The aging American population will eventually experience one or more chronic illnesses with which they will live with for years before death (Morrison & Meier, 2004
). Four chronic diseases—heart disease, cancer, cerebrovascular disease, and chronic respiratory disease—are the leading causes of death for older adults (Centers for Disease Control and Prevention, 2010
). These chronic diseases share protracted illness trajectories that include phases of decline resulting in progressively advanced disease and disability. Individuals who have illness trajectories such as those in chronic disease can benefit from palliative care. In reality many aging adults experience several chronic illnesses simultaneously, which demand complex care and often overwhelm both the elder and their family members.
A conceptual framework published by Nolan and Mock (2004)
, A Conceptual Framework: Factors Influencing the Integrity of the Human Person,
addresses the complexity of needs, interventions, and processes needed to provide palliative care. The framework is organized around the core concept of the integrity of the human person and the relationship of the healthcare professional to the patient. It builds on the earlier work of Pellegrino (1990)
. The framework involves relationships among the following components: external factors
—the integrity of the health professional, organizational culture, and healthcare resources; internal factors
— spiritual domain, psychological domain, physical domain, functional domain, and community culture and family. Completing the framework are patient care goals and outcomes of care. Although end of life appears to be a prominent part of the framework, Nolan and Mock (2004)
use the Institute of Medicine’s (IOM’s) definition of end of life that extends further up the illness trajectory to include “the period of time during which an individual copes with declining health from an ultimately terminal illness— from a serious though perhaps chronic illness or from the frailties associated with advanced age even if death is not clearly imminent” (Lunney, Foley, Smith, & Gelband, 2003, p. 22
The multidimensional nature of the framework provides a structure for future research related to the factors that influence the integrity
of the person, patient care goals, and outcomes of care. In essence this framework summarizes the major points about palliative care discussed throughout this chapter. In addition, it provides a foundation to passionately go forward in clinical practice, teaching, and research to build the science and the care to relieve suffering and improve quality of life.
Palliative care grew out of the hospice movement. Hospice is both a philosophy of care and an organized form of healthcare delivery. The Latin origin of the word is hospes, which relates to hospitality. During the Middle Ages, pilgrims to the Holy Lands stopped at way stations for food, water, and respite. These way stations (hospices) were also centers of refuge for poor, sick, and dying people.
Dame Cicely Saunders is considered the founder of the modern hospice movement. Educated as a nurse, social worker, and physician, she founded St. Christopher’s Hospice in Sydenham England in 1967. St. Christopher’s Hospice was the first research and teaching hospice and is known for several innovations including pain and symptom management, a holistic approach to care, home care, family support throughout the illness, and bereavement follow up (Meier, 2010
). The services provided by St. Christopher’s Hospice evolved over time to meet the needs of patients and families. Service settings include in-patient care, home care, and palliative daycare centers. Based on Saunders’s work, palliative care services have spread throughout the United Kingdom and the world (Hansford, 2010
). Two years after the opening of St. Christopher’s Hospice, Dr. Elisabeth Kubler-Ross’s book On Death and Dying
(1969) was published. One of the outcomes of her seminal work was the identification of the stages of dying. More importantly, her work initiated a national dialogue recognizing the needs of the dying.
Hospice and palliative care is a complex service with the goal of improving the quality of life of terminally ill persons through a variety of programs in an individualized, flexible, and nonmedical environment (Hearn & Myers, 2001
). St. Christopher’s Hospice continues to serve as a prototype for hospice and palliative care throughout the world. However, Dame Saunders cautions not to clone St. Christopher’s but to refine the principles of hospice and palliative care within the cultural context of the needs of the individuals served.
Although Dame Saunders died in 2005, she had already established Cicely Saunders International in 2002. This charity is the only one in the world with the specific mission to promote research and best practice in palliative care. In May 2010 the Cicely Saunders Institute of Palliative Care was officially opened. The institute’s new building is located next to King’s College Hospital and is a result of the partnership between King’s College London and Cicely Saunders International. The Institute of Palliative Care was built to serve as the hub for a network of international research in palliative care to guide clinical practice, education, and policy with the goal of improving palliative care and quality of life for people throughout the world (Cicely Saunders International, 2010
; Higginson, 2011
Florence S. Wald, a nurse and pioneer in the hospice movement in the United States, strengthened her vision for improving the quality of life for terminally ill persons during a visit to St. Christopher’s Hospice. She conducted a
needs assessment for hospice care in Connecticut. In 1974 the first hospice program in the United States was established in Branford, Connecticut. At that time, the Connecticut Hospice was only a homecare program (no in-patient beds) and became a model of care for the entire United States. As services evolved, in-patient beds were added and Connecticut Hospice became the first independent hospice inpatient facility in the country (Meier, 2010
). Wald’s work for the next 30 years led the way in translating the English hospice philosophy and models of care into the American hospice movement. She is considered the “mother of hospice and palliative nursing care in the United States” by the Hospice and Palliative Nurses Association (HPNA) and Hospice and Palliative Nurses Foundation (HPNF). She became the first recipient of the Hospice and Palliative Nurses Association Leading the Way Award in January 2004 (HPNA, 2011
The National Hospice and Palliative Care Organization (NHPCO) (2010)
estimated there were 5,000 operational hospice programs throughout the United States in 2009. An estimated 1.56 million patients were served by these programs. These figures illustrate the enormous growth and progress in hospice care in the United States since 1974. The majority of hospice patients, 68.61%, die at their place of residence. This could be their private residence, nursing home, or residential facility (NHPCO, 2010
), whereas approximately 50% of the general population die in acute care hospitals (Teno, 2004
). In 2009 the median length of stay was 21.1 days while the average length of stay was 69 days (NHPCO, 2010
). These numbers suggest that late referrals remain a problem. Non-cancer primary diagnoses accounted for 59.9% of hospice admissions in 2009 compared to 40.1% for cancer diagnoses. As evidence of our aging population, 83% of hospice patients were 65 years or older and one third of those were 85 years or older (NHPCO, 2010
). Although these numbers portray tremendous growth in the use of hospice services, the patients admitted were 80.5% White/Caucasian. This is not a new finding, but continued evidence that not all those in need of hospice services receive care.
In the 1990s two reports, the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments
(SUPPORT; 1995) and the IOM report, Approaching Death: Improving Care at the End of Life
(Field & Cassel, 1997
) ignited a concern regarding the status of end-of-life care in the United States. As a result improving end-of-life care was placed on the national healthcare agenda.
The landmark SUPPORT study (SUPPORT Principal Investigators, 1995
) was funded by the Robert Wood Johnson Foundation for $29 million to study the process of dying in five American major teaching hospitals. The study involved approximately 9,000 participants with diagnoses such as heart failure (HF), chronic obstructive pulmonary disease (COPD), colon and lung cancer, and liver failure. Findings included that more than 50% of patients had serious pain the last 3 days of life. In addition, there was poor communication between doctors and patients about their goals of care. There was substantial emotional suffering of patients, families, and professionals. Thirty-one percent of the families lost most of their life savings. The findings from this study sparked a groundswell of initiatives in research, education, and practice, with the goal of changing the culture of death and dying in the United States.
The second landmark study was the IOM’s Committee on Care at the End of Life report, Approaching Death: Improving Care at the End of Life
(Field & Cassel, 1997
). The committee found four broad deficiencies in the care of persons with life-threatening and incurable illnesses. Deficiencies included:
Too many people suffer needlessly at the end of life both from errors of omission— when caregivers fail to provide palliative and support care known to be effective— and from errors of commission—when caregivers do what is known to be ineffective and even harmful.
Legal, organizational, and economic obstacles conspire to obstruct reliably excellent care at the end of life.
The education and training of physicians and other healthcare professionals fail to provide them with the knowledge, skills, and attitudes required to care well for the dying patient.
Current knowledge and understanding are inadequate to guide and support the consistent practice of evidence-based medicine at the end of life. (pp. 264-265)
Healthcare professionals, patients, families, health plan administrators, agency administrators, and policymakers must work together to change attitudes, policies, and actions in order to surmount the deficiencies in palliative care (Field & Cassel, 1997
). The report concluded with optimism that a “vigorous societal commitment … would motivate and sustain individual and collective efforts to create a humane care system that people can trust to serve them well as they die” (Field & Cassel, p. 13).
Clinical Practice Guidelines for Palliative Care
The landmark studies—the SUPPORT study and the IOM report—recognized the need to integrate palliative care into health care for all individuals with chronic, debilitating, and life-limiting illnesses. This need resulted in the National Consensus Project for Quality Palliative Care (NCPQPC) and the establishment of the Clinical Practice Guidelines for Quality Palliative Care
The first edition of the Clinical Practice Guidelines
described the core precepts and structures of clinical palliative care programs needed to promote consistent high standards for palliative care. In addition, individual providers, regardless of the care setting, used the guidelines to provide palliative approaches in their daily clinical practice across the healthcare continuum. In 2006 the National Quality Forum (NQF) integrated the Clinical Practice Guidelines for Quality Palliative Care
into their document A National Framework for Palliative and Hospice Care Quality Measurement and Reporting
). The purpose of the NQF document is to provide a foundational framework for the development of quality measurement and reporting systems and the recommendation of 38 preferred palliative care practices endorsed by the NQF (2006)
. The Clinical Practice Guidelines for Quality Palliative Care
was substantially revised in 2009. The rationale for the revision was to: 1) reflect the evolving scientific evidence and clinical practice; 2) ensure that the 38 preferred palliative care practices and the 8 domains from the Clinical Guidelines
were in agreement; and 3) to provide real-life examples that demonstrate how the theory of the Clinical Guidelines
implemented in clinical practice (NCPQPC, 2009
). Although both documents operationalize palliative care theory and practice through definitions and recommended practices, each has its own function. The NQF framework is the first step in a process to generate quality measures for palliative care, whereas the guidelines are part of the NCPQPC’s ongoing mission to articulate a more expansive vision of quality palliative care.
The National Institutes of Health (NIH) recognized the need to evaluate the current science regarding end-of-life care and convened a State-of-the-Science Conference on Improving End-of-Life Care in December 2004. Historically, this was the first NIH Consensus Conference on End-of-Life Care. The document produced from this conference provides only a snapshot of the medical knowledge and evidence available up to that 2004 meeting. Palliative care research and clinical practice continue to evolve, requiring one to read the literature on a regular basis to keep current.
Clinical Specialty of Palliative Care
is the broad term used to describe the care provided by an interdisciplinary team consisting of physicians, nurses, social workers, chaplains, and other healthcare professionals. Palliative medicine is a medical specialty practiced by physicians (Derek, Hanks, Cherny, & Calman, 2004
On October 6, 2006, the American Board of Medical Specialties (ABMS) announced the addition of a new subspecialty certificate in Hospice and Palliative Medicine. Historically, this was the first time that 10 ABMS Member Boards collaborated in the offering of certification in one specific area. The first certification examination was offered in October 2008 (ABMS, 2006). This recognition as a subspecialty was the result of the diligent collaboration of the American Academy of Hospice and Palliative Medicine (AAHPM) and the American Board of Hospice and Palliative Medicine (ABHPM). The United States joined members of the international community such as Great Britain, Ireland, Australia, and Canada in formally recognizing palliative medicine as a subspecialty (von Gunten & Lupu, 2004). Palliative medicine is defined as “a sub-speciality that focuses on relieving suffering and improving quality of life for patients with serious illness and their families” (Gelfman & Morrison, 2008, p. 36
The AAHPM is the professional organization for physicians specializing in hospice and palliative medicine. The academy’s purpose is succinctly summarized in the organization’s tagline “Physicians caring for patients with serious illness” (AAHPM, 2011). The AAHPM celebrated its 20th anniversary in 2008 and has grown to nearly 4,000 members, which include physicians and other medical professionals.
Palliative Care Nursing
Palliative care nursing parallels the continuing development of the art and science of palliative care. Individuals and families experiencing life-limiting progressive illness are the focus of the nurse’s evidenced-based physical, emotional, psychosocial, and spiritual or existential care (HPNA & American Nurses Association, 2007
). Coyle (2010)
describes the distinctive features of palliative care nursing as “a whole person” philosophy of care. This care is provided across
the lifespan, in different care settings, and throughout the illness trajectory, the patient’s death, and the family’s bereavement. A nurse’s individual relationship with the patient and family is a critical part of the healing relationship. This healing relationship together with scientific knowledge (effective pain and symptom management) and clinical skills (addressing the emotional, psychosocial, spiritual needs, and cultural values) is the essence of palliative care nursing, setting the specialty apart from other nursing specialty areas (Coyle, 2010, pp. 5-6
). As a philosophy of care and therapeutic approach, palliative care can be practiced by all nurses (Coyle, 2010
Professional Associations Related to Hospice and Palliative Nursing
The Alliance for Excellence in Hospice and Palliative Nursing (AEHPN) includes the National Board for Certification of Hospice and Palliative Nurses (NBCHPN), the HPNA and the HPNF. The mission of the alliance is to “be the unified voice of professional membership, certification, research and education to advance quality palliative care for the benefit of the public at large” (AEHPN, 2011).
The NBCHPN offers four certification examinations: the advanced practice nurse (APN), the registered nurse (RN), licensed practical/vocational nurse (LPN/LVN), and nursing assistant (NA). Role-delineation studies were conducted to support the original certification examinations for each of the respective levels of nursing practice. The role delineation studies are repeated periodically to ensure that the certification examinations match the reality of clinical practice. Hospice and palliative nursing is the only nursing specialty that offers certification at all levels of practice.
The first hospice nursing organization, the Hospice Nurses Association, was formed in 1987 to serve the networking and support needs of nurses caring for terminally patients and their families who were receiving hospice care. In 1998 the name of the organization was changed to the Hospice and Palliative Nurses Association (HPNA) to reflect the needs of nurses working in palliative care settings outside of the realm of hospice agencies. HPNA is now the largest professional nursing organization dedicated to the care of those with life-threatening and terminal illness.
The HPNF was incorporated in 1998 to: 1) support research and education in end-of-life care; and 2) to strive to meet the strategic goals of the HPNA. The foundation believes that evidenced-based practice is the key to quality care for people with life-limiting and terminal illness. HPNF is a source for funding research and supporting education related to hospice and palliative care to both individuals and groups. The 2008 HPNA Research Committee was given the charge to develop a research agenda that could guide nurse researchers in developing programs of research in palliative nursing and the HPNF in funding those programs (D. J. Sutermaster, personal communication, January 30, 2008). The 2009-2011 HPNA Research Agenda is the first such agenda for the organization. It focuses on the symptoms of dyspnea, fatigue, and constipation with the purposes of 1) providing a focus for graduate students, junior, and established researchers; 2) guide HPNA and HPNF research funding; and 3) illustrate to other stakeholders the importance of these research foci (Campbell et al., 2009
). HPNA expects that the research agenda will be revised regularly to reflect needed research to support evidence-based practice in end-of-life care.
Differentiating Hospice Care and Palliative Care
It is critical to differentiate between hospice care and palliative care in the context of clinical practice. The terms hospice and palliative care are frequently used interchangeably. Palliative care is a broader concept and includes the entire continuum of care. Hospice care is always palliative care, but not all palliative care is hospice care.
Hospice is a specific type of palliative care, and in the United States it is generally considered a philosophy or program of care rather than a building of bricks and mortar. Hospice programs provide state-of-the-art palliative care and supportive services to dying persons and their families. This comprehensive care is available 24 hours a day, every day of the year in community-based settings, patients’ homes, and facility-based care settings. A medically directed interdisciplinary team (clients, family members, professionals, and volunteers) provides physical, psychosocial, and spiritual care during the final phase of an illness, the process of imminently dying, and the period of bereavement (NCPQPC, 2009
). In hospice care the dying person and the family are the unit of care. Client and family values direct the care. However, the current Medicare hospice benefit eligibility criteria for hospice services include a terminal diagnosis and a 6-month prognosis. In addition, it requires that clients discontinue curative or life-prolonging treatments to access comprehensive hospice care (Lynn, 2001
). There are three outcomes of hospice care: self-determined life closure; safe and comfortable dying, and effective grieving (National Hospice Organization Standards and Accreditation Committee, 1997
). Humane, holistic, comprehensive plans of care involving an interdisciplinary healthcare team are critical to maintain quality of life for the person and family making the transition to end of life. One of the first definitions of palliative care accepted throughout the world was developed by the World Health Organization (WHO, 1990)
. Subsequent definitions have been developed or refined by the NHPCO, IOM, and other professionals providing palliative care (Table 22-1
). As the number of palliative care programs continues to grow, differentiating between hospice and palliative care is necessary for consumers and healthcare providers.
Although it appears that hospice and palliative care have much in common, there are two major distinctions. First, palliative care permits life-prolonging therapies. Secondly, palliative care is integrated throughout the course of a chronic, progressive, and incurable disease, from diagnosis through death, rather than only during the final 6 months of life. The chronic illness experience of clients and their families demonstrates the need for comprehensive palliative care earlier in the disease trajectory (NCPQPC, 2009
In response to the need for broadening the scope of palliative care, the Clinical Practice Guidelines for Quality Palliative Care
) describe palliative care as appropriate from the time of a life-threatening or debilitating illness through cure or until death as well as into the family’s period of bereavement.
Palliative Care and Chronic Illness
According to Curtin and Lubkin (1995)
, chronic illness is never completely cured, and it involves the “total human environment for supportive care and self-care, maintenance of function and prevention of further disability” (pp. 6-7). Symptoms may increase or decrease during phases of stability, exacerbation, remission, and eventually death (Corbin, 2001
). The Last Acts Palliative Care Task Force developed five palliative care precepts or principles of care (see Table 22-2
). Integration of these precepts into clinical practice enables clinicians to provide a continuum of care otherwise unavailable to clients with advancing illness and their families (Cumming & Okun, 2004
). The meaning of these precepts are integrated into the eight domains of palliative care described in the Clinical Practice Guidelines for Quality Palliative Care
Table 22-1 Definitions of Palliative Care with Distinctions from Hospice Care
World Health Organization (WHO)
The active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for clients and families. It affirms life and regards dying as a normal process. Palliative care neither hastens nor postpones death. It emphasizes relief from spiritual aspects of client care and offers a support system to help the family cope during the client’s illness and in their own bereavement.
National Hospice and Palliative Care Organization (NHPCO)
The treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life. No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the individual, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life. The decision to intervene with active palliative care is based on an ability to meet the stated goals rather than affect the underlying disease. An individual’s needs must continue to be assessed and all treatment options explored and evaluated in the context of the individual’s values and symptoms. The individual’s choices and decisions regarding care are paramount and must be followed.
Institute of Medicine (IOM)
Palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure (Field & Cassel, 1997).
Distinctions Between Hospice and Palliative Care
The Center to Advance Palliative Care (CAPC) developed a website for patients and their families (www.getpalliativecare.org). The website states that: Palliative care is not the same as hospice care. Palliative care may be provided at any time during a person’s illness, even from the time of diagnosis. And, it may be given at the same time as curative treatment. Hospice care always provides palliative care. However, it is focused on terminally ill patients—people who no longer seek treatments to cure them and who are expected to live for about 6 months or less.
Sources: Center to Advance Palliative Care. Resources for patients and families. Retrieved February 1, 2008, from: getpalliativecare.org; Field, M. J., & Cassel, C.K. (Eds.). (1997). Approaching death: Improving care at the end of life. Committee on Care at the End of Life, Division of Health Care Services, Institute of Medicine. Washington, DC: National Academies Press; National Hospice and Palliative Care Organization (NHPCO). Retrieved January 28, 2008, from: www.nhpco.org; World Health Organization. (1990). Cancer pain relief and palliative care. WHO Technical Report Series 804 (p.11). Geneva, Switzerland: Author.
The SUPPORT study (1995) findings identified several problems related to palliative care. Patient suffering included dying in pain with a severe symptom burden. Poor communication among patients, families, and their physicians led to undesired resuscitation efforts and extensive use of hospital resources.
Table 22-2 Precepts of Palliative Care
1. Respecting patient goals, preferences, and choices
2. Providing comprehensive caring
3. Utilizing the strengths of interdisciplinary resources
4. Acknowledging and addressing caregiver concerns
5. Building systems and mechanisms of support
Source: Lomax, K. J., & Scanlon, C. (1997). Precepts of palliative care. Princeton, NJ: The Robert Wood Johnson Foundation.
The IOM study, Approaching Death: Improving Care at the End of Life
(Field & Cassel, 1997
), revealed a critical need for improvement in the education and training of healthcare professionals in palliative and end-of-life care. Healthcare professionals have traditionally received inadequate education and training in the safe and effective management of pain and other symptoms. They also lack the skills and confidence to address the psychological, social, and spiritual aspects of care (Sullivan, Lakoma, & Block, 2003
Nursing curricula and textbooks are deficient in palliative and end-of-life content and clinical learning opportunities. If nurses are not taught that their professional role includes providing quality palliative and end-of-life care, then they cannot practice it (Ferrell, Virani, & Grant, 1999
). In response to these identified needs, resources for teaching palliative care nursing to students and practicing nurses have been and continue to be developed and disseminated. Essential nursing competencies in end-of-life care were proposed and disseminated by the American Association of Colleges of Nursing (AACN, 2004
) in the document, “Peaceful Death.” Matzo and Sherman (2001, 2006, 2010) used the AACN competencies as the framework for their nursing textbook entitled Palliative Care Nursing: Quality Care at the End of Life. The third edition (Matzo & Sherman, 2010
) addresses both the undergraduate and graduate AACN end-of-life nursing competencies. Ferrell and Coyle (2001
) wrote a comprehensive volume—Textbook of Palliative Nursing
—the third edition of which has been renamed as Oxford Textbook of Palliative Nursing
to recognize it as a leading resource in the field of palliative nursing. An indication that the science of palliative care and palliative care nursing continues to grow is that these two text-books are both in their third editions. Recognizing the special needs of older adults, Matzo and Sherman also authored Gerontologic Palliative Care Nursing
(2004). Morrison and Meier, two expert palliative care physicians, authored the textbook, Geriatric Palliative Care
(2003). Experienced clinicians and researchers continue to share their knowledge, skills, and passion for palliative care through diverse publications, websites, conferences, and now social media such as Facebook and Twitter.
Palliative care seeks to treat, reduce, or prevent symptoms of diseases, relieve suffering, and improve the patient and family’s quality of life without affecting a cure. It is not restricted to dying hospice patients (Field & Cassel, 1997
). The principles of palliative care extend to broader populations that could benefit from holistic, comprehensive plans of care involving interdisciplinary healthcare teams from the time of diagnosis and throughout the disease processes and illness trajectory.
According to von Gunten and colleagues (2001), palliative care is interdisciplinary care that focuses on relief of suffering and improving quality of life. This simple definition illustrates the fit between chronic illness and palliative care. Based on the preceding description, it is clear that persons with chronic illness would benefit from palliative care.
PROBLEMS AND BARRIERS RELATED TO PALLIATIVE CARE
Barriers to palliative care exist for numerous reasons. The major underlying resistance to palliative care stems from a medical philosophy that emphasizes cure and prolongation of life over quality of life and relief of suffering (Morrison & Meier, 2004
). Insurance reimbursement also forces consumer choice between cure and comfort care. Regular Medicare reimburses for curative treatment only, leaving the Medicare hospice benefit to cover comfort care (Fisher et al., 2003
Prognostication in chronic, debilitating, and life-threatening illness presents a major challenge for healthcare professionals and is a barrier to ade-quate palliative care (Christakis & Lamont, 2000
). Our current healthcare system forces patients and families to choose between curative treatment and comfort care. However, there is growing recognition that palliative care is needed from diagnosis through the process of dying (Foley, 2001
). To reiterate, palliative care can be defined as: inter-disciplinary care focused on the relief of suffering and improving quality of life; it removes any burden of prognostication and the requirement of a terminal diagnosis (von Gunten & Romer, 1999).
Only gold members can continue reading. Log In