinical and social care on a day basis

The key features of palliative care are identified as:13

• Recognition and relief of pain and other symptoms, whatever their causes

• Recognition and relief of psychosocial suffering, including appropriate care and support for relatives and close friends

• Recognition and relief of spiritual/existential suffering

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 12 • Sensitive communications between professional carers, patients, relatives, and colleagues

• Respect for truth and honesty in all dealings with patients, relatives and fellow professionals.

• Inter-professional/multidisciplinary team caring where possible

Functions of Palliative Care

Palliative care focuses on achieving the best possible quality of life for patients and their family caregivers, based on patient and family needs and goals and independent of prognosis. Interdisciplinary palliative care teams assess and treat symptoms, support decision-making and help match treatments to informed patient and family goals, mobilize practical aid for patients and their family caregivers, identify community resources to ensure a safe and secure living environment, and promote collaborative and seamless models of care across a range of care settings, as identified in previous sections (i.e., hospital, home, and nursing home).

In the U.S., palliative care is provided both within and outside hospice programs. Palliative care outside hospice is offered independent of the patient's prognosis and simultaneously with life-prolonging and curative therapies for persons living with serious, complex, and life-threatening illness. Ideally, palliative care should be initiated concurrently with a diagnosis of a serious illness and at the same time as curative or disease-modifying treatments given the near universal occurrence of patient and family distress and need for information and support in establishing achievable goals for the patient's treatment, whether primary, secondary, or tertiary palliative care. As noted previously, primary palliative care involves pain and symptom management and discussions about advance care planning, secondary palliative care is offered when the primary clinician refers to specialist-level palliative care experts for unusually complex or difficult problems,

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 13 and tertiary palliative care includes research and teaching in addition to specialist-level palliative care expertise.14

Palliative Care vs. Hospice Care

Palliative care and hospice care are very similar when it comes to the most important issue for dying people – their care. Most people have heard of hospice care and have a general idea of what services hospice provides. What they don’t know or what may become confusing is that hospice provides “palliative care” and that palliative care is both a method of administering comfort care; and, increasingly, an administered system of palliative care is offered most prevalently by hospitals. As an adjunct or supplement to some of the more traditional care options, both hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counseling, and symptom treatment are administered through a single program. Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.15

Hospice services in the U.S. are delivered in a model established by statute in Medicare and followed by most other insurers. The Medicare Hospice Benefit is largely restricted to patients with a prognosis of living for six months or less, if the disease follows its natural course, who agree to forgo therapies with curative intent. Hospice is designed to provide comprehensive, interdisciplinary, team- based palliative care, mostly in a place the patient calls home, for dying patients with an identifiably short prognosis. Hospice care is appropriate when patients and their families decide to forgo curative therapies in order to focus on maximizing comfort and quality of life, when curative treatments are no longer beneficial, when the burdens of these treatments outweigh their benefits, or when patients are entering the last weeks or months of life.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 14 Hospice services are highly standardized by the Medicare Conditions of Participation, although the intensity and nature of those services are determined according to patient and family need and stage of illness (i.e., hospice services are typically most intensive in the last days of life when symptoms and family distress often peak). Hospice supports the family caregiver(s) throughout the care process and provides bereavement services to family members after the patient's death.16

It is important to note that the prognosis-based distinction between palliative care (eligibility based on need, no prognostic restriction) and hospice (eligibility based on a prognosis of living less than six months) is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous. In fact, it was the need for palliative care for those patients not meeting the hospice eligibility requirement for a prognosis of living six months or less (those with serious or chronic illness who are not dying soon) that led to the recent rapid growth in hospital palliative care teams in the United States.

The public at large knows the term ‘hospice care’ better than ‘palliative care’. Palliative Care is the preferred term for health professionals particularly since it became a nursing specialty in so many countries, and palliative medicine became a medical specialty in the in 1987. Unfortunately, some health professionals continue to regard hospice as care for the dying provided either by well-intentioned volunteers or the ultra-religious. In North America, the term hospice is often used to describe not a building or care program but a philosophy of care.17-19

Overview Of Palliative Care And Hospice Care Programs

While palliative and hospice care share similarities in program measures to provide caring and comfort for the sickest of patients and their families, there are

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 15 some significant differences. This section reviews and expands upon the discussion on palliative and hospice care approaches raised earlier on, including locations, timing or availability of services and how each program is generally reimbursed.

Palliative Care

Palliative care is a comprehensive approach to improving the quality of life for people who are living with serious or potentially life-limiting illnesses. Palliative care programs are typically made up of a multidisciplinary team of physicians, nurses, therapists, counselors, and social workers, and, as raised earlier, the palliative care team works in collaboration with each other and with the patient and their family to provide medical, emotional, and social support needed to cope with the burdens of a serious illness.

Palliative care treatments are individualized to meet medical needs and desires of each patient in terms of the patient’s physical, psychological, and spiritual needs. Palliative care is a resource available for anyone with a serious or life-limiting illness. Types of conditions appropriate for receive palliative care include cancer, CHF, COPD, Parkinson’s disease, Alzheimer’s disease, dementia, liver failure or end-stage kidney disease. Palliative care provides treatments for symptoms even if the underlying disease cannot be cured. The main goals of palliative care are to relieve the pain and suffering and discomfort associated with an illness and to reduce patient and family members’ stress. Palliative care can be provided in a number of care settings including a patient’s home, outpatient palliative care clinics, in nursing homes, hospitals, or other specialized clinics.20,21

Location

Palliative care teams, physicians, nurses, and other professional caregivers, are often at the facility where a patient will first receive treatment. In these settings, the palliative care team on staff will administer or oversee most of the ongoing

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 16 comfort care patients receive. While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team.24

Timing

There are no time restrictions to receive palliative care. Patients can receive palliative care at any time, at any stage of illness whether they are in the terminal stages of illness or not.

Payment

Since this service will generally be administered through the hospital or regular medical clinician, it is likely to be covered through regular medical insurance. It is important to note, however, that each item will be billed separately, just as they are with regular hospital and medical/clinical visits. If a patient receives outpatient palliative care, prescriptions will be billed separately and are only covered as provided by regular insurance. Inpatient care however often does cover prescription charges.2

Treatment

Since there are no time limits on when a patient can receive palliative care, a gap is filled for patients who want and need comfort at any stage of a disease, whether terminal or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided. It is important to note, however, that there will be exceptions to the general precepts outlined. There are some hospice programs that will provide life-prolonging treatments, and there are some palliative care programs that concentrate mostly on end-of-life care.26

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 17 Hospice Care

While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative approach of care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less. Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible during the time they have remaining. The hospice care team is also a multidisciplinary team made up of physicians, nurses, social workers, trained volunteers, and spiritual advisors. Hospice care can be provided in the home or in a facility such as a hospital, nursing home, or a dedicated hospice care facility.

Patients entering hospice care understand that their illness or disease is not responding to medical treatment. By entering hospice, attempts to cure the patient’s underlying illness are stopped. Stopping curative treatment does not mean discontinuing all treatment. For example, if a patient is being treated for high blood pressure with medication, he or she will continue receiving those treatments in addition to the treatments they are receiving to manage the symptoms of their terminal illness. Patients can elect to leave hospice care at any time if a decision is reached to resume curative treatments. Patients may also leave hospice care if their condition improves.17,22

Location

Hospice programs far outnumber palliative care programs. Generally, once enrolled through a referral from the , a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home or a specially equipped hospice facility, on occasion a hospital my involve placement (although this is not the norm).23

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 18 Timing

A patient must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from insurance.

Payment

Before considering hospice, it is important to check on policy limits for payment. While hospice can be considered an all-inclusive treatment in terms of payment (hospice programs cover almost all expenses) insurance coverage for hospice can vary. Some hospice programs offer subsidized care for the economically disadvantaged, or for patients not covered under their own insurance. Many hospice programs are covered under Medicare.25

Treatment

Most hospice programs concentrate on comfort rather than aggressive disease abatement. By electing to forego extensive life-prolonging treatment, hospice patients can concentrate on getting the most out of the time they have left, without some of the negative side-effects that life prolonging treatments can have. Most hospice patients can achieve a level of comfort that allows them to concentrate on the emotional and practical issues of dying.16

Relationship Between Hospice and Palliative Care

The advancement of the field of hospice care and the emergence and growth of nonhospice palliative care have at the same time unified the specialty and caused tensions. Tensions continue to exist within the field itself regarding how to define the specialty. The issues are complex and are based in part on historical events, barriers to needed palliative care for nonterminal patients and their families, and shifting priorities in healthcare. The challenge is for the field to unite to achieve the best possible outcomes. To do so will require reflection about the past and nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 19 considerations for the future of the field in the current health reform environment.27

As the relationship between hospice and palliative care has developed, perceptions have influenced responses in discussions between patients, families, and colleagues, attempts to educate referral sources and administrators regarding earlier access to needed services, and recent policymakers' responses to language put forth in legislative bills. The unfortunate panel response to the portion of the legislation on death that included counseling on advanced directives, living wills, and EOL care resulted in removal of these provisions from the final bill. Misperceptions regarding the scope of palliative care services have persisted and remain a barrier to accessing needed services.28

Part of the difficulty with misperceptions appears to be related to confusion of commonly used terminology. For example, what does "comfort care" really mean? In reality, it may mean different things to different people. If a family agrees to comfort care, have they agreed to a do-not-resuscitate status? A descriptive phrase may be more effective at describing what some of the commonly used terms are meant to imply. While these efforts could become cumbersome, it is important that communities become more aware of how it is being perceived and seek ways to improve how medical clinicians communicate hospice and palliative care more effectively. The challenge is to be mindful of the language and phrases to which clinicians have become accustomed.29

The ultimate goal between both programs is to have palliative care and hospice care fully integrated into the healthcare system. As health reform unfolds, it is critically important that hospice and palliative care clinicians are able to articulate the field's potential to impact key reform initiatives.

Access to hospice and palliative care services vary significantly across the United States. Smaller, for-profit, safety net, and Southern hospitals are less likely to nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 20 offer palliative services. Hospital palliative care programs also show significant variation in team makeup and support. Studies have also revealed disparities in access to hospice and palliative services among minority populations. Therefore, priorities should include adherence to national guidelines and preferred practices in order to utilize available tools to help establish quality hospice and palliative care programs that reflect the field's standards. Much progress has been made in identifying the core structure and processes for high-quality hospice and palliative care and development of standards to promote their use.30

Despite nearly a doubling in palliative care programs and increases in hospice programs and individuals served, today there is approximately one palliative trained physician for every 1200 patients with a serious illness. The workforce shortage is expected to increase in the coming years to meet the needs of anticipated shifts in demographics that estimate a doubling of the population older than 65 years and those coping with serious illness. In order to respond to the increasing need for care, there will also need to be an adequate number of trained, credentialed, and certified hospice and palliative care clinicians as well as increasing primary palliative care skills for all health clinicians.31

Funding for research in hospice and palliative care is one of the highest priorities. The National Institutes of Health (NIH) extramural funding for palliative care- related research is less than 0.01% despite Senate Appropriations Committee support for emphasis on palliative care research at NIH. Refining quality measures and transparency as well as continued contribution to the growing evidence base for the specialty is needed. Hospice and palliative medical clinicians and leadership organizations have outlined specific research priorities, and tools are available to utilize metrics that assist in data collection and analysis.32

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 21 Recipients Of Palliative Care

Adult care recipients vary greatly in their caregiving needs, according to the National Alliance for Caregiving. Most care recipients, between the ages of 18 to 49, are people limited by a long-term physical condition (54%), an emotional or problem (46%), a short-term physical condition (35%), or a behavioral issue (31%). Caregivers of adults age 50 and older report that the person they help needs care because of long-term physical conditions (76%), a short-term physical condition (36%) or emotional/mental health issues (25%).33

The amount of time spent caring increases substantially as cognitive impairment worsens. Among people 70 years of age and older, those with no dementia receive an average of 4.6 hours per week of care, while those with mild dementia receive 13.1 hours of care weekly. For those with severe dementia, hours of informal care received rises to 46.1 hours per week.

Care recipients with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) move in and out of their need for extensive care over a long period of time. Unfortunately, the disease itself, and those experiencing it, are often feared and mistreated by those whose care they depend upon as well as by certain aspects of society at large. In addition, treatment, especially medication, can be extremely costly. In one study of informal HIV/AIDS caregivers, the number of hours committed to caregiving was a mean of 20.68 hours/week with a median of 15 hours. A high number of instrumental activities of daily living were performed for each care receiver, and over half of the care recipients — 56.8 percent — received assistance with at least one activity of daily living (ADL).34,35

The burden of care on the family has been documented, leading to conflicting emotions and fatigue for the caregiver. Overall, patients with a diagnosis other than cancer are more likely to be cared for by relatives with much of the time

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 22 given to care being unpaid and unsupported and, therefore, may affect the well- being of the caregivers. Indeed, research found that caregivers are often very vulnerable. Older people want to die at home, however, families are often unprepared for the intensity of caregiving. Of particular note is the burden on the family in caring for those with dementia and heart failure. This is supported by research that identified heart failure affected all aspects of the patient’s and caregiver’s lives, reducing social interaction and leading to isolation. In addition, only 1% of hospice inpatients’ primary diagnosis has been found to be dementia and it is now recommended that care of patients with dementia should be merged with elements of palliative care to provide person-centered care. Thus, support is provided for the patient in their EOL experience and those caring for them. Full involvement in decision-making and knowledge of disease impact and progression should be sought.36

Knowledge and understanding of disease and prognosis are other areas that necessitate attention for older people requiring palliative care. Those individuals with heart failure, and their families, report uncoordinated care and lack of open communication between professionals that hinder care management. Indeed, lack of professional input is highlighted in current research, coupled with confusion regarding diagnosis. However, this is a common theme in care of the older person with patients asking for more information and to be involved in decision-making.18

Ageism in Palliative Care

Many older people are marginalized and do not receive information about the full range of services or options available. The term ‘a Cinderella service’ has been coined with older people being discriminated on the grounds of age. There are numerous examples of ageism in , some of which are cited by Help the Aged. Ageism, consequently, is highlighted in the National Service framework for the Older Person standards on person-centered care and discrimination.37

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 23 Symptom Management

Symptom management (shortness of breath, pain, depression, confusion, constipation, malnutrition, fatigue and generalized weakness) and common problems in old age (risk of falls and reduced mobility, confusion, skin integrity, continence issues, visual and hearing impairments, poly ) are important needs to be addressed and should be an integral part of any assessment. The single assessment process documentation for the older person addresses a range of these issues, however, this is not widely used. Patients in old age are more likely than patients with a non-cancer diagnosis to experience pain, nausea and vomiting, a dry mouth, loss of appetite, difficulty swallowing, and pressure ulcers.

Those with a non-cancer diagnosis tend to experience fewer distressing symptoms but these are longer-lasting and poorly controlled and will require help or support for longer periods of time. Older people with dementia, however, tend to receive suboptimal EOL care with inadequate management of symptoms, common themes include poor or no pain control, and poorly managed behavioral and psychological symptoms, including hallucinations, depression, agitation and paranoia. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in EOL care for people with dementia; indeed, 67% of patients with dementia were hospitalized in their last year of life.5,38

Medication Management and Pain Control

Older people are more prone to adverse reactions and have poorer . Approximately a fifth of older people find pain bad enough to limit daily activities, however, older people generally under-report pain, therefore it goes untreated. Furthermore, those with dementia are at risk of receiving no pain management strategies due to underestimation by healthcare staff, and clients’ communication problems. However, this underestimation of pain by healthcare

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 24 professionals occurs across the spectrum of care of the older person. Research suggests that pain management is an area that palliative care services could promote for the older person, adding that expertise in pain control by palliative care teams would help resolve unrelieved pain symptoms that the older person experiences.39

End of Life Care

An aspect that does need consideration is the client’s preference for where care is delivered and where death occurs. Currently, older people, mostly over 65 years, die in acute settings (59%) or long-term care facilities (19%), and only 4% die in a hospice care setting and 16% die at home. However, 75% of older people generally would prefer to be cared for and die at home. Therefore, it could be suggested that EOL care needs of older people are not adequately addressed.

Sociologically, older people are more likely to live alone, experience economic hardship, and be lonely and isolated. The psychological impact of a chronic disease also needs attention. Relatives in receipt of specialist palliative care services report fewer psychological symptoms and unmet needs, however, as already discussed, the majority of older people are not cared for in this environment.

Older people will also have a heightened awareness that death is drawing closer, and may fear for the future. Common concerns include safety, being able to die with dignity, not dying alone and being prepared for death. For these reasons, holistic care of the older person should be promoted in end of life care. Other aspects include spiritual and psychosocial support, the use of complementary therapies, and to have physical needs addressed including pain and symptom control. Additionally, there are aspects relating to privacy and dignity, support of the family and caregivers, access to specialist palliative care teams and/or non- cancer patient teams, time to say goodbye and, finally, bereavement support.40,41

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 25 Children in Palliative Care

The provision of palliative care for children involves a partnership between the child, family, parents' employer(s), teachers, school staff, and health professionals, including nurses, , bereavement counselors, social workers, primary care physicians, subspecialty physicians, and consultants. Physical, emotional, psychosocial, and spiritual/existential domains of distress must be addressed. The child should participate to the fullest extent possible, given his or her illness experience, developmental capacities, and level of consciousness. Regardless of the prognosis, respect for the child requires that he or she be given a developmentally appropriate description of the condition along with the expected burdens and benefits of available management options, while soliciting and listening to the child's preferences. For example, burdens may include time away from home and friends; and, benefits may include participation in research studies based on an altruistic motive. The discussion should focus on what interventions, from the child's and family's perspective, will be of the most benefit.37,42,43

Each available diagnostic or therapeutic intervention needs to be considered within the context of the goals and expectations of the child and family. The decision to forgo certain treatments means that only those selected interventions are withheld or withdrawn. As the goals of therapy change with the progression of the child's condition or disease, the desirability of some interventions may change. Early interdisciplinary discussion and planning facilitates the smooth integration of these changes.

The relief of pain and anxiety is an essential aspect of palliative care, and should be addressed throughout the course of illness. In some instances, pain relief may free a child to participate more fully in his or her final days, weeks, or months of life. Openness to the day-to-day experience of the child and flexibility in

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 26 considering all options that may palliate distressing symptoms and conditions are essential when developing a treatment plan.26

Minimum standards of pediatric palliative care must include a mechanism to ensure a seamless transition between settings, including at least one consistent caregiver, the availability of expert pediatric palliative care assistance 24 hours a day, 365 days a year, and the availability of an interdisciplinary care team with sufficient expertise to address the physical, psychosocial, emotional, and spiritual needs of the child and family. At the minimum, this team will include a physician, nurse, social worker, spiritual advisor, and child life therapist.44

Although palliative care services may not be necessary for all families, the full range of clinical and educational resources must be made available. In addition, comprehensive palliative care cannot be accomplished without a designated care coordinator who can maintain continuity and ensure the care provided is consistent with the child's and family's goals despite the intermittent care and high staff turnover associated with tertiary care centers. The coordinator can ensure that the plan of care is coordinated with community care professionals to ensure a realistically achievable plan.

Tertiary centers must provide community caregivers with explicit instruction in the care of the child, and appropriate pediatric palliative care consultation must be available 24 hours a day. Creative ways of coordinating care between the tertiary center and the community may involve individualized video conferencing or other forms of electronic communication. Respite for family caregivers and home nursing care are essential to maintain the integrity of families and the safety and wellbeing of the ill child. Finally, bereavement support must be available to the family, caregivers, and others affected by the death of a child, for as long as necessary.45,46

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 27 Elements Of A Palliative Care Program

The National Quality Forum (NQF) Guidelines include thirty-eight preferred structure and quality practices that have been used to develop quality metrics for hospital palliative care services in the United States. Examples of preferred practice measures are the determination and documentation of patient and family goals for care through advanced planning using, for example, the Medical or Physician Orders for Life-Sustaining Treatment (also known as MOLST or POLST), or the Respecting Choices paradigm, both of which have been shown to increase the likelihood that the care actually received is concordant with the patient's goals.15

The essential structural elements of palliative care are the following:

• Interdisciplinary team of clinical staff (physician, nurse, social worker, spiritual counselor, , aide, volunteers) • Staffing ratios determined by the nature and size of population to be served • Staff trained, credentialed, and/or certified in palliative care • Access and responsiveness twenty-four hours per day, seven days per week

Types of Palliative Care

Community Palliative Care Services

Community palliative care service is one area of healthcare where there are wide variations between types of services and programs. Some areas have well established primary care services staffed by family physicians supported by community nurses and even nurses registered as specialists in pediatrics, palliative care, cardiology, renal medicine, chest medicine, diabetes, psychiatry and stoma care. In some instances, patients must travel to clinics many miles from their homes for any acute illness necessitating them to be taken to a distant hospital’s Emergency Department. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 28 If the physicians who care for patients at home seldom make house visits, or have no training in modern palliative care, or cannot readily access and prescribe , then terminal care is usually unsatisfactory. Similarly, if family caregivers have not been taught how to care for someone so gravely ill, or there are no home-visiting nurses trained in palliative care, it can be difficult to ensure that dying is peaceful and dignified.47

There are various models of community palliative care service in common use and many modifications of each. These are reviewed below.

Advisory Service

An advisory service assists medical clinicians and community nurses who invite the advisory team to visit and make recommendations on the care of patients at home. The staff of the advisory service does not accept invitations to become involved from anyone except the family medicine clinician and community nurse. The advisory team consists of a palliative medicine physician and a community palliative care nurse, and can usually call on the services of a social worker, and other allied health professionals in the hospice/palliative care service). In many countries the usefulness of the occupational therapist cannot be overemphasized. The occupational therapist visit patients at home, assess what modifications are needed, what equipment might help the patient and teach both the patient and home caregivers how to make best use of the patient’s failing faculties.48

The role of the occupational therapist is entirely advisory; while medication and other prescriptions are managed by the medical clinician and supported by the practical nursing in the community. The benefits of such a service are that 1) the patient (and often some relatives) remains under the care of physicians and nurses they know well but, at the same time, they are getting specialist advice, and 2) there is no threat to the authority or autonomy of the family clinician and

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 29 community nurses who, hopefully, will be encouraged and enabled to provide better palliative care for future patients.32

The advisory team, usually based in a palliative care unit, facilitates admission if there need be, and coordinates consultations and investigations in other units. There is evidence that such services enable more patients to remain at home longer and they may enable more to die at home (if they are called in early enough).49 If, as is recommended, the service operates within a clearly defined geographical area with modest distances to travel, a single nurse can usually be involved with 16-20 patients at any one time, seeing each 2-3 times/week and often telephoning patients frequently and regularly. The average time each patient is under care averages 2-3 months for cancer patients but double that for cardiac, respiratory and some patients with neurological disorders.50

The “success” or “effectiveness” of such a service largely depends on:2

• Members of the primary care team knowing when they and their patient might benefit from specialist medical or nursing advice from a community palliative care team. This requires that they know their own limitations.

• The ability of the clinician assisted by the team to deal appropriately with emergencies occurring in the home.

• The availability of essential opioids.

• The availability of the necessary equipment and aids.

• The ready availability of back-up beds in either a palliative care unit or a hospital unit with which the patient is familiar.

• The extent to which relatives are supported, their needs addressed, and trained in basic nursing care.

This is most appropriate where there are no other nurses working with patients in their own homes.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 30 Nursing Service

Nurses, specially trained in palliative as well as community nursing, provide all the practical nursing a terminally ill patient needs, and demonstrate basic nursing care to the relatives. They may visit once or many times each day, depending on needs, and often lending equipment from the palliative care service.32

Useful as this service can be it is expensive to operate (salaries, equipment and transport costs), and dependent on the cooperation and understanding of sympathetic clinicians who may not know much about palliative care and the nursing needs of their patients. Without the cooperation of a knowledgeable clinician this can be a lonely and stressful job for the palliative care nurse.51 This form of community service often does not offer any form of palliative care education for nurses, which is a major weakness.

Comprehensive Community Palliative Care Service

Operating in a more limited capacity, this service provides a team of specially trained palliative medical and nursing clinicians who provide all care for the terminally ill patient in his home. Confirming the diagnosis, ordering whatever further investigations are needed, prescribing medications, involving home nurses, organizing family support and even performing such procedures as blood transfusion, paracenteses, some and physiotherapy. Any necessary equipment is loaned from the palliative care service base (which need not have its own in-patient beds).52

The benefits are that the patient is guaranteed high quality specialist medical and nursing care round-the-clock at home with well-supported family nearby. Such a service is thought to enable more individuals to die at home if they wish.53 The main disadvantages of such a program are 1) very high cost, and 2) the possibility that medical and community nursing clinicians will either be deskilled or not given the opportunity to practice better palliative care, and 3) because nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 31 they have not been involved in this critical time in the patient’s care, the clinician might be less able to give appropriate bereavement care after the death.14 Such a service can only be expected to operate successfully and amicably when its involvement does not financially disadvantage the clinician when he/she hands over a patient to the service, which often may be to a nursing service.54 This is seen in many regions where palliative care is in its infancy. The reasons seem obvious: 1) there are more nurses available than physicians, 2) nurses are usually more willing to work in the community, 3) nursing salaries are lower than those of physicians, and 4) nurses are well received and better understood by many patients than physicians might be.55 However, such examples of care should be regarded as a short-term model to be replaced as soon as possible by one of the other models described previously. The reasons for this include that:35

• even the best palliative care nurse will encounter problems of pain and symptom management that are beyond nursing knowledge and experience.

• professional support (emotional, social and spiritual) is essential for all in palliative care.

• emergencies occur even when the best care is being provided and both medical input and hospital admission may be needed.

• palliative care is, and always has been, more than excellent nursing care; physicians have a role to play and must be encouraged to expand that role, which may not happen with an all-nurse service.

In some instances, the Community Palliative Care Team is expected to provide palliative care to terminally ill patients alongside their general work with patients not in need of palliative care. This is almost impossible to do, does not help either group of patients, and is to be discouraged. Managers eager to save money and who know little or nothing about palliative care usually suggest such program directions for palliative care services. It is exceedingly stressful for the team members, does not save money and usually results in poor quality palliative care.56

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 32 Emergencies Encountered in Community Palliative Care

Much depends on whether or not those caring for a patient at home can deal with emergency needs of the palliative patient. If medical and community nursing clinicians do not know how to deal with them, they need a Community Palliative Care Team to address the following:19

• Extreme breakthrough pain

• Hypercalcemia

• Hemorrhage

• Spinal cord compression

• Sudden dyspnea

• Pathological fracture

• Acute paranoia

• Urinary retention

• Severe vomiting

• Esophageal obstruction

• Subacute Intestinal Obstruction

• Status Epilepticus

• Equipment useful (but not always essential) for community palliative care

What might be regarded as essential in one area might not even be used or available in another.

Auditing a Community Palliative Care Service

As with every aspect of a palliative care service it is essential to audit it regularly. The audit should be a community team responsibility with time set aside for it, accurate records kept of all discussion at audit meetings. These might be chaired by a senior doctor or nurse or, preferably, by different members of the team in turn. Regular feedback, critical appraisal from GPs and community nurses with whom the team works is essential.18

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 33 Hospital Palliative Care Unit

The hospital palliative care unit refers to a bedded unit within a hospital – whether general or specialist, secondary or tertiary. It differs from a Hospital Palliative Care Team (HPCT) in having beds whereas the HPCT is entirely advisory. In many hospitals the beds are under the clinical direction of the specialists in the HPCT who use them for patients they have been asked to see in other parts of the hospital, patients who have complex nursing as well as major medical problems more easily cared for in the Palliative Care Unit beds. It can, of course, also function when there is no HPCT.57 The benefits of a HPCU include:58

• The senior medical staff are palliative medicine specialists.

• The nurses are trained in palliative care and very experienced.

• The patient does not need to be moved to a hospital or hospice unfamiliar to them.

• Physicians and nurses can still visit the patients from other units in the hospital.

• The patient can usually return to their home ward when the palliation has been successful.

• All clinical records are available in the hospital.

• All diagnostic facilities are available in the hospital.

• Ideally medical students and junior physicians can follow the patient and his or her care regimen both in the original unit and through the HPCU, which provides a rich educational experience.

The downside of a HPCU is that:59

• It is often difficult to persuade management that more can be achieved by having a HPCU than by just having a HPCT advising on patients in the wards where they have been treated in the past. As a small unit with only 4-6 beds it is expensive to operate, especially when the throughput is so fast.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 34 • To be effective it needs the best possible nurse:patient ratio (as in all palliative care) but it is unrealistic and unhelpful to suggest what that should be. Senior management will seldom agree to the establishment of a HPCU, which costs more than other comparable units in the hospital. A useful guide is to regard/describe the HPCU as a “High Dependency Unit” and staff accordingly. Administrators will understand that.

• Frequent visits from ‘allied health professionals’ including social workers and pastoral care all add to the cost of running such a small unit.

• It will sometimes be asked by sceptics if having a HPCU will not de-skill junior medical and nursing staff that would learn palliative care better in the original unit rather than in a small specialist unit. There is some evidence that this can happen. It places a heavy responsibility on the staff of the HPCU to demonstrate what they do and how they do it to all who want to visit the unit. Ideally a HPCU should be the base for a HPCT or, at least, the senior members of the Unit can go to advice in other wards.

Questions that must be asked before planning a HPCU include those raised below:60

• Will the small unit accept only from the other wards and units in the hospital or also admit from the community? This question is particularly relevant when there is no well-staffed hospice in the community or no Community Palliative Care Service or few medical clinicians willing or able to provide high quality palliative care in the community. This will materially affect the number of beds needed.

• What statistics about the benefits and disadvantages of a HPCU will be needed to persuade managers and planners that such a unit is or is not needed? Equally skeptical will be clinicians who have yet to be convinced that any other physicians and nurses can provide better palliative care than they are currently doing in their Oncology or Renal Unit.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 35 • What will happen to a patient admitted to the HPCU, now much improved, who cannot be transferred back to his/her original ward because there are no available free beds? Will he/she have to remain in HPCU or go to an unfamiliar ward?

• When a patient who has been in the HPCU is discharged home to the care of the family physician, which specialist will be responsible for follow- up? Ideally it should be the medical specialist in the HPCU because palliative care will be the focus of care from then on but this will need to be negotiated with other specialists involved. Transfer to the HPCU can easily be perceived as a subterfuge, taking a patient out of the care of another specialist.

• How will a positive atmosphere in the palliative care unit be maintained? Experience of HPCUs in different parts of the world have demonstrated that, like all good hospices and palliative care units, they have a very positive atmosphere, much humor, are often much livelier than general wards, and popular places to work for nurses and physicians – all much to the surprise of other staff within the hospital.

Initially senior nursing and medical management may know so little about intensive palliative care that they will be uneasy having responsibility for the HPCU. This may affect staff support, appraisals, and staffing levels – almost certainly better than elsewhere in the hospital. They will predictably want to keep costs down.

Do not resuscitate (DNR) policy

If the hospital has a clear policy, then it must be followed in the HPCU. If not, then one must be prepared for the HPCU and presented at senior medical and

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 36 nursing staff meetings for explanation and approval. There is likely to be vigorous opposition to what many would see as a major issue in the HPCU.61

Auditing a HPCU

The need for clinical and management audit is as great as, if not more than, in any other palliative care service. It should be given the highest priority, and its records kept transparent for all to see and question.62

Professional stress in a HPCU

The stress experienced by those working in a HPCU is no greater than in any other palliative care service except in one respect – they are working in a unit within a hospital where there may be little if any understanding of palliative care service. They will find that what they do is often misunderstood, seen as sentimental and unscientific, but at the same time other nurses and junior physicians in the hospital may envy their job satisfaction in the HPCU.18

There are compelling reasons for delivering palliative care in an setting and alongside other disciplines.63

• Doing so keeps palliative care in the ‘mainstream’ which is good for both other specialists and disciplines who can learn better end-of-life care and symptom management; and for palliative care staff who, under the watchful eye of their colleagues, are encouraged to use evidence based principles and treatments and to use the expertise of their colleagues.

• Patients’ benefit by having access to consultation from other specialties, available imaging, radiotherapy, and other useful palliative modalities.

• A culture of trust and respect develops between palliative experts and others, fostering early, appropriate and more numerous referrals. If

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 37 designated beds are appropriate, a center of excellence and teaching can develop.

• Any successful palliative care service should reflect the needs of the community it serves based on a needs assessment, and fit the requirements and resources (including financial) of the institution. The program must be flexible and able to adapt to changing hospital priorities and patient needs with the goal of sustaining a long-term service.

• Seeing that high quality palliative care can be provided in a busy medical/surgical/gynecological/oncology ward is a rich educational experience and personal challenge for junior physicians and nurses who may have thought that it was only possible in a hospice.

The hospital, and therefore its Board and Managers, must be able to recognize an institutional benefit for defining palliative care services as well as benefit to the inpatient population. Those developing hospital palliative care services should encourage local administrative authorities to accept symptomatic and end-of-life care as a worthwhile investment in their communities as part of an overall health plan for their region. There are three ways of delivering palliative care in the hospital setting: 1) Consultation service – Hospital Palliative Care Team, 2) Palliative care unit (tertiary or acute), and 3) Combination of 1) and 2) above.

There is no evaluative data to recommend one delivery system over another. Each delivery method should provide continuity of care between home, acute care, palliative care and local hospice, and facilitate an integrated seamless program of services for patients and families from diagnosis to death.38

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 38 Consultation Service - Hospital Palliative Care Team (HPCT)

A consultation service develops in response to the need for expert palliative care. The personnel for a consultation team can be simply a nurse or physician alone or combined with pharmacist, spiritual care or social worker. Those planning a consultation service should not be discouraged by lack of numbers at the outset; however, special interest and expertise are essential to such a program.64

Patients and families are seen in consultation only and the HPCT does not assume responsibility for providing care, despite the frustrations inherent in the inability to ‘control’ patient care. This is the best model if resources are limited or institutional needs minimal, for example, a small local hospital with no oncology service, and for a ‘start-up’ palliative service. Funding is still required and should be arranged before any such service is started.65

Very importantly, a consultation service allows for teaching and support for others in healthcare (physicians, nurses, therapists) and can influence their care of other patients as a ‘ripple’ effect. Once the service is established it is usually found that much time is spent advising on patients who are in the same unit. Patients and families appreciate the extra time and expertise, do better and credibility will lead to more referrals.66

The HPCT may be the contact point for Community Palliative Care Services if these are available and one team member should lead in this. If this is the case a HPCT can facilitate smooth transfer to hospital from home and vice versa.16

Advantages of a Consultation Team (HPCT) over a dedicated Hospital Palliative Care Unit (HPCU) include:27

• No need to fight for space, equipment, facilities

• Minimal personnel commitment (no night call, no holiday relief unless readily available)

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 39 • Ability to train other disciplines by hands- on end of life care and example

• Use of pre-existing diagnostic and therapeutic resources and other hospital staff

• Use of the hospital pharmacy and its specialist

Disadvantages of a Consultative Service (HPCT) include:27

• the inability to develop team expertise in a dedicated unit such as a palliative care unit

• the inability to control medication administration.

• the difficulty (though not the impossibility) of doing research

• the difficulty of doing formal bedside teaching when the HPCT does not have its “own beds”.

• the consultation services having to rely on the staff and resources of the institution to provide such services as physiotherapy, occupational, music, art therapy and pastoral care.

Prior to starting an HPCT there are essential preliminary tasks, which include:68

• Perform a needs assessment to evaluate the wisdom of a palliative team

• Enroll nursing, medical, , pastoral and other colleagues in a working group to develop a proposal for formal presentation to the institution

• Find a sympathetic administrator/planner who will support a proposal

• Meet with Hospital Administration and present the idea/proposal/cost

• Get advanced training in palliative care, read and surf the many good palliative sites on the internet, if available

• Meet with colleagues in other disciplines, oncology, surgery, medicine to introduce the concept of palliative care. Their understanding and collaboration is essential

• Meet with pharmacy administration to enroll their support and inform them of the principles, practice and pharmacopoeia of palliative care. It is

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 40 important to be sympathetic to their concerns re: increased workload, overtime budget, etc.

The success of a palliative team depends on its members. They have to be salespersons, advocates, persuaders and highly trained, skilled clinicians. Above all else they must be consummate communicators. Other colleagues may oppose the plan to start a HPCT because of perceived threats to their autonomous care of their patient or their ability to care for palliative patients.69

It is possible, and sometimes necessary, to have a nurse-only service but most undesirable. He/she will be isolated, lonely, have to persuade/convince and stand up to opinionated medical staff not accustomed to taking advice from a nurse. Such a service is exceedingly stressful and to be avoided, if possible.

Staffing Needs

The staffing needs of a HPCT include:57 • Physician(s): How many physicians depends on whether or not there will be an associated PCU, a Community Palliative Care Service, a Day Palliative Care Unit, educational and research components, and whether the physician works in another specialty such as oncology. Advanced training in Palliative Medicine is not optional but essential. • Nurse(s): Registered nurses with extensive training (and preferably a diploma/degree) in palliative care nursing. • Social Worker: If, as should be the case, many of the social needs of the patient are already familiar to the unit’s social worker there is less need for a fulltime social worker on the HPCT. Access to one with palliative care experience is however very useful. • Therapists: They are not needed on the team if they can be accessed from their departments in the hospital.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 41 • Pastoral Care Worker: Again, invaluable but hopefully can be accessed in the hospital department.

Essential Programmatic Components

Documentation and statistics gathering is easier to establish at the outset of a program. Data is useful for research, audit and justification. Drug records and administration charts must comply with hospital practice and legal requirements). There should be:

• job descriptions for every member of staff – whole-time or part-time.

• referral and acceptance policies and procedures/

• explanatory leaflets on how the service will operate, who takes clinical responsibility, and patient and family brochures.

• specimen reports and recommendations letters.

Operational data should include such information as demographics, age, disease, symptoms, referral source, interventions, follow-up plans, and outcomes (using a validated scale).70,71

It should be ensured that all staff of the hospital – junior and senior, nurses and physicians, social workers and pastoral care workers and all physiotherapists, occupational therapists, art and music therapists, clinical pharmacists and clinical – are sent details about the service; who will benefit from it and how it will operate. It should also be ensured that notices about the service, are put on as many notice boards as possible, and as a minimum, one in each ward office and physicians’ offices. The lead clinician of the new service should announce the service at Grand Rounds, preferably. As the service develops, an attempt should be made to arrange for one session to be devoted to an update on the work and progress of the HPCT.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 42 The hospital switchboard should be fully informed about the service. And, junior medical staff, and those in charge of their continuing medical education, should know about the service because, very often, when things go wrong it is because they were not sure what was expected of them and whom they were meant to contact for guidance. Importantly, the members of the HPCT:72

• must be highly experienced in hospital work, and aware of the workings of the hospital where the HPCT will operate.

• expert in the palliative care of patients with a wide range of conditions (and not just malignancy).

• possessed of considerable skills in diplomacy, tolerance and understanding of the needs and problems of the clinicians who refer patients to them.

• committed to, and happy to contribute to, teaching in almost every unit.

Future development of the HPCT may include:73

• The creation of an inpatient bedded unit within the hospital backing up the HPCT

• University affiliation

• Local national and international recognition, such as through a website

• Symposia and seminars

• Collaborative research with other PCUs, HPCTs and free-standing units

Free–standing Inpatient Unit: Palliative/Hospice

A freestanding unit is one not within a hospital, be it a general one or a specialist one. It may be on the grounds of a hospital or totally separate from a hospital, miles away in another part of the town or city. Whether it is called a palliative care unit or a hospice is a decision that must be made by the Trustees establishing it, bearing in mind that the general public (except in French-speaking countries) still seem to prefer the term ‘hospice’ while healthcare professionals understandably prefer palliative care unit.74

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 43 What makes any palliative care unit or hospice different from a hospital is not its size (although most are small units with 20- 30 beds), but the holistic, personalized, flexible program, and the attitude and focused commitment of the staff. There must be an identified need for care in a hospice according to the pattern of death, and the structure of the society. There must be good reasons why the palliative care unit cannot be within a hospital or palliative care be provided by a hospital palliative care team (HPCT).75

A well-conducted needs assessment is essential to define the target population, major clinical problems, existing services and the networks in the community being served. Annual mortality statistics are the starting point, such as:55

• What is the total number of people who died in that community?

• What is the main cause of death?

• Where do people die? Own home, care home, home of relatives, hospital?

• Where do they say they want to die? (Almost all will say ‘home’)

• What is the trajectory of death? (Slow decline, alternating highs and lows, etc.)

If it is a culture where family bonds are strong and families feel that it is their duty to care for the patients no matter whatever the cost to them, and the patients want to die in their own beds then maybe it is better to have a second opinion on whether a community palliative care team might be more appropriate or a unit for short stay to address acute problems (combined with a such a community team). If patients want to remain at home as long as possible but not die there, a unit may be needed solely for ‘terminal care’ but it will soon be known as a ‘death house’.76

If it is a community where there are few relatives to care for their loved ones at home, few nursing homes and poorly developed community services then a long- stay unit is the best solution for offering palliative care. It should be noted that

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 44 even in a hospice or palliative care unit there can develop the problem of ‘blocked beds’, which are those occupied by patients who might be better at home or in a nursing care home but no such places are available.14

In areas where palliative care is in the pioneering stage it might be necessary to demonstrate to health authorities the benefits of hospice, the costs associated with it, the impact of care on the patients and the families in order to convince them to accept the model of care, and to integrate it into the existing health care system. Making the right choice for the palliative model of care is critical.27 When training others in palliative care the most difficult task is to change attitudes and to acquire the right communication and practical skills. So practical training is a vital part of the education project and an inpatient unit is the place where this can best be done. It can be questioned whether or not any palliative care service should ever be started if there are no plans to engage in education and training.53

There are some benefits of having the palliative care or hospice units within the grounds of (but not inside) a general hospital:77

• Proximity to medical specialists such as , intensive care specialists, etc.

• Laundry, laboratory, pharmacy, catering facilities close at hand

• Junior medical staff to share out-of-hours calls

• Proximity to diagnostic services, physiotherapy, , social work, pastoral care

• Heating services and maintenance staff nearby

Other considerations include:

• What other essential things need to be considered at the planning stage?

• If it is to be a short stay hospice (most people being discharged within 14 days) what care services will they be able to access when they leave the hospice? nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 45 • Are the community services well enough developed to take over the care of discharged patients? Are there other services that can establish links (, , other charities)?

• What arrangements can be made for investigations (, laboratory) or for receiving such further treatments (radiotherapy, surgery, chemotherapy)?

• Will the hospice have its own pharmacy and how/where will be ordered, procured, delivered and stored (meeting all national legal requirements)?

• Will the hospice have its own mortuary or will it be able to use the facilities of a neighboring hospital?

• How soon after a death must a death certificate be issued? (This has relevance to the duty hours of medical staff).

• If post mortems/autopsies are ever needed where would they be done and how will bodies be transported there?

• What can be learned from others?

Patient Demographics

It is important to determine if the palliative care program is going to be for adults, children or for both? If children are to be cared for in a ‘mixed unit’ there will need to be special rooms or even an annex set aside for them and nurses and physicians trained in pediatric palliative care. Questions to consider include:61

• Will children and adults with congenital conditions leading to dependence on life-sustaining treatments and/or long-term care be admitted?

• Will people be admitted if they have acute, serious but not necessarily life- threatening illnesses (such as severe trauma, leukemia or acute stroke), where cure or reversibility is a realistic goal, but the conditions themselves and their treatments pose significant nursing and care burdens?

• Will people be admitted with progressive chronic conditions (such as peripheral vascular disease, low-grade malignancies, chronic renal or liver nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 46 failure, stroke with significant functional impairment, advanced heart or lung disease, frailty, neuro-degenerative disorders and dementia).

• Will people be admitted with chronic and life-limiting injuries from accidents or other forms of trauma?

• Will people be admitted with terminal illnesses (such as, end-stage dementia, AIDS, terminal cancer or severe disabling stroke, cardiac, renal or respiratory failure), from which they are unlikely to recover, and for whom intensive palliative care is the predominant focus and goal of care for the time remaining?

Potential patients include:78

• Patients expected to die within days

• Long stay patients

• Short stay patients admitted, for example, for 10-14 days to control severe symptoms or psychosocial problems. (In most units in the West the average length of stay is 11-14 days).

• Respite care to offer families a break from exhausting care.

When offering respite care, its important to establish whether such stays need to be booked in advance or be offered as the need arises. The need for respite care is greatest when the unit is associated with a community palliative care service. One problem is that many such patients are admitted for “respite” too late and do not return home but remain and die in the unit.

It is generally accepted that in a population of 1,000,000 the number who will need a palliative care bed is as highlighted below.40

• With malignant disease: 400-700 per 1,000,000 population • With non-malignant disease: 200-700 per 1,000,000 population • of those with neurological diseases: 17 per 100,000 population • Deaths of those with psychogeriatric disease: 4 per 100,000 population nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 47 • Deaths of those with chronic cardiac/respiratory disease: 500 per 100,000 population

Typical statistics for palliative care are listed below.79

• Average length of stay 11-14 days (lowest when there is a community palliative care service or CPCS)

• Average age 65

• Deaths at home 40-50% (not necessarily higher if there is a CPCS)

• Is the hospice going to have an incorporated outpatient/ambulatory or maybe a day hospice/unit or other palliative care services? If so this will affect the number and type of rooms, toilets, ambulance and car access, access, the need for activity rooms, treatment rooms and equipment.

Staffing the Unit

Nursing staff:

A good rule is to aim for a nurse/patient ratio of not less than one nurse to 1.5 patients throughout 24 hours. At least 50% of nurses on duty at any one time should be registered (trained) nurses, and the others nursing auxiliaries who have undergone basic nurse training plus in palliative care nursing training. Most experienced units do not use student nurses rotating through different specialties, able to spend only a few weeks in the palliative care unit, but have a permanent, designated palliative care staff.80

Medical staff:81

How many physicians needed will depend on:

• The number of beds, and whether it is a short-stay or a long-stay unit.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 48 • Whether the physician will also be involved in any community palliative care service.

• Whether the physician will be responsible for advising in a Day Hospice

• Whether the physician will also work as part of a hospital palliative care team

• The amount of education, research and management expected of the physician.

• Whether he/she will be supervising junior physicians.

• Whether he/she will have administrative responsibility.

• Whether he/she has time for research written into his/her contract.

A rule of thumb is that one full-time physician can attend to 10-15 beds, provide the medical input into a community palliative care service caring for 40 patients at any one time, be available to advise in a Day Unit, and spend up to 3 hours per week on education. Junior physicians who rotate through the unit for experience should not be regarded as service physicians because they require so much of the senior physician's time in supervising and teaching. A critical issue is "out-of-hours" coverage; for the sake of patients and nurses, such coverage should not be provided from a (senior or junior) physician that lacks experience in palliative or hospice care.82

Social Work Staff:

It is essential that every comprehensive palliative care service (which may include inpatient unit, community care, day care and even hospital palliative care team) has an experienced social worker on staff. It is, however, recognized that in many areas there are few, if any, social workers and even fewer with training or experience in palliative care. Their work will usually focus as much on staff as on patients and relatives, and be concerned with coping strategies, loss and personality problems.83

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 49 The "simpler " tasks of a social worker, such as facilitating discharge, arranging help in the home, obtaining financial assistance, making special holiday arrangements, etc., can usually be dealt with by someone appropriately trained, though not necessarily accredited or paid as much as a social worker.84

Allied Professionals:

Any inpatient unit with more than 15 beds, regardless of other services it provides, will need a physiotherapist on staff. Units with 30+ beds need a full- time physiotherapist. Good palliative care involves rehabilitation, not simply the aim of getting patients back to their homes and loved ones. For this, a physiotherapist and, if possible, an occupational therapist are essential. Very useful but not strictly essential are clinical pharmacists, clinical psychologists, and . Often they offer their voluntary services.69

Pastoral Care Staff:

It is important that a hospice or palliative care service and its team pay due and equal attention to the spiritual needs of the patients as to their physical and psychosocial needs. This generally means that a priest, clergyman or someone trained in pastoral care should be on staff, or be readily available. Larger units (>25 beds) need a full-time pastoral care worker, if possible. Others may use local clergy. It must be remembered that this clergy or will also support staff and volunteers, contribute to and organize educational courses, and conduct many funerals. In multi-faith societies, it is necessary to have access to Rabbis, Imams, Hindu teachers, and clergy belonging to other faith traditions.76

Administration and Management:

Administration and management is composed of a planning group involving mature people familiar with (though not necessarily expert in) palliative or hospice care, able to contribute experience and skills in management, building, law, health care administration, medicine, nursing and spiritual care. Generally, it nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 50 involves a professional advisory committee, non-executive but immensely important and influential group, reporting directly to the organization’s Trustees. Much of the efficiency and credibility of the palliative or hospice care units will flow from this committee and its influence and guidance. Its members, usually 10-12 in number, should be representative of specialist palliative or hospice care (both medical and nursing), family medicine, oncology, hospital and community nursing, social work, education and research, as well as clergy and allied professionals. As with any committee, much depends on the authority of the chairperson who must be able to meet regularly with the senior care staff. Administrative and management staff responsibility is to advise on all aspects of the professional work of the palliative or hospice care units, including staffing levels, recruitment, documentation, protocols, audit, curricula, relations with other clinical services, research and possibly ethics, etc.85

Appointment of Senior Staff

Provided there is a Professional Advisory Committee and the Trustees, the order in which senior staff are appointed hardly matters, though logically the senior administrator or chief executive should be given priority, followed by the senior medical and nursing staff, each of whom will then share in the recruitment and appointment of their own staff members. It cannot be over-emphasized that even the smallest palliative care or hospice unit must be run on business-like terms, with well-defined lines of accountability and communication, written procedures and protocols, system reviews in each department, clinical and organizational audit systems which operate from Day 1, and a defined public relations policy.86

Experience suggests that raising capital for palliative or hospice care is relatively easy when people already know what it is and how it can help them. The bigger challenge is raising sufficient revenue to maintain the service, particularly if there are inpatient beds. The most expensive item is salaries, usually accounting for 80-85% of costs. Though palliative care or hospice beds are certainly slightly

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 51 more economical than beds in acute or even long-stay hospitals, they are still very expensive. A good rule, when planning an inpatient service is to budget for revenue requirements only 10% less than current costs in local acute units.87 Disadvantages of a freestanding unit include:

• Cost, usually higher than planners expect

• Only able to accept a limited number of patients, a small proportion of the many who need its services

• A management structure that might be unlike those of other local health care units

• Families might feel excluded because the patient is taken out of their care

• It is still “an institution” and as such, no matter how hard everyone tries, it is never “home “

• Its practice and principles will not be seen and learned by the many physicians and nurses who work in general hospitals where 90% of the terminally ill receive care

Palliative Day Care or Hospice Unit: Benefits

This is a model of care designed for patients being cared for at home (or in the home of a relative or in a Nursing Home/Rest Home). It enables them to receive attention to all aspects of their illness and suffering, physiotherapy and occupational/music/art therapy, and to meet with others in similar situations within a friendly social, non-clinical environment.88

The patient is enabled to remain at home as long as possible (which is what most patients report desiring). By attending the Day Unit, patients and caring relatives will benefit from:71

• Seeing the palliative care nurse (and the medical specialist if the nurse deems that necessary), be encouraged to report every aspect of their suffering, ask all the questions they want and get all the advice they need.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 52 When needed, they can have wound dressings done, constipation addressed, and bladder lavage and catheter change.

• Seeing palliative care- trained physiotherapists, occupational/art/music therapists to help them to live life to the fullest within the limits set by their illness. (Experience shows that they take up new hobbies and interests, become more positive in outlook, and consequently experience fewer symptoms).

• A few hours free to do whatever they want to do; family caregivers may have time to rest or be on their own with some of the palliative care team to ask questions, get advice and, above all else, feel supported.

It is very possible but not proven that patients attending a Day Unit are able to remain at home longer than would be the case if they had not attended one. There is much anecdotal evidence that relatives feel it is less stressful caring for a patient at home if the patient can attend a Day Unit perhaps once or twice a week. Again there is anecdotal evidence that patients feel more positive, more able to cope, and less depressed when they attend a Day Unit.7

Operations

In most programs, patients are brought from their homes in a car or "minibus" (often driven by a volunteer) to the Day Unit in the morning, spend the majority of the day there and return home later in the afternoon. On arrival they are welcomed by a staff member or volunteer. They join the others attending for community time and refreshments, and then spend time on creative activities of their choice under the guidance of the therapists. They will also spend some time with the nurse or physician. Lunch is leisurely and is tailored to their needs and energy. The time after lunch is spent in comfortable chairs, resting, or being entertained by special guests or professional caregivers and treatment providers.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 53 Accommodations

Accommodations include:89

• A hall/room about the size of a large lounge or tennis court with a ramp and doors wide enough for wheel chair entry. • Work tables that might also be used for meals and sufficient chairs for sitting at the table and easy chairs for lounging in. • A small room large enough to accommodate an examination couch, small table, 2 chairs and (desirably) a hand basin. • A small room with a table and 2 chairs, filing cabinet, (a computer if possible), and notice board of some sort for use as an office/interview room. • A toilet, which permits wheelchair entry. Ideally the toilet and hand basin should be designed for disabled users.

If funds and space permit it is useful to have two rooms rather than one large room – one for activities and crafts, the other for socializing. Equipment takes up much space so adequate storage space must be provided either in the unit or nearby. Not essential but very useful is a small cloakroom where patients outdoor clothes can be left, and another small room where staff and volunteers can withdraw.90

Location

The Unit may be part of a hospital/hospice/palliative care unit or be on the grounds of a healthcare facility. It may be run in a church or community hall not otherwise being used during the day. Essential is that there must be easy vehicle access and that it must be convenient for access for the population being served. Long journeys even in comfortable cars can be tiring for these patients.89

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 54 Staffing

The key member of staff is the Day Unit Coordinator (or whatever title is selected). The professional background of the day unit coordinator is not as important as their skills, such as their sensitivity and understanding of the principles of palliative care. Most have backgrounds in nursing or social work or occupational therapy but in the new role may not use the hands-on skills of those professionals as much as their "person skills". A useful ratio is 1 staff member and/or volunteers to every 2 patients (depending on levels of dependency).

The nurse and each of the therapists may either work exclusively in the Day Unit or visit it from the wards of the hospice/palliative care unit/hospital if nearby (again depending on how many patients there are, what their needs are, and how much time needs to be spent with each patient).22

The volunteers need very careful selection and comprehensive training. They are directly accountable to, and report to, the Coordinator but are ultimately accountable to the Volunteer Services Manager of the palliative care service or hospice and hospital. They act as friends, assisting with handling frail patients, serving meals and assisting with activities under the direction of the Coordinator or therapist.

Activities

It is important to ensure that activities are what the patient wants to do and not merely diversional – helping the patient forget his/her illness and fate. Everything done in a Day Unit is geared to enhance quality of life, restoring patient dignity and providing patients with a sense of being valued and useful. Examples of activities include:91 • Clay modelling • Painting Pottery • Indoor gardening nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 55 • Carpentry • Stamp collecting/sorting • Computer programming • Rug making • Crossword solving • Origami • Knitting • Dress making • Enamel jewelry • Making greeting cards • Computer games

Volunteers

Usually the volunteers working in a Day Unit have already worked in other clinical areas of the hospital or palliative care service where their sensitivity and calm presence had been noted. After being selected for the Day Unit, volunteers generally undergo further orientation. They are taught the aims of the Unit, the conditions of the patients who will attend the spectrum of suffering they may encounter and how the palliative care nurses and therapists will respond. Above all else they are taught to be friends and companions to the patients rather than caregivers, and encouraged to help create the most relaxed, informal atmosphere possible as well as one that feels safe to patients.92

For most volunteers their time in the Day Unit will be the closest and most prolonged they will ever have had with people in the final months of life, many of them of similar age to them or their children. At the same time as they see patients psychologically thriving in the center, they will also notice that they are getting frailer and near to death. Over the time volunteers work in the Day Unit they will make many friends all of whom will eventually die, some much sooner

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 56 than the volunteers had expected. Understanding the support as well as sensitive supervision needed for volunteers is essential.4

Patient Enrollment and Attendance

Patients should be accepted on the understanding that their condition and how much they have benefited and/or might continue to benefit from attending, is reviewed every 12 weeks. They may then have a spell of not attending and then return after a few months if it is thought they might benefit. If this is not done the Unit may find itself with a patient whose condition is not terminal attending for years. This helps neither the patient nor the other patients. Care has to be taken with particularly young patients who may be discouraged if they attend on days when everyone else is elderly, sharing no common interests with them. Seeing such a young terminally ill person can also be extremely distressing to older patients.23

Some units find it preferable to have separate days for male and female patients with morning activities and afternoon visitors tailored to each group.

It does not appear to matter if people with different illnesses are put together – those with cancer mixing easily with those suffering cardiac or neurological problems. Invariably patients discuss with each other what they suffer from, what care they have had and how long they expect to live. In spite of this reality, there is usually an exceedingly happy, positive atmosphere where everyone wants to help another. It follows, however, that there are times of sorrow when one member dies at home or has to be admitted to an inpatient unit. If that unit is adjacent to the Day Unit then they can, and usually do, come back to enjoy the Day Unit with old friends. This is one of the great advantages of any Day Unit being part of a hospital/palliative care complex rather than free-standing.93

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 57 Audit of a Day Care Unit

It is essential to audit a Day Car Unit, for all members of its staff/team to take part and for its records to be accurate and open to scrutiny. Topics that might usefully be audited include:

• Conditions of patients • Reasons for referral • Length of time attending unit • Transport of patients • Views of medical clinicians/family physicians • Value of different activities • Transport service • Work of volunteers • Views of relatives • Time spent with relatives • Quality of life measures • Occupational activities and usefulness • Reception of patients on arrival • The work of nursing • Finances • Food preferences • Bowel needs/protocol • Views of community nurses • Record keeping • Dietary issues

The Assessment Of Palliative Care Needs

To assess the palliative care needs of a local population, three strategies can be adopted: the epidemiological, the comparative and the corporate.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 58 Epidemiological Approach

The epidemiological approach makes use of local cause-specific mortality in diseases that are likely to benefit from palliative care services, and then relates this to the type and frequency of symptoms experienced by patients suffering from these diseases. It reviews the effectiveness and cost effectiveness of care using local, national, and international evidence. Lastly, it compares these with the patterns of locally available specialist and generic services to determine how well this need is being met.

Comparative Approaches

The comparative needs assessment approach examines levels of service utilization rather than disease categories. A common approach is to compare and contrast the local levels of activity against national averages so that areas of specialist practice can be examined for obvious disparities in equity of provision. But there are a number of difficulties in this approach. The main limitation is that it does not assess unmet need, which must then be evaluated by other methods. Comparing a locality with other regions is problematic, not least because populations can vary considerably in terms of demographic make-up, ethnicity and social deprivation.

Corporate Approaches

The corporate needs assessment approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs. Valuable information is often available from a wide range of parties; for example, managers who work in primary care settings, physicians and other healthcare professionals, and importantly patients and their families.

The corporate approach is essential if policies to meet unmet needs are to be sensitive to local circumstances. There are, nevertheless, caveats in adopting this

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 59 approach. Those undertaking the exercise must be aware of bias and the politics of vested interests. Also, the assessment may produce a multitude of needs, although criteria can be used to prioritize these needs (i.e., the importance of a problem in terms of frequency or severity, the evidence of effectiveness of interventions, or the feasibility for change). Needs assessments that do not include sufficient attention to policy implementation will become little more than academic or public relations exercises.55

The Palliative Care Team

The delivery of palliative care involves many dimensions of care. Physical symptoms need to be addressed through expert assessment, diagnosis and pharmacological and non-pharmacological strategies. Likewise, psychosocial distress is relieved by similar careful assessment and delivery of care to the patient and their caregivers; care which may include financial assistance, practical aids, counseling, targeted care of children and ongoing emotional support. Such wide-ranging care is ideally delivered by a multidisciplinary team.83

The multidisciplinary team may be a dedicated palliative care team that consists of specialist palliative care medical and nursing staff, social worker, physiotherapist, pastoral care, volunteers, and others. It may also be a virtual team, which forms around the patient and caregiver with palliative care needs. A virtual team may consist of the medical clinician, primary specialist, palliative care specialist (physician or nurse), nurse or medical clinician, community nurse, local pharmacist, social worker, school support staff, and perhaps a spiritual care person with whom the patient has a long-standing relationship. Communication is the key to ensuring that such a virtual team is able to function and support the patient and each of the team members, who have been brought together because of the shared responsibility of caring for that patient. Such virtual teams are also often created as an extension of core palliative care teams, as dying, like living, is a community event which touches many lives.94

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 60 Coordination of such teamwork is critical. Strategies to assist professionals share information and better coordinate care including the teleconference and multidisciplinary team meeting. At such meetings, pertinent patient details are shared and goals of care are refined and documented. Ongoing review and sharing of information between the many partners in care may occur through faxes, emails, phone contacts, shared clinics, and family meetings.85

To be a strong team, palliative care team members need to have a common ideal and understanding of the team role and the contribution each team member makes to achieve successful team outcomes. Time spent exploring the values underpinning both the individual motivations and the collective identity of the team is important. Each team member contributes specific skills, experiences, attitudes, and values to the whole. The team is seen to represent and provide a unified model of care. Team activities such as debriefing, service planning, academic development and socializing together assist the development of a strong team, which is able to sustain and support its members.76

It is neither possible nor advisable for palliative care teams to provide direct care for all patients with palliative care needs. Therefore, models exist to assist teams to direct their efforts to those patients most in need of specialist care and to provide leadership and education to the individuals and teams with which they come in contact. Within every such clinical encounter there exists an opportunity to model the palliative care approach and to act as change agents. The term ‘change agent’ is used in the implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of the new way of doing things and providing leadership to others. In this way, other clinicians observe and incorporate that practice into their care. For consultative palliative care teams, working alongside other clinicians, there is an educational opportunity in every consultation. Referring teams increase their knowledge and expertise in providing palliation through case-by-case clinical knowledge sharing

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 61 and observing the impact of palliative interventions, whether they are pharmacological or effective communication or the power of teamwork.86

In addition to the clinical care provided, each team member participates in quality improvement and educational activities. These may include the implementation of end-of-life care pathways to improve care of the dying, introducing pain as the fifth vital sign to improve pain assessment and documentation, development of therapeutic protocols and practice guidelines, clinical updates for the ward staff, education of undergraduate and postgraduate students, and awareness raising activities for staff, patients and caregivers such as World Hospice and Palliative Care day promotional activities.95

A fundamental practice focus for hospice and palliative care is the plan of care, which is developed with the patient and family as the unit of care and members of the interprofessional team. At very minimum, the interprofessional team includes the physician, nurse, social worker, and clergy.96 The key person in the team is the patient (and also the patient’s family). To exclude the patients from the team is to render them passive recipients of their care rather than partners in decision-making. Health care in modern society has often been based on paternalism – ‘the professional knows best’ – rather than being about partnership and patient autonomy. Palliative care seeks to redress this balance.88

It could be argued that the primary goal of teamwork is to offer the best possible quality of life for the patient. Effective teamwork depends on good communication, effective leadership and coordination. Individual team members require to know their own limitations and to share in decision-making and formal review. Several factors, therefore, contribute to successful team management. In addition to an individual's role within the team, there is shared decision-making, effective communication and common goals. Certain role functions and dysfunction also need to be taken into account. These include role expectations, ambiguity, conflict and overload.18 nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 62 Without a doubt the members of the team in palliative care face particular stresses and strains as a result of working with dying patients and their families. It is therefore of paramount importance to pay attention to staff support and continuing education.

Care responsibilities extend beyond the death of the patient and offers bereavement care to families for a minimum of one year. Relief of suffering and quality of life (QOL) for individuals and families are enhanced by:97

• Providing effective pain and symptom management • Addressing psychosocial and spiritual needs of patient and family • Incorporating cultural values and attitudes in developing a plan of care • Creating a healing environment to promote a peaceful death • Supporting those who are experiencing loss, , and bereavement • Promoting ethical and legal decision making • Advocating for personal wishes and preferences • Utilizing therapeutic communication skills in all interactions • Facilitating collaborative practice • Ensuring access to care and community resources through influencing and developing health and social policy • Contributing to improved quality and cost-effective services • Creating opportunities and implementing initiatives for palliative care education for patients, families, colleagues, and community • Participating in the generation testing and evaluation of palliative care knowledge and practice

Reliance upon the interprofessional team as a key factor for successful outcomes in palliative care requires an understanding of the distinction between interprofessional and multidisciplinary practice. In the traditional multidisciplinary team, the physician primarily directs care of the patient, and the family needs may or may not be considered. Multiple disciplines of the healthcare team may

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 63 be involved in the individual assessments and in the delivery of care, although efforts by these team members are often uncoordinated and independent. The primary mode of communication among disciplines is the medical chart. The result is often incomplete communication between professions, lack of accountability, and tendency for each discipline to develop its own patient care goals.

Family needs are often unidentified and most often are not incorporated into the overall plan of care. In contrast, in an interprofessional model, communication and decision-making among team members is collaborative, with leadership shared and based upon primary patient and family needs and goals. The identity of the interprofessional team supersedes personal identities and agendas, and the concept of the whole is greater than the sum of its parts is valued and respected. The interprofessional model facilitates team members to (a) directly interact with the patient and family, (b) share information among team members, (c) provide consultation to one another, and (d) work interdependently together to achieve the goals identified by the patient and family.29,52,66,98

A dynamic and outcome-oriented interprofessional team requires collaboration, leadership, coordinated decision-making, and conflict resolution. Collaboration is defined as the ability to work with others, especially on intellectual endeavors. It is the process of collaboration that empowers team members to act as decision- makers within the group. For example, if a question on nausea and vomiting arises, various members of the team may provide observations and opinions in an effort to maximize the relief of all components of nausea and vomiting. Using a true collaborative process, the ultimate decision-maker regarding this aspect of care would not come to a conclusion solely benefiting one member or one member’s own perspective, but rather would make a decision reflecting the team’s total input. Through collaboration, effective patient- and family-driven quality outcomes are achieved.94,99,100

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 64 Palliative care differs from the traditional medical model in which the physician is the sole leader of the multidisciplinary team. In the palliative care model, leadership is filled by the member of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals. In addition to achieving patient and family outcomes, leadership is essential to facilitate and optimize the professional potential of each team member’s contribution. Also, in the traditional multidisciplinary team, the physician, as team leader, is the primary decision-maker for the care team. In contrast, in a true interprofessional team process, coordinated decision-making among team members is necessary to achieve quality patient and family outcomes. In order to sort out which member or members of the team would be the most appropriate in contributing to the decision-making process, the following questions, should be considered: “Who has the information necessary to make the decision?” “Who needs to be consulted before the decision is made?” “Who needs to be informed of a decision after it is made?” Certain levels of decision-making may be made through individual members of the team (i.e., titrating a pain medication based on patient needs), whereas other levels will require input from the entire team as a whole (i.e., developing a care plan). Poor, fragmented decision-making results from failure to include appropriate team members in the decision-making process.80,101-103

Because of the interdependency among interprofessional team members, professional conflict will inevitably arise, which may be beneficial and stimulating to an interprofessional team. Respect and trust in each team member’s skills, knowledge, expertise, and motivation are imperative. Lack of respectful conflict will result in uniformity of the group, which may stifle the creativity and the professional advancement and development of team members. Diverse ideas and opinions are often the impetus for innovative solutions for patient care problems, and in the process may deepen the professional dialogue within the team. However, conflict becomes destructive when it is personalized or viewed as a threat to a member’s role. Thus, the art in managing conflict is not to avoid it, nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 65 but to manage it effectively so that team members, patients, and families can receive its full benefits.31,84,104

Palliative care embraces a number of different frameworks and approaches to meet the needs of the whole person. As soon as the many dimensions of dying are aired, the aim of care focuses more sharply on providing maximum comfort and support, and engaging in broad endeavors to do so. Moreover, the origins of palliative care lie in the areas of religious care and nursing, rather than medicine, and palliative care draws heavily on a broad spectrum of disciplines, knowledge, skill, experience and creative thought.24

As mentioned previously, palliative care teams may include nurses, physicians, and social workers; as well as volunteers, chaplains, allied health professionals and a multitude of varied therapists. Medical science currently advances the interplay of the physical, functional, emotional, psychological, social and spiritual aspects of wellbeing and more lately has supported the development of multidisciplinary approaches.10 The features of multidisciplinary teams are well understood in current clinical practice. Professional identities are clearly defined and team membership is secondary. Leadership is often hierarchical. Many practitioners in healthcare teams work as wedges of a pie, each with their own clearly defined place in the overall care of the patient, contributing their expertise in relative isolation from one another. In many settings, this may be the practical limit of the teamwork concept.30

Interdisciplinary function is generally the aim of specialist palliative care teams, with members contributing from their particular expertise. The team shares information and works interdependently. Leadership is task-dependent, with tasks defined by the individual patient’s situation. The analogy of the hand is appropriate; individual digits of differing ability, function and dexterity work together to achieve more than the sum of the individual components.105

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 66 It needs to be acknowledged that team structures vary widely within palliative care. The sole practitioner is one extreme — hardly a ‘team’, but nonetheless providing a very valuable service. This situation may exist because of geographical constraints, or patients may choose to align themselves with a sole practitioner, of whatever available discipline, with (hopefully) a silent, unseen team in support.106 The other extreme of team composition is the transdisciplinary approach — a team in which role release occurs. Roles and responsibilities are shared and there are few seams between the members’ functions. This means that a team member’s particular expertise is not transparent to the patient or the consumer. This is not a model typically used in healthcare.88

In the business world, organization theory has developed the concept of cross- functional teams, assembled to create sets of skills for a particular purpose. They are comprised of experts ready to move quickly and flexibly together; to adapt to changing needs with a diversity of team players — in essence, an interdisciplinary team. The synergy that is created by these teams is beneficial to the patient, the family and the team members. Interdisciplinary teamwork requires the “interaction of the team to produce the final product”. It should be able to achieve more than the sum of the individuals involved. Successful teams may possess combinations of skills that no single individual demonstrates alone.69,98

When there is some role overlap, resources are actually multiplied and patients can have access to a multiskilled practitioner who has learned from and been extended by different professions and yet may suite individual patients in terms of their primary need or ‘personality fit’. Family members may need to relate to different members in the team in order to have their own needs met without a sense of compromising the patient’s therapeutic relationship with the original team member.16

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 67 Cross-functional or interdisciplinary teams provide a unique forum for creative problem solving, especially if every member’s contribution is genuinely solicited and respected. Different frameworks — new ways of seeing — may be the keys to resolving not only clinical but also ethical dilemmas. These dilemmas abound in palliative care.85

Cross-functional teams are flexible. People learn how to cover each other, not perhaps in the most specialized areas, but in terms of general patient support. There is a sense of team responsibility for the wellbeing of the patient. Members cover each other’s weaknesses and maximize each other’s strengths. Cross- functional teams are able to make speedier responses to patient needs when a crisis arises. Careful documentation of explicit details and skilled communication of the nuances of need and care contribute to excellent care, even when decisions need to be made quickly and at inconvenient times.107

Practitioners of diverse disciplines may all play fundamental roles in complex assessment. Ideally, this is much broader than a traditional medico-nursing assessment. If there is a process for and expectation of collaboration, an understanding of how each discipline might approach treatment will avoid conflicting advice, timelines, and goals. Given the different ways health professionals are remunerated for their work, especially in private practice, the time required to achieve these synergies may go unrewarded.69

This interdisciplinary team model works extremely well in contexts such as mental health, rehabilitation, and aged care, but less well in acute care, where timeframes are short, cost considerations are paramount, and lines of liability determine process. In contrast, referral processes between professionals who do not truly work together can be so slow, clumsy and burdensome that it may become easier to choose not to refer.108

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 68 Best models of service provision and leadership for palliative care have not yet been identified. In most services, teams have evolved as funding and opportunity have allowed. Often leadership is provided by the professional who has been present the longest. Sometimes leadership is provided by the sponsoring agency, not necessarily with a palliative care focus. A recent study in the United Kingdom identified a wide variation in services across several dimensions, including location, management patterns and resource use. The study highlighted problems in how teamwork is conceptualized and delivered. Some writers suggest that membership of the team extends beyond the clinical role to encompass administrative, operational and financial management staff. It would seem that in the palliative care literature the need for teamwork is a given, but what an optimum palliative care team looks like depends on many contextual factors.105

Team conflict issues, role ambiguity, role overload, interpersonal conflict, inadequate communication and leadership dilemmas are well recognized challenges to creating good teamwork in the delivery of palliative care. Team conflict and difficulties can develop because of internal or external stresses, individual issues or a corporate problem. Communication, both formal and informal, within a team is a major factor. A longstanding team may become self- sufficient, or resistant to new ideas. Underground communication (i.e., rumor, gossip) may destroy the trust and openness required to function as a team. Conflict between two team members and problems such as a dominant member, an isolated member, team factions and team secrets are all potent means of disrupting team equilibrium and function. Poor definition of authority and individual responsibilities and roles, poor performance feedback processes, and reluctance to cooperate, collaborate and compromise can all undermine a team’s capacity to achieve its goals.32,109

As teams grow larger, subgroups and alliances, lobby groups and other agendas may distract the team from the ‘main game’. It becomes more difficult for the whole team to take responsibility for the quality of care offered to patients and nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 69 families. Members have less of a sense of their participation in what a service delivers.110

Such issues put great pressure on the leadership of a service. Leadership may be provided more from a base of clinical expertise than leadership skill. Some leaders are better managers than they are leaders, and some palliative care teams are comprised of several leaders who find it difficult to follow. While there is much written about leadership issues generally, research in the area of palliative care team leadership would be useful. One is reminded that leadership is always dependent on the relationship between the leader and others and the context in which the task and the process take place. Those contexts are as numerous as they are confounding.38,111

The opportunity for genuine consultation and collaboration offers great benefit for the patient. These benefits have been an integral part of the practice of medicine for a long time, but the concept of who has the final say when there is conflict may still present difficulties. In palliative care, the final decision-maker is the patient, and the patient uses many pieces of information, many sources of support, and their own values as a guide.92

Practitioners who engage in teamwork benefit from the support and wisdom of diverse colleagues, but also need to be prepared to be challenged and, at times, to practice courage and humility. A challenge for specialist teams is to support primary caregivers, such as family medicine clinicians and community nurses, in caring for their patients. The patient’s primary caregivers may need encouragement to work in a team. In the early stages of working closely with others, the time and effort required for good communication seems costly. The dynamics of mutual inclusion are not always easy. Communication is a core requirement to establish roles and responsibilities. A well-constructed formal summary of assessment is a valuable basis for collaborative care. Teams should

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 70 try to develop some continuity in who interfaces with a specific primary caregiver, to allow relationships to develop and to secure referral pathways.64,83

Models incorporating shared roles and responsibilities offer more than the sum of the competencies of the individual team members. A true benefit of these models is that each team member can support and further the therapeutic goals of other team members. Opportunities for research and investigation may multiply. The result is that the healthcare system as a whole remains responsive to the changing needs of the community it serves. It may be that, just as palliative care has evolved over a number of decades, the challenges of multi- and interdisciplinary teamwork will help with the evolution of new approaches to patient care in broader contexts.57

Family Caregiver Role

A family caregiver is a member of the family who has chosen or who has been designated as the caregiver for one or more family members who cannot manage normal activities of daily living without help. There are several definitions of family caregivers, which are discussed below.2

The family (informal) caregiver is any relative, partner, friend, or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an individual with an acute, chronic, or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care. The family caregiver is also someone who is responsible for attending to the daily needs of another person. He or she is responsible for the physical, emotional, and often financial support of another person who is unable to care for him- or herself due to illness, injury, or .

The care provided by family caregivers often continues over several years. Two- thirds of family caregivers reported providing care for a year or more while 37% nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 71 said they provided care for one to four years. Another 26% had been caregivers for more than four years. Caregivers of children are also less likely than caregivers of adults to be caring for just one person.46

Family caregivers operate as extensions of health care systems performing complex medical and therapeutic tasks and ensuring care recipient adherence to therapeutic regimens. They operate as home-based “care coordinators” and personal advocates for care recipients. As healthcare costs and utilization continue to rise, individuals facing physical, mental or behavioral challenges are increasingly dependent on the ability of family or other informal caregivers to operate competently as formal health care providers.17,112

Family caregivers account for 80% of all at-home care services in the U.S. The caregiver’s most immediate task may be about the most intimate, physical aspects of care; such as, giving baths, helping a loved one eat, get dressed, use the bathroom, or even breathe. Family caregivers frequently work alone. The majority of family caregivers who are already providing intensive levels of care do not get consistent help from family and friends.11

When the care recipient is an adult, caregiving often requires re-negotiation of roles in adult relationships, such as between two spouses or adult children and their parents, and impacts multiple relationships within a family system — for example, how siblings negotiate meeting parental needs. Caregivers routinely assist their adult care recipients with activities of daily living (ADL), including transfers and mobility within the home, getting dressed, bathing, and feeding. Caregivers also assist with many independent activities of daily living (IADL), including transportation, housework, grocery shopping, preparing meals, managing finances, administering and supervising medications, and arranging and/or supervising paid services. The transition to institutional care is particularly difficult for spouses, almost half of whom visit the patient daily and continue to provide help with physical care during their visits. Although the overwhelming nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 72 majority of family caregivers provide appropriate care and a supportive environment for their older relatives, caregiving creates stresses that affect both caregivers and care recipients, and these stresses may trigger potentially harmful caregiver behaviors that place dependent elders at risk for abuse.113-115

Physician Role

In a palliative care program, a palliative care physician and the patient's primary physician jointly share responsibility for the patient's care. In practice, the palliative physician typically undertakes most ongoing medical services while coordinating care from other health professionals, including the patient's primary physician and specialists. This approach helps prevent the service fragmentation that otherwise often occurs in healthcare systems.116

Palliative care physicians are proficient in treating advanced illness and managing pain and other symptoms. As the physician representative on the interdisciplinary team (primary physicians rarely attend the team conferences), the palliative care physician ensures that consensus about care is reached between specialists and other physicians involved in the patient's care in consultation with the patient and family. Patient choice and informed decision-making are emphasized in the development of the care plan.117

Medicare and most other medical insurance plans pay for "medically necessary" care. The palliative care physician certifies that the patient needs the services provided and signs the plan of care. All changes in the plan of care and the patient's condition are reported to the palliative care physician and documented in the patient's clinical record. In turn, the palliative care physician communicates or collaborates with the patient's primary physician on changes to the plan of care.81

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 73 Family physicians play a key role in providing palliative care as they are often the easiest to access. In addition, home visits are also possible for family physicians when compared to other physicians who are engaged with inpatient care. Family physicians can build a close rapport with the patient and family since most patients have known their family physicians for years. The family physician is generally the one most aware of the background of these patients and knows the resources available for them. Therefore, family physicians are in a position to provide maximum support and care with available resources. These patients can be continuously followed up by their family physicians, and they can communicate and coordinate with other medical professionals as well as caregivers regarding the patient's current situation and attend to their problems. Furthermore, relevant referrals to specialists and other resources can be arranged. In that case, family physicians can request extended care by coordinating with other resources such as nurses, physiotherapists, occupational therapists, and social workers.39

In terminal stages, 74% of the patients and family members are reluctant to admit patients to hospitals. They want to spend the rest of their life comfortably with their loved ones. Therefore, they tend to approach the family physician for relief of pain and other symptoms and difficulties. It has been revealed that 90% of care of patients in their last 12 months takes place at home with the support of the family physician and community nurse teams.30

There are four main components of palliative care, which may be carried out in the hospital or in the patient's home. They are physical care and medical treatment, psychological care, social care, and spiritual care. The most important part of physical care in a patient with terminal illness is to keep him or her as comfortable as possible until death. Therefore, relief of pain and symptomatic management of other problems are extremely important. A family physician may have to manage many symptoms such as weakness, fatigue, drowsiness, loss of appetite, nausea and vomiting, mouth problems, dysphagia, hiccups, ascites, nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 74 constipation and diarrhea, bedsores, coughing and breathlessness, bleeding, edema, and some psychological conditions such as anxiety and depression. Diet is another aspect of physical care. The primary care physician should advise the caregivers to give adequate food and liquid to the patient in a form that can be easily swallowed and digested.29,93,118

To provide psychological care to the dying patient, the physician should know the patient's personality and the way that patient views death. Primary care physicians are ideal for this because of their long-term relationship with patients and family members. In fact, some families consider their family physician as a family friend. Therefore, a family physician is in a unique position to provide comprehensive care to the patient while keeping a good physician-patient relationship. The family physician should make sure that the psychological status of the patient and caregivers are assessed at key points of the disease process and given appropriate psychological support. Being at the patient’s bedside, communicating effectively while showing concern, touching the patient when appropriate, active listening to the patient’s fears, frustrations, hopes, and needs provides the psychological support needed. Primary care physicians can reassure the patient and ensure that he or she feels comfortable. Patients should be given hope when it is possible so that they may live the remaining part of their life in good psychological health.97,119

The social impact of terminal illness is considerable and can reach beyond the patient and immediate family. Patients may need support with personal care, advice on employment issues and assistance in securing financial benefits. The family physician, being an active member of the community, will be able to help the patient with these needs or provide direction to relevant services. All such support may be provided informally or formally, in either a planned or reactive manner.120

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 75 Nursing Role

Nurse–patient relationships are central to the nursing role in palliative care and this relationship should benefit the patient. Recent research suggested that the three concepts of partnership, intimacy and reciprocity come together in a therapeutic encounter between the nurse and patient. It is believed that the nurse must be self-aware, or at least growing towards that goal, for any meaningful relationship to occur. Furthermore, a caring relationship is formed between nurse and patient when the nurse recognizes the patient as an individual and is able to empathize and establish rapport. Some experts liken the nurse– patient relationship to a journey. Two people travel for a while together, becoming close and committed to each other, but only within defined limits.121

Care of the dying patient and the family is primarily a nursing responsibility. As patients shift from the sick to the dying role it is principally the nurse who deals with the day-to-day task of supporting and helping them and their families to live with the psychological, social, physical and spiritual consequences of their illness.48

It has been suggested that the role of the nurse in palliative care is directly related to the setting in which nurses’ practice. When hospice nurses are compared with other groups of nurses, particularly nurses from the acute setting, it has been shown that they experience less death anxiety and more positive attitudes towards death. In addition, it has been argued that hospice nurses experience less than nurses in other care settings, although the need for support in this area of nursing is acknowledged. It therefore seems pertinent to explore the literature specifically pertaining to this group of nurses in palliative care.122

Palliative care nursing practice is conducted within an affiliative matrix. The palliative care nurse works with other members of the team to develop and

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 76 implement the patient's plan of care. He or she functions as a care manager coordinating the implementation of the care plan. The nurse also shares an advocacy role for patients and families with other members of the team. In developing and maintaining collaborative relationships with other members of the palliative care team, the nurse must be flexible in dealing with the inevitable role blending that takes place.25

Skilled services are provided by or under the supervision of registered nurses following a medically approved plan of care developed by the care team. Palliative care nurses are adept in the art and science of pain and symptom management and have well-developed physical assessment and evaluation skills. Other services include administration of medication and treatments, emotional support, and patient and family education and instruction. Each nurse care manager maintains contact with the patient and family and other healthcare professionals across the continuum of care should the patient require services outside the home setting.

The palliative care nurse collects patient and family data through assessment of the patient's physical, emotional, spiritual, social, psychological, and cultural status. The nurse assesses the patient's and family's coping strategies, support system, and learning needs in collaboration with other members of the team. The scope and intensity of reassessment is determined by ongoing and systematic evaluation of the patient's needs and family condition. Real or potential problems to be addressed are derived from analysis of the multidimensional assessment data collected by the team and validated by the patient and family.26,55,114

Social Worker Role

It is essential that every comprehensive palliative care service (which may include inpatient unit, community care, day care and even the hospital palliative care team) have an experienced social worker on staff. It is, however, recognized

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 77 that in many countries there are few, if any, social workers and even fewer with training/experience in palliative care. Their work will usually focus as much on staff as on patients and relatives, and will be concerned with coping strategies, loss and personality problems.58

The basic tasks of a social worker, such as facilitating discharge, arranging help in the home, obtaining financial assistance, making special holiday arrangements etc. can usually be dealt with by someone appropriately trained, though not necessarily accredited or paid as much as a social worker.

Palliative care social workers provide counseling and spiritual care to help patients and their families address their economic, psychosocial, and emotional needs. Skilled in active listening, the social workers take their lead from their clients, assessing the patient's and family's needs and preferences for care in an initial consultation and subsequent reassessments. They then develop a social work plan of care based on their assessment findings. Of the five domains that constitute quality end-of-life care according to patients — receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden on family members, and strengthening relationships with loved ones — palliative care social workers spend much of their time with patients addressing the last three. Their services can take many forms.14,123,124

Social workers help patients achieve a sense of control by discussing with them and their family members’ issues that both groups typically want to address but too often avoid — issues such as death and dying, substitute decision-making for life-sustaining treatment, and memorial planning. They help alleviate the burden on family members by assessing the patient's and family's economic, psychosocial, and spiritual needs, and then helping to obtain resources to meet those needs. They might, for example, assist patients with applying for In-Home Supportive Services or Meals on Wheels, and help caregivers arrange for respite nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 78 services. They also help strengthen relationships between patients and their loved ones through such services as individual and family counseling. Social workers help patients and families find closure by discussing the patient's achievements, assisting with life review, and, in some cases, by helping to create a memorial videotape of the patient for the surviving family members. A wide range of other social work services is available depending on the needs of patients and family members.

The social worker works closely with and supports the work of other palliative care team members. Often, the social worker shares care management duties with the palliative care nurse. Like the other members of the core IDT, the social worker is a constant in the patient's care, from admission on through the dying process.60,108,125

Massage Therapist Role

Pain control is often a primary concern for palliative care patients, and is an excellent nonpharmacological modality for reducing or alleviating pain, and thus reducing the need for narcotic painkillers. Massage has been proven useful as a primary or adjunct therapy for any condition that includes a stress component, and being diagnosed with a life-threatening disease is high on any list of stress-producing events.89,120 (Acupressure techniques have been used by this author to relieve tension in the trapezius muscle of a patient).

Massage has proven to be extremely useful for some palliative care patients in managing stress and alleviating pain, which can reduce the need for psychotropic and narcotic medications, all of which have their own negative side effects. A primary benefit of massage for those who are less mobile or bedridden is its use in helping to prevent pressure sores. Once referred to as "bed sores," these skin ulcerations are most likely to occur over bony areas of the body, such as the

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 79 tailbone, buttocks, elbows, shoulders and heels, that are in constant contact with a mattress.126

Massaging areas of the body that have been most recently under pressure — thus stimulating circulation at the susceptible points, along with encouraging the patient to change positions frequently — has long been recommended in healthcare manuals as an aid to prevent pressure sores. The massage therapist can also be on the lookout for reddened, thinning or "hot" areas, and give that area immediate attention. Palliative care patients may experience dry or itchy skin as a side effect of inactivity and drug therapy, or as a reaction to body systems beginning to shut down. Such a condition can cause further agitation for a person who is already feeling anxious, weak and vulnerable. A moisturizing massage lotion helps alleviate dry skin, and is soothing and nurturing.110,127

When a massage therapist works with medically frail clients or clients who are terminally ill, the work performed takes on a much different purpose when compared to a healthy client coming in for health maintenance purposes. Often the touch is much lighter and offered as much for psychological comfort as for easing physical pain. In many situations the only touch they have received has been either cold and clinical or painful. Simply being there and holding a person’s hand, or gently rubbing his or her back can soothe anxiety and increase comfort.128

One of the benefits a massage therapist might consider is to teach family members how to offer comforting touch to the hospice patient and to each other. The massage therapist will not be at the client’s home or hospital bedside for hours on end, but family members might. Often they feel frustrated and helpless just sitting there. Being able to feel at ease touching a loved one with healing intent can go a long way in reducing the feelings of powerlessness in a life- altering situation.125

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 80 Another important aspect in working with chronically ill or terminal patients is making sure the massage therapist has a thorough knowledge of treatment plans by other team members, which would include knowing the type of medications being given and the potential for massage either increasing or reducing their effects. This would be true in both a palliative care situation where light Swedish massage might be given to someone receiving chemotherapy, or in hospice care where even more passive massage might take place on someone with end stage kidney failure.129

Mental Role

Psychological care is the management of the psychological needs of the dying patient and close relatives. Psychological distress is common among people needing palliative care and is an understandable response to a traumatic and threatening experience. Patients draw on their own inner resources to help them cope, and many derive emotional support from family and friends. Some patients, however, are likely to benefit from additional professional intervention.

Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families.

There are a number of important issues for which a may have unique expertise in palliation; such as, issues of meaning and life closure, intimacy in relationships, and concerns about bereavement, among other issues. In addition, good management of psychosocial and psychiatric issues often enables improved management and outcomes of the primary illness. More specifically, psychiatric syndromes, such as depression, anxiety, and delirium, are common in palliative care settings and frequently under-recognized or under-appreciated, though they contribute to a substantial burden of suffering for patients and families. In

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 81 hospice patients, for example, roughly 50% will experience symptoms of depression, approximately 70% will experience clinically significant anxiety, and nearly all patients will experience delirium as death nears. Psychiatric conditions are often difficult to differentiate in the setting of serious illness, due to symptom overlap with medical conditions. In addition, palliative care physicians are often uncomfortable with off-label use of psychotropic medications, and they lack expertise in psychotherapeutic interventions.48,115,130

Dietician/ Role

Given the emerging importance of nutritional strategies in caring for palliative patients and families, there has been a call for the inclusion of in palliative care services. While this is particularly relevant in the context of intervening and initiating palliative care much earlier in illness trajectory, it also applies to optimizing the eating experience and its related quality of life in the context of very advanced disease. More specifically, their work involves the following: 1) processing referrals, 2) assessing patients’ clinical data and soliciting important clinical information about the patients from other team members; 3) informing the team about the results of the nutritional assessments; 4) discussing and establishing realistic nutritional goals; 6) developing nutritional care and treatment plans; 7) undertaking and reporting patients’ nutritional follow-ups and making adjustments to the initial nutritional care plan; and 8) collaborating with other team members in the preparation of discharge plans if needed.

Nutritional support involves dietary counselling, developing personalized meal plans and overseeing artificial nutrition (enteral and parenteral feeding) in those patients who were receiving these. Providing dietary counselling to enhance symptom control constitutes an important part of the ’ dietetic practice.64,83,121

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 82 Chaplain/Spiritual Advisor Role

Since palliative care can be provided at any stage of disease, at the same time as curative or life-prolonging treatments, and in inpatient or outpatient settings, the palliative care chaplain may provide chaplaincy care to patients over the course of several months to years. The chaplain’s in hospice and palliative care may include addressing religious, spiritual and existential pain and suffering related to a life-limiting diagnosis, assisting with advance care planning in light of one’s values and beliefs, or facilitating conversations about one’s hopes and fears. In both the hospice and palliative care setting, there is the critical need for staff support due to the frequency of death and the cumulative impact of grief. Routinely addressing staff concerns related to bereavement will prevent the debilitating issues that may occur. Another important aspect of the chaplain’s work may be to provide bereavement support for the patient’s caregivers.89,108,131

Hospice and palliative care chaplains provide a broad and diverse range of services, including those highlighted below.132

• Completing an assessment and determination of an individualized plan of care that contributes to the overall care of the patient that is measurable and documented. • Participating in interdisciplinary teamwork and collaboration. • Providing spiritual/religious resources, such as sacred texts, Shabbat candles, music, prayer rugs and rosaries. • Offering or facilitating rituals, prayer, sacraments and legacy work. • Contributing in ethical issues, such as through a primary chaplaincy relationship, participation on an ethics committee or consultation team and/or participation on an institutional review board. • Helping identify and interpret cultures and faith traditions that impact health care practice and decisions.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 83 • Educating and consulting with the health care staff and the broader community. • Building relationships with local faith communities and their leaders on behalf of the organization. • Offering care and counsel to patients, their caregivers and staff regarding dynamic issues, including loss/grief, spiritual/religious/existential struggle, strengths, opportunities for change and transformation, ethical decision making, and difficult communication or interpersonal situations. • Facilitating difficult conversations, including goals of care and advance care planning. • Addressing signs and symptoms of non-physical pain and suffering. • Providing leadership within the organization and within the broader field of chaplaincy.

The Palliative Patient Care Plan

Care planning is an essential part of all palliative care programs; it enables the patient and the team to identify their needs and work to specific goals. The ability to complete an effective and thorough care plan with a patient can be affected by a number of variables; experience and knowledge are primary examples. Patients should receive their health care from competent clinical professionals and the patient’s dignity should be maintained at all times. To write an effective care plan, it is important that one understands what it is and how it works in collaboration with the palliative care team.116

A care plan is a document that either can be on paper or in a computerized format and it should be developed in collaboration with the patient. Care plans may be individualized (produced in response to the specific patient by the clinician undertaking the assessment), core (standardized) or as a pathway to ensure that a patient proceeds along their chosen health journey. Although care

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 84 plans take on different formats, the general principle is to provide details of care needed, and a direction and goal for the care delivery.

When developing a care plan, it is recommended that one should document the identified problem and the perceived goals in collaboration with the patient. This process requires additional information (i.e., how the goal will be realistically achieved), therefore it needs regular re-evaluation of the patient’s progress, with their care plan being reviewed and updated as required. When putting together a care plan it is important to consider that, although health clinicians work concurrently within established professional standards, they are also responsible for ensuring that the care plans developed are responsive to a number of quality outcome standards that apply to direct patient care. Primarily, these quality outcomes include:142,133

• Respecting and involving people who use services

People should be treated with respect, involved in discussions about their care and treatment and able to influence how the service is run.

• Consent to care and treatment

Before people are given any examination, care, treatment or support, they should be asked if they agree to it.

• Care and welfare of people who use services

People should get safe and appropriate care that meets their needs and supports their rights.

• Meeting nutritional needs

Food and drink should meet people’s individual dietary needs.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 85 • Cooperating with other health providers

People should get safe and coordinated care when they move between different services.

• Safeguarding people who use services from abuse

People should be protected from abuse and staff should respect their human rights.

A systematic approach to care planning should include the assessment, arrival at a systematic diagnosis, planning, implementing, rechecking (which happens once the documentation of the information has occurred), then evaluating. It is suggested that this may be more appropriate and reflects the problem-solving requirements a health clinician needs to use, rather than prior models of patient assessment, planning, implementation and evaluation.80,102

The initial step in developing a care plan is to gather all relevant information from the patient, as well as from the patient’s family and personal medical records. This should incorporate a knowledgeable discussion and enable the patient to express their wishes, fears and concerns. The clinician is required to work with the patient and should perform a holistic assessment, ensuring that it remains person centered and systematic, and [developed with the patient producing] a comprehensive personalized plan of care.82,120

The use of an accredited model of assessment may facilitate the care planning process, but the most important aspect is that it demonstrates that a robust assessment has been performed, including diagnosis, and that care has been planned based on current evidence. The fundamental aspects of care planning are through a fusion of theory and practice-based learning. The theory element is based on the Roper–Logan–Tierney (RLT) activities of daily living model, which is accredited by its use worldwide as a successful framework, specifically in nursing

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 86 clinical practice, for all elements of clinical education and care. Although there are a variety of models available to facilitate the care planning process, such as the Self-care Deficit model by Orem, or the Health Care Systems model for nursing, the RLT model is the most accepted. It is not uncommon, however, to see in some establishments that to meet their patient’s needs or that of the specialty, aspects from a number of models may be used to develop their own method of care plan development.

The priority is not to focus on which model, but to ensure that patient safety is maintained by operationalizing the model(s) in response to patient need, and also that the care planning process is transparent and clear. This is essential as care is generally delivered by a team, not one individual, so to ensure that care is seamless and that everyone is working to the same goals or plans, the care plan must be accessible to all members of the team so that everyone involved can follow the plan.74,95,105,134,135

Benefits Of Palliative Care

Palliative care and hospice programs demonstrably improve physical and psychosocial symptoms, family caregiver well-being, bereavement outcomes, and patient, family, and physician satisfaction. These objectives are achieved through care provided by interdisciplinary teams of physicians, nurses, social workers, spiritual counselors, pharmacists, aides, and additional personnel as needed (such as, physical therapists, psychologists, and others). Palliative care and hospice teams identify and rapidly treat distressing symptoms that have been independently shown to increase medical complications and hospitalization. Palliative care and hospice teams meet often with patients and their families to establish appropriate and realistic goals, support families in crisis, and plan for safe transitions out of hospitals to more supportive settings (home care, home hospice, nursing home care with hospice, or inpatient hospice care).

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 87 Communication regarding the patient's prognosis and goals by a dedicated team with time and expertise leads to better-informed decision making, clarity of the care plan, and consistent follow-through. Such discussions at family meetings lead to lower costs and a lighter family burden and improve family satisfaction and bereavement outcomes.66,136,137

Contrary to widely held assumptions, several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations. Research is necessary to confirm these findings and assess their generalizability. Conjectures accounting for the possibility that palliative care and hospice may prolong life include reduction in depression, which is an independent predictor of mortality in multiple disease types, avoidance of the hazards of hospitalization and high-risk medical interventions, reduction in symptom burden, and improved support for family caregivers that permits patients to remain safely at home.57

Palliative care and hospice programs promote the delivery of coordinated, communicated, and patient-centered care by targeting the drivers of increased utilization of hospitals, specialists, and procedures. These drivers include financial incentives for quantity and fragmentation of care, lack of training in management of patients with complex or multiple chronic conditions, lack of a strong primary care infrastructure, and financial and structural disconnects between the acute and the postacute care settings for health care.

By addressing pain and symptoms that might otherwise increase hospital complications and lengths of stay, meeting with patients and families to establish clear care goals, tailoring treatments to those goals in consultation with the patients and their families, and developing comprehensive discharge plans, both hospital- and community-based palliative care and hospice programs can reduce costly and preventable hospitalizations, readmissions, and emergency department visits. Patients are able to remain in their homes as a consequence of nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 88 better family support, care coordination, and home care and hospice referrals; more hospital admissions go directly to the palliative care service or hospice program instead of a high-cost intensive care unit (ICU) bed. Patients not benefiting from an ICU setting are transferred to more supportive settings, and nonbeneficial or harmful imaging, laboratory, specialty consultation, and procedures are avoided. Controlled trials in Europe and the U.S. and multisite studies in the United States suggest that the ability of palliative care and hospice programs to help patients avoid hospitalization can be substantial.16,21,38,73,138

Based on recent data, the average patient-admission net cost saved by hospital palliative care consultation is $2,659. Approximately 2% of the 30 million annual hospitalizations in the United States end in death. Assuming that most of these patients, plus the approximately 4% of patients who are discharged with serious and complex chronic illness, could benefit from palliative care services, palliative care programs should be serving approximately 6% of all hospital discharges (including patients who die). At present, palliative care programs have been established at more than 60% of U.S. hospitals with more than fifty beds and affect approximately 1.5% of all discharges. Palliative care is estimated to save $1.2 billion per year under the current penetration of services (to approximately 1.5% of all hospital discharges at 1,500 U.S. hospitals). This figure would increase to approximately $4 billion per year if capacity were expanded to meet the needs of 6% of hospital discharges at 90% of all U.S. hospitals with more than fifty beds.26,29,57,82

Palliative care also reduces total health care costs for the majority of Medicare beneficiaries receiving it. Using propensity score analysis to control for selection bias, an estimated $2,300 is saved per palliative care beneficiary on average, compared with similar patients not receiving palliative care services. Extrapolating this average savings across the number of palliative care patients served each year yields an overall savings of more than $3.5 billion a year (1,560,000 patients×$2,300=$3.5 billion). The maximum savings was reached nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 89 with a length of palliative care use of approximately seven weeks, leading to reduced Medicare costs of $7,000 for cancer patients and $3,500 for others. The savings attributed to patients persisted for 233 days of palliative care for cancer patients and 154 days of care for noncancer patients. In addition, recent analyses have found that the costs of care for patients with cancer who disenrolled from palliative care (disenrollment because of family exhaustion, symptom crises, or a need/desire for disease-directed treatments not covered under hospice) were nearly five times higher than for patients who remained with the program. Patients who disenroll from palliative care are far more likely than those who do not to use emergency department care and be hospitalized.7,23,86,139

Although studies generally have found that Medicare spending for palliative care enrollees across settings is less than that for nonenrollees in the last several months before death, these savings diminish as hospice stays increase in length beyond 180 days. The rise in access to palliative care in long-term care settings has resulted in a rise in average (but not median) length of stay, primarily because of the growth in the number of very long-stay beneficiaries. Since palliative care is paid per diem, these long stays, along with the rising number of chronically ill Americans receiving care, have resulted in a quadrupling of government expenditures on hospice in the last eight years. Despite data pointing to overall Medicare savings associated with the use of hospice, the recent growth in spending on palliative care has led to ongoing government review by both the Medicare Payment Advisory Commission and the Department of Health and Human Services, as required in the Affordable Care Act of 2010 of the appropriate use of the Medicare Hospice Benefit. Concerns about the overuse of hospice focus on Medicare beneficiaries with multiple chronic conditions and functional impairment who are not (imminently) dying and may survive beyond the initial six-month prognostic eligibility criterion set in statute.96,127,140

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 90 By way of review, the benefits of receiving palliative care services are many, which include:141,142 • Services provided in an outpatient setting, such as the patient’s home, long-term care facility or facility • Expert monitoring and treatment of pain and symptoms • Helping the patient have more control over his or her care by improving the understanding of the various choices for treatment. • Close communication and coordination with all of the patient’s care providers • Caregiver support with education and community resources • Helping to reduce or eliminate unwanted hospital visits

Palliative care provides better symptom management and quality of life compared with usual (cure-directed) care. Studies show that patients who receive hospice care have improved quality of life, with less depression and symptom burden, feel more in control, are able to avoid risks associated with treatment and hospitalization, and have decreased costs with improved utilization of health care resources.12 Perhaps most importantly, when initiated early in the disease course, palliative care also improves clinical and quality of care outcomes, and possibly prolongs survival.

In a recent systematic review of the evidence regarding the impact of palliative care interventions on outcomes for patients with advanced and serious illness, evidence of benefit was strongest for interventions that targeted pain, and for decision-making related to appropriate health care utilization. In a recent trial, 350 patients with advanced lung or gastrointestinal — including pancreatic, gastric, and esophageal — were randomly assigned to receive palliative care along with standard treatment or standard treatment alone. Patients in the palliative care group received a visit from a palliative care specialist at least once a month; both groups were evaluated 12 weeks and 24 weeks after their cancer treatment had begun. Patients with lung cancer who nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 91 received early palliative care reported improvements in quality of life and mood at 12 and 24 weeks. Among patients with gastrointestinal cancers, however, there was no difference between the two study groups in quality of life or mood at the 12- or 24-week evaluations.40,143

The above-mentioned study also showed that 30% of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only 14% of patients receiving standard care alone reported having these discussions. At 24 weeks, patients in the palliative care group were more likely to report using what researchers call adaptive-coping strategies than patients in the other group. This style of coping involves taking actions to make one’s life better, such as accepting one’s diagnosis and the use of emotional help.144,145

Benefits to the Family

While a family caregiver has been defined as a member of the patient’s family who has chosen or who has been designated as the caregiver for one or more family members who cannot manage normal activities of daily living without help, there are several definitions of family caregivers worthy to highlight.19

• Family (informal) caregiver is any relative, partner, friend, or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an individual with an acute, chronic, or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care.

• Family caregiver is someone who is responsible for attending to the daily needs of another person. He or she is responsible for the physical, emotional, and often financial support of another person who is unable to care for himself or herself due to ill- ness, injury, or disability.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 92 The National Alliance for Caregiving, in collaboration with AARP, reported that there are 65.7 million people in the United States who have served as informal caregivers, with approximately 30% of people reporting that they have cared for at least one family member. Two thirds of family caregivers are female (66%), with their average age being 48 years. Family caregivers’ age increases with the age of the care recipient. With a decline among younger caregivers (under the age of 50 years), there is an increasing number of family caregivers aged 50 to 64 years, and an even larger increase in the number of caregivers aged 75 years or older. One-third of family caregivers are responsible for the care of two or more family members (34%). Due to issues of caregiver burden, a family member may also hire paid help from aides, housekeepers, or other people. The use of paid care increases with the caregiver’s household income. More specifically, 48% of caregivers whose income is over $100,000 use paid help. Approximately, 74% of caregivers live with their loved one or within 20 minutes from their home. Among caregivers who do not live with their loved one, 76% report that they visit at least once a week.60,66,110

Of the 65.7 million U.S. caregivers, 3.9 million care for only child recipients, 48.9 million care for only adult recipients, and 12.9 million care for both child and adult recipients, according to the National Alliance for Caregiving. A 2013 report from the Alliance also shows that 16.8 million unpaid caregivers provide care to a child under the age of 18 with a special need. In 2013, 9.9 million family members, friends and neighbors provided unpaid care for a person with Alzheimer’s disease or other dementia.13,64

Family caregivers often provide care over several years. Two-thirds of family caregivers reported providing care for a year or more while 37 percent said they provided care for one to four years. Another 26 percent have been caregivers for more than four years. Caregivers of children are also less likely than caregivers of adults to be caring for just one person.78

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 93 Family caregivers operate as extensions of health care systems performing complex medical and therapeutic tasks and ensuring care recipient adherence to therapeutic regimens. They operate as home-based care coordinators and personal advocates for care recipients. As health care costs and utilization continue to rise, individuals facing physical, mental or behavioral challenges are increasingly dependent on the ability of family or other informal caregivers to operate competently as formal health care providers. Yet, despite their important function in our society, caregivers do not receive adequate training, preparation or ongoing support from health care systems.21,64,92

The typical recipient of care is a relative (86%), including a parent (36%) or a child (14%). The recipients of care are primarily female (62%), with an average age of 61 years. Seventy percent of the care recipients are adults, 50 years or older. Alzheimer’s disease or dementia is the main problem for caregivers (12% in 2013). The average period of caregiving is 4.6 years, with 31% of caregivers caring for their loved one for more than 5 years. The average care- giving time is 20.4 hr/week; female caregivers spend more caregiving time than do male caregivers (21.9 vs. 17.4 hr/week; National Alliance for Caregiving in collaboration with AARP). According to the Family Caregiver Alliance, it has been estimated that 70 million people will be older than 65 years in 2030. Therefore, family caregivers increasingly provide care for aging adults, most of who have one or more chronic conditions and who wish to remain in their own homes and communities. Other family caregivers belong to the sandwich generation, which describes the caregivers sandwiched between caring for elder parents or grandparents and spouse and/or children. These care- givers are pulled in both directions and often have jobs as well as these dual responsibilities. They are typically middle-aged women who are overwhelmed with responsibility and acting out of duty who, in the process of caring for others, neglect themselves because there are competing demands for their time.8,96,146

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 94 Caring is fundamental to human survival and throughout the life span, people care about and for others; both within and outside family and kinship groups. Some people take on this role suddenly, and it may only last just a few weeks or months as a relative enters the dying phase of a final illness, while for others it lasts a long time with more uncertainty about dying, such as for an older person with dementia. Most carers manage very well and draw upon the support of family members and wider social networks. They may not identify with the term ‘carers’, as the caregiving role is regarded as part of the normal complex pattern of reciprocal relationships that are characteristic of most family, kinship and friendship systems. Most caregiving is enmeshed in a web of mutual dependencies, responsibilities, demands and rewards that make up everyday family life. Caregiving within palliative care contexts, arguably, is especially demanding because of the sense of imminent loss and the demands of caring for a patient with high dependency needs.93,102,147

Caregiving is a gendered role, with care predominantly provided by women and that the majority of carers are in the age range 50–59 but increasingly older people over 65 years are involved in caring both for their spouse and parents who may now live into late old age (over 85 years). In palliative care, there is more likely to be within-generational than cross-generational care giving, which is different from other types of caring. It is often not acknowledged that children may be both the receivers and providers of care within palliative care. Informal, unpaid care giving is largely hidden and taken for granted but it is crucially important to enabling dying people to achieve a ‘good death’ and in saving society from the huge costs of institutional care. Hospice and palliative care services generally recognize the important role that family carers play in providing care and support to patients.30,87

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 95 The Burden Of Caregiving On The Family

Family caregivers provide extraordinary uncompensated care, which is physically, emotionally, socially, and financially demanding. The caregiving role begins immediately at the point of diagnosis and continues over the illness trajectory with needs for information about care and the patient’s disease that vary at the different stages of the patient’s illness. Caregivers are a conduit for information between patient and provider and between provider and extended family. Family caregivers experience the physical strain associated with caregiving and also fear, confusion, powerlessness, and a sense of vulnerability despite their attempts to maintain normalcy. They often suffer from symptoms of anger, depression, and anxiety and may become demoralized and exhausted.

Caregivers themselves may experience increased physical illness, exacerbation of comorbid conditions, and a greater risk of mortality. Burdens associated with caregiving include time and logistics; lost wages or leaving the workforce entirely, which have severe economic implications; and personal, social, and institutional impact. Sources of anxiety for caregivers include residual effects of disease and treatment on the patient, altered household and family roles, and altered communication patterns. As caregivers abandon leisure, religious, and social activities, there is heightened marital and family stress, with long-term consequences for the health and the stability of the family. Changes experienced across the trajectory require caregivers to adapt to a new set of patient needs, creating increased distress, yet caregivers are reluctant to identify themselves as individuals who need support. This reflects the concept of “legitimacy of needs” or “caregiver ambivalence,” as they do not want to “bother” professionals or shift attention away from the patient. Some caregivers hide their feelings of loss and grief from the patient, which is termed “bridled grief”. This may lead to increased caregiver isolation, depression, and overwhelming misery when caregivers finally allow themselves to grieve. The level of stress/strain varies by disease. Previous studies reported that caregivers of dementia patients have higher levels of

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 96 burden than other caregivers due to long care hours and physically demanding caregiving.35,117,126,148,149

A study by Kim and Schulz compared the strains of family caregivers of cancer patients to the strain of caregivers of frail elders and dementia and diabetes patients. The results showed that the level of strain of caregivers of cancer patients is greater than the strain on caregivers of elderly or diabetes patients, but cancer caregiver strain is comparable to that of caregivers of dementia patients. Caregivers of patients with cancer and dementia reported higher levels of physical strain, emotional stress, and financial hardship as a result of providing care. The crucial difference between cancer and dementia caregivers was that cancer caregivers are distressed by various acute medical conditions experienced by the patient, such as surgery, chemotherapy, or radiation therapy (i.e., catheter care or managing patients’ emesis or fatigue symptoms), whereas caregivers of dementia patients are distressed by the significant cognitive and functional decline and behavioral changes, which progress over time.

Beyond the burden of family caregiving, the strengths of the family should also be considered. The strengths of individuals and families provide a means of dealing with any problems that exist. The goal should be to identify strong families and provide means of developing the strengths of families. The focus on family strengths does not deny the presence of stressors or perceived burden; rather, it offers a focus on the resources any family can develop and use in reducing the stressors or negative effects associated with caregiving. Given the strengths of the family, the caregiving experience may also have benefits and possible gains, but yet these outcomes have received little attention. Health professionals should not miss the opportunity to identify the rewards and satisfaction that come from the role of caregiving.74,77,150

Studies indicate that family caregivers describe feelings of satisfaction for a job well done, particularly when the patient appreciates and acknowledges their care nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 97 and support, and when caregivers feel a sense of giving back for the care and nurturing they themselves received. The positive aspects associated with the caregiving experience may act as a buffer against overwhelming burden and traumatic grief. Caregivers who have a positive approach to life are better able to cope with caregiving demands and are motivated to maintain their caregiving role.

Based on a comprehensive review of quantitative studies, Stajduhar and colleagues reported posttraumatic growth of bereaved caregivers. These studies reported a sense of existential meaning associated with the caregiver role, including a sense of pride, esteem, mastery, and accomplishment. Using the Stress Process Model, researchers examined spousal caregiver depression and life satisfaction in the hospice setting, learning that caregivers found meaning and benefits in caregiving, and suggesting the need to identify caregivers at high risk and protective factors that could be incorporated into interventions.151,152

When a family member becomes seriously ill, caregiving involves emotional and psychosocial support as well as the provision of physical care. There is already considerable research identifying the needs of caregivers in palliative care situations. The evidence includes needs for psychological support, information, help with domestic tasks, personal care, nursing and medical care of the cared- for person, respite, social and financial help. There is also a lot of research into the negative effects of caregiving, such as anxiety, depression, stress, strain, fatigue and even increased mortality. Caring for a terminally ill person places heavy financial demands upon the family. The costs of providing medical care, transport to hospital appointments, additional equipment or home adaptations, laundry, heating, clothing and special food are rarely acknowledged. Much of the early literature concentrated on the negative impact, more recently there has been greater recognition of the rewarding aspects of caregiving such as closer relationships, feelings of self-esteem and discharging family obligations.31,105,139

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 98 Caring carries an emotional burden that may leave the caregiver feeling stressed, fearful and guilty. There is a growing realization that caring for the caregiver is a priority as they may be the person that facilitates end of life care choices (i.e., preferred place of care (PPC) being delivered in the patients’ home). The need for informal caregivers to take on the caring role will undoubtedly increase as the older population (65 years and above) rises. Frailty increases with age from 10– 11% in people over 65 rising to 25–50% in those over 85 years of age. This does not mean that everyone over 65 years will need care, but what is evident is that there appears to be a significant number of people living with debilitating conditions and/or life-limiting illness who require a potentially increasing amount of care. This challenge has been recognized globally with the realization that there will also be a need for expert, end of life care services.92,153

Friends, family or the patient’s spouse provide a great deal of care, and this provision will also need to rise proportionately. Despite this growing recognition for expert professional staff, the need for well-supported, knowledgeable, informal caregivers must also be considered. Currently, however, evidence suggests that caring may be having a significant impact on the caregiver’s quality of life.60

Caregiver’s Health Needs

The Department of Health recognized the significant impact carers make to healthcare provision and have stated that caregivers need caring for, which should incorporate assessing their need for support. Support may take on many guises: social, informational and/or emotional and so on. Caregivers’ health needs should be assessed on a regular basis as maintaining their health may mean maintaining the chosen place of care for the one being cared for. If there is a need for an increasing number of caregivers to take on the physical, psychological, social and emotional task of caring, then investing in the support

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 99 mechanisms is essential. Researchers identified that prolonged exposure to grief and suffering may have negative effects on the wellbeing of the caregiver.

Maintaining caregivers’ health should be a key priority. Caregivers may feel isolated, vulnerable and unsupported by the professionals around them. There are numerous reasons, which can include: lack of information regarding available resources (including financial, equipment), information being delivered but not understood as a result of the stressful situation they may find themselves in, or the use of jargon by the professional.33,88,114,154

Caregivers often lose contact with friends and family as they have to allocate more of their time to caring. They may need to relinquish other responsibilities and hobbies or even employment to fulfil the role. A government poll suggested that 2.3 million adults have terminated their employment to care for a loved one. Many have reduced their normal working hours or needed to undertake paid overtime work to supplement missed working hours and loss of pay due to caring responsibilities. If a caregiver has to stop working to give care, this could have significant financial burden on them and potentially other family members if they support them. Additionally, if they have to stop working because they can no longer leave their loved one alone, it may be that their social support diminishes too. This may present a significant burden, not only their physical health but also their emotional, psychological and social wellbeing. These negative experiences are well recognized in the literature and include:68,86,123

• Social isolation may be significant as reluctance to leave their relative or loved one once away from work may lead to them limiting social contact outside work with anyone other than the person they are caring for.

• Financial worries and stress associated with being at work adding to the burden.

• Guilt associated with having to be at work and leave their loved one alone or with strangers.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 100 Unfortunately, taking on the caring role may not be a choice that is made for all the right reasons, but may be one made out of having limited choices. Feelings of responsibility or guilt may be the motivation or reasoning behind the choices made. The result may be internal conflict with feelings of regret alongside feelings or recognition of responsibility and wanting to do ‘the right thing’, but the consequences of this withdrawal from their former life is isolation. As already identified, this isolation may be a significant issue for the caregiver and affect their psychological and physical health.155

There is evidence to suggest that over 58% of deaths occur in hospital with a subsequent and increasing drive to ensure individuals spend their last days of life in their home environment whether that environment is a nursing home or their own home. The data suggests that this would be the PPC at the end of life. This is not just a U.S. phenomenon; internationally, the majority of care in the last year of life appears to be delivered in the patient’s own home. Therefore, it may be that only when things become fragmented or at a point where there is difficulty coping, then admission to hospital may be the option of choice for the caregiver and/or patient.

The caring tasks themselves can create feelings of uncertainty, inadequacy and lack of self-confidence in the caregiver. These unmet needs, including support, may compound the feelings of inadequacy and fear of doing the wrong thing. A systematic review of caregivers’ practical needs (i.e., how to provide physical care, medication regimes and nutritional care) demonstrated an overwhelming need by caregivers for information surrounding emotional and practical support with effective, open communication.

One study examined caregivers’ satisfaction with communication and healthcare professionals’ perceptions regarding communicating information to relatives. Although 74% of caregivers had been given informational support surrounding the disease, 35% of those were generally dissatisfied with the way it had been nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 101 delivered, the timing of the delivery and the content of the information. There was a range of issues identified suggesting that individual needs should be addressed. The rate, depth and the timing of that delivery need a comprehensive assessment and an understanding of the needs of the caregivers and the patients.

The vulnerability of a caregiver and patient in a home environment without information surrounding aids, medication regimes, financial support and physical care advice in general should not be underestimated. The use of respite care may help to support the caregiver in order that they can continue to care for their loved one indefinitely. Caring for a patient with a life-limiting illness is, by the nature of the disease, one where second chances to put things right may not be an option. The poor and distressing experiences will continue long after the patient has died, and the caregiver may bear the scars of guilt and emotional burnout for a prolonged period.156-160

Assessment of the caregiver and caregiving situation is particularly complex because it involves:

• Assessing individual psychological symptoms of caregivers (often below clinically-significant levels) and sometimes also assessing symptoms or psychopathology in care recipients

• Understanding the demands which illness or disability impose on the family

• Determining the circumstances which predispose the caregivers to having positive or negative experiences during the period of caregiving

Variables to be Assessed161

The Situation: • Caregivers’ immediate questions, challenges and priorities. • The family’s understanding of and approach to the illness/disability. • The family’s caregiving stage in response to the progression of the illness.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 102 The Context: • The family’s developmental stage (i.e., family with young children, late-life family). • Individual family members’ capacities, personalities, and willingness to take on new roles. • The family system, including structural and functional characteristics.

The Meaning:

• The family’s previous experiences providing care to an ill or disabled loved one.

• The history and quality of the relationships between the care-recipient and other family members.

• The cultural and spiritual contexts for care.

A systematic approach to assess the caregiver’s needs and strengths is crucial in order to develop a dyadic intervention that can improve the outcomes for both caregivers and care recipients. Caregiver assessment can be used for determining eligibility for services, identifying unrecognized or subtle problems that might not be obvious although they have great impact on successful caregiving. The assessment process also promotes the development of a strong, trusting, therapeutic relationship between the clinician and the caregivers. There are a number of tools that can be used to perform the assessment, although little consensus exists as to the best strategy. Research indicates that the best assessments include all family caregivers and the care recipient. Both the patient and the family should be assessed by the same clinician or health professional in the caregivers’ home or another place where they both feel safe to discuss all aspects of the situation.56,70,87

The advantages of assessment as a basis for accessing services and support are many, but it is important to outline some specific benefits. The first is the identification of problems in the caregiving context, including but not limited to nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 103 interpersonal, relational, situational, or financial problems. These problems may be potential or actual. The second advantage is the clarification of roles and responsibilities for family members, as well as a clear estimate of the resources available versus those that will be needed to provide the required care. The assessment can also reveal actual and potential stresses that can be dealt with before they reach overwhelming and incapacitating anxiety and depression leading to despair. The structured and systematic nature of a good caregiver assessment assures that important aspects will not be missed and that a comprehensive approach is implemented.157,162,163

Clinicians will need to tailor their use of assessment instruments depending on the characteristics of the caregiver (i.e., age, cultural background), and the care recipient (i.e., age and specific medical problem or disability). There a number of caregiver intake forms, measures of caregiver mental health, and measures of , burden, coping, and family context. Clinicians can also assess care receiver measures of behavior and functioning, cognitive problems, quality of care, health problems, and mental health. Many clinicians will also benefit from instruments that may be particularly useful with caregivers from diverse cultural backgrounds.142,164

The Caregiver Intake Interview may be different from assessments psychologists typically undertake to identify individual psychopathology or distress. In order to create strong interventions for a caregiving family, psychologists must gather key information about a range of topics to help determine:

• The nature of the care-recipient’s illness or disability

• The family’s stage of caregiving (early, middle or late)

• The constellation of individuals involved in care, including community support persons, and treating professionals

• Unique or challenging caregiving circumstances

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 104 Seven Domains to Assess

• Background on the caregiver and the caregiving situation

• Caregiver’s perception of the health and functional status of the care- recipient

• Caregiver’s values and preferences

• Health and wellbeing of caregiver

• Consequences of caregiving on the caregiver

• Care provision requirements

• Resources to support the caregiver

Assessment Intake Guide Examples

• Caregiver Intake Interview Guide

• Caregiver Intake Report

• Caregiver Intake Form (to be completed by the family caregiver)

• Child and Caregiver Assessment Tool (to be completed by the clinician)

• Pediatric Intake Report (to be completed by the clinician)

• Family Caregiver Alliances toolkit, “Caregivers Count Too!” contains suggested questions for eliciting the information above.

The following questionnaires and interviews are commonly used with adult caregivers of any background and have been utilized in caregiving research studies and clinical work as well.

• Assessing Caregiver Stress, Burden, Competence and Coping

• Assessing the Mental Health of Caregivers

Sometimes as part of the assessment of the caregiver it is necessary to assess the extent of the problems being experienced by the care receiver. The following tools help make that possible.160,165,166

• Assessing Behavior, Observation and Functioning in Care Recipients nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 105 • Cognitive Problem Assessment Tools

• Quality of Care Measures

• Assessing Health Problems

• Evaluating Care Recipient Mental Health

Culture is known to influence caregiving. Specifically, issues of acculturation, assimilation, cultural values, beliefs and norms can be important for caregivers. There are a number of assessment tools that were designed to assess the unique aspects of caregiving among diverse groups. Although there are few well-known caregiving assessment tools designed specifically for use with diverse populations, several of the better-known tools have been tested across various groups, and have proved to be culturally sensitive instruments. In particular, the Zarit Burden Index (ZBI) has been shown to have a factorial structure that is invariant across caregiver samples. The ZBI has also been adapted and validated for use with several different languages. A modified version of the Caregiver Strain Index has also been shown to have adequate reliability and validity among racial/ethnic minorities. Several good reviews of issues of cultural diversity in caregiving research have addressed these specifically in the context of assessment tools:12,167,168

• Acculturation Rating Scale for Mexican Americans

• Caregiver Abuse Screen Spanish

• Cultural Justification for Caregiving Scale

• Suinn-Lew Asian Self Identity Acculturation Scale

• The Center for Epidemiological Studies Depression Scale

• The Revised Memory and Behavior Problems Checklist

• Zarit Burden Interview

Often caregivers are unaware of resources available to them or simply lack the energy to seek them out and then wade through all the red tape involved in documenting eligibility for the help. The financial hardships that develop over

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 106 time are an added burden. There is also agreement that palliative care nurses, case managers, and therapists can break this cycle by advocating for the caregivers as well as the care recipients. What is less clear is why so many family caregivers fail to have access to these supports and services. It is too easy to fault the assessments of family resources. Assessment is critical, as has been presented earlier; however, assessment without intervention is of questionable value.169

Family caregivers often react with a mixture of relief and grief when a loved one dies. Death provides relief from the relentless strain of caregiving and alleviates the suffering of the care recipient, but also represents a significant loss to the family and to the primary caregiver. Extensive caregiving may lead to a depletion of psychosocial resources, such as loss of roles or social supports, which might make caregivers even more vulnerable to the effects of bereavement. Some caregivers may need special help in dealing with grief, and in addressing social isolation that often occurs with highly stressful caregiving. Grief therapy appears to be as effective as for other conditions and is especially indicated when bereaved individuals show signs of complicated grief.131

In the context of chronic illness and caregiving, for example, the family member may grieve losses before the actual time of death, which can be adaptive. In fact, while caregiving can be a highly stressful prelude to bereavement, individuals who experienced the unexpected death of a spouse showed much greater increases in depression after the death than was found among spouses who had been caregivers, even under highly stressful circumstances.170,171

In many cases, early psychosocial intervention for caregivers can improve caregiver depressive symptoms for years after counseling is completed, and even during the process of bereavement. Caregivers who gain knowledge, skills, and supports through psychological intervention may find these resources of value not only while providing active caregiving assistance but also as they face the nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 107 challenges of coping with the death of a loved one. All of these experiences have the potential to affect the course of bereavement, and subsequent reengagement of the caregiver into a new life without caregiving responsibilities.172

Benefits to the Facility/Professionals

A key benefit to a referring hospital is the ability of the palliative care program to reduce length of stay for difficult patients who may not be willing to be discharged without a proper care alternative and to decrease unplanned hospital readmissions as symptoms are better managed at home. Facing terminal illness is a difficult process, and family members may be anxious about their ability to provide adequate care to their loved one. Patients living alone face the same, if not more anxiety, as they face the prospect of life outside of the hospital under their own care. A good palliative care program will provide a welcome alternative to these concerns, as well as an appropriate level of care outside the hospital. Palliative care programs providing consultations within a hospital will also decrease the length of stay within the hospital, and particularly within the Intensive Care Unit, by clarification of treatment goals and symptom management.139,156,173

By reducing patient and family as described above, the referring hospital will find an increase in patient satisfaction. This is due to the ability of the palliative care program to provide quality care in the patient’s home. The program will help the patient and their family transition to home, as well as provide much needed information on the patient’s prognosis and what to expect as their illness progresses. The comfort of knowing that symptoms are being controlled in the best way possible provides tremendous relief to patients and their families, which will help increase overall levels of patient satisfaction.174

As noted above, the ability of the palliative care program to assist in the transition of the patient and provision of quality care in the patient’s home can

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 108 assist in lowering in-hospital mortality rates. Increasingly, however, hospital mortality rates are being calculated based upon a 30-day window from hospital admission. The latter types of measures would not be expected as significantly impacted by palliative care.175

By having certified staff attending to the patient’s palliative needs, like pain control and symptom management, the potential host facility is addressing patient needs in the best possible way. In addition, many host facilities recognize that their medical staff are not inclined or equipped to handle difficult conversations over the patient’s prognosis or the decision to discontinue aggressive treatments. As a result, patients and families feel comfortable with the facility addressing their needs in a personal and caring way, which will result in increased patient satisfaction for the hosting facility. In addition, with the guidance of the palliative care staff, patients are offered the information they need to properly set their future course of treatment.164,176

Palliative care programs have been able to document a reduction in the length of stay at the host facility as patients and their families feel more comfortable leaving the host facility on a timely basis. There is not the uncertainty of what to do after discharge as a good palliative care service will assist the patient and their family in what types of services are available to them. This is particularly important in cases where the decision to elect hospice is not the patient’s first choice. Under a palliative program, those patients could be assisted at home through home health services until they feel comfortable in electing hospice. Meanwhile, their pain and symptoms are under control and being actively managed, which is a true benefit for those not ready to elect hospice, but in need of those services.38,105,163

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 109 Affordable Care Act Reforms

The Affordable Care Act (ACA) of 2010, which was signed into law in March 2010, is a combined piece of legislation that includes the ACA (HR 3590) and the Health Care and Education Reconciliation Act of 2010 (HR 4872). Several provisions in the ACA include demonstration projects aimed at changes to delivery and payment reform that will test and permit a gradual shift from volume-based FFS payment models to a pay-for-performance or "value-based" purchasing. A challenge for implementation will be to ensure that reforms do not impose so radical a system change that providers cannot comply or implement changes without imposing unsustainable risk. The demonstration projects are therefore geared toward exploring ways for providers, systems, and payers to gradually transition to new care delivery and payment models in order to build the capacity to adapt to the changes.177

Although provisions related to access to quality palliative care were removed from the original health reform bills due in part to concerns over perceptions of the care provided, several provisions related to payment and quality reform that impact palliative and hospices services remain. What does remain is a new provision (Section 2302 "concurrent care for children"), under which children are able to access hospice and curative care simultaneously.178

Demonstration projects for concurrent care in adult populations are also being evaluated. While not mandated in the ACA, the law offers other opportunities for palliative care and hospice programs to participate in the planning, development, and implementation of new delivery and payment models such as accountable care organizations (ACOs), patient-centered medical homes, and the bundling of payments for a single episode of healthcare. These models aim to improve the quality of care and control the costs for high-need, high-risk patient populations by focusing efforts on the very approaches to care and quality outcomes that palliative and hospice care has long demonstrated. In doing so, these models aim

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 110 to shift provider incentives from volume-based FFS models to payment based on quality of care.179

The ACA lays out a plan for over $424 billion in net Medicare spending reductions that will be implemented over a 10-year period. This will reduce the annual payment updates to hospitals and other providers as well as payments to Medicare Advantage plans. In addition, the law establishes several new policies and programs that are intended to further reduce costs and improve quality of patient care.180

Accountable Care Organizations

Accountable Care Organizations consist of a group of providers (clinicians, hospitals, specialists, and other providers) that work together to provide and coordinate care for a specified patient population across settings. Together, the providers accept joint responsibility for quality and costs for the identified population. The Medicare Shared Savings Program was created to help Medicare fee for service (FFS) providers become an ACO.181

The Pioneer ACO Model, which is operated by the Centers for Medicare & Services (CMS) Innovation Center, is designed for healthcare organizations and providers that have demonstrated excellence in integrated coordination of care. Thirty-two Pioneer ACOs will participate on a faster track to move toward transitioning from FFS payments to a population-based model, meaning there would be a single price assigned for the healthcare services needed by a specific group of patients, and a reduction in FFS payments.182

Primary Care Medical Home

The primary care medical home (PCMH) is defined by the Agency for Healthcare Research and Quality (AHRQ) as a medical home - the model or organization of primary care - that delivers core functions of primary health and includes five

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 111 functions and attributes: 1) comprehensive care, 2) patient-centered, 3) coordinated care, 4) accessible services, and 5) quality and safety.107

The PCMH is accountable for meeting the majority of a patient's physical and mental health needs and recognizes that the delivery of comprehensive care requires a team approach. Attention to the patient's and family's unique needs, culture, values, and preferences is paramount, and measures are taken to ensure they are fully informed, and the plan of care is meaningful to them.178

The PCMH strives to coordinate care across a healthcare system, especially during transitions between sites of care. Clear communication between patient, family, and providers is stressed, and efforts are made to improve access and achieve shorter waiting times for healthcare needs. The PCMH measures quality and improvements, including responses to patient experiences and satisfaction, and data are shared with the public.183

Bundled Payment

Bundled payments involve reimbursement in a single, comprehensive payment for all services involved in the patient's care for a specific medical condition. Distinct goods and services for a given condition and across settings are "bundled" into a payment package that shifts incentives from FFS models toward payment based on the quality of services and increased efficiency.184

The new bundled payment models ensure that both payer and provider share the financial risks and allow for significant flexibility regarding timeframes for an episode and services covered. If the costs of care are less than the bundled payment amount, the providers keep the difference. If costs exceed payment, providers absorb the loss. For some proposed models, such as ACOs, savings are shared by all entities involved. Proponents suggest that the bundled payment

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 112 model will lead to more judicious use of health services and improved care quality.179

The Affordable Care Act addresses some aspects of end of life care; however, it falls short in making services for the dying a priority. Palliative care for the chronically ill is not a universally reimbursable expense. It is often a service that hospitals provide to patients, and the service is deemed valuable and sustainable because of the overall cost savings in health care expense to the institution. While palliative care is the type of care that is offered in hospice, there is growing practice of using palliative care to help patients with chronic illness, of which cancer is one.

There are currently no universal standards and widely accepted protocols for palliative care in both hospitals and nursing homes. While health reform did not specifically address palliative care as a distinct service from hospice care, there is a need to have Federal agencies develop a research agenda on palliative care to address issues such as the development of practice guidelines and methods of quality improvement, as well as the exploration of reimbursement options. There is not only a cost savings associated with chronic illness and palliative care, but also, and more importantly, the improved quality of life for the patient that will be a direct result of this prioritization, a point which is often left out of many policy discussions.180,183

Although not mandated in the ACA, the new law does enable the integration and participation of palliative care and hospice programs as a component of the new delivery and payment models, such as ACOs, PCMHs, and the bundling of payments for a single episode of health care. Each of these models aims to improve quality and control cost for high-need patient populations by 1) focusing on patient-centered, goal-driven, and intensive care coordination, 2) the identification and treatment of problems before crises prompt preventable

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 113 emergency department visits or hospitalizations, and 3) shifting provider incentives from fee-for-service drivers of quantity to payment based on quality. Despite the potential for palliative care and hospice care to enhance the ability of new delivery and payment models to improve quality and reduce cost, there is as yet no mandate for their inclusion and no certainty about the likelihood of their integration in the future. While there certainly needs to be a shift in physician education and practice around making recommendations for EOL services, there are still relevant provisions of the Affordable Care Act that may have an impact on cancer patients and hospice care.107,177,181,182

Palliative Care Payment

One of the key challenges for palliative care programs is financial sustainability. Historically, most hospice and home health agencies have looked to established government payment mechanisms to fund palliative care services. These sources are Medicare Part B payment for physician, (NP), and limited situations of Licensed Clinical Social Worker (LCSW) services, home health reimbursement or concurrent hospice care reimbursement available through Medicaid for pediatric patients or via demonstration projects. These sources rarely cover the full cost of providing palliative care services. Therefore, providers are increasingly looking to other sources of funding to supplement traditional payment streams.

These additional sources of funding include: grants, commercial insurance contracts, arrangements with hospitals or health systems, arrangements with ACO’s or other bundled payment payers, or private pay (concierge) models. All of these sources usually entail some restrictions, such as limited duration, limited target populations, application for limited funds, and/or other aspects that require initiative and negotiation. These sources of funding are usually premised on the ability of palliative care to avoid cost that would otherwise be incurred under other payment models, especially long lengths of stay in hospitals and ICU

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 114 level of care days. This ability for palliative care to result in system-wide cost savings and/or improved outcomes is helping to fuel the growth of palliative care programs, but, nonetheless, makes it difficult to justify palliative care on its own as a stand-alone service line.185

Medicare Beneficiaries

There are 40 million family caregivers in the U.S., defined as anyone who provides physical or emotional care for an ill or disabled loved one at home. For those caregivers dealing with loved ones with end-stage terminal illness, hospice services provide physical and emotional support for patients, caregivers and loved ones.186 More than 90% of hospice patients are Medicare beneficiaries using the Medicare hospice benefit, originally passed by Congress in 1982 and signed into law by President Ronald Reagan. Medicare is a separate entity from the ACA. Reform or repeal efforts to the ACA will not affect Medicare.187

A patient is eligible for hospice care if two physicians determine that the patient has a prognosis of six months or less to live. Patients must be reassessed for eligibility at regular intervals, but there is no limit on the amount of time a patient can spend under hospice care. In 2014, an estimated 1.6–1.7 million patients received hospice services. According to the Medicare Payment Advisory Commission (MedPAC), 47.3 percent of Medicare decedents utilized hospice care in 2013.188

Historically, Medicare pays hospice programs a flat, per-diem rate that covers all aspects of the patient’s care related to the terminal prognosis, including all services delivered by the interdisciplinary team, drugs, medical equipment and supplies. The Medicare Hospice Benefit covered 85.5 percent of hospice patients in 2014. While the number of beneficiaries using hospice has more than doubled since 2000, hospice comprises only 2 to 3 percent of total Medicare expenditures. For the first quarter of federal fiscal year 2016 (FY2016), the routine home care

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 115 rate was $159.34 per day. Beginning January 1, 2016, hospices experienced a new two-tiered payment model for patients served under routine home care. Hospices are now reimbursed $183.17 per day for the first 60 days of a patient’s care. The routine home care rate has dropped to $143.94 per day for days sixty- one and forward. Also beginning January 1, 2016, a service intensity add-on (SIA) payment is applied for visits conducted by an RN and/or social worker for up to 4 hours a day (combined) during the last seven days of a hospice patient’s life. To qualify for SIA payments for a patient’s care, the patient must be receiving routine home care, and the RN and/or social worker must provide direct patient care. The SIA payment equals the continuous home care hourly rate, and is disbursed in addition to the routine home care rate for the days the RN and social worker visits are made.189-191

Medicare hospice requirements around certification and recertification, as well as medical review of patients, have laid the regulatory groundwork to better ensure that appropriate and eligible patients are served by hospice, and that hospice programs are able to provide the quality that patients and families desire at the end of life. Hospice must complete a standardized Hospice Item Set (HIS) for all patients admitted to hospice. Hospices submit HIS data online on a rolling basis within 30 days of each patient’s admission and discharge.

The HIS includes a set of data elements that CMS will use to calculate scores for the 7 NQF endorsed quality measures. Hospices that failed to report quality data via the HIS in 2014 will see their market basket reduced by 2 percent in 2016.

Filing of Notice of Election (NOE) and Notice of Termination/Revocation (NOTR)

Effective October 1, 2014, hospices have a maximum of 5 days to submit the NOE and/or NOTR and have the form(s) accepted by their Medicare contractor. Late filing of the NOE will result in the hospice remaining responsible for

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 116 providing all care and services as detailed in the plan of care but without reimbursement from the Medicare Hospice Benefit for those days.

Focused Medical Review

The ACA incorporated a 2009 MedPAC recommendation that hospice programs with a high percentage of patients qualifying as long lengths of stay (more than 180 days) should have additional oversight through focused medical review. NHPCO supports this recommendation. The IMPACT Act provided technical fixes to the ACA language and the provision is now ready for CMS to set the threshold, or percentage, which will trigger medical review.16,107,188

Medicare Part A & B

While Medicare Part A does not have a dedicated palliative care benefit like the hospice benefit, there are home health care agencies that will provide palliative care and bill Medicare under Part A for services that could include nursing, social work, and spiritual care visits as part of the home health episode. Home health services are covered 100% under Medicare Home Health Prospective Payment System. Rates are issued annually and paid using the Home Health Resource Grouper for patients who are homebound with a skilled need and meet criteria of care. These programs can experience financial and quality outcome challenges, as the program will have frail patients in a state of decline having negative outcomes, such as falls, increased weakness, failure to meet goals, and failure to improve. These patients often end up going in and out of the emergency room, or can be admitted numerous times for inpatient care, resulting in Low-Utilization Payment Adjustments (LUPAs) and further negative outcomes, such as wounds due to skin breakdown and falls. It can also be difficult to get physician orders for these patients who would need frequent order changes due to pain, nausea, etc.

When a Medicare beneficiary is receiving skilled services from a Medicare certified home health agency (HHA), and the beneficiary has been diagnosed with a life nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 117 limiting terminal illness, but chooses to continue curative treatments, thereby rendering the patient ineligible for the Medicare hospice benefit, the HHA may contract to purchase specialized pain control services from the hospice provider. The HHA could then enter into a contractual arrangement with a Medicare- certified hospice to purchase specialized nursing services. The hospice would bill the HHA, and the HHA would pay the hospice provider directly. Neither provider type would be allowed to bill Medicare separately for the contracted services (which, in this example, are home health services, and, therefore, included in the HHA’s episode payment). In this example, the HHA would maintain a on the patient, and the hospice submits any documentation related to pain management to the HHA.

Medicare does not use the term ‘palliative’ so coverage is provided by standard Medicare Part B benefits for these specific services. Under Medicare, beneficiaries may see a physician or NP as many times as they wish during a year. However, patients may be responsible for a 20 percent co-payment for every visit after paying the deductible of $147 (2015). Part B Medicare imposes no restrictions on the type or number of physicians a beneficiary may visit. Medicare does restrict the higher home visit reimbursement codes for patients who are homebound. For a hospice that provides physician services for palliative care, the hospice must enroll in Medicare Part B by filing an application with CMS. The enrollment process includes obtaining a National Provider Identifier (NPI) number and completion of an application through the Provider Enrollment, Chain and Ownership System (PECOS) (CMS 855I and CMS855R) and billing trading agreements. For newly enrolling, reenrolling/re-validating, or adding a new practice location, the application fee for 2015 was $553.187,192,193

Effective October 1, 2009, Medicare issued a HPC (Hospice Palliative Care) specialty code (17) for physician palliative services. In order to be able to bill Medicare for palliative care services, physicians must have Hospice and Palliative Care listed as a specialty in the National Plan & Provider Enumeration System nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 118 (NPPES). In order to add this specialty, physicians will need to file a new CMS855I enrollment form with Medicare. While specialty code 17 provides greater specificity for data collection, there is no additional reimbursement above what would otherwise be available under Medicare Part B billing. Some key features of Medicare Part B fee-for-service of physicians, NPs, and LCSW:188,191,194

• Palliative care is covered for Part B physician services at 80 percent of the usual and customary fees • Patient is responsible for 20% of the coinsurance unless covered by Medicare supplement plan • Subject to annual physician fee schedule • Evaluation & Management (E&M) billing codes must be supported by the clinical documentation • Medicare also covers services and supplies furnished as “incident to a physician's professional service, of kinds which are commonly furnished in physicians' offices and are commonly either rendered without charge or included in the physicians' bills.” To be billed as “incident to,” the services of non-physician practitioners, such as NPs, must meet four criteria: 1) The services must be performed under a physician's “direct supervision”, 2) The services must be performed by employees (including leased employees) of the supervising physician, the physician's group or the physician's employer, 3) The physician must initiate the course of treatment of which the NP's services are a part, and 4) The physician must perform subsequent services of sufficient frequency to reflect the physician's continuing active participation in managing the course of treatment. • An NP's services (other than “incident to” services) are reimbursed at 85 percent of the amount shown on the participating physician fee schedule • To bill Medicare for NP services (other than “incident to” services), each NP needs a provider number

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 119 • NPs are allowed either to bill Medicare directly under their own provider numbers or to reassign their billing rights to employers or other contracting entities. For a physician practice to receive payment for services provided by NPs whom it employs or contracts with, the NPs must reassign their payment rights to the practice • Healthcare Common Procedure Coding System (HCPCS) modifiers to the Common Procedural Terminology (CPT) codes are required for NP services, such as AK (NP, rural, team member), AV (NP, rural, not a team member), and AL (NP, non-rural, team member) • LCSW psychotherapeutic services are billable with DSMIV diagnoses. • Claims are submitted on a 1500 claim form • CPT coding is based upon setting and either complexity or time (the latter when coordination of care or counseling comprises 50 percent or more of the encounter).

When hospice coverage is elected, the beneficiary waives all rights to Medicare Part B payments for professional services that are related to the treatment and management of his/her terminal illness during any period his/her hospice benefit election is in force, except for professional services of an independent attending physician who is not an employee of the designated hospice nor receives compensation from the hospice for those services.

These independent attending physician services are billed through Medicare Part B to the Medicare contractor, provided they were not furnished under arrangement with the hospice. The independent attending physician codes services with the GV modifier “Attending physician not employed or paid under agreement by the patient’s hospice provider” when billing his/her professional services furnished for the treatment and management of a hospice patient’s terminal condition. The Medicare contractor makes payment to the independent attending physician or beneficiary, as appropriate, based on the payment and deductible rules applicable to each covered service. When the attending physician nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 120 is an employee of the hospice, he/she cannot bill Medicare Part B directly. In this case, the physician bills the hospice provider who, in turn, bills Medicare and reimburses the physician. When the independent attending physician furnishes a terminal illness related service that includes both a professional and technical component (i.e., X-rays), he/she bills the professional component of such services to the Medicare contractor on a professional claim and looks to the hospice for payment for the technical component. Likewise, the independent attending physician, who may be a NP, would look to the hospice for payment for terminal illness related services furnished that have no professional component (i.e., clinical lab tests).

In the case of palliative care services, multiple scenarios can exist. If the palliative care physician is both an independent physician and designated by the patient as the primary care provider, they bill Medicare Part B directly, as noted above. If the palliative care physician is the primary care provider and related to the hospice program, then they must bill the hospice program which bills Medicare under Part A. These fees are included in the Medicare Hospice Aggregate Cap Calculation. If the palliative care physician is not the primary care provider, but is brought into the case as a consulting physician, the physician should first have a Consulting Agreement with the hospice, and should bill the hospice directly. Then the hospice will bill Medicare for the service (which would also be included in the Aggregate Cap).16,188,195

Medicare covers a one-time only payment on behalf of a beneficiary who is terminally ill (defined as having a prognosis of 6 months or less if the disease follows its normal course), has no previous hospice elections, and has not previously received hospice pre-election evaluation and counseling services.196

HCPCS code G0337 “Hospice Pre-Election Evaluation and Counseling Services” is used to designate that these services have been provided by the medical director or a physician employed by the hospice. Hospice agencies bill their home health nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 121 and hospice Medicare contractor directly using HCPCS G0337 with Revenue Code 0657. No other revenue codes may appear on the claim. Claims for “Hospice Pre- Election and Counseling Services,” HCPCS code G0337, are not subject to the editing usually required on hospice claims to match the claim to an established hospice period. Further, contractors do not apply payments for hospice pre- election evaluation and counseling consultation services to the overall hospice cap amount.187

Medicare must ensure that this counseling service occurs only one time per beneficiary by imposing safeguards to detect and prevent duplicate billing for similar services. If “new patient” physician services (HCPCS codes 99201-99205) are submitted by a Medicare contractor to the Common Working File (CWF) for payment authorization, but HCPCS code G0337 (Hospice Pre-Election Evaluation and Counseling Services) has already been approved for a hospice claim for the same beneficiary, for the same date of service, by the same physician, the physician service will be rejected by CWF, and the service shall be denied as a duplicate.192,195

Medicare Advantage

Medicare Advantage (MA) plans are required to cover the same services as traditional Medicare and to apply no more restrictive coverage criteria. The relationship between providers and MA plans is contractual, however, and providers will need to carefully review their contracts with each MA plan to ascertain payment amounts and pre-requisites such as prior approval.

Unlike Medicare fee-for-service, Medicare Advantage gives physicians a financial incentive to recommend hospice for patients nearing the end of life because, under existing law, when plan members enroll in hospice, fee-for-service Medicare becomes the payer. This hospice “carve-out” makes it attractive for a plan to shift patients likely to be high cost from its rolls to the Medicare Hospice

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 122 Benefit, but also decreases the incentive for the plan to develop high-quality palliative care services. As of the date of this publication, federal policymakers are evaluating whether this “carve-out” should continue. Medicare Part C Medicare Advantage Plans:197 • Coverage must be same as Part B • Physicians must contract with the Part C carrier • Services subject to carrier fee-for-service rates, authorization, and billing requirements

Non-Medicare Beneficiaries

Palliative care services, while not defined per se, can be billed to the extent that they qualify as reasonable and necessary under each state’s plan. Medicaid rates, however, may be less than other payers. Some states are considering a “palliative care bundle” under Medicaid managed care or innovation grants.

Key Features of Medicaid Palliative Services:100,198

• Professional services are dependent on state plans, provider agreements and rate setting. • Medicaid third party administrators (TPAs) or Managed Care Organizations (MCOs) authorize palliative services subject to payment review and billing requirements, such as authorizations and timely filing. • Future payment reform with CMS State Innovations Models (SIM) could change how Medicaid reimburses palliative care services. • SIM multi-payer payment and delivery models offer the opportunity to accelerate health transformation. These efforts are designed to reduce reliance on payment methodologies based on volume and encourage movement toward payment based on outcomes by reinforcing the expectation that providers and payers must be engaged in order to create meaningful delivery and payment system reforms.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 123 Private insurance plans, generally offered as Employer Group Health Plans, define patient eligibility, palliative care benefits, physician/NP rates, and billing requirements. Provider agreements stipulate if authorization is needed to bill. Timely filing limits can be much shorter than other payers, increasing exposure to claims denials. New models for advanced disease care that allow patients to receive hospice-like services and disease treatments at the same time are being offered by some commercial plans. These benefits could expand palliative services to covered members.

Palliative care partnerships are forming to offer payment and incentives to providers that integrate palliative care practices and demonstrate associated quality outcomes. The palliative care partnerships strive to ensure that palliative care and related services (such as advance care planning discussions) are defined as medically necessary and to enhance member benefits and provider reimbursements to reduce financial and awareness barriers to palliative care services. Key features of the palliative care partnership include: • Medical policies should cover palliative care home visits for both physicians and non-physician team members. • Benefits should include hospice and palliative care services offered concurrently with medical treatment, even if a reasonable limit is placed on those services. • Preauthorization policies should support early and ongoing as-needed engagement of palliative care services. • Reasonable payment fees for palliative care specialists to include palliative care team members, such as social workers, chaplains, and dedicated care coordination service professionals. • Adherence to palliative care standards and the achievement of specific related outcomes (such as the conduct and documentation of goals-of-care conversations, assessment and treatment of distressing symptoms, safe practices, appropriate and timely hospice referrals, and routine assessment of and support for family caregiver needs). nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 124 • Inclusion of all providers (i.e., primary care, hospice, specialist and palliative care providers) and care delivery team members in payment innovation program incentives for the outcome measures listed above.59,180,199

All Veterans’ Administration (VA) facilities have a Palliative Care Consult Team (PCCT) as a resource for hospice and palliative care provided in the VA facility and coordinated in the community. In the past, the VA furnished home hospice services through a limited fee for service program using Medicare LUPA rates. Today, all enrolled veterans are eligible for a comprehensive array of needed in- home services. These services in VA’s Medical Benefits Package, including hospice and palliative care, are playing an increasingly important role in the VA’s integrated health care delivery system.32

One out of every four dying Americans is a veteran. Veterans often carry experiences from their service that present unique challenges, and, unfortunately, many of them may not know about or have access to hospice and palliative care. In an effort to address these concerns and respond to the needs of veterans, the National Hospice and Palliative Care Organization partnered with the Department of Veterans Affairs in 2010 to create a program called We Honor Veterans. Another VA program, Reaching Out, provided a grant opportunity sponsored by NHPCO, in collaboration with the Department of Veterans Affairs, for hospice providers who are experienced in providing quality hospice and palliative care for rural and homeless veterans.200

Under current traditional fee-for-service provider contracts, physician and NP reimbursements generally do not cover the cost of these professional palliative consultation services. Hospices or home health agencies that elect to provide palliative services in hospitals, nursing facilities, or the patient’s homes are faced with absorbing the additional costs or finding funding to subsidize the losses. Hospices and home health agencies that provide palliative services are now nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 125 increasingly likely to negotiate with hospital systems, free-standing hospitals, and nursing facilities to cover the costs of palliative consultation services not covered by third party payers. As palliative care programs demonstrate reduced overall costs for these institutions, such as outsourcing cost-effective palliative services or reducing readmission penalties, they are in a favorable position to negotiate contract rates that cover the full cost of palliative services.201,202

Care Planning Act

The Care Planning Act establishes Medicare reimbursement for healthcare professionals and provides a voluntary and structured discussion about the goals and treatment options for individuals with serious illness, resulting in a documented care plan that reflects the informed choices made by patients in consultation with members of an interdisciplinary team, faith leaders, family members and friends.

In February 2015, the U.S. Department of Health and Human Services (DHHS) announced a new multipayer payment and care delivery model to support better care coordination for cancer care as part of the Department’s ongoing efforts to improve the quality of care patients receive and to spend health care dollars more wisely, contributing to healthier communities. The initiative will include 24- hour access to practitioners for beneficiaries undergoing treatment, and an emphasis on coordinated, person centered care, aimed at rewarding value of care, rather than volume. The Oncology Care Model encourages participating practices to improve care and lower costs through episode-based, performance- based payments that financially incentivize high-quality, coordinated care. Participating practices will also receive monthly care management payments for each Medicare fee-for-service beneficiary during an episode to support oncology practice transformation, including the provision of comprehensive, coordinated patient care.153,164

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 126 Reporting on Quality

Information about the quality of palliative care and hospice programs is limited, but both the United States and other nations are investing in outcome measures for quality improvement and public reporting. The National Quality Forum (NQF) Framework and Preferred Practices include a number of relevant structure and process measures, but their correlation with relevant outcomes (symptom burden, caregiver burden, satisfaction, transitions, cost) is not known. Investigators at Brown University, along with the National Hospice and Palliative Care Organization (NHPCO), developed a survey measuring the postdeath hospice family evaluation of care (the Family Evaluation of Hospice Care or FEHC), which has been endorsed by the NQF. This voluntary survey measures the quality of hospice interventions directed toward the family as well as the family's perspective of the quality of care received by the patient.

Individual hospice programs use the results of these NHPCO-administered surveys to improve their performance; they are not yet mandatory or publicly reported. While the perspective of the family is obviously a central component of quality, it may not fully reflect the patient's actual experience. For example, in studies that compare family and patient ratings of symptom intensity, families rate pain higher than patients themselves do, and patients rate family distress higher than family members do. Given these patients' advanced stage of illness, there are inherent difficulties in fashioning an empirical tool that is feasible, actionable, and patient centered to directly assess the patients' perceptions of hospice or palliative care. The Center for Medicare and Medicaid Services (CMS) of the U.S. Department of Health and Human Services does not currently require quality reporting from hospice, unlike other major Medicare provider groups (nursing homes, rehabilitation facilities, hospitals, certified home health agencies), although a Quality Assessment and Performance Improvement (QAPI) program has been required as a hospice condition of participation in Medicare since 2008.26,101,203

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 127 The 2010 Affordable Care Act (PL 111–148 section 3004), however, requires hospice to report to CMS on quality measures or face a 2% reduction in payments. Measures are to be endorsed by a “quality measure consensus-based entity” and must be published no later than October 1, 2012, for reporting to CMS beginning October 1, 2013. Through contracts with its state-based quality improvement organizations, CMS has initiated several projects to develop and field-test a series of hospice and palliative care measures (PEACE Project), as both stand-alone measures and part of the validation of the CARE instrument (Continuity Assessment Record and Evaluation), a uniform cross-setting quality instrument developed by CMS. A new NQF call for hospice and palliative care measures was released in April 2011 under a contract from CMS as required by the Affordable Care Act (H.R. 3590 section 3004).184

As with hospice, palliative care programs currently have no external quality- reporting requirements. The American Hospital Association's annual survey contains a yes/no question on presence of a hospital palliative care program but does not ask for further information. The Center to Advance Palliative Care (CAPC) launched a program registry in 2009 for voluntary reporting on palliative care structure and process measures derived from the NQF Framework and Preferred Practices. Although data from the registry are not currently publicly available, they are promised in 2012, assuming there are enough registrants to allow valid comparison data. A series of consensus guidelines on structure and process measures for hospital consultation and inpatient-unit programs, derived from the NQF Framework, were developed and published by the Center to Advance Palliative Care between 2008 and 2010, but they have been neither field-tested nor validated against patient level and efficiency outcomes.

The U.S. Department of Veterans Affairs developed measures that evaluate the incidence of discussions on goals, chaplain visits, and advance directives. These measures then are used to evaluate palliative care teams in VA hospitals. Importantly, The Joint Commission (TJC), which accredits most hospitals in the nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 128 United States, created and field-tested a voluntary certificate program derived from the NQF Framework for palliative care, which it plans to release in September 2011.180,199

Standardized empirical quality metrics that can be used for either internal or external quality-reporting and pay-for-performance methods are needed. As with other clinical outcome measures, quality metrics for palliative care and hospice should be able to demonstrate a clear link between structure and process and the relevant clinical and patient-centered outcomes, and the measures should represent areas that providers can improve.

Barriers To Palliative Care

The primary barriers to receiving quality palliative care and hospice are variability in access by geographic and other characteristics, an inadequate workforce and workforce pipeline to meet the needs of patients and their families, the need for an adequate research evidence base to guide and measure the quality of care, and the lack of public knowledge of, and demand for, the benefits of palliative care and hospice.

Workforce Skill

An inadequate medical and nursing workforce with expertise in palliative care is one of the greatest barriers to access. A report commissioned by the Health Resources and Services Administration (HRSA) in 2002 projected significant shortfalls in the nation's number of palliative medicine specialists and called for a policy focused on increased education and training in palliative medicine across all clinical specialties serving patients with chronic and serious illness, expanded funding and reimbursement to attract young physicians into the field, and examination of the appropriate role of nonphysician professionals (such as nurse practitioners, clinical social workers, and physician assistants) in strengthening access to palliative care across health care settings. nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 129 Another physician-specific workforce study commissioned by the American Academy of Hospice and Palliative Medicine in 2010 conservatively estimated a shortfall of at least 2,787 full-time physicians (or approximately 6,000 palliative medicine physicians, given the frequency of part-time participation in the field). This estimate did not factor in the as yet unmet need for access to outpatient specialist-level palliative care, currently among the greatest barriers to access for chronically and seriously ill persons who are not in the hospital and are not eligible for hospice. Because the time and communication-intensive nature of palliative care precludes standard productivity measures based on the volume of patients seen, part of the difficulty in expanding workforce capacity is the lack of appropriate and standardized productivity and compensation models for palliative care physician and nurse practitioner services in both inpatient and outpatient settings.111,155

This workforce shortage has also had an impact on the hospice community. Growth in the number of hospice programs (and patients served) has rapidly outstripped growth in the number of trained professionals. More recently, the CMS requirement of face-to-face visits by physicians or nurse practitioners in order to recertify a patient's continued prognostic eligibility for hospice services has heightened the mismatch between workforce capacity and clinical need. A 1997 Institute of Medicine (IOM) report entitled Approaching Death: Improving Care at the End of Life also called for policy changes aimed at strengthening the palliative care workforce. In part, as a response to the IOM report, in 2006 hospice and palliative medicine was approved by the American Board of Medical Specialties as a subspecialty of ten parent specialties (including , family medicine, surgery, pediatrics, and neurology). Subsequently, the Accreditation Council for Graduate Medical Education certified the first seventy-eight postgraduate fellowship training programs to develop the palliative medicine specialist workforce necessary to meet the nation's needs.53,204

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 130 A continuing barrier to physician specialty training in palliative medicine is the cap on Medicare-funded graduate medical education (GME) slots in U.S. teaching hospitals. Despite a 30% growth in the U.S. population and a doubling of the number of Americans over age sixty-five since 1997, the total number of Medicare-funded graduate medical education training slots has been capped at about 80,000 since the passage of the Balanced Budget Act in 1997. At present, the distribution of GME slots is entirely within the purview of each and is not federally mandated. Since Medicare is the dominant funder of graduate medical education in the United States, a new subspecialty like palliative medicine has little power to secure GME-funded slots from long- standing and preexisting training programs. As a result, specialty training in palliative medicine is largely dependent on private-sector philanthropy.24,52,204-206

In recognition of the need for data to inform federal training priorities, the August 2010 U.S. Senate Appropriations Committee report for the Departments of Labor, Health and Human Services, and Education for 2011 included language in its Health Professions Workforce Information and Analysis section calling for HRSA- sponsored studies on the adequacy of the palliative care workforce:108

The (U.S. Senate Appropriations) Committee is aware that hospice and palliative medicine [HPM] improves quality, controls cost and enhances patient/family satisfaction for the rapidly expanding population of patients with serious or life-threatening illness. Therefore, the Committee encourages HRSA to study workforce trends, training capacity and need for HPM physicians, physician assistants and nurse practitioners in our Nation's academic medical centers, hospice organizations and palliative care programs.

Access

Until recently, palliative care services were typically available only to patients enrolled in hospice. Now, however, palliative care programs are found nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 131 increasingly in hospitals — a main site of care for the seriously ill and, on average, the site of death for 50% of adults nationwide — as well as in other settings. In 2009, 62% of U.S. hospitals (with at least 50 beds) and 84% of hospitals with more than 300 beds reported having a palliative care program, which is an increase of 134% from 2000.32

The 47% growth in the number of hospice programs and the 74% increase in the number of persons served by hospice in the United States in the last ten years have been equally dramatic. In 2009, there were 3,400 programs (93% of which are Medicare certified) serving approximately 1.56 million Americans, primarily in their homes (56% of days), nursing homes (29% of days), or assisted living facilities (10.9% of days). In 2009 more than 40% of Medicare decedents used hospice at some point in their care, an increase from 23% in 2000. More than 80% of hospice beneficiaries are over age sixty-five, and more than one-third are over eighty-five.

In tandem with the aging of the hospice and U.S. population, patterns of diagnosis have changed. Ten years ago the majority (53%) of hospice patients died from cancer, while by 2008 only 31% had cancer and 69% died from chronic debilitating diseases such as frailty, atherosclerotic and respiratory disease, and dementia, for whom the art and science of predicting prognosis is considerably more uncertain. These shifts in diagnoses reflect a pattern of hospice utilization increasingly correlated with the leading causes of death (cancer accounts for fewer than 25% of deaths in the United States), suggesting that hospice providers are responding to the needs of Medicare beneficiaries.11,57,89

Access to palliative care and hospice programs is highly variable across the country. For-profit, southern U.S., and small and safety-net hospitals (fewer than 100 beds) are less likely to report hospital palliative care programs, compared with not-for-profit hospitals, hospitals outside the South, and larger hospitals. Even in settings in which a palliative care team is available, there is a great deal nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 132 of variability in the services to which patients have access, ranging, for example, from a half-time nurse to a full interdisciplinary palliative care team. The presence of an adequately staffed palliative care team by itself, however, does not ensure access to palliative care for patients in need of it.

At most U.S. hospitals, referral requires a request for consultation from the attending physician. In turn, variability in physicians' practice patterns, awareness, and training is a major contributor to the variability of patients' access. In an effort to reduce variability in access to palliative care for patients in need, a recent proposal calling for universal patient screening for the need for palliative care carried out upon admission to hospital or nursing home and for outpatients living with serious or complex illnesses could improve access to palliative care by promoting and standardizing early recognition and intervention.55,151,164,207 Access to hospice is also highly variable, received by a low of 6.7% of all deaths in Alaska, to a high of 44.7% in Arizona, based on 2006 data. Reasons for this variation in the utilization of hospice are unclear, as they do not appear to be related to differences in availability of hospice capacity across the states.90

Summary

Although palliative care has its roots as a critical part of hospice care, modern palliative care has evolved to encompass the treatment of non-terminal illness and injury in an effort to extend both quality and quantity of life. Advancements in treatment options, along with improved access to medical professionals and extended benefits for Medicare beneficiaries, have made the field of palliative care an emerging and rapidly expanding industry. The Affordable Care Act of 2010 had an important impact on the availability of these services, and while there is room for improvement, the field of palliative care is on track to continue its growth for years to come.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 133 Palliative care focuses on achieving the best-possible quality of life for patients and their family caregivers, based on patient and family needs and goals and independent of prognosis. Interdisciplinary palliative care teams assess and treat symptoms, support decision making and help match treatments to informed patient and family goals, mobilize practical aid for patients and their family caregivers, identify community resources to ensure a safe and secure living environment, and promote collaborative and seamless models of care across a range of care settings (i.e., hospital, home, and nursing home).

Ideally, palliative care should be initiated concurrently with a diagnosis of a serious illness and at the same time as curative or disease-modifying treatments, given the near universal occurrence of patient and family distress and their need for information and support in establishing achievable goals for the patient's medical care. The Affordable Care Act did not explicitly address palliative care, but it did make some potential improvements to hospice services. There are opportunities in payment reforms and quality improvement initiatives that will hopefully have a positive impact on cancer patients, both terminal and those who will become survivors. It is imperative that palliative care be addressed and not avoided in some of the bundling payment and ACO pilot programs, no matter how operationally challenging this may be. With a rapidly aging population that faces more chronic diseases than any previous generations, palliative care cannot be excluded from legislation and coverage.

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nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 134 1. People in the United States now live an average of ______after they receive a terminal diagnosis.

a. six months b. one year c. thirty months d. 24 months

2. True or False: Modern palliative care is limited to the treatment of terminally ill patients and is focused on extending both quality and quantity of life.

a. True b. False

3. Which of the following defines or describes the role of palliative care in treating patients?

a. Palliative care affirms life and disregards dying. b. Palliative care is applicable during the last 6 months of an illness. c. Palliative care intends neither to hasten nor postpone death. d. All of the above

4. The role of palliative nursing is to assess needs of the patient and the patient’s family related to their

a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above

5. Palliative intervention is distinct from specialized palliative care because palliative intervention distinctively concerns intervention

a. when the disease is not curable. b. for cancer patients only. c. that is vital in all clinical practice for illnesses at all stages. d. that is intended to postpone death.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 135 6. ______should be part of what all clinicians provide their patients (such as pain and symptom management, discussions about advance care planning).

a. Tertiary palliative care b. Generic palliative care c. Secondary palliative care d. Primary palliative care

7. True or False: Research shows that family stress is highest in end-of- life decision-making in the absence of advance healthcare directives.

a. True b. False

8. Key features of palliative care include

a. recognition and relief of spiritual/existential suffering. b. affirmation of life and disregard for dying. c. care only during the last 6 months of an illness. d. care that intends to postpone death in the last 6 months of an illness.

9. Cultural diversity issues can become particularly prominent at the end-of-life as well; by example, ______tend to discourage direct disclosure to dying patients and instead encourage decision- making by family members.

a. Caucasians b. Asians c. African Americans d. Europeans

10. By some estimates, the average patient will spend ______of the entire healthcare dollars spent during their entire lifetime, during those last thirty months.

a. 75% b. 30% c. 25% d. half

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 136 11. The Medicare Hospice Benefit is largely restricted to patients with

a. terminal cancer. b. curative therapies. c. a prognosis of living for six months or less. d. specialist-level palliative care.

12. Which of the following sites in NOT a common location for administering palliative care?

a. Nursing home b. Hospital c. Patient’s home d. Extended care facility

13. True or False: Hospice care and palliative care are distinctive in that palliative care ends when hospice care begins.

a. True b. False

14. A patient with a life-threatening illness can receive palliative care

a. once the patient is diagnosed as terminally ill. b. in the final stages of illness. c. if the patient foregoes curative therapies. d. at any time.

15. Hospice care is a specialized type of palliative care for patients suffering from

a. a life-threatening disease. b. multiple illnesses. c. incurable cancer. d. terminal illnesses with a life expectancy of six months or less.

16. Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible

a. as curative therapies are explored. b. in order to extend the patient’s life expectancy. c. during the time they have remaining. d. All of the above

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 137 17. True or False: Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.

a. True b. False

18. When a patient enters hospice care,

a. all treatment is discontinued, except pain relief. b. attempts to cure the patient’s underlying illness are stopped. c. the patient may not return to curative therapies. d. the stage of the illness is not a consideration.

19. Today there is approximately one palliative trained physician for every _____ patients with a serious illness.

a. 100 b. 50 c. 1,200 d. 500

20. Ageism in palliative care refers to

a. elderly patients being marginalized because of their age. b. child care palliative services. c. elderly patients receiving more attention in palliative care. d. end-of-life treatments.

21. True or False: It is important to note that the prognosis-based distinction between palliative care and hospice is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.

a. True b. False

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 138 22. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, ____ of patients with dementia were hospitalized in their last year of life.

a. one-third b. 40% c. half d. 67%

23. A good rule is to aim for a ratio of not less than one ______to 1.5 patients throughout 24 hours.

a. nurse b. registered nurses c. physicians d. specialty nurses

24. The hospice or palliative day care unit is a model of care designed for patients being cared for

a. in a hospital. b. in palliative care clinics. c. at home. d. in an in-patient unit.

25. True or False: If a patient and the patient’s family agree to "comfort care," they have agreed to a do-not-resuscitate status.

a. True b. False

26. With hospice or palliative day care facilities and activities, people with a specific illness, i.e., cancer

a. should be cared for separate from people with other illnesses. b. may be mixed with people with other illnesses. c. are best cared for with other cancer patients. d. do not benefit when mixed with people with other illnesses.

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 139 27. To assess the palliative care needs of a local population, the ______approach relates local cause-specific mortality in diseases that are likely to benefit from palliative care services to the type and frequency of symptoms experienced by patients suffering from these diseases.

a. comparative b. corporate c. holistic d. epidemiological

28. The main limitation of the ______approach (in the assessment of palliative care needs) is that it does not assess unmet need, which must then be evaluated by other methods.

a. comparative b. corporate c. holistic d. epidemiological

29. True or False: One of the essential structural elements of palliative care is access and responsiveness twenty-four hours per day, seven days per week.

a. True b. False

30. In the assessment of palliative care needs, the ______needs assessment approach examines levels of service utilization rather than disease categories.

a. comparative b. corporate c. holistic d. epidemiological

31. In palliative care, the term ______is used in the implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of a new way of doing things and providing leadership to others.

a. epidemiological b. holistic c. change agent d. cause-specific

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 140 32. In the palliative care model, leadership is filled by ______of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.

a. the social worker b. the physician c. the member d. the family member

33. In the assessment of palliative care needs, the ______approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.

a. corporate needs assessment b. comparative needs c. holistic d. epistemological

34. True or False: With the corporate approach for assessing palliative care needs, those applying the corporate approach must be aware of bias and the politics of vested interests.

a. True b. False

35. Because of the interdependency among interprofessional team members, professional conflict will inevitably arise, which

a. must be avoided at all times. b. which may stifle the creativity of the team. c. is never beneficial for the interprofessional team. d. may be beneficial and stimulating to the interprofessional team.

36. ______will cause uniformity of the group, which may stifle the creativity and the professional advancement and development of team members.

a. The corporate approach b. The structured approach c. The change agent d. A lack of respectful conflict

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 141 37. Cross-functional or interdisciplinary teams

a. provide a slower response to a patient’s need when a crisis arises. b. stifle creativity. c. provide a unique forum for creative problem solving. d. lead to less flexibility.

38. Recent research suggests that the three concepts of ______come together in a therapeutic encounter between the nurse and patient in the palliative care setting.

a. corporate, comparative and holistic b. psychological, social and medical c. partnership, intimacy and reciprocity d. interprofessional, teamwork and individual care

39. True or False: It is possible and advisable for palliative care teams to provide direct care for all patients with palliative care needs.

a. True b. False

40. The basic tasks of a social worker, such as facilitating discharge, arranging help in the home, etc., can usually be dealt with by someone appropriately trained,

a. who is a family member if unlicensed. b. who must be a medical professional. c. who must be a licensed as a social worker. d. though not necessarily accredited as a social worker.

41. The initial step in developing a palliative care plan is to gather all relevant information from

a. the patient. b. the patient’s family c. the patient’s medical records. d. All of the above

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 142 42. The fundamental aspects of care planning are through a fusion of theory and practice-based learning, with the theory element based on the ______activities of daily living model.

a. Roper–Logan–Tierney (RLT) b. National Alliance for Caregiving c. Specialist Palliative Care Services (NCHSPCS) d. National Quality Forum (NQF) Guidelines’

43. True or False: Family caregivers account for 80% of all at-home care services in the U.S.

a. True b. False

44. Palliative care is estimated to save ______per year.

a. 1.2 billion b. $500 million c. $100 million d. None of the above

45. Perhaps most importantly, when initiated early in the disease course, palliative care

a. improves clinical and quality of care outcomes. b. improves quality of care but does not prolong survival. c. improves quality of care but does not reduce cost of care. d. None of the above

46. Thirty percent of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only _____ of patients receiving standard care alone reported having these discussions.

a. 5% b. 20% c. 14% d. 25%

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 143 47. True or False: Several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.

a. True b. False

48. Under the Affordable Care Act, children are able to access hospice and ______simultaneously.

a. psychological care b. social care c. spiritual care d. curative care

49. A patient is eligible for hospice care if ______that the patient has a prognosis of six months or less to live.

a. the patient’s primary physician determines b. two physicians determine c. the patient believes d. the patient’s family determines

50. True or False: Medicare does not use the term palliative so coverage is provided by standard Medicare Part B benefits for these specific services.

a. True b. False

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 144 CORRECT ANSWERS:

1. People in the United States now live an average of ______after they receive a terminal diagnosis.

c. thirty months

“People in the U.S., now live an average of thirty months after they receive a terminal diagnosis.”

2. True or False: Modern palliative care is limited to the treatment of terminally ill patients and is focused on extending both quality and quantity of life.

b. False

“… modern palliative care has evolved to encompass the treatment of non-terminal illness and injury in an effort to extend both quality and longevity of life.”

3. Which of the following defines or describes the role of palliative care in treating patients?

c. Palliative care intends neither to hasten nor postpone death.

“Palliative care: … intends neither to hasten nor postpone death.”

4. The role of palliative nursing is to assess needs of the patient and the patient’s family related to their

a. physical treatment. b. psychological and spiritual health. c. social needs. d. All of the above [correct answer]

“All life-threatening illnesses – be they cancer, neurological, cardiac or respiratory disease – have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative nursing is therefore to assess needs in each of these areas and to plan, implement and evaluate appropriate interventions.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 145 5. Palliative intervention is distinct from specialized palliative care because palliative intervention distinctively concerns intervention

a. when the disease is not curable.

“With the growth of palliative care as a specialty, there can be some confusion as to what specialist palliative care is and where and how this should be practiced. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) advocates the palliative care approach as a vital and integral part of all clinical practice, whatever the illness or its stage…. Palliative intervention, on the other hand, concerns intervention when the disease is not curable.”

6. ______should be part of what all clinicians provide their patients (such as pain and symptom management, discussions about advance care planning).

d. Primary palliative care

“Primary palliative care should be part of what all of clinicians provide their patients (such as pain and symptom management, discussions about advance care planning).”

7. True or False: Research shows that family stress is highest in end-of- life decision-making in the absence of advance healthcare directives.

a. True

“Research shows, however, that family stress is highest in the absence of advance directives, Stress is lower when verbal advance directives guide the family, and lowest when written advance directives are in place.”

8. Key features of palliative care include

a. recognition and relief of spiritual/existential suffering.

“Key Features of Palliative Care: … Recognition and relief of spiritual/existential suffering.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 146 9. Cultural diversity issues can become particularly prominent at the end-of-life as well; by example, ______tend to discourage direct disclosure to dying patients and instead encourage decision- making by family members.

b. Asians

“For example, African American older adults are less likely than others to agree to withhold life-sustaining treatment even when quality of life is poor, and cultural values among many Asian groups discourage direct disclosure to dying patients and instead encourage decision-making by family members.”

10. By some estimates, the average patient will spend ___ of the entire healthcare dollars spent during their entire lifetime, during those last thirty months.

a. 75%

“By some estimates, the average patient will spend 75% of the healthcare dollars over an entire lifetime during the last thirty months of life.”

11. The Medicare Hospice Benefit is largely restricted to patients with

c. a prognosis of living for six months or less.

“The Medicare Hospice Benefit is largely restricted to patients with a prognosis of living for six months or less, if the disease follows its natural course, who agree to forgo therapies with curative intent.”

12. Which of the following sites in NOT a common location for administering palliative care?

c. Patient’s home

“While palliative care can be administered in the home, it is most common to receive palliative care in an institution such as a hospital, extended care facility, or nursing home that is associated with a palliative care team.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 147 13. True or False: Hospice care and palliative care are distinctive in that palliative care ends when hospice care begins.

b. False

“While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less.”

14. A patient with a life-threatening illness can receive palliative care

d. at any time.

“Patients can receive palliative care at any time, at any stage of illness whether it be terminal or not.”

15. Hospice care is a specialized type of palliative care for patients suffering from

d. terminal illnesses with a life expectancy of six months or less.

“While palliative care is available to any patient with a serious illness, hospice care is a specialized type of palliative care for patients suffering from an incurable illness or multiple illnesses with a life expectancy of six months or less.”

16. Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible

c. during the time they have remaining.

“Hospice care is focused on improving quality of life, maintaining dignity, and making patients as comfortable as possible during the time they have remaining.”

17. True or False: Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.

a. True

”Where palliative care programs and hospice care programs differ greatly is in the care location, timing, payment, and eligibility for services.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 148 18. When a patient enters hospice care,

b. attempts to cure the patient’s underlying illness are stopped.

“By entering hospice, attempts to cure the patient’s underlying illness are stopped.”

19. Today there is approximately one palliative trained physician for every _____ patients with a serious illness.

c. 1,200

“Despite nearly a doubling in palliative care programs and increases in hospice programs and individuals served, today there is approximately one palliative trained physician for every 1,200 patients with a serious illness.”

20. Ageism in palliative care refers to

a. elderly patients being marginalized because of their age.

“Many older people are marginalized and do not receive information about the full range of services or options available. The term ‘a Cinderella service’ has been coined with older people being discriminated on the grounds of age.”

21. True or False: It is important to note that the prognosis-based distinction between palliative care and hospice is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.

a. True

“It is important to note that the prognosis-based distinction between palliative care (eligibility based on need, no prognostic restriction) and hospice (eligibility based on a prognosis of living less than six months) is unique to the United States, whereas in other countries the terms palliative care and hospice are largely synonymous.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 149 22. Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, ____ of patients with dementia were hospitalized in their last year of life.

d. 67%

“Dysphagia, causing aspiration pneumonia, and immobility and incontinence causing urinary tract infections, are common reasons for hospital admissions in end of life care for people with dementia, indeed, 67% of patients with dementia were hospitalized in their last year of life.”

23. A good rule is to aim for a ratio of not less than one ______to 1.5 patients throughout 24 hours.

a. nurse

“A good rule is to aim for a nurse/patient ratio of not less than one nurse to 1.5 patients throughout 24 hours.”

24. The hospice or palliative day care unit is a model of care designed for patients being cared for

c. at home.

“Hospice/Palliative Day Care Unit: This is a model of care designed for patients being cared for at home (or in the home of a relative or in a Nursing Home/Rest Home).”

25. True or False: If a patient and the patient’s family agree to "comfort care," they have agreed to a do-not-resuscitate status.

b. False

“For example, what does "comfort care" really mean? In reality, it may mean different things to different people. If a family agrees to "comfort care," have they agreed to a do-not-resuscitate status?”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 150 26. With hospice or palliative day care facilities and activities, people with a specific illness, i.e., cancer

b. may be mixed with people with other illnesses.

“It does not seem to matter if people with different illnesses are put together – those with cancer mixing easily with those suffering cardiac or neurological problems. Invariably patients discuss with each other what they suffer from, what care they have had and how long they expect to live.”

27. To assess the palliative care needs of a local population, the ______approach relates local cause-specific mortality in diseases that are likely to benefit from palliative care services to the type and frequency of symptoms experienced by patients suffering from these diseases.

d. epidemiological

“The epidemiological approach makes use of local cause-specific mortality in diseases that are likely to benefit from palliative care services, and then relates this to the type and frequency of symptoms experienced by patients suffering from these diseases.”

28. The main limitation of the ______approach (in the assessment of palliative care needs) is that it does not assess unmet need, which must then be evaluated by other methods.

a. comparative

“The comparative needs assessment approach examines levels of service utilization rather than disease categories…. But there are a number of difficulties in this approach. The main limitation is that it does not assess unmet need, which must then be evaluated by other methods.”

29. True or False: One of the essential structural elements of palliative care is access and responsiveness twenty-four hours per day, seven days per week.

a. True

“The essential structural elements of palliative care are the following: … Access and responsiveness twenty-four hours per day, seven days per week.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 151 30. In the assessment of palliative care needs, the ______needs assessment approach examines levels of service utilization rather than disease categories.

a. comparative

“The comparative needs assessment approach examines levels of service utilization rather than disease categories.”

31. In palliative care, the term ______is used in the implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of a new way of doing things and providing leadership to others.

c. change agent

“Within every such clinical encounter there exists an opportunity to model the palliative care approach and to act as change agents. The term ‘change agent’ is used in the implementation of quality improvement and refers to clinicians acting as catalysts for change through modeling of the new way of doing things and providing leadership to others.”

32. In the palliative care model, leadership is filled by ______of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.

c. the member

“In the palliative care model, leadership is filled by the member of the interprofessional team who is best educated and qualified to address and focus upon specific patient or family goals.”

33. In the assessment of palliative care needs, the ______approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.

a. corporate needs assessment

“The corporate needs assessment approach involves a structured collection of the knowledge and views of local informants on healthcare services and unmet needs.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 152 34. True or False: With the corporate approach for assessing palliative care needs, those applying the corporate approach must be aware of bias and the politics of vested interests.

a. True

“The corporate approach is essential if policies to meet unmet needs are to be sensitive to local circumstances. There are, nevertheless, caveats in adopting this approach. Those undertaking the exercise must be aware of bias and the politics of vested interests.”

35. Because of the interdependency among interprofessional team members, professional conflict will inevitably arise, which

d. may be beneficial and stimulating to the interprofessional team.

“Because of the interdependency among interprofessional team members, professional conflict will inevitably arise, which may be beneficial and stimulating to an interprofessional team.”

36. ______will cause uniformity of the group, which may stifle the creativity and the professional advancement and development of team members.

d. A lack of respectful conflict

“Respect and trust in each team member’s skills, knowledge, expertise, and motivation are imperative. Lack of respectful conflict will result in uniformity of the group, which may stifle the creativity and the professional advancement and development of team members.”

37. Cross-functional or interdisciplinary teams

c. provide a unique forum for creative problem solving.

“Cross-functional or interdisciplinary teams provide a unique forum for creative problem solving, especially if every member’s contribution is genuinely solicited and respected.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 153 38. Recent research suggests that the three concepts of ______come together in a therapeutic encounter between the nurse and patient in the palliative care setting.

c. partnership, intimacy and reciprocity

“Nurse–patient relationships are central to the nursing role in palliative care and this relationship should benefit the patient. Recent research suggested that the three concepts of partnership, intimacy and reciprocity come together in a therapeutic encounter between the nurse and patient.”

39. True or False: It is possible and advisable for palliative care teams to provide direct care for all patients with palliative care needs.

b. False

“It is neither possible nor advisable for palliative care teams to provide direct care for all patients with palliative care needs.”

40. The basic tasks of a social worker, such as facilitating discharge, arranging help in the home, etc., can usually be dealt with by someone appropriately trained,

d. though not necessarily accredited as a social worker.

“The basic tasks of a social worker, such as facilitating discharge, arranging help in the home, obtaining financial assistance, making special holiday arrangements etc., can usually be dealt with by someone appropriately trained, though not necessarily accredited or paid as much as a social worker.”

41. The initial step in developing a palliative care plan is to gather all relevant information from

a. the patient. b. the patient’s family c. the patient’s medical records. d. All of the above [correct answer]

“The initial step in developing a care plan is to gather all relevant information from the patient, their family and their medical records.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 154 42. The fundamental aspects of care planning are through a fusion of theory and practice-based learning, with the theory element based on the ______activities of daily living model.

a. Roper–Logan–Tierney (RLT)

“The fundamental aspects of care planning are through a fusion of theory and practice-based learning. The theory element is based on the Roper– Logan–Tierney (RLT) activities of daily living model for nursing, which is accredited by its use worldwide as a successful framework for all elements of nursing education and care.”

43. True or False: Family caregivers account for 80% of all at-home care services in the U.S.

a. True

“Family caregivers accounts for 80% of all at-home care services in the U.S.”

44. Palliative care is estimated to save ______per year.

a. 1.2 billion

“Palliative care is estimated to save $1.2 billion per year under the current penetration of services (to approximately 1.5 percent of all hospital discharges at 1,500 U.S., hospitals).”

45. Perhaps most importantly, when initiated early in the disease course, palliative care

a. improves clinical and quality of care outcomes.

“Perhaps most importantly, when initiated early in the disease course, palliative care also improves clinical and quality of care outcomes, and possibly prolongs survival.”

nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 155 46. Thirty percent of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only _____ of patients receiving standard care alone reported having these discussions.

c. 14%

“The study also showed that 30% of all patients who received early palliative care reported having discussions about their end-of-life care preferences, whereas only 14% of patients receiving standard care alone reported having these discussions.”

47. True or False: Several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.

a. True

“Contrary to widely held assumptions, several recent studies have demonstrated that both palliative care and hospice care may be associated with a significant prolongation of life for some patient populations.”

48. Under the Affordable Care Act, children are able to access hospice and ______simultaneously.

d. curative care

“The Affordable Care Act (ACA) of 2010, which was signed into law in March 2010, is a combined piece of legislation that includes the ACA (HR 3590) and the Health Care and Education Reconciliation Act of 2010 (HR 4872)…. Although provisions related to access to quality palliative care were removed from the original health reform bills due in part to concerns over perceptions of the care provided, several provisions related to payment and quality reform that impact palliative and hospices services remain. What does remain is a new provision (Section 2302 "concurrent care for children"), under which children are able to access hospice and curative care simultaneously.”

49. A patient is eligible for hospice care if ______that the patient has a prognosis of six months or less to live.

b. two physicians determine

“A patient is eligible for hospice care if two physicians determine that the patient has a prognosis of six months or less to live.” nursece4less.com nursece4less.com nursece4less.com nursece4less.com nursece4less.com 156

50. True or False: Medicare does not use the term palliative so coverage is provided by standard Medicare Part B benefits for these specific services.

a. True

“Medicare does not use the term palliative so coverage is provided by standard Medicare Part B benefits for these specific services.”

References Section

The References below include published works and in-text citations of published works that are intended as helpful material for your further reading.

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