CHAPTER 10. HOSPICE

10.01 Hospice; Introduction

10.02 Hospice; History

A. England

B. America

C. Home v. Institutional Hospice Care

10.03 Hospice Philosophy

10.04 Hospice Approach

A. Primary Concern is Symptom Relief

B. Interdisciplinary Team and Plan of Care

C. Autonomy and Patient Communication

D. Working with Family Caregivers

E. Emphasis on Home Care

10.05 Hospice Experience

10.06 Medicare and Hospice

10.07 Hospice Cost

10.08 Problems with Hospice

10.09 Separation of Care

10.01 Hospice; Introduction

It is a sad commentary on American medicine that hospice care of the terminally ill comes to be presented as part of a separate chapter in this book -- as if it were an alternative means of therapy and not a normal subspecialty of traditional medicine. In some areas of the country and with some health care providers, the term "hospice care" may in fact be used synonymously to mean "palliative or comfort care," but in others it still represents more of an alternative to traditional medicine than an accepted component of terminal care.

In retrospect, it is hard to say how this divergence in care came about, but that is unimportant. For the purposes of this book, the important short term goal is making the presence of a less aggressive, more comfort oriented approach to terminal care known to the reader. As for the long term goal, the aim of the book would be to find a way to incorporate the best methods of both hospice and non-hospice palliative care into a single system for the benefit of all patients.

10.02 Hospice; History

A. England

The term "hospice" originated in the middle ages to signify "havens" where weary travelers could find hospitality and care. Although the term may have first been applied to care of the terminally ill in Ireland in the late 1800's, credit for founding the modern hospice movement is generally given to Cicely Saunders, a nurse, social worker, and physician who was instrumental in opening St. Christopher's Hospice, the first modern day, free-standing hospice of our time, in London, England, in 1967. For this service, she was later named Dame of the British Empire by Queen Elizabeth in 1980.

Although originally trained as a nurse in a traditional medical setting focusing primarily on cures and prolongation of life, Saunders believed what mattered most at the end of life was pain control, dignity in dying, and help addressing the psychological and spiritual pain of death itself. As a result, at St. Christopher,s she emphasized the need for effective symptom control, care of the patient and family as a unit, and the development of a multidisciplinary team approach, using volunteers, a continuum of care which included the home setting, and follow-up with family members after the patient's death.

B. America

The first hospice in America, the Connecticut Hospice, was opened with Dr. Sylvia Lack, who had trained at St. Christopher's under Dr. Saunders, as its medical director in 1973 in Branford, Connecticut. Funded in part by the National Cancer Institute, it was originally home-care based, but later expanded to include a free-standing, in-patient facility. It purposely chose not to incorporated with other medical facilities and in many ways held itself out in opposition to established medical care, positioning itself as a direct rebuke to the way pain was managed in conventional settings.

Unlike the original English hospices, American hospices generally developed primarily as home based institutions, thus evolving more as a concept of care rather than a place for care.

As a home based care service, hospice was viewed as a potential cost-saver, leading the government to authorize a national study of hospice care which evaluated more than 1,700 patients undergoing terminal care along with their families. When this study showed that satisfaction with hospice was at least comparable with that of conventional care at lower costs, Congress authorized Medicare to reimburse hospices for the care of terminally ill patients who met specific criteria. As will be discussed below under "Problems," these specific requirements have been a major stumbling block to further expansion of hospice care, two-thirds of which is presently paid for by Medicare.

In spite of its limitations, hospice use has steadily increased. Studies have shown 300,000 patients and their families were served by hospice in 1994 compared with just over 200,000 in 1990. Of these patients, seventy-five to eighty percent have a diagnosis of cancer and the other twenty to twenty-five percent are mostly suffering from AIDS or end-stage kidney, heart and lung failure. The average case load of any single hospice facility is eighty patients and the average length of stay is about forty-two days. There are presently almost 3,000 hospice programs with at least one in every state. 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, which amounts to approximately two-thirds of total receipts, rose from $2 million in 1984 to almost $1.2 billion in 1994, but this still represented less than 1% of total Medicare benefit payments in that year. Because hospice is an optional Medicaid service, hospice comprises only 0.1% of total Medicaid payments.

C. Home v. Institutional Hospice Care

Initially, hospice programs as developed in England emphasized residential facilities using a multi-disciplinary approach in the care of the terminally ill. Today, most hospices are solely or primarily home-care programs with more than 85% of their enrollees being served at home, with few free-standing in-patient facilities, but increasing numbers of in-patient units in nursing homes or hospitals.

10.03 Hospice Philosophy

Hospice philosophy is said to be based on three basic principles, openness of mind, friendship of the heart, and freedom of spirit to listen to patients "as they search for the meaning of their own spirituality." This latter is said to require an affirmation to patients that regardless of their sex, race, lifestyle, religion, or disease, hospice accepts them as human beings and cares about their suffering.

These principles are further said to be based on several concepts:

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.

"The goal of hospice is to promote an alert, dignified, and pain-free life for its patients in a manner respectful of their individual needs."

10.04 Hospice Approach

A. Primary Concern is Symptom Relief

The overriding characteristic of hospice care is addressing the need to relieve suffering and emphasizing quality of life. In hospice care the patient's symptoms, including pain, are aggressively treated to make the patient as comfortable as possible, but efforts to extend the patient's life are usually not pursued. This emphasis tends to stress a low technology environment suitable to the alleviation of patients' fears of an undignified, lonely, technologically dependent death.

Hospice is said to focus on the physical and emotional symptoms of the patient and family rather than on the terminal disease. In addition to controlling symptoms, its intent is to help the patient and family confront the issues which accompany approaching death. An emphasis on "total" pain control, including physical, mental, social, and spiritual aspects, is said to exemplify the concept of total patient care. Pain control as well as the management of other symptoms comprises the primary and ongoing focus of care based on each patient's needs.

As a result of this approach, hospice tends to emphasize the aggressive use of narcotics as needed for pain control even if such treatment requires heavy sedation and secondarily shortens patient survival. Hospice does not advocate cardio-pulmonary resuscitation (CPR) and believes all unwanted medical interventions, including artificial nutrition and hydration, should be removed, although this is not universal -- some hospices accepting artificial sustenance if it would produce a significant time in reasonable comfort for the patient. Hospice also believes anorexia (loss of appetite) should only be treated when it holds promise of significantly improving the quality of life, for it has not been shown to produce clinically significant weight gain, enhanced quality of life, or prolonged survival.

B. Interdisciplinary Team and Plan of Care

A major difference in hospice care is reliance on a written plan of care developed by an interdisciplinary team for each individual as opposed to the attending physician directing the over-all approach to the patient. This team is typically comprised of the patient's attending physician, hospice physicians with palliative care training, nurses with specialized training and experience with pain and symptom management as well as in physical assessment of patient suffering, 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, such as dieticians, pharmacists, nursing assistants and various therapists may also be involved. Part of the work of the team is to help and encourage the patient and family to develop and maintain a patient-directed, individualized plan of care addressing the physical, social, religious, and cultural differences and needs of the patient and family.

This approach is often referred to by hospice as continuing care or supportive care. Its goals are said to be relief from pain and other distressing symptoms, psychological and personal support for the patient and family, and assistance to help the patient maintain his or her daily activities, independence, and dignity. Unlike traditional care, hospice care is intended to emphasize psychosocial and spiritual support and counseling for the patient and family to cope with the various problems presented as the patient's illness progresses. In spite of these stated differences in intent, actual differences in practice from traditional medicine may not be as great as suggested.

One major difference in the hospice approach to care is the reliance on volunteers, usually family members, as part of the caregiving team. Although this reliance frequently serves the patient well, the need for constant availability of the family for hands-on caregiving often puts undue stress on family caregivers which can easily undermine the best intent of the overall system of care.

C. Autonomy and Patient Communication

Hospice supporters tend to promote its stress and support of "autonomy," the right of the individual and family to make medical decisions, the use of advance medical directives, and the refusal of unwanted life prolonging therapy including refusal of artificial nutrition and hydration. They also stress hospice,s stated dedication to the importance of honest and open discussion with the patient and family as a means of facilitating communication. At the same time, in spite of their stated stance in favor of autonomy, hospice supporters have been strongly antagonistic to the acceptance of physician assisted suicide, stressing in particular the fear its legalization would cut off interest in developing better palliative methods of care in this country.

In some ways the antagonism of hospice workers to assisted suicide is reminiscent of the physician,s reluctance to accept the restrictions of non-comfort based care proposed by hospice. To the physician, the acceptance of inevitable death is viewed as a failure of medicine. To the hospice supporter, the patient,s desire for physician assisted suicide is viewed as a failure of palliative medicine to provide adequate relief of pain and suffering.

D. Working with Family Caregivers

As noted above, hospice relies heavily on family caregivers. Family members are instructed on methods to minimize the patient's distress, organize the house, administer medications for pain and nausea, and accompany the patient throughout the peculiarities of the disease. At the same time, hospice also emphasizes the needs of the family for support through such efforts as vacations from the responsibility of patient support (respite care) and the need of the family for bereavement care during and after death.

E. Emphasis on Home Care

Most patients prefer to die at home and away from the high technologic approach of medical institutions. In keeping with this desire and the requirements of Medicare for reimbursement, over 85% of hospice care is given at home. Because of this emphasis and the high level of reliance on family members as caregivers, hospice has developed special expertise in advising families how to set up the home for ease of meeting patient care needs and specific needs of the caregivers as well.

In general, patients are encouraged to stay at home as long as possible, but services can generally also be provided in nursing homes, assisted-care facilities, and some hospitals. In most cases, acute in-hospital care can lead to discharge home, but all too often, it is the absence of family caregivers and hospice,s reliance on continual care by the family which combines to force ongoing institutionalization of the patient until death.

10.05 Hospice Experience

In general, patients experiencing hospice care prefer it to traditional medical care, but this may well be a matter of initial choice -- those who want care limited to palliation at home choosing hospice and therefore preferring its approach, while those patients who want to hold on to the possibility of prolonging life tend to choose more aggressive in-hospital care and not hospice. Either way, it would be fair to say most patients treated in any plan with a strong emphasis on terminal palliation die with comfort and dignity.

In one well-controlled study in which half the patients received hospice care and half traditional medical care, the satisfaction with the two systems was very equivalent, but those receiving traditional care did so at a hospital which may have placed more emphasis on symptom relief than the average facility. Other studies of pain relief have found the best results when hospice care was combined with in-hospital care. Still other studies suggest hospice treated patients may have a better quality of life, but only during their last three days.

10.06 Medicare and Hospice

Acceptance and reimbursement of hospice by Medicare has been a major factor in its growth and acceptance, but the specific requirements have also produced major stumbling blocks in its development. These specific requirements include:

1. Physicians must certify a patient's life expectancy is less than six months;

2. The patient must waive all rights to routine Medicare payments for services which are related to active, non-comfort related treatment of the terminal condition; and

3. Continued care of the patient by the patient,s own personal care physician needs to be coordinated through the hospice care program.

As a result of these requirements, many patients do not receive hospice care because of the difficulty physicians have in predicting when a patient has less than six months to live and the fear that if it is instituted too early, the patient will end up being denied Medicare coverage for health care required for specialized end-of-life care. In addition, the need for physicians to work only through the hospice coordinators and the need to tell patient,s they will have to give up all active care aimed at curing the disease are both difficult steps for physicians to recommend, especially as they see doing so as taking away the patient,s last rays of hope.

Under Medicare financing, hospices receive a set fee per day for home services and must provide the basic outline of the services required in federal and state guidelines. Within the daily reimbursement, hospice programs are to provide all home-support services, medications, case-management, and bereavement services to the family. The daily rate must also cover all intensive treatments related to the primary diagnosis including radiation therapy, chemotherapy, infusion therapies and others. Separate rates are available for continuous care and inpatient-care days, but still under a single payment per day, which has been set quite low in general to encourage home care. Payment to attending physicians remains outside the rate.

10.07 Hospice Cost

Although hospice care remains costly, approximately $100 per day at home, it is clearly less expensive than other approaches to terminal care. In one study the cost of hospice care proved lower than conventional care by over $4000 per enrolled patient for home-care hospice than for traditional home health care, and $1300 lower for hospital-based hospices. Most of the cost savings were associated with the last month of life, when conventional care costs accelerated more rapidly than those of hospice care.

10.08 Problems with Hospice

Many of the problems commonly associated with hospice care have already been mentioned -- the difficulty of determining that life expectancy is less than six months, the feeling of hopelessness which may result when the patient is told no further cure is possible, the likelihood of failure when attempting to integrate previous attending physicians into the patient,s care during the terminal stages, and the need for the patient to give up Medicare coverage for certain types of medical care in order to receive hospice care. But there are many more.

First, a problem which could easily be rectified is the ambiguity as to how Medicare handles situations in which patients outlive the anticipated six months of need. Individual experiences note continued payment for additional six-month periods extending as long as three years, but the lack of accepted procedure to obtain such extensions leaves physicians reluctant to refer patients early out of fear that coverage will not be available later in their course of illness if the patient survives longer than expected.

Second, hospice care as presently constituted requires the availability of voluntary home caregivers preventing its use for people who do not have family members or other unpaid, supportive persons available around the clock in the home. Alternative payment schemes could be devised to cover these situations.

Third, the artificial separation of hospice care from traditional medicine, whatever its origin, undermines the fact that palliative care methods should be employed in traditional medical care settings along with standard therapy aimed at cure and/or prolongation of meaningful life.

Fourth, and conversely, hospice care should recognize that modern technology has a lot to offer the terminally ill patient in the way of symptom relief. At times, as with AIDS, it may also hold the promise of reversing what appears to be a terminal situation, making a trial of experimental drugs appropriate even in a hospice environment.

Fifth, hospice care requires a stable home setting in which it is safe to bring narcotics.

Sixth, insurance coverage for hospice care is spotty and often follows the requirements of Medicare, thus eliminating the same potential patients less than 65 years of age from coverage.

Finally, hospice services currently do not cover patients with Alzheimer disease and their families who could benefit from its insights and support. Although predicting life expectancy with Alzheimer patients may be extremely difficult, those who have reached the advanced stages of the illness should be considered in a terminal condition similar to incurable cancer. A hospice treatment option which emphasized maintenance of patient comfort instead of preventing death at all costs should be available to such patients.

Many of these problems are nicely summarized by Joanne Lynn, M.D. in a 1995 article in the Journal of the American Geriatric Society as follows:

In public and professional media alike, an odd misstatement of the mission of medicine in caring for dying persons has become commonplace. We are said to turn from cure toward care, or to move from aggressive, life-sustaining care to palliative care. There are imagined to be two kinds of persons: ordinary persons who when sick are best served by aggressive care and dying persons who are best served by symptom management. This image profoundly disserves us. All persons, even ordinary sick persons, do not want to suffer unnecessarily and would prefer symptom management at all times, unless tolerating a symptom provides a much improved outcome. Furthermore, persons expected to die soon are not often eager to die and would prefer life-sustaining treatment, provided that the life to be led thereby is reasonably comfortable and meaningful. In sum, what we want when close to death is not different from what we want from medical care in all circumstances: to have the care that enables the best possible life, given the limitations of the circumstances, as evaluated from the patient's perspective. We want, at all times in our lives, the mix of curative, preventive, rehabilitative, and palliative care that enhances our lives.

10.09 Separation of Care

In spite of the fact that hospice and traditional medical care learn from and accept each other to a degree, they tend to remain separate, somewhat competitive elements in the health care system. As a result, only one-third to one-half of patients with cancer and AIDS receive hospice care, mostly in the last one to two months of life. For other terminal illnesses, hospice care is even less common, with only an approximate 17% to 20% receiving any level of hospice care. This percentage may have increased under a new federal law which went into effect in 1995 requiring hospital discharge planners to inform all terminally ill patients about hospice services, but statistics are not readily available as yet to show any change. It may also increase in the future as cost-conscious managers press to decrease the percentage of patients dying in hospitals and nursing homes, which presently stands around 62% and 17% respectively.

Although both traditional and hospice care providers should clearly learn from each other, whether the two can, or should be combined is more problematic. To integrate the two would require overcoming numerous problems, many of which would be difficult to compromise.

First, whereas traditional medicine assumes cure is the primary goal, hospice assumes palliation is primary. Undoubtedly, over the course of most terminal illnesses, there are long periods of time when these two approaches can reasonably co-exist, but there are times when they cannot. As long as hospice remains resistant to maintaining therapies aimed at cures and traditional medicine refuses to give up even a negligible chance of cure or remission in favor of better palliation, the two must inevitably come into conflict. [Note that many hospitals are initiating programs in palliative care either with or without associated hospice participation.]

Second, the hospice approach is more sympathetic to subjective phenomena than the curative model. For example, hospice is much more concerned with the treatment of pain despite the fact it cannot be verified and at times cannot even be explained. Treating pain without such an explanation would be difficult for traditional medicine to accept, especially if more specific therapies would be available once a more exact diagnosis is made.

Third, hospice care is more tolerant of incomplete medical knowledge and accepting of medicine,s limitations than is traditional medicine. Diagnosis is not a goal in itself. Rather, it is pursued only if doing so conforms to patient-determined goals of palliative medical care. Similarly, a specific treatment is regarded as appropriate only if it is worthwhile from the patient,s immediate wish to avoid pain and suffering, in contrast to traditional medicine,s more long term approach.

Fourth, hospice does not equate death with defeat. To the contrary, it accepts death as the natural conclusion of life, while traditional medicine looks closely at deaths and tries to figure out how they can be avoided in the future.

Fifth, hospice care takes an approach which tries to tailor a plan specifically to each patient according to the patient,s personal values and preferences. This approach contrasts with the curative model, in which the appropriate treatment is considered a scientific question best decided with longevity and cure in mind.

Sixth, traditional medicine stresses a need for continued hope in the dying process, while hospice care stresses acceptance of death. In fact, this process tends to set up a circular effect. In holding out hope, traditional medicine tends to give optimistic assessments of prognosis, which tends to lead patients to accept more aggressive therapy not acceptable to the hospice approach.

Seventh, because hospice care relies heavily on its own doctors, nurses, aides, facilities, reimbursement plans, etc., its initiation tends to undermine continuity of care and carries the potential of producing a major psychological stress at a most inopportune time in the dying process -- when the inevitability of death is newly established and must learn to be accepted by all.

Eighth, the unwarranted association of hospice care with the concept of "holistic medicine" identifies it with other modalities of limited appeal to traditional medicine.

Ninth, hospice has frequently appeared to take a stand negative to technologic advances, while traditional medicine stresses the development of new technologies which it views as being beneficial in controlling pain and suffering.

Tenth, hospice tends to believe its primary appeal is to patients who want to escape from the traditional medical system, which it proclaims undervalues the importance of palliative care. This is reflected in many physicians, belief that hospice,s role begins when traditional medical care has nothing more to offer, and with the belief among many hospice workers that physicians look to hospice as a dumping ground when they are no longer interested in caring for the patient.

Eleventh, traditional care physicians have little knowledge of the workings of hospice. It has been estimated only 17% of medical training programs use hospice rotations, and only half of these are required. In addition, only 9% of the programs have a resident or fellow serving as a member of a hospice team.

The following excerpt by P. Wilkes, taken from a July 8, 1997 New York Times Magazine article entitled "Dying Well Is the Best Revenge," suggests some of the antagonism medicine holds for hospice and the need for better communication and greater mutual respect for each other,s goals in therapy:

[Note: I include this excerpt not for its correctness, but to serve as evidence of the type of antagonism which exists.]

"The passion of hospice people is admirable, but their arrogance is irritating," Murphy [a traditional physician] said as we talked in her office at the end of one of her typically busy days. She had been Mike,s regular doctor for many years. "They view themselves as the champions on white horses riding in to save the day. The hospice approach often is too rigid, expecting -- even demanding -- that death be this fantastic event when all relationships are mended and life is neatly wrapped up. It,s as if they know it all and we ordinary practitioners know nothing about this patient we,ve been seeing for years. I,ve heard families complain that hospice simply took over, forced themselves in and began directing how their loved one ought to die. Let,s face it, the majority of deaths are painful, difficult, unfortunate, inglorious, and you have to accept this.

As a result of these conflicts, the benefits of hospice, when available and requested, are usually limited to a few weeks of life, perhaps two to eight. In many ways this reflects the natural history of cancer. Except for periods of medical treatment, cancer usually allows long periods of functional stability or slow decline, followed by dramatic losses over a relatively short period before death. It is usually only this "failing" phase which triggers consideration of enrollment in a hospice program. For many, this may in fact be most appropriate, but for others, treatment based on hospice principles becomes appropriate much earlier in the course of the disease.

 


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

 

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