Vladimir Panfilov (Russian, 1912-), Ice Skates, 1957. Oil on canvas, 70x100 cm.

Overview of Hospice and Palliative Care in Oncology

Ronald S. Schonwetter, MD

Introduction

During the early stages of oncologic disease, treatment is generally aggressive with a goal of cure or remission and is delivered to the patient in an optimistic manner. However, when traditional medical therapies no longer offer benefit to the patient or when the benefits offered are outweighed by accompanying burdens, the goals of treatment change and the patient and/or physician will reject further aggressive therapy.

One of the most difficult times in the care of a cancer patient occurs during this transition from traditional curative treatment to palliative/supportive care.[1] When cure is no longer possible and when disease burden causes undue patient suffering, a peaceful and comfortable terminal period and death may be recognized as valid goals of modern health care.

The World Health Organization (WHO) defines palliative care as the active total care of patients whose disease is not responsive to curative treatment.[2] It is compassionate care directed at improving the quality of life for people with life-limiting illnesses and provides support for patients and families as they incur multiple losses. The term "palliative care," which originally applied only to those with a terminal illness, now includes the care of those who have a life-limiting disease but are not imminently dying. Philosophically, the relief of suffering is the dominant objective of both palliative care and hospice care. Although general hospice and palliative care approaches are similar and may be provided along the continuum of care for cancer patients, hospice care is generally reserved for the latter segment of the continuum.

Hospice care in the United States has grown from an alternative health care movement to an established component of the American health care arena.[3] It is designed to support the physical, psychosocial, and spiritual needs of patients near the end of life. The recent societal emphasis on the quality of life of patients with advanced cancer has had a significant bearing on the care of these patients[4] and likely has fostered the general acceptance of hospice and palliative care. Quality of life is an important component of cancer care, and many oncology studies now incorporate such measures.

The term "hospice care," more commonly used in the United States and particularly for those near the end of life, is generally used in this paper rather than "palliative care," although the two may be interchangeable at times. Reference to palliative care is typically reserved for those not near the end of life.

Treatment Categories for Cancer Patients

Cancer treatments in the past have been defined as active or palliative - a dichotomy to assign patients into one of these two categories. A more detailed classification system assigns patients into one of four categories according to therapy: traditional (curative), palliative/active, palliative/symptomatic, and supportive.[1] The possibility of overlap among these groups exists, and distinctions may not be exact. Classifying groups by psychologic attitude and goals of the patient as well as by the malignancy may lead to more appropriate treatment decisions. Hospice services would typically be appropriate for patients in the latter two categories. The division of patients into these categories emphasizes the use of palliative approaches in patients with cancer.

Epidemiology of Death and Dying in Cancer Patients

An estimated 550,000 deaths occurred due to cancer in the United States in 1995,[5] averaging approximately one death every minute. This figure has increased by 19% in the last 10 years and reflects not only limitations in curing some malignancies, but also the rise in cancer incidence among the elderly. The distribution of the US population has shifted in both the number and proportion of the population aged 65 years and over.[6] This age group is expected to double in 50 years as it grows from 25.5 million (11.3%) in 1980 to a projected 64.3 million (21.1%) in 2030.[7] The population rise has been greatest for the oldest old (85 years of age and over), with an increase from just over .5 million in 1950 to 2.2 million in 1980.[8] The number of oldest old will continue to grow to 8.8 million in 2030 and to 16.1 million in 2050. This accelerated growth has focused attention on this group and its unique needs. The elderly are at risk for chronic illness, they tend to be more functionally dependent, and they have greater needs for medical, social, and support services.

More than 60% of cancer deaths occurs in the population over age 65 years (approximately 12%).[9] Current estimates suggest that over 6 million people in the United States over age 65 will have cancer in the year 2030.[10] In addition, many cancers are discovered at more advanced stages in the elderly. Currently, one third of patients with cancer die using hospice services. As the population continues to age, an increasing number of older patients with cancer will eventually succumb to the disease.

In 1990, approximately 62% of all deaths occurred in hospitals, 16% in nursing homes, and 17% at home.[11] However, a small but increasing number of deaths has shifted out of acute care institutions and into the home setting. As a result of the increased costs associated with caring for the terminally ill, patients have been discharged from the hospital to other settings (eg, home, nursing home) often sicker and closer to death.[12] The site of death is influenced by several factors including social- and disease-related considerations.[11] Age, marital status, cause of death, availability of support services, and acceptance of the disease process have all been shown to influence the place of death. As the number of those with malignancies increase, the number of those dying at home also will likely rise. In the United States, treatment of terminally ill patients and their associated physical and psychosocial problems needs to be accessible outside of acute care settings, which will present an increasing challenge for our health care system in the future.

Common Symptoms and Psychosocial Issues in Advanced Cancer

While healthcare professionals have an intuitive awareness of the frequency of significant symptomatology among patients with advanced cancer, there has been little systematic evaluation of these problems.[4] One reason is the attitude that such symptoms are inevitable given not only the severity of the disease process, but also the difficulty in separating symptoms due to the high morbidity associated with chemotherapy and radiation therapy from those directly due to the disease process. In addition, efforts at symptom control may imply defeatism in the aim of trying to cure the disease. Thus, aside from treatment-related morbidity, symptom assessment has received little attention. However, systematic assessment of symptom profiles recently has become available. A prospective study that evaluated symptoms in 1,000 patients with advanced cancer at referral to hospice reported an average of 11 symptoms per patient (range 1-27), indicating that advanced cancer patients are polysymptomatic.[13] The 10 most frequent symptoms were pain (82%), easy fatigue (67%), weakness (64%), anorexia (64%), weight loss of more than 10% (60%), lack of energy (59%), dry mouth (55%), constipation (51%), dyspnea (51%), and early satiety (50%). Although symptoms are more common in the terminal stages of cancer, they also are common throughout the illness and may even be evident from the time of diagnosis.

Cancer patients also tend to have multiple nonphysical problems[4] that typically arise from (1) the psychologic distress caused by the terminal illness, (2) the disruption of personal, social, and work relationships, and (3) the increased reliance on family members and friends for physical care. The number and intensity of psychosocial problems increase as cancer progresses. Anxiety, depression, and anger are common problems that reflect multiple physical symptoms from the psychologic perspective. Complex interactions exist between the physical and psychologic sources of distress. The physical and psychosocial disabilities that accompany terminal illness, especially in the older patient, result in additional burdens for the health care system.

Thus, physical and psychosocial symptoms escalate as oncologic disease progresses. The need for hospice and palliative care services will increase as the population ages and as cancer incidence increases in this older population. Health care professionals need to provide services for these patients as multiple unique problems arise near the end of life.

Development of Hospice

The modern hospice movement began in 1967 when Cicely Saunders opened St. Christopher's Hospice in London. Saunders emphasized the need for effective symptom control, care of the patient and family as a unit, a multidisciplinary team approach, the use of volunteers, a continuum of care that included the home setting, and follow-up with family members after the patient's death. The hospice movement has shown that cancer symptoms, especially pain, can be controlled in the home setting without distressing side effects and that open communication and discussion about terminal illness benefits the patient, family, and caregivers.

While economic changes have influenced the site of death of cancer patients, cultural changes have influenced society's acceptance of death. "Death awareness" developed in the early 1960s and continued into the 1970s. Pioneering work on the hospice concept and palliative care for terminally ill patients occurred while Elisabeth Kubler-Ross was developing her theories on death and dying. This came at a time when death was impersonal and occurred in sterile institutional settings where modern, highly technologic, life-sustaining measures were the primary focus of medicine and health care and when the individual needs of the patient were not considered. The credibility of the hospice concept has grown since then.

In 1974, the National Cancer Institute funded the Connecticut Hospice in New Haven, the first hospice in the United States to develop a national demonstration center for home care for the terminally ill and their families. Subsequent US hospices were funded through grants and private donations and relied heavily on lay and professional volunteers.[3] A major impetus for growth of the hospice movement in the United States was largely rooted in the perception by nurses and families that traditional medical care failed to serve the needs of the dying patient.[14] Hospice developed as a concept of care rather than a place for care. From the beginning, however, the focus has been on care in the patient's own home.

The National Hospice Study was initiated by the Health Care Financing Administration and evaluated more than 1,700 patients and their families in home care hospice, hospital-based hospice, and conventional care.[15] The results of this study and others[16-18] were mixed in terms of cost effectiveness and quality of care, with lower costs in home hospice care but greater stress on family caregivers. Nonetheless, Congress passed the Tax Equity and Fiscal Responsibility Act of 1982, which authorized Medicare to reimburse hospices for the care of terminally ill patients who met specific criteria. A major rationale for hospice reimbursement by Medicare and other insurance programs is that hospice care replaces hospital inpatient care and is theoretically less expensive. In general, satisfaction with hospice care is at least comparable with that of conventional care, and costs appear lower.[19]

A survey conducted by the National Hospice Organization indicated that over 300,000 patients and their families were served by hospice in 1994 compared with just over 200,000 in 1990 (written communication, National Hospice Organization, Arlington, Va, June, 1995). US hospices currently number almost 2,300 and are present in all 50 states. Approximately half of these programs are independent community programs, approximately one quarter are hospital-based, and most of the remainder are affiliated with home-health agencies or nursing homes. Medicare expenditures for hospice coverage have risen from $2 million in 1984 to almost $1.2 billion in 1994, which represents less than 1% of total Medicare benefit payments in that year.[20] The increase in hospice care has developed despite stipulations in the Medicare hospice program that reduce potential referrals.[21] Hospice Medicare certification requires hospice compliance with multiple regulations; a physician must certify a patient's life expectancy is less than six months, and the patient must waive all rights to routine Medicare payments for services that are related to treatment of the terminal condition.

Hospice services represent a relatively small part of total Medicaid payments. Because hospice is an optional Medicaid service that is currently offered in 38 states, hospice comprises only 0.1% of the total Medicaid payments.[20]

Philosophy of Hospice

The modern hospice movement focuses on the physical and emotional symptoms of the patient and family rather than on the terminal disease. In addition to controlling symptoms, hospice helps the patient and family confront the issues that accompany approaching death. An emphasis on "total" pain control, including physical, mental, social, and spiritual aspects, exemplifies the concept of total patient care. Pain control as well as the management of other symptoms (eg, shortness of breath, anorexia, gastrointestinal disturbances, chronic fatigue, weakness, anxiety, and depression) comprise the primary and ongoing focus of care based on each patient's needs.

While hospice serves all patients with terminal illnesses, approximately 75% of hospice patients have cancer.[20] Hospice care can be appropriate for any patient with a terminal illness that is likely to lead to death within approximately six months. The patient should eschew futile treatment or additional treatment aimed at curing the disease, but radiotherapy, chemotherapy, and surgery can have a place in palliative or hospice care if the symptomatic benefits of treatment outweigh the risks and if the goal of the particular therapy is symptom relief.

Similar to palliative care principles and supported by the WHO, the philosophy of hospice care for the terminally ill is based on several concepts[22]:

1. Death is a natural part of the life cycle. When death is inevitable, hospice will not seek to hasten or postpone it.
2. Pain relief and symptom control are clinical goals.
3. Psychologic and spiritual pain are as significant as physical pain, and addressing all three requires the skills and approach of an interdisciplinary team.
4. Patients, their families, and loved ones are the unit of care.
5. Bereavement care is critical to supporting surviving family members and friends.
6. Care is provided regardless of ability to pay.
   

A primary goal of hospice and palliative care is to promote an alert, dignified, and pain-free life for its patients in a manner that is respectful of their individual needs. Hospices have been instrumental in developing new methods of pain control and management. The successful techniques employed by hospice have influenced the care of terminally ill individuals in conventional care settings.

Effective treatment of the patient's physical symptoms as well as the emotional and spiritual needs of the patient and family requires the diverse skills of physicians, nurses, social workers, aides, counselors, clergy, and specially trained volunteers. This multidisciplinary team works with the patient and family to develop a plan to guide the patient through a comprehensive case-management approach to care. Hospice strongly emphasizes this coordinated approach to care as a means to enhance the combined skills and sensitivities of caregivers. The frequency of visits to the home setting is determined by the needs of the patient and family or caregivers. Patients and families often require intensive psychosocial and spiritual support and counseling to cope with the significant challenges that are presented as the patient's illness progresses. The needs of patients with terminal diseases and their families are greater than those that can be addressed effectively in the physician's office or outpatient centers or by the current home health care system.[23]

The following caregivers constitute the core team: the patient's attending physician; hospice physicians with palliative care training; nurses with experience in pain and symptom management as well as physical assessment; social workers with clinical experience appropriate to the counseling and casework needs of the terminally ill; spiritual counselors with education and experience in pastoral counseling; a volunteer coordinator with skills in organization and communication; and trained volunteers. Additional professionals (eg, allied therapists, art and music therapists, dieticians, pharmacists, and nursing assistants) may join the multidisciplinary team as needed. Each member of the hospice multidisciplinary team recognizes and accepts a fiduciary relationship with the patient and family while maintaining professional boundaries with the patient and family. The team also collaborates on an ongoing basis with the patient's attending physician to develop and maintain a patient-directed, individualized plan of care. This plan of care addresses the physical, social, religious, and cultural differences and needs of the patient and family.

Hospice care also helps family members care for the patient. Hospice emphasizes the need to empower families and considers bereavement care to be a critical component of supporting surviving family members and friends. Bereavement services continue throughout the bereavement period for at least one year to help the family cope with death-related grief and loss. Survivors with potential pathologic grief reactions may be referred to appropriate counseling services.

Facilitation of communication is an important component of hospice care.[24] Patients deserve clear information about their condition and the treatment choices available to them, and hospice strives to improve the level and quality of communication among the patient, family, and health care providers. Ideally, decisions affecting patient care are made on the basis of adequate information and reflection. Participation by patients in decisions affecting their care is encouraged, and wishes of patients and their families are respected. Hospice also encourages the development of reasonable goals for relief of pain and other symptoms.

Hospice care can be provided in coordinated programs of care across a variety of appropriate inpatient and outpatient settings. The preferred primary setting for hospice care is the patient's home, and hospice patients are encouraged to remain at home as long as possible. Services also can be provided for patients in nursing homes and assisted-care facilities. The integration of institutional and noninstitutional care derives from the belief that conventional care, when provided after curative interventions are no longer beneficial, isolates the dying patients from friends and family at the time when they are most needed.

Most hospice patients choose to receive their hospice care in the home setting throughout their illness. Hospice attempts to maximize the patient's independence and to deliver services at the convenience of the patient and family. The patient's environment is adapted to the patient's physical needs, and gaps in the patient's caregiving network are bridged as necessary. Continuous care in the home setting may call for brief periods of skilled nursing when the patient's symptoms require more attention than can be managed by routine hospice services, and admission to a hospital or a hospice inpatient facility may be necessary (usually for crisis intervention) when symptoms are not controlled at home or when the caregiver is no longer able to provide the needed care. In addition, respite is available for the caregiver by transferring the patient to a nursing home for a period of up to five days.

Medicare and Medicaid guidelines require hospices to provide medications and medical equipment that are related to the patient's terminal diagnosis. Some hospices employ pharmacists and provide medications through their own pharmacies. The pharmacist can act as a reference source for clinicians in areas of pain and symptom management.

Limitations of Hospice and Palliative Care

Research in the hospice/palliative care setting is limited. Few studies use multiple settings and standardized measures. Recognized limitations of care include discomfort on the part of the health professionals in caring for terminally ill patient and difficulty in predicting accurate prognoses in cancer patients and knowing when hospice/palliative care is appropriate.

Management by their physicians is a source of distress for many patients who are near the end of life.[25] Many physicians find it difficult to deal with patient death and the dying process, and some may perceive the process as one of giving care rather than prescribing cure, which they may view as a function of others. When curative goals are no longer appropriate, physicians may feel they have few skills to offer and may distance themselves from patients. Physicians may continue to feel uncomfortable with dying patients until their training prepares them for the reality that not all disease can be cured by intervention.

Terminal illness is difficult to define and diagnose.[3] Yet, for reimbursement eligibility, physicians are required by Medicare regulations to certify that the patient's estimated prognosis is less than six months (should the disease take its usual course). Although the course of most advanced malignancies may be more predictable than that of other noncancer illnesses, errors in prognosis are common, usually in overestimating life expectancy. This regulation may explain why a large number of patients are referred to hospices in the final hours or days of life, when hospice care is unlikely to significantly benefit the patient and family.

Most studies that have assessed prognosis in hospice cancer patients have shown the importance of measuring functional status and nutritional levels, as well as establishing stage of disease, tissue type, and specific clinical symptoms in predicting prognosis.[26-28] Other attempts have been made to identify characteristics of patients who are in a terminal phase of cancer to assist clinicians in deciding how to best manage these patients.[27] They may be poorer candidates for tumor-directed treatment. Redefining therapeutic goals, weighing the benefits and burdens of various interventions, and increasing focus on the treatment of symptoms should be explored by these patients, their families, and the medical professionals who care for them when considering hospice or palliative care.

Some contend that hospice/palliative care has been provided for a minority of patients and has not been available in the hospital, where dying patients are commonly treated.[29] It is likely that hospice has improved the standards of care for the terminally ill, but there is a need for empirical investigation of the relationship between standards of care in hospice and in practice elsewhere. Findings of studies limited to hospice settings may not apply to other terminal care settings. Nonetheless, studies have shown that pain and symptom management is far from ideal for many patients near the end of life.[30,31]

Hospice and Palliative Care in the 1990s

Generally, cancer programs in the United States have focused on anticancer and curative treatments. The WHO estimates that anticancer treatments and curative therapies in developed countries account for approximately 80% of the allocation of cancer resources, and cancer pain relief and palliative care constitute approximately 20% of cancer expenditures.[2] The WHO also has argued that curative and palliative care are not mutually exclusive. In addition, because no curative treatment exists for many cancer patients, the WHO proposed that cancer resources be reallocated. Typically, palliative resources have been limited to the last weeks to months of life. The WHO proposed that palliative care should be a gradually increasing component of care from diagnosis until death (Figure).[32] This recommendation of change in resource allocation parallels the importance of symptom management and whole patient cancer care along the entire continuum of care for oncology patients.

Conclusions

Palliative care is an exercise in forward planning and prevention rather than a model of crisis intervention. Some have suggested that palliative care represents the fourth phase of a comprehensive cancer prevention program.[33] The four phases of cancer prevention include prevention of disease (public education), prevention of advanced disease (early detection), prevention of death (anticancer treatment), and prevention of suffering (palliative care).[34] In addition, palliative care should be integrated with other elements of cancer control, thus ensuring comprehensive care for all cancer patients.

The hospice/palliative concept of care is the best method to manage the majority of terminally ill oncology patients. Hospice/palliative care is appropriate when cure is no longer possible and allows the patient to live the remainder of life as free from pain and other symptoms as possible. It offers comfort for not only the patient, but also the members of the family so that when death comes, it can be painless, peaceful, and dignified. Hospice and palliative care principles and segments of its practice should be used throughout the entire disease course for the patient with cancer.

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