Hospice and Palliative Care
Charles F. von Gunten, M.D., Ph.D. and Jeanne Martinez, R.N., M.P.H.
It is the purpose of this
chapter to define the role of palliative care in geriatrics and
to summarize palliative care and hospice services that are available..
PALLIATIVE CARE
Since the time of Hippocrates
there have been two overall goals of medical care:
The relative emphasis on cure versus relief of suffering relates to both the underlying medical condition and the overall goals of the person who has the illness.
Palliative Care is the term coined to denote the interdisciplinary care of patients where the relief of suffering and the improvement of quality of life is paramount. Quality-of-life rather than quantity-of-life is the chief aim of those engaged in the delivery of palliative care . Because suffering is experienced by persons, its existence, character and criteria for relief is defined by the patient rather than by the physician. Because persons do not exist in isolation, the relief of suffering requires attention to the care of patients and their families. Suffering is caused by many factors that are rarely limited to the physical domain. In providing whole person care to relieve suffering, palliative care addresses all domains of the human experience of illness that may be involved: physical, psychological, social and spiritual . Tending to the relief of suffering in these domains cannot possibly be accomplished by a single medical discipline—a team approach is required. Therefore, palliative care may be defined in the following way.
Palliative Care: the interdisciplinary care of patients focussing on the relief of suffering and the improvement of quality of life.
Conceptual Framework
The concepts that undergird the field of Palliative Care have only been articulated in the past century and have arisen in reaction to the single-minded application of the scientific method in medicine. The relief of suffering as a goal of medical care was subjugated or lost in many settings in the quest to achieve cure and/or prolongation of life.) In this model, the patient dies in spite of aggressive attempts to cure and prolong life.
In recognition of the situation when the disease is progressive and treatment modalities are no longer effective, "comfort care" measures may be instituted. This last period, if it occurs at all, may often be of short duration (sometimes hours to days). Furthermore, this medical care model does not include explicit consideration of non-physical aspects of a person’s illness experience or that of the person’s family. This model of medical care leads to several important sources of societal dissatisfaction with the medical field—physicians "over-treat", physicians "don’t give patients enough information about their condition and what to expect", and physicians are "merely scientists who are uninterested in the lives of the patients they treat". Further, once "comfort care" has been recommended, there is an accurate perception that the physicians are often no longer engaged in the care of the patient. Physicians, in their defense, will say that their job is to treat the disease. When they can’t treat the disease anymore, there is nothing for them to do. This orientation misses some of the fundamental ethical imperatives of the profession.
For physicians who try to modify the approach diagrammed in figure 1 to include only medical care which is appropriate for the stage of disease and the likely outcomes of treatment, the patient and family may perceive the care to be more like that shown in Figure 2:
The patient and family perceive, often quite correctly, that the physician shows diminished attention to the patient over time. This leads to another fundamental cause for patient and family dissatisfaction with the health care system--abandonment. Although the severity of illness may be increasing, the attention of the physician and other health care providers diminishes when there is "nothing more to do" for the disease. In addition, the implication of abandonment may lead to strident demands from patients and families to "do more, do everything". In the absence of an appropriate treatment framework that addresses these issues, the physician may pursue medical treatment that is futile in the service of patient autonomy. Such treatment results in more suffering for the patient and family because the important issues that surround death and dying are ignored.
In appreciation that the models diagrammed in Figures 1 and 2 do not adequately address issues of patient suffering, Dr. Cicely Saunders in England introduced the hospice model of palliative care. Working primarily with patients with cancer, she recognized that suffering might be produced not only from the cancer, but also by medical efforts to control the disease. She also recognized that the physical, psychological, social, and spiritual aspects of suffering were inadequately addressed. Culminating in the establishment of St. Christopher’s Hospice in south suburban London in 1967, she developed a model of inpatient care for patients for whom curative therapy was not available, or was no longer desired. In this model there is an interdisciplinary team approach to the care of the patient and family that continues into a bereavement period after the patient’s death. The hospice concept has been widely adopted because of its demonstrated benefits for patients and families. Figure 3 shows the most common position of hospice care in the overall scheme introduced in Figure 1. There is generally a sharp demarcation between disease-oriented therapy and hospice care.
Although hospice care addresses aspects of patient suffering not addressed during "standard medical treatment", this period is often short (median of 30 days in the US) and there is a sharp discontinuity between the previous medical care and hospice care. Conceptually, one of the chief problems with this model is the dichotomy between curative/life-prolonging care and hospice care. This model suggests that the goal of medical care is first cure, then relief of suffering. Yet, good sense dictates that the two goals can be pursued simultaneously. Why wait to introduce measures to alleviate suffering and improve quality of life until all attempts at cure have been exhausted or the patient and family plead for such efforts to stop? It would seem to be generally appropriate to integrate cure/prolongation of life treatment with the relief of suffering. The nature and course of the illness and the patient and family’s goals for care should determine the relative emphasis on cure versus palliation. It should be self-evident that many palliative care approaches to illness should precede the point at which referral to a hospice program is appropriate. For example, aggressive control of pain, other bothersome symptoms, and the psychosocial effects of chronic life-threatening illness should characterize the very beginning of contemporary geriatric care. This approach can accompany aggressive therapy with curative or life-prolonging as well as for diseases where death is inevitable. This scheme is shown in Figure 4.
In this model, Hospice Care represents the completion of medical care, not an alternative to, or an abrupt change from, the preceding care plan (17).
As disease progresses, inpatient hospital treatment has conventionally increased. The number of admissions to inpatient settings and the use of health care resources increases dramatically during the last year of a patient’s life. To minimize patient suffering during this period, as well as to ameliorate the contribution that inpatient treatment makes to suffering, hospice programs in the US have pursued the provision of palliative care at home. Most patients find this preferable to institutional care, but not all. Therefore, a program of palliative medicine must coordinate and deliver care across a continuum to encompass all phases of illness and locations of medical treatment in order to care for the patient and family in the best possible way.
PROGRAM OF PALLIATIVE CARE
The palliative care and home hospice program at Northwestern Memorial Hospital has 3 components to help clinicians care for patients in this continuum.
Consultation Service
Patients are seen anywhere in the hospital at the request of the managing service. Issues of pain and symptom management, helping discern treatment goals, and family conferences are all reasons to request a consultation. An average of 57 consultations (range 45-80) are requested each month. This average has increased approximately 5% per year since the inception of the service in 1993. The service is widely perceived as helpful by medical center physicians and staff.
Acute Inpatient Palliative Care Unit
In the new hospital, it currently consists of 10 acute hospital beds in large private rooms on a dedicated nursing unit in the hospital.
The unit has a distinctive design to accommodate families in a more home-like atmosphere. Visiting hours, ages and numbers of visitors are unrestricted. Pets may visit and patients may smoke cigarettes. The unit is staffed with full-time professional staff and hospice-trained volunteers. Some professional staff and volunteers are shared with the home hospice program. For example, the bereavement coordinator works to extend bereavement support to all families of those who die either on the unit or at home. Because it is an acute care unit, the full range of services and treatments available in an acute hospital are available. The only requirements for admission are a "do-not-resuscitate" order and a primarily palliative focus of medical treatment. Direct admission from home or office without being evaluated in the emergency department is permitted at all hours. Enrollment in a home hospice program is not required.
There is a high degree of patient, family, and physician satisfaction as measured by survey data. In annual surveys, patients and family rank the quality of care as among the highest in the hospital. Similarly, surveys of attending staff rank the quality of the nursing as among the highest in the institution.
All insurers and third party payers that cover hospitalization at NMH cover hospitalization on the unit. Patients are not required to have accessed hospice insurance benefits to be admitted. Appropriateness of admission and continued stay are evaluated using the same criteria for utilization review as other patients in the hospital
Home Hospice Program
Medicare and the Joint Commission on Accreditation of Healthcare Organizations certify the home hospice program. The team delivers hospice care to patients and families living within the city limits of Chicago. Patients are eligible for home hospice care if their physician certifies they have a prognosis of less than 6 months if the disease follows its usual course and the treatment plan is focussed on achieving palliative goals. In other words, patients don’t "have to die" in 6 months. Physicians are urged to contact the service for more information and/or consultation for patients who they think may benefit. The Medicare Hospice Benefit covers 100% of costs related to the terminal illness, including medications. It doesn’t cover hired custodial care at home. It is available for patients cared for in nursing homes.
The average census fluctuates between 35 and50 patients per day. In fiscal year 1997 the program cared for 198 patients at home. The median length of stay is 31 days with an average of 73.9 days. The program uses the NMH indigent care budget to provide basic hospice care at home that would conform to that provided by the Hospice Medicare Benefit without regard to financial situation. Further, the program uses philanthropy to provide care that would not otherwise be available—principally the hiring of caregivers for patients who live alone or who have frail or working caregivers.
As with other home hospice programs, the program prevents unnecessary admissions to acute hospital and skilled nursing facilities and avoids unnecessary use of the emergency department by having nurses on-call 24 hours per day, 7 days per week to provide a rapid response to changes in symptoms.
The program works flexibly to coordinate care with Northwestern Home Health Agency, a separate home health agency owned by the hospital corporation to maximize patient benefit.
Despite being a teaching hospital, NMH is a private hospital where the medical staff is composed of approximately half full-time faculty and half private-practitioners. Patients are admitted to the hospital, and admitted to the home hospice program, under the patient’s primary attending. More than half of the 219 physicians were general internists (there are no family physicians on staff at the hospital). Only 14% of the physicians were oncologists despite more than half of patients having a diagnosis of cancer. Nine percent of the attendings were surgeons. This is evidence of the broad acceptance and integration of the program into the culture of the medical center.
CONCLUSION
It is imperative that the principles of palliative care be incorporated into mainstream comprehensive geriatric programs. Hospice care, and the aspects of palliative care that are pertinent throughout the course of the illness, should be a part of every program.
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