CHAPTER 2. PALLIATIVE AND END-OF-LIFE CARE PERSPECTIVES
Mellar P. Davis and Kim K. Kuebler
CURRENT TRENDS
The April 21, 2005, cover story from USA Today touted that the “U.S. is getting old fast, seniors will out number school-age children in many states by 2030, the Census Bureau says in a report out today. That promises to intensify the political tug-of-war between young and old for scarce resources” (El Nasser, 2005). This article reviewed the recent population predictions by the U.S. Census Bureau that identified which states will have the largest elderly population growth over the next 25 years. “As you reach the end of life the last year or last two years—the use of medical care is very intense” (Cauchi, 2005, p. 3A). Most states are worried about access and utilization of state Medicaid funding as the Baby Boomers age and place more healthcare demands upon limited resources. Another front page article printed in the February 24, 2005 USA Today reported, “Health care tab ready to explode, costs could be 19% of total economy by 2014” (Appleby, 2005). Growth in healthcare spending will outpace economic growth through the next decade. By 2014, the nation’s spending for healthcare will equal $11,045 per person, up from $6,423 per person in 2005 (Appleby, 2005).
Yet another news release from June 15, 2005, reports that older Americans are less willing to sacrifice physician/hospital choice to save costs (Cassil, 2005). Elderly Americans are much less willing than are working-age Americans to limit their choice of physicians and hospitals to save on out-of-pocket medical costs (Cassil, 2005). The U.S. Department of Health and Human Services (DHHS) has projected that, by 2013, the enrollment share of Medicare managed care plans will increase by 30% from the current level of 12% (Cassil, 2005).
These newsworthy reports parallel the issues that will affect the care of patients living with chronic disease over the next several decades. By 2030, for the first time in history the old will outnumber the young; by 2010, the oldest of the Baby Boomers will reach the age of 65. Not only will there be an increase in older people, but also more people will be living longer with chronic disease (DHHS, 2002; Lynn & Adamson, 2003). Currently, the leading causes of death in the United States are cancer, heart disease, stroke, chronic obstructive pulmonary disease, and dementia (DHHS, 2002; Lynn & Adamson, 2003). Chronic diseases are symptomatic, are progressive, and can interfere with the patient’s functional ability and quality of life.
It is here where palliative care can help to support the care of symptomatic patients, improve quality of life, and provide care options that focus on comfort versus cure in a disease that is no longer curable. Palliative care clinicians understand the importance of partnering with traditional care and offering to serve as the conduit between all providers while maintaining patient and family goals of care and providing the coordination, continuity, and cost-effective care that is often lacking in this patient population.
Because the majority of the palliative care programs have been initiated in the oncology setting, this has restricted palliative interventions into the management of chronic debilitating nonmalignant diseases (Kuebler, Lynn, & Von Rohen, 2005). Patients with other diseases such as heart failure and emphysema can also benefit by the knowledge and skills of the palliative care clinician and the comprehensiveness and reliability of palliative care programs (Kuebler et al., 2005). This chapter provides a historical overview of the field of palliative care. It briefly touches on the definitions associated with supportive, palliative, end-of-life, and hospice care. The advanced practice nurse (APN) providing services to the patient and family who are facing a limited prognosis is in an ideal position to apply the philosophy of palliative care to the care of the patient from diagnosis until death and to recognize when to consider supportive services such as hospice care.
DIFFERENTIAL TERMS AND HISTORICAL PERSPECTIVES
Preceding World War II, the specialty of oncology was divided into surgery, immunology, and endocrinology (Seymour, Clark, & Winslow, 2005). The majority of patients, however, often presented with advanced malignancy; the availability of palliative treatments within the traditional care system were rare, and prescribed opioids were limited for fear of hastening death, precipitating addiction, and producing euphoria (Seymour et al., 2005).
During this era, suffering at the end of life was perceived as a test of spiritual and psychological character. There were a few community-based studies during this time, highlighting the degree of suffering in individual patients. Despite patient suffering, the investigators did not recommend a change in policy or an evaluation of or change in practice patterns (Seymour et al., 2005). Some studies recommended that prescribers consider earlier use of opioids but do so with trepidation (Seymour et al., 2005). Peer reviewed papers found in medical publications during this time that documented the physical, mental, and emotional distress associated with dying generated limited, if any, medical interest in the care of the dying patient (Hinton, 1963).
History of Cancer Pain Management
The modern techniques to manage cancer pain were developed in the 1950s and 1960s and primarily focused on a biomedical approach versus the patient-centered holistic approach common today. The biomedical philosophy was based on the belief that there is a linear relationship between pain and the patient’s perception of his or her pain (Seymour et al., 2005). Pain was often viewed as an indicator of disease, and little attention was given to the patient’s complaint of pain and how it interfered with quality of life. Physicians focused on disease management as opposed to the patient’s perception of his or her symptoms (Seymour et al., 2005). Dr. Wall, a pioneer in the field of pain management, cleverly articulated the approach to symptom management during this time as the following: “In the course of this new direction, symptoms were placed on one side as a sign post along a highway which was driven towards the intended destination. Therapy directed at the sign post was denigrated and dismissed as merely symptomatic” (Wall, 1986, p. 1). Therefore, the frequent use of cordotomy, rhizotomy, and myelotomy was preferred and sought as a means of relieving pain, with opioids often held until the very end of life.
BEGINNING WINDS OF CHANGE
In 1958, Cicely Saunders from the United Kingdom and John Bonica from the United States simultaneously participated in separate prospective observational studies of patients living with and dying from advanced disease and their medical management. These investigators identified two common myths held by healthcare providers caring for this patient population regarding the management of cancer-related pain (Meldrum, 2005; Wall, 1997):
▪ Opioids are inevitably addicting.
▪ Opioids should be administered only with long dosing intervals.
Saunders and Bonica, however, regarded pain and suffering as an integral part of the daily responsibilities of the physician and nurses providing patient care. These pain management leaders took the initial and controversial stance that opioids were essential in the successful management of cancer-related pain (Meldrum, 2005; Seymour et al., 2005). Saunders’ first publication in 1958 outlined a philosophy of care that highlighted a holistic, multidimensional, patient-centered approach to pain and symptom management. This philosophy of care continues to provide the framework on which the hospice and palliative care movement is built. This care model includes the following key concepts (Seymour et al., 2005):
▪ The role of the physician should be to accompany the dying patient.
▪ All caregivers involved in the patient’s care should enter into and help to support the patient’s inner resources for his or her comfort.
▪ Physicians and nurses should apply the knowledge and science accumulated from evidence-based research and practice to provide relief and comfort for the dying patient and his or her family.
St. Christopher’s Hospice
Saunders’ initial work began at St. Joseph’s Hospice in London in 1958 and continued for 7 years. During this time, Saunders recorded detailed regimens of oral and regular opioid treatments, developed symptom management protocols when newly developed medications became available, listened and recorded conversations with patients, traveled, lectured, and authored extensively on the importance and value of opioid interventions in the management of cancer-related pain (Saunders, 2001). On one of her many trips to the United States, she became acquainted with Dr. Raymond Houde from Memorial Sloan-Kettering Cancer Institute in New York City. Houde had designed and participated in many clinical crossover trials involving various opioids in the management of cancer-related pain (Meldrum, 2005). Saunders embraced the value of rigorous research designs and positive clinical outcomes associated with research trials that could promote the selection and utilization of opioid medications in the management of patients with cancer pain. She then brought opioid research to St. Joseph’s Hospice and later to St. Christopher’s, both designated as demonstration sites. The positive research findings further confirmed Saunders’ assertions regarding the effective and safe use of routine opioids in the management of cancer-related pain (Meldrum, 2005).
The initial collaborative opioid studies took place between St. Christopher’s Hospice in the United Kingdom and Memorial Sloan-Kettering in the United States. Their combined published papers within the peer reviewed literature became the cornerstone in the foundation to the first World Health Organization (WHO) guidelines on cancer care management in 1982 (Meldrum, 2005).
This new approach to pain management through the utilization of opioids revealed that the methods used for pain control were simple and widely transferable from patient care settings, including the home environment (Saunders, 2001). St. Christopher’s became a preeminent clinically based, multidiscipline educational program. Clinicians often took sabbaticals at St. Christopher’s to become skilled and knowledgeable about the care and management of patients living with and dying from advanced malignancies. Many of the initial clinicians from St. Christopher’s took their newfound skills into the development of the earlier programs such as the Connecticut Hospice, Calvary Hospital, and the Royal Victoria Hospital in Montreal, Canada (Saunders, 2001).
St. Christopher’s Hospice, located in London, opened in 1967 with 54 patients, a 16-bed residential wing for the elderly, child care for the staffs’ children, a chapel for spiritual care, and planned bereavement services. Home care for home-bound patients began in 1969 and soon became the dominant focus of care (Saunders, 2001). As St. Christopher’s became recognized and sought after in the care of ill cancer patients, the inpatient-to-outpatient ratio became 1:10 (Saunders, 2001).
Palliative Medicine
The successful demonstration projects initiated at St. Joseph’s Hospice and St. Christopher’s led to the establishment of palliative medicine as a medical subspecialty in 1987. Practitioners in New Zealand, Australia, and the United Kingdom took the lead in establishing this medical specialty (Saunders, 2001). Palliative medicine today is a direct result of Saunders’ international travels, strong basic and clinical research studies, disseminated data, collaboration among multiple disciplines, and application of the reigning philosophy of “living until you die” (Saunders, 2001).
Saunders’ efforts, however, were not without several pitfalls that occurred along the road of hospice and palliative medicine development. The elitism, perfectionism, and protests from “conventional” care providers delayed and alienated important links to the palliative medicine movement (Saunders, 2001). The initial focus of palliative medicine was predominantly on cancer care, which further led to delays in accepting the challenges associated with other diseases such as human immunodeficient virus/acquired immunodeficiency syndrome (HIV/AIDS), chronic heart failure, chronic obstructive pulmonary disease, and amyotrophic lateral sclerosis. Today, however, these diseases have been integrated into the overview of palliative medicine.
CHALLENGES TO THE FUTURE OF PALLIATIVE MEDICINE
The ongoing reductionism and subspecialization that originates from Western medicine in the twenty-first century will challenge the ability to maintain the “whole person” concept of care. The explosion of HIV/AIDS in developing countries will prompt an urgent need to shorten the gap in basic palliative care between developed and developing countries (Saunders, 2001). There is a need to standardize palliative practices, and the routine utilization of psychometrically valid and reliable symptom assessment and quality of life instruments can help to identify outcomes for patients who receive palliative interventions. Palliative care clinicians could learn from Saunders’ original methods of listening, recording, observing, and measuring specific interventions. Palliative care clinicians should develop the skills and knowledge that are associated with appreciating and understanding the spiritual, social, and psychologic stress that patients experience with a life-limiting disease—and the impact that this has on the family or loved ones.
Current Palliative Care Trends
There is much activity to develop, validate, and promulgate symptom guidelines. This work is often derived from academic centers and transferred to community-based practices. However, these guidelines should be portable, simple, affordable, and effective. Palliative services should be considered as an extension of care to all patients with advanced disease and not reserved for the dying (Davis, Walsh, LeGrand et al., 2002). Palliation should begin prior to the end of life. This concept has been endorsed by the WHO revised definition of palliative care (Sepulveda et al., 2002): whereas palliative care
… is applicable early in the course of disease, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications (WHO, 2002).
Often, the aims that palliative care offer to the patient and family differ from the aims of treatment used in curative care (Widder & Glawisching-Goschnick, 2002). Clinicians, however, should consider integrating palliative interventions into the traditional disease-modifying plan of care. For example, discussions with the patient and his or her family that describe and discuss disease-modifying therapies should also include descriptions of and discussions on the integration of palliative interventions that can be used to improve the patient’s symptom profile and quality of life (Kuebler et al., 2005). Therefore, disease-modifying care (curative care) and palliative care can and should occur simultaneously and routinely. This allows clinicians to modify the course of disease management whenever possible by increasing the intensity of palliative interventions when the patient becomes symptomatic and all medical therapeutics in reversing underlying pathophysiology have been exhausted (Kuebler et al., 2005).
DEFINITION OF TERMS
Palliative care, supportive care, end-of-life, and hospice care are terms that are frequently used interchangeably. Yet, hospice and end-of-life care are distinctly different from the others. While hospice and end-of-life care are always a part of palliative care and/or supportive care, the reverse is not always true (Kuebler et al., 2005). The following discussion identifies the differences and similarities associated with these terms.
Supportive Care
The cure for cancer remains below 50% for all patients who present with cancer, and cancer accounts for more than 25% of all deaths in the United States (Browner & Carducci, 2005). Therefore, the evaluation and successful management of symptoms that accompany malignancy can help to define how well the patient lives with his or her disease (Cherny, Catane, & Kosmidis, 2003). Supportive care and its associated interventions are often used concurrently with traditional disease management to effectively manage the symptoms associated with a diagnosis of cancer or other advanced diseases (Cherny et al., 2003). Supportive care has been defined as optimizing comfort, improving function, maintaining social support, and minimizing the adverse effects of antitumor therapy during active cancer treatments (Cherny et al., 2003).
The National Institute for Clinical Excellence (NICE) guidelines in supportive and palliative care identified and described 13 characteristics associated with supportive care (Box 2-1). The rationale associated with defining these supportive care characteristics includes the following (Thomas & Richardson, 2004) points:
Box 2-1
1. Coordination of care
2. Patient views and values are ascertained during the development of supportive services
3. Face-to-face communication
4. Information that includes options at each pathway of care and free information services (verbal, written, or video) sensitive to culture, education, spiritual, and language needs
5. Psychological supportive services
6. Social supportive services
7. Spiritual supportive services
8. Palliative care services (general)
9. Specialists in palliative care services
10. Rehabilitation services
11. Complementary services
12. Social services for families and caregivers
13. Workforce development for supportive and palliative services
Data from Cherny, N. (2003). European Society of Medical Oncology (ESMO) joins the palliative care community. Palliat Med, 17, 475-476.
▪ There is a wide variation in the quality of care from institution to institution.
▪ Services are not universally available.
▪ The needs of patients often go unrecognized throughout the course of disease.
▪ Supportive services are generally multidisciplinary and there is a lack of interprofessional communication and coordination.
Supportive and palliative care services are by no means components of or exclusive of one another. Both are “highly patient-oriented approaches and dependent on each other like Siamese twins and each are important in the education and clinical practice of optimal comprehensive cancer care” (Senn & Glaus, 2002). Supportive care is perhaps the least well-defined label given to the treatment of symptoms and palliation (Kuebler et al., 2005). The supportive care label in oncology includes therapies that support patients through antineoplastic therapies. Supportive care specialists have made notable strides in the management of treatment related complications, including chemotherapy-induced nausea and vomiting, mucositis, growth, factors for myelosuppression and anemia, and bisphosphonates for bone-related complications (Body, 2003; Desai & Demetri, 2005; Gralla et al., 2005; Senn & Glaus, 2002).
Antibiotic transfusion services and psycho-oncology, although older in existence than “target-specific” supportive therapies, are nonetheless important for good supportive care. Finally, nutrition support provided for those who have lost weight due to lack of calories rather than for cancer cachexia should be considered as part of supportive services (MacDonald, 2003).
Palliative Care in Palliative Medicine
Palliative medicine is the medical subspecialty within internal medicine that combines supportive care with the medical management of disease-modifying therapy (Byock, 2000). Seven skill sets have been identified to successfully provide palliative medicine; they include the following (Davis et al., 2002):
▪ Effective communication
▪ Patient-centered decision making appropriate for the stage of disease and condition of the patient
▪ Management of cancer or nonmalignant disease complications
▪ Symptom control
▪ Psychosocial and spiritual care
▪ Care of the dying (end-of-life care)
▪ Coordination of care and continuity
Palliative care (the practice of palliative medicine) is not a time-confined but rather a goal-oriented and patient-centered care delivery model (Davis et al., 2002). Palliative medicine is preventive in that early interventions prevent and improve poorly managed pain and other symptoms, improve communication patterns between patient and providers, reduce a discontinuous or fragmented care approach, and reduces psychosocial or spiritual suffering that is amplified if left untreated in the dying process (Davis et al., 2002; MacDonald, 2003). Palliative medicine has become a recognized subspecialty with a substantial body of peer-reviewed literature, a growing number of physicians entering the field, ongoing clinical research, and disseminated data (Davis et al., 2002).
The WHO’s first definition of palliative care appeared in 1990, and the modified version of this definition was published in 2000. The 1990 definition emphasizes control of symptoms but identifies the potential for earlier application of the principles of palliative care, whereas the current definition stresses the preeminence of the prevention of suffering achieved through either eliminating the anticipated causes of suffering (e.g., use of bowel hygiene when placing patients on opioid therapies) or treating the cause of distress at onset to prevent or slow progression (e.g., development of delirium, increased pain, or functional loss) (MacDonald, 2005).
The palliative philosophy of care, as embraced by the Last Acts Palliative Care Task Force (2004), The National Hospice and Palliative Care Organization (NHPCO, 2006), WHO (2002) and the Center to Advance Palliative Care (CAPC, 2006), includes the following elements:
▪ Provides relief from pain and other distressing symptoms, reducing the symptom burden
▪ Identifies death as a normal process, neither hastened nor postponed
▪ Recognizes that the dying process is profoundly individualized and occurs within the dynamics of the family
▪ Enhances the quality of life by recognizing and integrating interventions for the physical, psychological, social, and spiritual dimensions of the patient
▪ Utilizes the multidisciplinary team to address the multiple needs of the patient and family; this includes bereavement counseling if needed
▪ Enhances quality of life and may positively influence the course of disease
▪ Applies evidence-based practice to support appropriate interventions that improve patient quality of life
Palliative Care Programs
“For a health care system whose essential motivation is based on curing the sick, the treatment of the chronically ill is not very satisfying … there is a paradox of everyone agreeing on the importance of research and prevention, yet continuing to increase disproportionately the amount spent on treating existing illness,” wrote the Canadian government in a report (Lalonde Report, 2004). The accelerating population of the aging are living longer with advanced (chronic) disease; this has created an impetus in both Canada and the United States in placing most of the health care resources on the treatment of fatal conditions, which in many instances could have been prevented (MacDonald, 2005). The demonstration of palliative care has never come at a more important time. Oncology settings have set the stage for palliative care programs. As more programs develop across the United States, there is an increasing need for standards and competencies that will promote the best care possible. The integration of palliative medicine into comprehensive cancer centers in the United States not only is a requirement for being identified as a center of excellence but has been successfully accomplished (Ahmedzai et al., 2004).
A WHO Demonstration Project, the Harry R. Horvitz Center for Palliative Medicine at the Cleveland Clinic Foundation, is a comprehensive integrated program that includes hospice consultation services, an outpatient clinic, acute care inpatient services, hospice and home care services, and hospice inpatient services (Walsh, 2001). The Cleveland Clinic palliative medicine program assumes primary care management for the patient while undergoing chemotherapy or radiation therapy. The advantages include (1) multiple points of access and day-to-day assessment and management prevent untoward symptoms; (2) expertise for these complex and often highly symptomatic patients; and (3) reduction in the patient’s symptom burden, which improves quality of life and reduces the cost associated with seeking multiple providers (Lagman & Walsh, 2005).
Palliative services should be evaluated by the same standards economically, administratively, and philosophically as any other medical service. The net financial impact of an acute medicine unit can be the same as that of an oncology unit (Davis, Walsh, & Nelson, 2001; Lagman & Walsh, 2005). Other palliative medicine programs aside from the Cleveland Clinic Program include the M. D. Anderson Cancer Center, which was initiated in 1999 and opened an inpatient unit in 2003. Other programs, such as those of Northwestern University, University of Wisconsin, and the National Cancer Institute, among others, are active and integrated into a comprehensive cancer center. These programs are dedicated to (1) hospitalwide service with consultation, (2) physicians trained in palliative medicine, (3) multidisciplinary care, (4) continuity, (5) strong commitment to educating clinicians in palliative medicine, and (6) research and desire to advance the discipline of palliative care (CAPC, 2006; Lagman & Walsh, 2005).
The CAPC (2006) has developed standardized aspects of palliative care that have been endorsed by multiple national organizations, and these standards may be considered in any setting adapting a palliative medicine program.
Similarities and Differences
As a result of the palliative medicine centers of excellence, national professional organizations/associations, and federal and state attention to this needed area of medicine—a new standard of care has been determined that integrates palliative interventions into traditional medicine. This mixed management model combines the benefit of palliative and/or supportive care with traditional (curative) care and is focused on treatments for comfort, individual coping, and maintaining quality of life (Bomba, 2005; Browner & Carducci, 2005; Byock, 2000; Choi & Billings, 2002). This model has been extended to nonmalignant life-limiting disease such as heart failure, pulmonary obstructive disease (COPD), and others (Davis et al., 2005; Hauptman & Havranek, 2005; Pantilat & Steimle, 2004) This new paradigm provides for the continuum to range from aggressive curative care to comfort care, and allows for parallel management from diagnosis to death—supporting coordination, continuity, and cost effectiveness (Browner & Carducci, 2005).
The term palliative medicine, however, should not be used synonymously or confused with end-of-life care. To “broadcast that palliative care is about caring for the dying simply reinforces (that the physician should only refer patients) when they are actively dying” (Woodruff, 2002). End-of-life care is a quantitative term that excludes the purpose of care and fails to recognize the skill sets inherent in good palliative medicine (Davis et al., 2002). End-of-life care is a term that does not adequately describe the patients who have a high case mix index with complex problems requiring the skills for effective palliation. It advertises interest in only the imminently dying and encourages a discontinuous rather than a parallel or mixed care model (Davis et al., 2002).
When patients and their families have exhausted all treatments to reverse the life-limiting disease and all therapies modifying the disease have failed, the patient who has not received palliative care prior to this cross in the road may be highly distressed and symptomatic. Because the patient is close to the end of his or her life, he or she may be referred to an end-of-life care specialist. If Saunders describes optimal palliative services as encouraging patients to “live until they die,” then the term end-of-life services does little to promote this.
HOSPICE AND END-OF-LIFE CARE
Florence Wald, dean at the School of Nursing at Yale University, New Haven, Connecticut, is considered the mother of the American hospice movement. In 1963, she invited Saunders to give a series of lectures throughout the communities of New Haven. These lectures and associated conversations lead to a seminal event and establishment of The Connecticut Hospice in 1974 (Saunders, 1999). Since this time, Wald’s observations have been apropos to the current structure of hospice care. “Hospices grew throughout the nation first as a grass roots healthcare reform effort. Later healthcare and governmental planners became increasingly convinced of the financial as well as the quality of life benefits. Consumers grew to understand that they had the right to influence the quality of their remaining life. Ethical and philosophical values regarding self-determination, family and staff support, dignity, and interdisciplinary team responsibility lead to the change in perception of what patients and families should receive from healthcare providers” (Foster & Corless, 1999, p. 12).
Many of Wald’s beliefs and her advocacy for end-of-life care can be associated with the European Society of Medical Oncologists’ core principles in end-of-life care (2003) (Box 2-2).
Box 2-2
Oxford University Press
1. Respect the dignity of both the patient and caregivers.
2. Be sensitive to and respectful of the patient’s and family’s wishes.
3. Use appropriate measures (therapeutically) that are consistent with the patient’s wishes.
4. Make alleviation of pain and other symptoms a high priority.
5. Recognize that good care of the dying person requires quality medical care but also entails services that are family and community based to address psychological, social, and spiritual as well as religious problems.
6. Offer continuity with the primary physician and/or oncologist if the patient so desires.
7. Advocate access to therapies that are expected to improve the patient’s quality of life and ensure that the patient who chooses alternatives to nontraditional treatments is not abandoned.
8. Provide palliative and hospice services.
9. Respect the patient’s right to refuse treatment (or assigned surrogates may authorize refusal of treatment when the patient cannot participate).
10. Respect the physician’s professional responsibility to discontinue burdensome and ineffective therapies with consideration for both patient and family preference.
11. Promote clinical and evidence-based research in the end-of-life care.
From Cherny, N.I., Catane, R., & Kosmidis, P. (2003). ESMO takes a stand on supportive and palliative care. Ann Oncol, 14, 1336, by permission of Oxford University Press.
In the 1994 Standards of a Hospice Program of Care, the National Hospice and Palliative Care Organization (NHPCO) defined hospice care as a model of palliative care in a defined group of people. “Hospice offers palliative care to all terminally ill people and their families regardless of age, gender, nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary care, or ability to pay” (NHPCO, 1994, pp. 39-74). The prevailing precept of hospice care is that dying is a normal stage in the lives of individuals and families (Last Acts Palliative Care Task Force, 1997).
When the Medicare hospice benefit was adopted by the U.S. Congress in 1982 to support the development of hospice care, an appropriate length of hospice service was thought to be 6 months. However, patients currently enrolled rarely reach a 6-month hospice admission, with the average length of stay now less than 30 days (Byock, 2000). In 1994, the medium length of stay in hospice was 26 days, and in 1998, it was 19 days (Lynn, 2001; NHPCO, 1994). The 6-month survival criteria could be interpreted as “virtually all patients with this condition would be dead” or it would be reasonable to assume that someone in this condition would have less than 6 months to survive (Lynn, 2001).
Failure to optimize length of hospice service is related to attitudes, beliefs, and misperceptions. A few of the barriers that are associated with late referral into hospice care include a public perception that end-of-life and palliative care reflects the care of a loved one who is actively dying and a belief that most patients will enter into hospice care a few days prior to death and often with a loss of function (low Karnofsky Performance Score [40 or lower]), progressive disability, and limited ability to provide self-care, all of which rapidly worsen prior to death (Lynn, 2001). Hospice, a valuable service for the patient and family at the end-of-life, includes:
1. Home care services (which are the most common)
2. Hospice teams within hospitals
3. Hospice units within hospitals
4. Hospices with hospital affiliations
5. Freestanding hospices (autonomous)
Some hospices will have several of these elements within their programs (Abyad, 1994). Independent programs with full home care services are likely to be the most innovative in practice. However, sound home care programs remain the essential element to all hospices (Abyad, 1994). The goal of hospice is to allow patients to die with dignity, comfort, and pain and symptom control within their own home. The structure of the interdisciplinary team within hospice differs compared with that within palliative programs. A registered nurse with advanced training in physical assessment, pain control, and symptom management provides much of the day-to-day care, and the physician is the advisor and supervisor of care. The hospice nurse must be skilled in family care and provide specialized services such as wound care, intravenous medications, and catheter insertions (Perron & Schonwetter, 2001). The social worker is trained in counseling the dying patient and family. Chaplains provide spiritual support and religious services. Volunteers provide a multitude of functions such as sitting with the patient to allow families to have respite time to run errands or providing some domicile help for families. Medicare requires that 5% of patient care be delivered by trained volunteers. For hospice interdisciplinary work to be effective, communication within an interdisciplinary meeting is required (usually once weekly). Family meetings are arranged depending on need. Communication with the attending (nonhospice) physician who has been involved in care is maintained and is particularly important if there are changes in therapeutics (Perron & Schonwetter, 2001).
THE FUTURE OF PALLIATIVE AND END-OF-LIFE CARE
The future and growth of palliative medicine are largely determined by its acceptance within the traditional medical model. Legislative changes may influence the manner in which this is achieved—reimbursement criteria are evaluated based on patient prognosis and/or prognostic indicators. It is safe to say that in this era, health care costs cannot keep rising faster than the gross domestic product (Appleby, 2005). The focus of palliative care on preventing symptoms, coordinating care services, reducing unnecessary diagnostics or expensive therapeutics, and offering ongoing conversations with the patient and his or her family about changes in the disease and shifts in the plan of care can only be considered a valuable service to patient, family, and society.
The APN is in an ideal position to facilitate early conversations with a patient and family and to ensure ongoing and updated advance care planning, especially when the patient experiences an acute exacerbation of the disease, which reduces his or her functional capacities. The APN is able to recognize when along the disease trajectory to initiate and integrate palliative interventions, increase the intensity of interventions, and make referrals for alternate support for the patient and family. The APN who is skilled and knowledgeable about the pathophysiology of disease, the impact of specific symptoms, and their appropriate management can become a vital member of the patient’s health care team and help to support the patient to “live until they die.”
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