Part 2 Hospice Care Practice
The earliest hospice programs in the United States were developed in the 1970s; modeled on the work in England of the modern hospice pioneer, Cicely Saunders. In the ensuing thirty years it is estimated that six million persons have received end of life care in a hospice program. In the year 2005 alone, it is estimated that one million persons will be enrolled in hospice care provided by the approzimately three- thousand, two-hundred hospice programs.1
How did hospice become such an important part of the health care system? Several interrelated changes occurred after the second world war that altered the delivery of health care. Prior to that time, death commonly occurred at home. For example, the author’s Grandpa Lamers died peacefully at his home in Wisconsin in 1939. His wife, daughter, and a part-time nurse were his major caregivers. His doctor made occasional home visits. Grandpa died of kidney failure, most probably due to urinary tract obstruction from cancer of the prostate.
Fifteen years later, when the author entered medical school, dying at home was less common. Persons with serious illness were hospitalized, treated, and were often cured. Life expectancy lengthened. The cost of care increased. Doctors stopped making home visits and many of them re-located offices to be closer to hospitals. Nursing homes emerged to provide a lower level of care than hospitals for patients who could not receive adequate care at home. Advances in public health, prevention, diagnosis and treatment changed the demographics of dying. The rising cost of new diagnostic methods, treatments, hospitalization, and medication contributed to the need for health insurance including Medicare for persons over sixty-five years and Medicaid for indigent persons.
The demographics of dying have also shifted dramatically over the years. At the beginning of the last century, most deaths in any year occurred in children under fifteen years old. At the end of the same century, most deaths occurred in persons over sixty-five years of age. The prospect of spending one’s final months or years in a nursing home led to the development of advance directives, living wills, and discussion of what could be done to die with dignity instead of being subjected to treatments to extend life when little quality of existence remained. People looked for an alternative to the prospect of hospitalization, futile treatments, prolonged pain, and depleted financial resources during a protracted illness.
“Hospice did not take a passive approach toward pain, but stressed careful examination to discern the site and origin of whatever pain and symptoms might be present. Hospice focused on providing comfort.”
Hospice Fills a Need
Hospice offered a viable alternative when cure was no longer a reasonable prospect. The idea of receiving care at home with the support of hospice and family caregivers found wide acceptance, especially after Medicare legislation was modified to include what is called the Medicare Hospice Benefit (MHB). Hospice helped meet the needs of patients with advanced, life-threatening illness who no longer required diagnostic tests, aggressive therapies or high-tech institutional care. These patients needed pain relief, symptom management, supportive nursing care, social services, repeated evaluation and observation, and excellent communication with all level of caregivers.
One of the major appeals of hospice was its emphasis on the relief of pain and other symptoms secondary to the underlying disease and its treatment. While most people tended to accept the popular misconception that dying had to be painful — that certain types of pain simply had to be endured — hospice did not take a passive approach toward pain, but stressed careful examination to discern the site and origin of whatever pain and symptoms might be present. Hospice focused on providing comfort. This required repeated observation, open communication and creativity aimed at safe, rapid and continuing relief of symptoms. Hospice care is “comfort care.” Saunders, who pioneered the modern hospice movement, has said, “Hospice is hard medicine with a human face.”2 By “hard medicine” she meant the best of technical medical care coupled with a recognition of the patient as a person with multiple levels of needs: physical, psychological, social, and spiritual. The primacy of attention to relief of pain and other symptoms separates hospice from end of life care that merely provides counseling to dying persons. Saunders further emphasized the totality of the commitment to patient care. “In hospice, nothing leaves us out from [achieving] excellence.”2
Whereas in England, hospice was initially identified as a program of specialized care provided in a building devoted to end of life care, in the United States hospice soon became identified as a program of care provided in the patient’s home. Not only did most dying patients prefer being at home, but there was little justification for developing a separate facility when hospital occupancy rates were declining.
Several essential elements that characterize hospice are outlined and described below. Though they are listed separately here, they are inseparable in practice. No single one of these characteristics by itself defines hospice. Together they form a unity that describes core hospice philosophy:
- pain and symptom management
- readily-available services
- interdisciplinary team care
- respect for patient/family lifestyle
- hospice facilitates communication
- patient/family is the "unit of care"
- care at home
- bereavement support
Pain and Symptom Management
The central element of hospice philosophy and care is pain relief. Dying is not necessarily a painful process, yet many of the conditions that lead to death are accompanied by recurrent or chronic pain. Prior to the advent of hospice care in the United States, many cancer patients received less than adequate pain relief. Doctors, in general, tended to under-treat severe, chronic pain with low and infrequent doses of opioids. They lacked the knowledge, training and experience to properly treat chronic pain on a continuing basis. This led doctors to mistakenly assume that the pain of advanced cancer, for example, could not be controlled. For decades, doctors had been cautioned not to use morphine on a continuing basis for number of reasons — few of which were supported by clinical evidence or solid research:
- fear of causing respiratory depression
- fear of overdose
- fear of diversion to criminal use
- fear of addiction
- fear of tolerance
- fear of censure
- fear of losing one’s medical license
Doctors who prescribed morphine for severe pain usually limited it to small prn (as needed) doses, thus leaving the timing of opioid administration to nurses, who, fearful of being complicit in over-dosing the patient, needed assurance that pain had recurred before the next dose could be injected. This gave rise to the sort of chart entry I saw during one consultation: “Pain is not as bad as the patient says it is.”