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7 Articles in Volume 5, Issue #3
Hormone Treatments in Chronic and Intractable Pain
Iatraddiction: A Diagnostic Term In Lieu Of Pseudoaddiction
Opioid Blood Levels in Chronic Pain Management
Part 2 Hospice Care Practice
Pelvic Floor Dysfunction A Treatment Update
Technology Review
Urinary Drug Testing in Pain Management

Part 2 Hospice Care Practice

Hospice and its implications for the physician and patients in dealing with end-of-life issues.

Editor’s note: this article is part two of a two-part series on hospice care from a pioneer in the hospice field, Dr. Lamers. Part one, published in the March issue (Vol 5, Issue 2) presented a personal account of the early days of hospice care with a perspective on progress to date and lessons learned.

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:

  1. pain and symptom management
  2. readily-available services
  3. interdisciplinary team care
  4. respect for patient/family lifestyle
  5. hospice facilitates communication
  6. patient/family is the "unit of care"
  7. care at home
  8. 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.”

Today we know that untreated pain tends to increase in intensity. In addition, chronic pain acquires a strong emotional component. Largely because of their failure to prescribe adequate, timely doses of morphine to relieve pain around the clock, some doctors resorted to “poly-pharmacy”3 in the futile hope that some magical combination of drugs would blunt pain, put the patient at ease, and allow sleep.

Inadequately managed severe, chronic pain often resulted in a number of secondary symptoms: anxiety, depression, insomnia, anorexia, isolation, withdrawal, anger, and thoughts of suicide. Doctors commonly prescribed a separate medication for each of these symptoms. The pain was left without adequate treatment. The result was a sedated, confused, frustrated, relief-seeking patient with severe, chronic pain, and leading the doctor to mistakenly assume that the patient had developed tolerance and was in danger of becoming addicted. Patients were mistakenly told that their particular pain could not be relieved. The pejorative phrase, “You have intractable pain,” was used to shift the blame for analgesic failure to the patient and the disease.4 The mental mechanism involved in shifting responsibility for failure to relieve pain is equivalent to an oncologist explaining to a patient, “You failed the protocol.”

Hospice also promoted the use of oral morphine as an alternative to injected morphine. Many doctors believed that morphine was not effective when taken by mouth based on the mistaken assumption that morphine was metabolized by acidic gastric juices. Today we know that morphine is absorbed in the alkaline medium of the small intestine and transported to the liver where it is conjugated to the glucuronide. Patients who required repeated injections of morphine complained of painful injection sites, whereas the bitter taste of oral morphine could be tolerated by adding flavoring agents.

Another important aspect of hospice pain management was the recognition that chronic, severe pain is not uni-dimensional. Inadequately managed pain links to other concerns, intensifies fears, causes anxieties, disrupts sleep and dominates awareness.

During her study of hospitalized patients with pain, Jeanne Quint Benoliel asked an elderly man to tell her about his pain:

“Tell you about my pain? That’s strange; I’ve been here for several months and no one has ever asked me about my pain. What pain do you mean? The pain of my life when my daughter died? The pain I feel every day because no one comes to visit me? Or the pain from the cancer that I know is going to kill me?”5

Recognition of the multi-dimensional character of chronic pain is one of the important factors in hospice pain management. It is not sufficient to provide relief for physical pain alone. Even after physical pain is relieved, patients still describe what we commonly call “suffering.” Through the supportive relationship that often develops between dying patients and their hospice caregivers, it is possible to observe a lessening of the dysphoria we associate with suffering, emotional distress and depression. Many in our society believe that suffering is heuristic; that it can result in long-term benefits to the individual. A physician once told me that his mother often said, “Carl…we are put on this world to suffer.”6

“Another important aspect of hospice pain management was the recognition that chronic, severe pain is not uni-dimensional. Inadequately managed pain links to other concerns, intensifies fears, causes anxieties, disrupts sleep and dominates awareness.”

This attitude was evident in the first question I received after I made a presentation on pain management to a large group of nurses. A nurse rose and asked, “All this is well and good, doctor, but don’t you also believe that suffering can enhance one’s character?” This regressive belief dates from the earliest days of civilization, before we knew how to treat pain. Today there is no excuse for such rationalizations. It is no longer necessary for people to suffer. Yet there is a wide gap between what we know about the nature of pain and how to treat pain and our clinical practice. How can we explain the gap? J. Michael Bishop, a Nobel Laureate and the current Chancellor of the University of California, San Francisco, provided an explanation that forces us to re-examine our training:

“As a medically-trained scientist interested in research and also in teaching, I am forced to the conclusion that surprisingly few physicians bring to the bedside intellect, curiosity, or a continuing curiosity to understand what is happening. What they bring is a set of reflexes that enables them to earn a living.”7

Bishop’s critical comment is especially pertinent to the training and attitude of many physicians to the management of severe, chronic pain. Most are inadequately trained and inexperienced in this area. They are the recipients of generations of mistaken assumptions about pain and the use of opioids. They are fearful, prejudiced and intimidated by the professional shortcomings of their mentors and their peers, the sometimes irrational regulations of bureaucrats and ill-advised lawmakers. As a result, the problem of inadequate management of severe, chronic pain has passed from generation to generation of doctors. One of the goals of hospice is to introduce curiosity and creativity into the field of pain management.

What is the extent of the problem of pain? The French surgeon, Daetigues, offered a dramatic description of the universality of pain:

“Were we to imagine ourselves suspended in timeless space over an abyss out of which the sounds of the revolving earth rose to our ears, we should hear naught but an elemental roar of pain, uttered as with one voice by suffering mankind.”8

Has the problem improved? A contemporary British physician, John Hinton, wrote of the plight of persons in pain and offered a partial explanation for why things have not improved over time:

“We emerge deserving of little credit; we who are capable of ignoring the conditions that make muted people suffer. The dissatisfied dead cannot [complain out loud of] the negligence they have experienced.”9

Untreated pain has been central to the human condition for so long that many believe that pain is inevitable and, in the main, untreatable. The inevitability of pain has caused people to fear certain diseases more than others and to falsely assume that dying is necessarily painful. Through centuries of untreated pain, we have also been led to believe that suffering can have beneficial effects, in this life or the life hereafter.

Hospice was developed to focus on what could be done to help ease the pain and suffering of individuals. It recognized the impossibly difficult position of patients who experienced pain, discomfort and suffering day after day — as typified by this excerpt from the diary of a young woman with end-stage cancer in a California hospital at the time (1975) hospice was under development:

What is Palliative Care?

  • Comprehensive care, provided by an interdisciplinary team for patients with severe, advanced, life-threatening illness.

Objectives of Palliative Care

  • To relieve suffering through management of pain and other symptoms
  • To achieve and maintain optimum quality of life
  • To enhance sharing of information
  • To promote co-ordination of care
  • To promote advance care planning
  • To address psychosocial and spiritual needs of the patient/family

American Medical News
www.amednews.com — March 7, 2005

“I am suffering. ‘A lot?’ they ask. ‘Do you have a lot of pain?’ When they pass me in corridors and I am weeping, I am asked if perhaps I am not just ‘depressed.’ I am told to ‘have faith,’ beseeched to ‘calm down.’ I seem to bewitch people as I pass them. If they are not medical personnel they simultaneously tend to draw back inwardly as if to flee, and out toward me with compassion. ‘Do you want to pray?’ one kind lady asks, the wife of a patient. The medical personnel here are also my friends. They listen, then go into action for me. The shots have no effect. I am beside myself; frantic. They draw away; inward, backward. I feel all possibility of help has gone. ‘I wish there was more I could do for you... I don’t know what else to do.’ Carefully schooled brains filter through mental files and come up with nothing. Then they fade out, slowly, softly in slow motion: I cry and cry. I call out for help. I see them smiling and patting my head and telling me I’ll be better soon and waving good-bye. I am angry. I feel abandoned. I feel betrayed. And I feel hurt and angry and betrayed for one reason: I am being left to suffer. I am being put off because of my doctor’s lack of knowledge. I know it is not for lack of caring. But for whatever reason, they are letting me suffer.”10

The services that hospice can provide to patients and their families mean little in the absence of pain relief. Once pain is brought under control, patients can begin to focus on the time that remains to them and can proceed to deal with remaining unfinished business. They can go about the business of living until they die rather than merely exist with pain and discomfort until death takes over. They can then make their wishes known, communicate as they want with family and friends, and say “thank you” and “goodbye.”

Readily Available Services

Hospice recognizes that patient needs can change at almost any time during the last phase of life. Therefore, in addition to at least weekly nursing visits to the home and several visits each week by a home health aide, hospice staff are available 24 hours a day, seven days a week by phone. A hospice nurse, other staff, and volunteers are available as needed during other than usual office hours. Ideally, once initial symptoms are brought under control, the patient and family learn to trust the fact that hospice is available. It is common for patient or family members to call during the first several evenings just to be sure that someone will respond. Hospice does stress, however, that for hospice patients, there are few emergencies. Families are encouraged to call hospice rather than to dial ‘911.’ The final stages of life do not constitute an emergency. Hospice staff traditionally informs patients what they might anticipate in the days and hours ahead. If possible, a hospice nurse will be present at the time of patient death to assist the family in the details that follow death, from notifying funeral service personnel to supporting persons who may be present and answering any questions.

Respite care is also available as indicated. This option allows the patient to be placed temporarily in a nursing home or acute care hospital for up to three days at no cost to the family should they need a break (respite) from their round-the-clock patient care responsibilities. Home health aide visits are scheduled on a regular basis to assist with bathing, personal hygiene care, and attention to other patient needs. Other hospice personnel, volunteers, and therapists of various disciplines are available as needed. Hospice also informs patients and families of other services in the local community that may be of benefit, like “Meals on Wheels.” Hospice also helps the family to recognize the need to obtain refills of prescriptions before the weekend.

Interdisciplinary Team Care

Another important characteristic of hospice is that care is provided by an organized, interdisciplinary team (IDT) of professionals whose work is augmented by trained and supervised lay volunteers. The term, “interdisciplinary team,” means different things. In a loose sense, it has been described as “no more than names on a piece of paper.” Hospice work requires professionals of different disciplines to work together across the spectrum of patient/family needs in terms of evaluation, assessment, treatment, consultation, and counseling. This cannot be accomplished without interdisciplinary trust, respect, and open communication. Health care education and training does not always predispose us to be open to the knowledge, experience and insight offered by persons of different disciplines. The development of optimal interdisciplinary cooperation must arise out of the primacy of excellence in patient care. No one person, no single discipline possesses all the knowledge, skills or experience to be everything for any patient. The secret to harmonious interdisciplinary team development is that all caregivers can learn from one another. The more that is shared, the better the care.

Clinical social workers are indispensable members of the IDT. Their particular training and experience equip them to know how to access community resources that are largely unknown to others on the IDT. They not only understand family dynamics but are skilled counselors who are also experienced in social and psychological problem-solving. They are usually experienced in dealing with difficult economic situations and know how to deal with private and governmental agencies.

Nurses are essential members of the IDT. Customarily, each patient has a nurse to assume leadership for IDT involvement for each hospice patient. This nurse is “primary,” in that is he/she makes the majority of visits to the patient/family and facilitates communication regarding that patient with the IDT and the attending physician. The primary nurse oversees the work of other IDT members and is responsible for IDT records, medical orders, volunteer involvement, and other related aspects of care.

The hospice medical director should be an active member of the IDT. He/she should have training and experience in the medical aspects of hospice/palliative care and should be available, as indicated, to make assessment visits to patients. This physician should be skilled in communicating with local physicians and other referral sources, should attend all IDT patient care conferences, and should be available on a 24/7 basis for urgent calls from other members of the IDT.

Hospice relies heavily on the valuable contributions of lay volunteers who are carefully selected, trained, and supervised. They augment the work of health care professionals by doing the sort of things that a friend would do. This includes everything from “sitting” with the patient while family or other caregivers do other things. It may include shopping, light housework, preparing food and answering the telephone.

Ideally, the attending physician is part of the IDT. Many doctors seek reasons to yield responsibility for patient care to the hospice IDT, but every effort should be made to keep the attending physician informed and to seek his/her advice. The hospice medical director should help facilitate communication with the patient’s own doctor. Faxing a summary of weekly discussion of the patient during the IDT conference to the attending physician is an important element in maintaining this important link.

The hospice IDT is not a hierarchy in the usual sense of an organizational diagram. The hospice IDT is better represented by a circular diagram in which all members are on the same level, working together, communicating clearly, and supporting one another. This becomes important as staff experiences the inevitable deaths of patients. Traditional institutional medicine does not usually deal openly with the death of a patient. A nurse who had previously served two tours of duty as a M.A.S.H. nurse in Viet Nam once told me that, for her, hospice was more difficult than her service in Viet Nam. There, she told me, casualties were brought in at any hour of the day or night. “Some were saved; some died. Most were evacuated to other hospitals. We never got to know them. But being a hospice nurse is different. In hospice you get to know them and love them. Then they die.”11

“The fact that most hospice care is provided in the patient’s home presents opportunities, challenges and responsibilities not found in other modes of health care.”

A properly functioning hospice IDT therefore must therefore develop its own internal support systems. This is one of the reasons for having a spiritual leader or chaplain on the team. Because of the repeated association with death, there is an undeniable spiritual dimension to hospice. The hospice IDT does not proselytize, but is respectful of all religious beliefs and even the absence of religious beliefs. The purpose of the hospice chaplain, as stated by an early hospice chaplain, is to be “a spiritual broker.”12 This means that the hospice chaplain should know the religious and spiritual resources in the community and learn from the patient/family if they want any assistance in connecting with those resources.

Other therapists and disciplines are also members of the hospice IDT. Psychologists, bereavement counselors, dietitians, pharmacists, music and art therapists, speech therapists, as well as others, are valuable members of the hospice “team.” We have learned to include funeral resource persons as consultants since families often have question regarding the care, disposition and transport of the body following death of the patient.

Respect for Patient/Family Lifestyle

Just as each patient is unique, each family is also unique. There may be similarities in patterns of family behavior or in styles of coping with end of life issues, yet each patient and each family requires individualized attention. Some families are better at communicating with one another or with health care workers than others. Families come from different social and cultural backgrounds, have differing religious beliefs, spiritual practices, sexual orientation, different ways of expressing affection and intimacy, unique concepts about life, dying, death and the hereafter. The fact that most hospice care is provided in the patient’s home presents opportunities, challenges and responsibilities not found in other modes of health care. Hospice professionals and volunteers are guests in homes at a time when families are usually under considerable stress. Those who come in the name of hospice are not there to seek change when differences from what we consider “normal” are observed. Hospice is there to provide comfort and relief; not to add to the ongoing level of distress. Hospice is not there to take over from the family or to try to change their behavior, customs or traditions. Hospice should be a neutral element, not an agent for family change.

During the 1970s, most hospice patients in this country had a diagnosis of cancer. During the 1980s, hospice became involved in end of life care of patents with AIDS. This required hospice to adapt to a new understanding of what is meant by “family” and “next-of-kin.” Later, as hospice began to care for patient with advanced neurological disorders including Alzheimer-related dementias, hospice adapted to working with new family dynamics, new challenges and responsibilities. Hospice involvement in the care of seriously disabled persons — some of whom were long-term occupants of residential facilities — resulted in hospice learning to understand residential care policies and regulations as well to interact with employees who were unaware of the principles and practices of hospice care.

Hospice Facilitates Communication

Patients deserve clear information in everyday language about their diagnosis, prognosis and the treatment choices available to them. In simplest terms, communication is the transmission and reception of meaningful messages. Under the stress of serious illness, communication can suffer. Hospice makes an effort to improve the level and quality of communication within the patient/family unit, as well as among health care providers. Patients with advanced illness are sometimes reluctant to ask direct questions of their doctor, but are less reluctant to ask the same question of a home health aide or even a person who delivers food.

Families who are caring for a dying loved one may not know how to communicate with the various doctors and services involved. Hospice checks on the quality of communication and helps patients and families ask better questions of their doctors and other caregivers. This involves hospice assuming the role of ombudsman. Usually it involves nothing more than helping patients and families learn to ask direct questions. Ideally, patient decisions affecting care are made on the basis of adequate information and reflection; not out of fear, anger, concern for abandonment, or default. Hospice recognizes the need to support patients in their participation regarding decisions affecting their care.

Hospice helps patients and families to establish reasonable goals. This requires open communication. Reasonable goals can enhance the quality of life; unreasonable goals ultimately erode patient/ family confidence. Hope can be revised, but trust — once tarnished — is not easily restored. Patients with advanced illness may cling to hope that caregivers deem unreasonable. I recall a patient telling me, “Doc…I’m going to lick this cancer,” only a few hours before he died. We do not lie to patients but, on the other hand, we do not have to reveal everything we know. The journalist, Stewart Alsop, wrote in a book as he was dying of cancer that a guide for doctors in speaking about prognosis should be to tell, “The truth…and nothing but the truth, but not the whole truth.”13 Some tend to confuse hope with denial, and feel the urge to force the patient to confront a harsh reality that holds no room for hope. Hospice is respectful of both hope and reality and recognizes that it is not necessarily pathological to maintain hope even in the face of certain defeat. This attitude stems from hospice’s respect for the human spirit and awareness of the importance of intangible, spiritual factors in human existence. Hope has been defined in various ways. Hospice usually speaks of hope as “the possibility greater than zero that an objective can be reached.”14

Patient/Family Is the "Unit of Care"

Hospice strives to preserve the unity of the family as the primary caregiver and support of the patient. In hospice, ‘family’ may mean persons other than blood relatives: friends, lovers, neighbors. “Family” may also mean co-workers and spiritual advisors. The family is encouraged and taught to assist in providing hands-on care in the home. When no family is available and transfer to some sort of institution is impractical or not wanted by the patient, it is often to recruit volunteers in the vicinity who are willing to be surrogate family.

“Hospice is respectful of both hope and reality and recognizes that it is not necessarily pathological to maintain hope even in the face of certain defeat. This attitude stems from hospice’s respect for the human spirit and awareness of the importance of intangible, spiritual factors...”

The author recalls the first time experiencing this development of a surrogate family. A woman in her sixties who had recently been diagnosed with end-stage cancer asked for hospice assistance. Her roommate from another state was not due to move to the same apartment for several months. The nurses who made the initial visit to this woman determined to keep her in the program despite the admission requirement that there had to be “a responsible caregiver” in the home. These same nurses rang doorbells in the neighborhood, introduced themselves and asked if the stranger would be willing to help care for a neighbor who was dying. Within less than an hour a sufficient number of people made a commitment to help. They took turns to provide twenty-four/seven, on-site coverage for their neighbor. Each day someone from the hospice visited to observe, to teach, and to support these patient care volunteers. They even learned to give insulin shots to the patient’s dog. The lady received excellent care and died peacefully in her home. The most surprising part of this occurred just after the death of this lady when all were gathered in the living room. One of the volunteers asked, “Doctor…when can we do this again?”

Care at Home

At the beginning of the last century, the majority of deaths occurred at home. By the end of the century, most deaths occurred in either a hospital or an extended care facility. Death was not generally seen as a normal part of life; it had become “medicalized.” The process of dying had to be somehow treated. It was as if no one was allowed to die a normal death. Something had to be done to avoid or deter or confound death.

In one city in which the author worked, patients in nursing homes who appeared to be dying were transported by ambulance to the nearest hospital where they were rushed to the intensive care unit where they were given whatever life support measures were deemed necessary. This created an unusual situation for family members who were notified of the impending death.

Because their dying relative was now in an ICU, they were not allowed to visit them in the hospital to which they were transferred. Instead, they gathered at the nursing home and sat around the empty bed of their loved one, waiting for word that the death had occurred. The empty bed in the nursing home was the focus of their attention. The staff who had cared for the patient, sometimes for many months, were not present or involved in the final care of the patient. What had happened to convert what should have been a “normal” event into a pathological condition that necessitated transfer to an intensive care unit and the implementation of resuscitative, life extending procedures? How had dying become medicalized? What did this transition say about society’s feelings about life, death, the body, our apparent need to control the dying process, to forestall death? What about our priorities in health care? What about the cost of futile care? And what about the emotional impact of families not being able to be with their loved ones at the time of dying?

The Support Study,15 funded by the Robert Woods Johnson Foundation painted a bleak picture of end of life care in several of the best health institutions in the United States. In the research arm of the study, nurses received special training designed to help them improve communication between physicians and families regarding end-of-life care. Analysis of the results the several year study showed that the intervention techniques were ineffective. It appears that patients who were deemed to be dying were often placed on life support systems in an intensive care unit — despite expressed wishes to the contrary. The same phenomenon had been described earlier in a paper, “Dying in a system of good care,” in The Pharos of A.O.A.16

3,270 Number of hospice programs in the USA today
3,125 Number of hospice programs that are Medicare Certified
950,000 Number of patients served by hospice in 2003
6,000,000 Number (approximate) of hospice patients in the past 30 years
NHPCO — March 2005

Hospice, therefore, was a clear innovation in care for persons who were dying because, in the first place, it provided death at home as an alternative to dying in an institution. People generally prefer to be in their own home rather than in an acute hospital or extended care unit. In the absence of excellent pain and symptom management, it is impractical, if not impossible, for dying patients to remain at home during the last days of a terminal illness. However, ready availability of durable medical equipment, the 24 hour, seven day availability of nursing services, the backup of an interdisciplinary team plus trained volunteers offered the promise of excellent home-based hospice/palliative care. The Medicare Hospice Benefit (1983) guaranteed that hospice home care would become a significant element in end-of-life care in the United States. In hospice work, ‘home’ is where the patient resides, whether that be their own home, an extended care facility, a free-standing hospice unit, or a designated palliative care unit in a hospital. Hospice further offered patients and families an alternative to aggressive, futile therapies. Hospice stressed comfort and quality of life over futile therapies. Until the advent of hospice, many people did not know that they had a say in what happened to patients with advanced illness. Residuals of “benevolent paternalism” led patients and families to feel that they had little or no say in what treatments they received or where they were to receive care. Many decisions were made by default. Hospice helped teach people to recognize and select alternatives.

Bereavement Support

Impending death provokes a wide spectrum of emotional responses in both the patient and the family. Anxiety is a common symptom due to the many pressures, questions, concerns and uncertainties that accompany dying and death. Hospice care offers patients and families repeated opportunities to express feelings about what is happening and to ask about what is going to happen. Hospice helps patients and families to begin to plan for the days, weeks, and months ahead; to explore alternatives; to seek further information; and to explore the changing realities brought about by progressing symptoms, changing needs and repeated awareness of the reality of impending death.

Reaction to loss and the need for bereavement support varies greatly and depends on a number of factors including the ages of the survivors, their participation in providing care, their internal and external support systems, and the impact of their prior loss experiences. The support provided by hospice to patients and to family caregivers enables the death of a loved one to be integrated as a positive experience rather than recalled as a necessarily negative ordeal leading to regrets, self-recriminations and depression.

Grief and bereavement following the death of a loved one is a normal condition and does do not usually require professional intervention. However, individual circumstances differ widely and some persons may require short-term therapeutic intervention. Most hospice programs offer some type of individual or group support. Hospice bereavement support usually continues through the first year following a death. Special attention is given to children and grandchildren who often have no experience in dealing with death in the family.

Palliative Care and Hospice: Definitions

When the word ‘hospice’ began to be used in the Unites States in the 1970s, it was used to represent a building in which dying persons received specialized physical, social, psychological and spiritual care. Later, the word hospice became associated with a philosophy of care. In time, it came to refer to an organized program of care that encompassed the eight characteristics described above.

The word ‘hospice’ traces its origin to the Latin word for a ‘way station’ on a traveled route, especially a path used by pilgrims on their journey to a place considered sacred. The word hospice is related to, yet not identical with, the root from which the word ‘hospital’ is derived. In fact, the earliest hospice workers were members of a religious order named, ‘The Medical Knights Hospitalers of St. John of Jerusalem.’17 The religious order exists to this day. However, the buildings in which they cared for dying persons on pilgrimage routes in medieval Europe came to be used as refuges for elderly disabled and poor persons who lacked family and caregivers. In much of Europe, the word ‘hospice’ gradually took on a pejorative meaning.

When Saunders opened her program in the south London suburb, Sydenham, she called it St. Christopher’s Hospice, in the tradition of predecessor hospices in London (St. Joseph’s Hospice, 1906) and Dublin (Our Lady Hospice, 1851). Balfour Mount established a program in the Royal Victoria Hospital in Montreal in the early 1970s. Though it was modeled on the work of Saunders at St. Christopher’s Hospice, he called it the “Palliative Care Unit” rather than use the term “hospice,” because he knew that if he identified the program as a hospice, it would be shunned by the majority French population of Quebec. In other provinces of Canada, the word hospice was commonly used.18

Hospice programs in the United States had no problem with the term ‘hospice,’ yet some doctors were reluctant to use the word or to refer patients for hospice care. This minority of practitioners saw ‘hospice’ as giving up; of not doing everything possible to save a life. For example, the author was invited several years ago to help plan the integration of hospice services into a large university medical center. After the project was well under way, the author was asked not to use the word ‘hospice,’ as it was considered offensive to many of the staff doctors.

As a result of the difficulty some doctors had when discussing end of life care, they used the term ‘palliative care’ as a euphemism for hospice. Hospitals soon saw that many patients who would otherwise have remained on their census were now being referred to hospice home care. An increasing number of hospitals have now established what are called ‘palliative care units.’ These units specialize in providing symptom management and comfort care for patients no longer deemed in need of aggressive, potentially curative therapies. The Medicare Hospice Benefit does not provide reimbursement for long term hospitalization of hospice patients, yet does allow for brief hospitalization for patients requiring inpatient management of troublesome physical symptoms. The Medicare Hospice Benefit also allows brief inpatient stays of hospice patients when family caregivers require relief from caregiving duties at home. This is known as “respite care.”19

Palliative care has become part of the language of hospice. The word ‘palliation,’ stems from the Latin word for “cloak.” In medicine, the term was initially used to describe treatment designed to cover or “cloak” the symptoms of a disease without curing or treating the underlying disease itself. Part of the value of the word lies in the fact that it sounds innocuous. Whereas ‘hospice’ is a dysphemism to some doctors, ‘palliation,’ ‘palliative care,’ and ‘palliative care unit’ have a euphemistic ring.

Hospice now is an established and integral part of the modern, western health care system. Palliative care and palliative care programs are also gaining in acceptance. The major hospice organizations have embraced the new terminology. The former National Hospice Organization (NHO) for example, is now the National Hospice and Palliative Care Organization (NHPCO).

The major difference between hospice and palliative care programs is that hospice care is provided in the home. The Medicare Hospice Benefit (1983) stipulated that eighty percent of the care of any hospice program had to be provided in the patient’s home. The definition of ‘home’ has been modified to describe the place where a patient resides. This allows the flexibility for hospice to provide care to patients who reside in long term care facilities (nursing homes). Private insurance programs have been studying the impact of hospice and palliative care, and some programs now provide payment for palliative care services in acute care hospitals.

Conclusion

As the population of the United States ages, it is imperative that more focus be given to end-of-life care with its emphasis on the patient’s physical comfort, as well as social, psychological, and economic impacts. With a million patients expected to be cared for in hospice programs in 2005 alone, it is crucial that the medical and support communities jointly explore and support innovative ways to improve the quality of life for persons with advanced, incurable illnesses.

Last updated on: December 20, 2011
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