Part 1 Hospice Care

Chapter 1 Living Fully Before Death: Two Stories

Palliative care is the physical, emotional, spiritual and informational support given to someone who has a terminal or life-threatening illness and to their families. The following are the stories of Mary and Frank's illness and their deaths. Mary's story is somewhat typical of how many people die in Canada today. Frank's story represents the hospice approach to living life fully until you die. Some of the details of these composite stories have been changed to respect people's privacy.


In 1974 Mary's family doctor found a lump in Mary's breast. After several tests and visits to various doctors Mary had a radical mastectomy to remove her left breast. Her husband Sam and three children (Susan, Pat and Bob) were very supportive even though they were not always sure of how to help Mary.

A year after her mastectomy Mary began to feel an intense, piercing pain in her chest. She thought her cancer may be returned and her gripping anxiety worsened the pain. Mary's son Bob was home from university and got Mary to agree to go to her local hospital Emergency Department for tests and possible treatments. Her cancer specialists did several tests to discover if her cancer had spread. Mary's doctors took her husband, Sam, aside and told him that Mary may have pulled a muscle in her chest and there was nothing to worry about, there was no cancer visible in any of her tests. They suggested that Mary's worry about her cancer coming back was common in women who have had a mastectomy and that Sam just needed to be extra supportive a little while longer. The doctors told Sam that Mary would receive physiotherapy for her chest pain "just in case she really did pull a muscle."

Mary's pain did not reduce with the physiotherapy. After two months of hot and cold treatments for her `muscle strain' Mary's condition continued to worsen over the Christmas holidays. She ended up in bed for most of the holidays feeling increased chest pain, fatigue and stomach upset. One morning, soon after Christmas, Sam found Mary unconscious on their bedroom floor. It appeared she had tried to get to the bathroom on her own and had collapsed. Sam called 911 and Mary was rushed to hospital. She was in a coma and Sam was told she might not live through the day.

Mary's children flew in from various cities across Canada. The swiftness of the change in their mother's condition traumatised them and many of the subsequent days are just a blur in their memories today.

Mary recovered from her coma after several days. Her doctors told her very little but did tell Sam that there was nothing they could do for Mary anymore. They had discovered that her cancer had returned and was now present in her brain, liver, lungs, the sac around her heart and in her bones. The pain in her chest must have been bone cancer all along but had not shown up on X-rays only a few months before. The doctors were genuinely upset that they had not caught the cancer early enough. They were visibly saddened by Mary's condition and wished her family luck in caring for Mary at home.

Mary lived at home for a few months during which time Sam told her that her cancer had spread and that she had only a short time to live. Mary and Sam shared tears and love during that, and subsequent talks. They were each other's best friend and their 30 years of marriage was coming to an end. The children were with their parents and shared in the practical and emotional care of their mother. There were times when Mary comforted her children, as she had done so many times before, and times when Susan, Patricia and Bob comforted her.

Mary's pain continued to increase and the pain medication she was on was clearly not working. One night at 2:30 a.m. Mary sat bolt-up in bed and begged her family and God to let her die. She began reciting The Lord's Prayer loudly in hopes that her pain would subside. After a time she went on her hands and knees in bed and rocked back and forth with low pitched moans to try and reduce the pain.

Mary's family doctor came within the hour and gave her morphine. For the next two weeks Mary was in and out of semi-consciousness and was expected to die at any moment. When the family could no longer deal with the poorly managed physical pain Mary was suffering at home and their own emotional strain, they had Mary transferred to the hospital. Mary was, in fact, only a few days away from her death. Her admittance to hospital through the Emergency Department led to aggressive treatment of her condition. At one point it was determined, without consulting the family, that Mary's condition was worsening much too quickly and that she needed to go on a respirator if she was to continue to live. Mary had discussed this possibility with her family and had asked them to avoid life-support techniques if she was near death anyway.

Mary remained on a respirator for another two weeks. Her family went mostly without sleep and began to feel that they had failed Mary. They stayed with her round-the-clock since no one could say when she might awaken from her drug-induced coma or die. After much soul searching the family asked that Mary's life-support be removed. Her cancer doctors had done some further tests and agreed with their decision. They made it clear to the family that there was no reason to keep Mary on life-support since her cancer was overtaking most of her body. After several more days of discussions and waiting, Mary was given heavy sedation and her life-support systems were withdrawn. Mary died a short time later.

Sam, Susan, Patricia and Bob still have nightmares about Mary's last few months. There are so many questions unanswered. Why had Mary's cancer not been stopped after her mastectomy? Why had her cancer spread so quickly a year later? Why was her chest pain not investigated more carefully? Why were there not more supports available to Mary and her family so that she could stay at home as she had wanted? Why was her family not consulted about her treatment, especially the use of life-support systems? Why had the family not known more about how to help Mary? What would they do without Mary as the centre of their home? What would become of Sam with the children going back to their own homes in other cities?

It has been 17 years since Mary's death. She is still very much in the minds and hearts of her family. Patricia is now a palliative care nurse. She and her family wish that the spirit and knowledge of palliative care had been available to them in 1975 -- the year palliative care officially began in Canada.


Frank was a middle-aged construction worker who had worked for 25 years for the same company. Together with his wife, June, and his two children Elizabeth and Bill, they have lived in the same modest bungalow for the last 19 years.

In 1989 Frank finally went for a medical check-up. Frank did not trust doctors and had avoided seeing one for several years. However he had begun to feel more tired at work and was easily out of breath so June had convinced him to see their family doctor. The doctor discovered some difficulties with Frank's lungs. Although Frank had begun a few years before to smoke less than his usual two-packs of cigarettes a day it seems that his lungs were irreparably damaged. After further tests it was confirmed that Frank had lung cancer.

Frank went through various treatments of chemotherapy which stopped the cancerous growth for a time. The treatments were physically difficult for him but the hope of improving his health was worth the risks his doctors had fully described to him. His family worried about Frank but also changed some of their schedules to make sure that they could provide physical and emotional support to Frank while allowing him to continue to fulfil his role as father and husband. In other words, they didn't treat Frank like an invalid and if they did occasionally slip into a maternal behaviour he reminded them that he was still the Frank he always was, except that now he was also struggling to overcome his cancer.

Later in 1990 the cancer began to spread and the pain forced Frank back into hospital. After more tests, Frank's doctors told him that there were no other medical things they could do to cure him. They assured him that they would continue to care for him since their primary role now was to help Frank enjoy his life as fully as possible. This support included pain management that helped Frank remain relatively pain free and mentally alert.

When the doctors thought the time was right, a few days after they controlled Frank's pain and other symptoms, they told Frank about the palliative care program in the hospital which was available to him and his family. The professionals and volunteers in this program would provide as much physical, emotional, and spiritual supports as Frank and his family would like. The doctors told him that these supports could increase or decrease over time since Frank would choose the supports he and his family wanted.

Frank was given some written information about the palliative care program and a short list of books and articles that might provide further information. They promised to answer any and all of his questions honestly and in as much detail as he asked for.

His family learned about the palliative care program from Frank. They were still adjusting to the idea that Frank might die within six months and were not immediately interested in the idea of having more strangers enter their lives. They took the written material about the program home but didn't begin to read it until Frank was scheduled to return home from the hospital.

Before Frank returned to his bungalow (colorfully decorated to welcome "Dad" home) the Home Care Coordinator in the hospital arranged for daily nurses' visits and a hospital bed to make it easier for the family to help Frank who was now bedridden most of the time.

Over the next few months Frank's family and friends took turns being with him. Frank sometimes felt frightened about the future and other times felt blessed to have his family and friends so close by. These times were spent laughing, crying, remembering, planning and just being quiet together. Frank's pain and other symptoms were well controlled. The daily nursing visits were switched to three times a week for several months as Frank didn't need the daily care. In time his physical condition did require more care and the daily visits were started again.

In Frank's last few weeks he was given the choice of remaining at home or going into the hospital's palliative care unit. In the unit his family could concentrate on being with Frank rather than on providing most of his physical care. His family could still bring home-cooked meals, special photographs and other items from home that would help make Frank feel comfortable.

Frank, June, Elizabeth and Bill discussed the alternatives of Frank staying at home or going to the palliative care unit at the hospital. Frank worried about the extra work his staying at home would cause June and the children. Elizabeth and Bill were able to take some time away from school to be with their parents most of the times.  At the same time they were able to keep up with most of their studies when other family members and friends came to visit. The school had been very understanding and flexible with their homework assignments.

June, Elizabeth and Bill told Frank they wanted him to stay at home. They recognized the advantages of the hospital but felt that they could take better care of him at home with the help of Home Care's visiting nurses, the help of a visiting home maker (a person who helps with cleaning, cooking, and shopping arranged through Home Care), and the help of other family, friends and neighbours.

With the support of his family physician and Home Care, Frank's life at home was well supported with compassion and the love of his family and friends. The Palliative Care Program at the hospital provided information to help the family learn how they could support Frank at home and what to expect as his illness progressed. There were difficult times of trying to say goodbye mixed with the love of family and friends "being there" for him. Frank remained mentally alert till the day before his death. Slowly over his last few weeks he found he needed more and more sleep. The day before his death he went to sleep and died peacefully at home the next day. His priest had been to see him several times during his illness and returned on the day he died to provide support to his family.

Frank's family misses his strength, humour, and his loving hugs. They feel that they did the best they could for Frank and are proud that their supports allowed Frank to live his life as fully as possible under the circumstances. They remember the months before his death as both sad and happy because they, as a family, were open about their fears, anxiety and love. There were few things left unsaid.

Frank suffered the loss of his job and future. His death was not a Hollywood fantasy where everything went perfectly well. There were the typical bureaucratic problems with getting the necessary professional supports, equipment and medications. There were days of doubt and anger. But there was also time to prepare to say his goodbyes to family and friends. There was time to make the legal, financial and funeral arrangements without a mad rush. There was time to explore unresolved issues and some of those (not all) were resolved.

Comparison of the Two Stories

In both cases Mary and Frank received the loving support of their families. This is not always typical in Canada where so many woman outlive their husbands, and where many people have no family or friends nearby at all. In both stories it was obvious that Mary and Frank's lives until they died were not picture perfect. Mary did not receive the palliative care that Frank received. Mary's case is more typical of our current situation in Canada. In Sutherland and Fulton's 1988 book, Health Care in Canada, they estimate the 95% of Canadians do not receive palliative care. Frank's case, however, is not a fairy tale and good Canadian models of hospice care do exist across Canada.

The problem is, there is not enough support for people who are dying and their families. Let us look at Mary's story.

There was:

  1. little direction communication between patient and doctors

  2. Mary's description of her chest pain was minimized

  3. her family was ill prepared to provide the physical and emotional support she needed

  4. both Mary and her family had little information to help them know what to do and what to expect

  5. Mary's pain and symptoms were not well controlled

  6. there was inadequate home care available including night-time nursing care

  7. life-support systems were used without discussions

  8. no bereavement follow-up was offered to help the family answer their many questions

These are the very points that palliative care was developed to change.

In Frank's story there was open communication between all the various people involved in his care. Frank and his family in charge of most of the decision making. The hospital palliative care program provided information to help Frank and his family know what to do and what to expect. Frank's pain and other symptoms were well managed. While there was no bereavement follow-up by the hospital it appears that their family priest provided the support the family needed.

Knowing some of the practical differences that palliative care can provide patients and families let us examine Canadian palliative care more closely.

Chapter 2  Canadian Palliative Care: Meeting the Full Range of Human Needs

As we have seen in Chapter 1, there is a huge difference between dying without palliative care (Mary's story) or with it (Frank's story). The palliative care philosophy (also called hospice care) is an old one of caring for people who are dying. Understanding the various palliative care models available in Canada now will help you understand what is necessary in the future.

Palliative care is the active and loving care given to people who have a life-threatening or terminal illness and to their families. It provides physical, emotional, spiritual and informational supports to help improve the quality of a person's remaining life, and recognizes the patient and family as the principal decision makers.

Dorothy C.H. Ley, MD, FRCP(C), FACP, founder and past president of the Canadian Palliative Care Foundation and present Chair of the Dorothy Ley Hospice in Etobicoke, Ontario, in her keynote address at the 1991 Canadian Palliative Care Conference in Vancouver, said:

"Palliative care began in Canada in the institutional setting with the development of palliative care units. The Canadian health care system has consistently under-funded and underemphasized the community as a site for care. These two phenomena led to the establishment of many voluntary community-based programs and to home care and community nursing organizations incorporating palliative care into their services. The result has been a patchwork of highly motivated, innovative hospice programs. Unfortunately, most are poorly funded and lack sufficient professional staff to provide the interdisciplinary care to which they subscribe."

Palliative care provides a model of holistic care with either some, or all, of the following people being involved in giving interdisciplinary care: family members and friends; family doctors; community clergy; palliative care doctors, nurses, chaplains, social workers; pharmacists; dietitians; occupational and physio therapists; art and music therapists; masseurs; psychologists and psychiatrists; homemakers and volunteers. There should, however, rarely be a situation when all of these people are involved with someone who has a terminal or life-threatening illness. [The financial costs to both the health care systems and to the patients who must cover some of their homecare costs (depending on where they live in Canada) would be irresponsible.] We must avoid the potential danger of a fully-integrated palliative care system where too many people are involved with someone in the last stage of their life. People need security, comfort and compassion with some practical assistance from different caregivers. A program with too many professionals may require patients to receive services they may not want, or need, in order to fully utilize the services of paid staff. This is one of the dilemmas of our high-cost, medical-model health care system where increasingly people require more and more services simply because those services exist. It is one of the reasons why parts of our health care system still perceive maternity care, aging and dying as diseases requiring professional services.

In contrast to the technological methods of today's advanced health care system, palliative care represents a return to a more humane, patient-oriented philosophy of care that encourages patients, their families, and their caregivers to work together. Palliative care can be provided at home, in a hospital, in a special palliative care unit in a hospital, or in a free-standing hospice centre. Palliative care may occasionally use high technology to help manage a patient's pain or symptoms but this technology acts as a supplement to the person's care. In acute care hospitals this relationship is often reversed where "care" is secondary to the technological/pharmaceutical focus on "cure."

Hospice care and palliative care are the same thing. In Great Britain and the U.S.A. the word "hospice" is used most often. Hospice in French means dying in the poorhouse so the term "palliative care" was preferred in Canada in the mid-1970s. Both terms are now used across Canada. There is a trend in Canada to refer to the care given in hospitals as palliative care and care given in the community as hospice care. This trend is dangerous because some people use the different terms to imply that one form of palliative care may be better than another, which is not true. When a system of care assumes that patients and family have the primary role in decision-making, then the system must allow for different methods and places of providing palliative care.

The holistic palliative model should not be limited to people who are dying. Anyone who has ever stayed in a hospital will understand that they too need physical, emotional, spiritual and informational support to varying degrees.

Philosophy of Palliative Care

Hospice care is as much a philosophy as it is a program or an institution. There is an image of dying people that many Canadians have -- the person is comatose, hooked up to monitors with intravenous tubes sticking out everywhere. We have too often seen our loved ones like this and we have seen them in pain and suffering.

Hospice care is different. It makes sure that someone is relatively free of pain, is often able to be awake so they can remain an active part of their families until a few hours or days before death, does not use monitors or tubes, and tries to give as much control to the patient and family as they choose to have.

The practical elements of hospice care are more fully discussed in my book Choices for People Who Have a Terminal Illness, Their Families and Their Caregivers. I have summarized a few key points here for reference only.

The goal of hospice care is not to cure an illness nor to prolong life heroically. Surgical procedures are recommended only if they help a patient's physical comfort. Few tests are carried out unless they, too, can improve a patient's comfort. Even in communities where there is no official hospice care program, neighbours, family physicians, clerics and friends work together as a team to help someone in need. In fact, Trinity Hospice Toronto has established a community hospice program built upon helping people set up such teams for themselves rather than working within a formal palliative care program.

Once pain and other symptoms of an illness are under control, the patient and family have time to spend on their emotional, spiritual and informational needs. A major concern of patients and families is what the death will be like. According to palliative care experts, proper pain and symptom control in cancer patients, for example, permits the person to be alert and communicative until a short time before they die. They often slip into unconsciousness and die in the way most of us would like, in their sleep.

There are specific ways to help patients and families. Generally, emotional support means active listening. Such listening can be done by any and all of the caregivers and includes having the patient and family actively involved in the decision-making process. It means providing them with the information they ask for and helping them learn effective communication skills so that their hopes and needs are met as well as possible.

Helping patients and families spiritually does not necessarily require a chaplain, priest, pastor, or rabbi. It may be as simple as listening to patients' thoughts, beliefs and fears of dying, of an afterlife, or of a review of their lives in search for meaning. This spiritual element is often missing when we care for people who are dying and yet it can be the most comforting and hopeful form of caring.

Informational support means providing people with understandable information. It may be spoken, written down, video or audio-taped, or presented in group discussions. People have different informational needs. Some people want only very basic information, while others want volumes of information to help them decide what is best. People only remember about 20% of what they hear or read and they forget most of that within 24 hours. Therefore, information must come in different packages to allow them to return to the information when they need it most, often when no one else is around.

A major benefit to hospice care is that rules are kept to a minimum. The more organized the palliative care program the more rules there will be. Clients and families may want palliative care programs that are informal or formal. Choosing a program depends on the availability of different types of programs in a community and how soon a patient and family become aware of their choices.

The other major benefit of hospice care is that the professional and volunteer caregivers also receive support. So often in institutions the caregivers have little opportunity to discuss their feelings, concerns and hopes for their patients. When a patient dies caregivers often have no time to discuss the loss. In effective hospice care the caregivers are encouraged and given time to talk to their colleagues, to learn from each other and to share the losses they feel. Staff turnover in hospice care is very low relative to other forms of health care. I believe this is, in great part, because the professional and volunteer caregivers are able to give more of themselves to their patients and receive more in return.

Different Types of Care

The following is a list of the various types of hospice care available in Canada. Different communities choose different models based on their needs and the funds they are able to raise.

1) Home care and community hospices: caring for someone at home is often the key component of hospice care programs. These programs may be funded and coordinated by a provincial government or affiliated with a specific hospital, palliative care unit or coordinated through public health agencies as a hospice outreach program. Sometimes home care is strictly a community response to a need and is coordinated through a volunteer community hospice organization. In some communities the home care program is the only hospice care component available. With home care, the patient remains at home until death, rather than in a hospital or nursing home and is treated by visiting doctors, nurses, therapists, the clergy, and other caregivers. Principles of pain and symptom control, emotional, spiritual and informational support are followed.

In all hospice programs, home care is considered the most important component because people who are dying are usually most comfortable in their own environment. Only in situations when the family and professional caregivers are unable to provide quality care would patients go to the hospital or, if available, a hospice care facility.

People receiving care at home may sometimes go to the hospital or free-standing hospice to get help with pain and symptom control. Once the pain or symptoms are managed the person returns home. Some home care programs, hospitals and free-standing hospices provide what is called "respite care" which allows a patient to stay there for a few days or weeks so that the family caregivers have a little time off from the 24-hour per day care many of them provide.

[Most provincial and territorial health care services recognize the key role of providing care to people in their own homes, whenever possible.  There has been a large increase in the amount of referrals, funding and use of home care.  However, the home care systems are stretched to the limits.  Patients may have to cover some of the financial costs of extended nursing care, supplies and other supports.  Political leaders have given much lip service to the greater needs for home care and have, in fact, diminished hospital spending dramatically, supposedly to provide for more home care.  This has not happened as promised.  More and more, patients, their families and friends are being asked to take over the care of someone who would have normally received it in hospital.  This return to a pre-World War II tradition of caring for one's own family in our homes is actually a good idea philosophically but without the home care and financial supports to make this possible, the governments are only creating a greater need for more acute care.  People need paid leaves from their work in order to care for someone at home.  Pre-World War II society does not exist in Canada anymore with one or several people able to stay home and care for someone.  We are marginalizing our home caregivers (mostly women) in the name of economic globalization.]

2) Free-standing Hospices: a facility separate from any other institution providing only hospice care (for example, Maison Michel Sarrazin in Sillery, Quebec and Casey House in Toronto). Patients are often referred by a family physician or by a specialist seeing the patient in a hospital. Depending on the resources of such a facility there may be space available in emergency situations. These facilities do not have operating rooms, specialized life-support systems or other features of a regular hospital. At present there are only a handful of such hospices in Canada and most are affiliated with a nearby hospital.

3) Palliative Care Units in a Hospital: a separate unit within a hospital which provides all the services of a free-standing hospice except that patients are within easy access of hospital personnel and facilities. Because it is relatively easy to change part of hospital into a palliative care unit, such units are less expensive to begin than a free-standing facility. These units are often designed and decorated to give a more home-like atmosphere than other hospital units.

4) Palliative Care Team (Consultation Team) within a Hospital: rather than having a separate unit within a hospital, many hospitals now have a multi-disciplinary team of doctors, nurses and other caregivers who provide care to patients regardless where they are located in the hospital. This team often instructs the nurses and other caregivers throughout the hospital about how to provide palliative care. The team educates the regular caregivers in pain and symptom control and encourages the emotional, spiritual and informational supports that individual patients need. Hospitals with limited resources or those wishing to test the hospice philosophy may begin with a palliative care team. Other hospitals choose this model for philosophical reasons believing that patients should not be moved from the area where they are best known by the medical and nursing staff to a special unit somewhere else in the hospital. In this way all hospital staff would ideally become involved in palliative care, thereby advancing the concept throughout the organization. The palliative care team is usually very small (e.g. a full-time coordinator who is often a nurse, and part-time physicians, chaplains and social workers). Other professionals are brought in on an irregular basis. Volunteers may be recruited to help the patients, families and team members.

5) Extended Care Services: hospice programs in institutions such as nursing homes and chronic care hospitals. These facilities may have a palliative care team and/or a special unit for patients who are dying.

6) Regional Palliative Care Programs: some regions of Canada, e.g. Victoria, B.C. and Ottawa-Carleton, Ontario have regionalized their palliative care programs to coordinate the services of hospital-based and community based hospice programs.


The philosophy of palliative care encourages a relaxation of the limits normally found in hospitals and long-term care facilities. Patients, family members, professional caregivers and volunteers work together, with a minimum of rules, to help patients live as full and complete  lives as possible until their death. There is time for joy and hopefulness and a time for sadness and goodbyes. Palliative care has its difficulties. There will never be perfection in any palliative care model of care. The palliative care philosophy, however, provides us with the best guidelines to meet the needs of people who are dying while also providing support to their families and their caregivers.

Chapter 3  Palliative Care Within Our Flawed Canadian Health Care System

This chapter examines the proposed governmental directions for health care in Canada in the next decade, the commitment of provincial and federal governments to palliative care, plus information about how our health care system does not treat all of us fairly. The chapter ends with a review of health care statistics.

Palliative care cannot be provided in a vacuum. It must be looked at in the context of the health care system in which people who are dying are being treated right now. They need either palliative care within hospitals and other health care facilities or they need early referral to palliative care in the community. If, however, we as a society are to make informed decisions about palliative care, we need to understand the present health care situation in Canada.

General Canadian Health Strategies for Improving Our Health

Although provincial governments are planning for changes in palliative care there is still a lack of political commitment to act on the recommendations of the many recent health care reports. In some provinces the homecare and community health programs are grossly under-funded and uncoordinated. The development of over 300 palliative care programs in Canada by committed community and hospital leaders is a direct response to this lack of political leadership and funding in the health and social services ministries or departments.

Health care is the responsibility of the ten provinces and two territories in Canada. The federal government provides funds for some of the costs of health care in Canada and has a federal act to ensure relative equality of national health care. [However, the Liberal government in 1995 has declared that it will dramatically reduce its funding for health care, post-secondary education and social welfare programs.  They intend to continue to ensure relative equality of national health care but the provinces have made it clear that they will not accept reduced funding for health care without having control over how they provide health care services as well.  Many are talking about a two-tiered system where people pay for some medical services and not others.  Other provinces continue to request the right to charge user fees.  While this political battle continues, little attention is being paid to the real needs of people who are dying and their families.] However, health care policies and funding remains primarily a provincial and territorial responsibility.

In the past ten years most, if not all, of the provinces and territories have re-examined their health care strategies. There has been a definite shift in emphasis from hospital treatment of illness to an emphasis on preventive medicine and treating people in their homes as much as possible.

Various provinces have come up with innovative proposals and programs to help meet the needs of patients who are chronically ill or who have a life-threatening or terminal illness.

In New Brunswick the government established a "hospital without walls." This Extra-Mural Hospital was established in 1981 as a "planned response to a combination of forces which were putting pressure on the health care system and which taken together may well have had the potential to overwhelm it. The factors which led to this hospital were: growth of population, high cost of construction of hospitals and other care institutions, high daily costs of keeping patients in institutions particularly in sophisticated high-technology hospitals, over-emphasis on institutionalization which developed after World War II, the changing pattern of disease (a shift to more long-term degenerative conditions away from short-term episodes of illness), and the aging of the population."

This hospital without walls is a community-based alternative to institutional care. Doctors admit and discharge patients to this homecare program as if they were patients in a hospital. Nurses, therapists, social workers, dietitians and others visit the patient at home to prevent people from having to go to hospital or to return them home sooner. Another goal is to help seniors avoid admission to nursing homes (either short or long term). The hospital also recognizes the invaluable help that loved ones provide to patients in their homes. They cite a British report which estimated that if loved ones no longer cared for the elderly at home it would cost an extra 5.3 billion pounds to the British health care system.

The province of Ontario is also looking at ways to improve the coordination of health care and social services. There is a proposed shift to: health promotion and disease prevention; fostering strong and supportive families and communities; ensuring a safe, high quality physical environment; increasing the number of years of good health for the citizens of Ontario by reducing illness, disability and premature death; and providing accessible, affordable, appropriate health services for all. The provision of palliative care is seen as a continuation of providing health and social services. The implementation and funding policies to make palliative care truly a part of the continuum of care have not been developed yet even though recommendations to do so have been part of government reports for many years. [The resent election of a Conservative majority government has brought serious concerns that Ontario may join its Conservative cousin government in Alberta in slashing health care funding further for economic reasons.  There is little doubt that there are large sums of money inappropriately spent on health care across Canada.  Rather than reduce and reallocate these resources based on a clear understanding of where the money could be best spent, health care budgets are often cut globally to "share the pain" across the board.  This still means that too much money is spent on dubious high technology treatments with unproven results while people are suffering needless pain that could be appropriately treated by re-educated physicians.  The political and economic priorities are, yet again, supplanting the real needs of people who are sick.]

Many provinces promote palliative care as part of their continuing care programs. In Nova Scotia, for example, the 1990 Health Strategy for the Nineties Report discusses the necessity for improved co-ordination and integration of the health and community services needed by people with a terminal illness.

According to Sandra McKenzie, Director of Community Health in the Northwest Territories, palliative care is an integrated part of home care, long term care and hospital based services. The extent to which palliative care can be provided at home varies with the family's ability to provide support, the degree of nursing care required and the length of time involved. Another consideration is the many small communities spread out geographically across the territories. It is difficult to provide all the necessary services to every community but many are successful provided in a linked system of support. This linked system includes 48 health centres and six hospitals as well as the physicians' offices and continuing care programs.

In British Columbia the 1991 report of The Royal Commission on Health Care and Costs recommended some innovative strategies for changing the provincial health care systems. For example, it recommends that patients and their loved ones who provide care at home participate more actively in decisions about what type of home support that should be provided and who will provide it. It further recommends that family members might be paid as home care workers in appropriate situations to help offset the costs of professionals providing care at home.

Specifically for palliative care, the B.C. report recommends programs in each community be coordinated, if possible, by volunteers working in partnership with local hospital and home care programs. These programs should include uniform guidelines, assured access to home nursing and home support, immediate access to community hospital beds, transfer of a portion of existing hospital and home care program budgets and the selection of palliative care teams from existing care providers and volunteers. Furthermore, the province would provide drugs, supplies, equipment and services necessary for in-home palliative care at no cost to the patients. [This, however, is not the case.  New Democratic Party governments have been no more successful at reallocating their health care dollars to provide better homecare to all who need it.  People in British Columbia still have to pay the costs of medications and/or supplies (normally paid for if one is in hospital).  They also have to pay for any nursing care provided between 11 p.m. and 8:30 a.m.]

Our Health Care System Does Not Treat All of Us Fairly

The palliative care philosophy is patient-family centred and designed to meet the personal, cultural, and religious needs of individual patients and families. Our health care system, in general, recognizes diverse needs but is incapable of meeting those needs because of the immense size and complexity of the various provincial systems. Palliative care is, at present, a simpler and more flexible model of care, and can, therefore, avoid some of the inequities of our present health care system.

To understand why palliative care is necessary it is important to understand some of the problems of unequal treatment of people inherent within our health care system.

Cancer 2000 is a federal government-funded Canadian Cancer Society effort to look at the future of cancer care in Canada. One of the many reports presented to the Cancer 2000 initiative was submitted by the Members of the Panel on Cancer and the Disadvantaged. They concluded that "factors such as socioeconomic status, education, place of living, gender, age, mental or physical handicap and ethnocultural background, as well as one's genes, have been shown to produce inequalities in many areas of health." The limited information they were able to find on the inequalities of care in Canada confirmed that inequalities in care do exist especially for older people, Aboriginal peoples, women in general, poor people and some ethnocultural communities.

In the introduction to their report they wrote about the widely held belief that universal health care systems like the ones in Canada and Britain would "lead to a narrowing of the gap in health status between the rich and the poor." This belief was shattered in Great Britain at least by the publication in 1980 of The Black Report, the report of the Working Group on Inequalities in Health. They concluded that people at the bottom of the social scale had much higher death rates. This was true regardless of age. In 1988 Margaret Whitehead confirmed these findings. Canadian studies have similar results (see J. Epp, 1986; National Council of Welfare, 1990).

Our health care system does not treat all of us fairly. Women, immigrants who do not speak English well (or French in Quebec), people with disabilities, elderly Canadians and aboriginal people are all at risk of not receiving the same degree of care as white, middle and upper-class men. Palliative care faces similar difficulties but its simpler and more flexible model has a greater likelihood of meeting the diverse needs of individual and family needs. At present, however, most of the people served are white, middle-class, English speaking (Francophones in Quebec) Canadians. Most of the professional caregivers and volunteers I see at palliative care conferences are also from this same group of people. We are not yet meeting the needs of most people who have a terminal or life-threatening illness in Canada but the hospice care philosophy is the best model, to date, to address their needs.

How Many of Us Are Dying and Why

How many people die in Canada every year? What are they dying from? How many people receive palliative care?

According to Statistics Canada there were 26,833,000 [27,297,000] people living in Canada in 1991. The most recent statistics available (1988) [1990] show that 190,011 [191,956] people died that year, with between 70-80% of them dying in hospitals.

The following list tells us what people died of during 1988:

57,861  heart disease (30.45%)

50,756  cancer (26.71%)

13,450  stroke (7.08%)

15,979  respiratory disease (8.41%)

9,436  accidents [4,355 in motor vehicles] (4.97%)

3,492 suicides (1.845%)

39,037 other (20.54%)

190,011  (100%)

[The following lists tells us what people died of during 1990:

75,089 circulatory diseases (39.1%)

52,425  cancer  (27.3%)

16,272  respiratory disease  (8.5%)

13,057  accidental and adverse effects (6.8%)

     (includes 3,798 motor vehicle & 2,064 falls)

6,994  digestive system diseases  (3.6%)

5,472  endocrine disease  (2.9%)

4,855  nervous system diseases  (2.5%)

17,792  other  (9.3%)]

More recent information gives us figures for people with AIDS: 5,010 reported AIDS cases, and 3,180 deaths.

Dr. Ralph Sutherland and Jane Fulton estimate in their 1988 book, Health Care in Canada, that less than five percent of dying people in Canada receive palliative care through formal recognized palliative care programs. They further estimate that perhaps 10% of cancer patients may receive palliative care. If we take these estimates as accurate then about 5,000-7,000 people received palliative care in 1988 most of whom had cancer. That means that over 100,000 people died with a terminal or life-threatening illness without receiving palliative care through a program. Furthermore the vast majority of people with end-stage heart disease, strokes, respiratory illness, and neuromuscular illnesses are not receiving palliative care at present in Canada. Some may have received palliative care in spirit (either at home or in hospital) but the vast majority would not have received the various supports they needed.

Across Canada our health care system and governments are identifying the need for more palliative care. However, there is very slow political will to make the necessary changes. Our flawed health care system continues to treat people unfairly -- not intentionally, perhaps -- but because of the size,  complexity, and inappropriate allocation of resources within the system. So the physical, emotional, spiritual and informational support that patients and family need remain unmet. Less than five percent of Canadians are receiving hospice care similar to Frank's care (see Chapter 1). Some others receive elements of hospice care through their family and community supports. Many more, however, run the risk of Mary's scenario (also in Chapter 1). Is it any wonder that euthanasia, which provides a quick and controlled end, is so popular when the alternative for so many people is uncontrolled pain and mismanaged symptom control? What is clearly needed is more palliative care both through formal community and hospital programs and through informal hospice care provided at home.

The point is not to institutionalize dying or to spend billions of dollars providing unwanted services to people who are dying. The point is to provide supports to those who are dying and their families. The point is to give them back control over their lives just as they had before they became sick.

Chapter 4  Analysis of Palliative Care Today

We have seen that there is not enough hospice care available in Canada. Although specific statistics are not available as yet it is easy to see that 345 programs across all of Canada cannot meet the needs of over 100,000 people who have a terminal or life-threatening illness. When you add (a rough estimate) of five family members per patient that is about a half a million people who may want either formal or informal palliative care. Most of these people do not know that palliative care exists and therefore do not ask for it. Palliative care at present in Canada is generally limited to patients with cancer or AIDS and most of those 55,000 people are also not getting sufficient palliative care. Those who do receive referrals to palliative care programs are often referred too late and have already suffered needlessly. Those who do receive the full benefits of informal and formal palliative care are the best spokespeople for the movement yet we rarely ask them to speak on behalf of hospice care.

The following statistics of hospice care programs in Canada come from the latest Canadian Palliative Care Directory, 1990 [1994] edition. This directory is available for $12.00 from The Palliative Care Service, Royal Victoria Hospital - R6, 687 Pine Avenue West, Montreal, Quebec, H3A 1A1. Their phone number is (514) 843-1542. Included in this directory is a list of most provincial palliative care associations and full descriptions of programs available across Canada.

The number and type of palliative care programs across Canada change every year. Some are cut because of budget restraints while elsewhere new ones begin. Some are run within the health care system while others are community based and raise funds like all not-for-profit organizations must do in Canada.

You can find out about hospice programs in your area by checking with your phone book, provincial palliative care association, local hospital, family doctor, church/synagogue/temple, homecare program or city/provincial government.

If you do not want to use a palliative care program or if there is not one available in your area you can form your own support team with the help of your family doctor, homecare, and your friends and neighbours. June Callwood in Twelve Weeks in Spring describes how one woman, Margaret Frazer, had a support team to allow her to stay at home until she died. In the 1992 edition of my book Choices there is a chapter on how to organize your own support team as well.

Analysis of Hospice Care Programs

The following statistics show the distribution of palliative care programs across Canada in 1990.

Table 1

Alberta: 25 programs

British Columbia: 63 programs

Manitoba: 10 programs

New Brunswick: 11 programs

Newfoundland: 8 programs

Nova Scotia: 20 programs

Ontario: 143 programs

Prince Edward Island: 5 programs

Quebec: 41 programs

Saskatchewan: 18 programs

Yukon: 1 program

Northwest Territories: no separately identified program

Total: 345

The programs listed in Table 1 do not include AIDS Committees that provide palliative care because that information is not yet available. Nor do the figures include informal or beginning programs that did not make the last (1990) edition of the directory.

Of the programs listed 38% are in the major provincial cities and 62% in smaller cities or towns/regions. Many palliative care programs began when people in an area decided that more care was needed for people who had a terminal or life-threatening illness. Community palliative care organizations evolved mostly in smaller communities rather than big cities. In larger cities palliative care was begun on the initiative of medical caregivers within a hospital system.

[1994. Table 1.

Alberta29   programs

British Columbia87   programs

Manitoba13   programs

New Brunswick  9   programs

Newfoundland19   programs

Nova Scotia30  programs

Ontario157 programs

Prince Edward Island             8 programs

Quebec57 programs

Saskatchewan37 programs

Yukon  2 programs

Northwest Territories               1 program

Total 449 programs

The programs listed in table 1 (1994) include some programs that specialize in palliative care of people with HIV and AIDS.  There are a total of 162 groups which provide information, education, and public awareness about people living with HIV and AIDS.  Some of these 162 groups also provide palliative care support services.  The figures in Table 1 do not include informal or beginning programs that did not make the last (1994) edition of the directory.]

Some of these programs help both adults and children but most concentrate on adults. Some services provide 24-hour care. Some provide bereavement support to family members after the death of a loved one. As noted earlier, different programs include some or all of the following members: nurses, doctors, pastors, social workers, volunteers, physiotherapists, occupational therapists, psychologists, pharmacists, dietitians, music and art therapists, and an educational coordinators. These people may work full time for the program or work when needed.

These programs are located in hospitals, in long-term care facilities (e.g. nursing homes, chronic care hospitals), and in a free standing hospice (only 3-4 available in Canada to date). In a hospital there may be a palliative care team that comes to the patient anywhere in the hospital and/or they may have a special palliative care unit.

There was actually a decrease in the number of programs in Canada from 1986 to 1990. In the report to Cancer 2000 Task Force by the Expert Panel on Palliative Care the following statistical analysis was presented. In 1986 the Canadian Palliative Care Foundation surveyed programs and found a total of 359. In 1990 that number is down to 345 with Alberta losing the most (down from 42 to 25). There has been an increase in community hospice programs (from 84 in 1986 to 105 in 1990) and a decrease in hospital-based programs (from 150 to 114). More hospital palliative care programs have been transferred to long-term care facilities (24% in 1990 versus 6% in 1986). Home care programs in existing community agencies now equal 48% of the total programs. There has been an increase in designated palliative care beds from 588 in 67 programs to 767 beds in 98 programs.

The shift to more community hospices is partly an economic one. Governments have not begun to fund palliative care programs in hospitals so some hospital programs that were pilot projects have had to close down. To meet some of the unmet needs of people who were dying, community groups began to visit patients and families in their homes and in hospitals. They raised money and awareness in the community about hospice care and incorporated themselves into community hospice groups. Many of these community groups began in smaller towns and cities where it is easier to get media attention and community funding.

[1994 statistics, however, show a dramatic increase in the number of programs from 345 in 1990 to 449 in 1994.  Part of this dramatic 30% increase is the result of many agencies expanding their services to include palliative care.  As palliative care is becoming a more accepted program and as provincial health care budgets are emphasizing community care more than in the past, organizations such as community nursing agencies, local Cancer societies and hospitals have expanded what they do to include community services for people labelled as dying.]

Economical Analysis of Hospice Care

Adam Linton, former president of the Ontario Medical Association and a London physician who died recently of cancer wrote a summary of what Ontario could do to improve health care and reduce costs. One of his conclusions was that the "public is constantly being told that much of medical care is not of proven value, and this is probably true."

Linton pointed out that many medical tests, treatments and operations are not proven effective but constantly performed. The Expert Panel on Palliative Care's Report to the Canadian Cancer Society's "Cancer 2000" task force estimated that "probably 75% of the total health care costs for a [patient's] life time" is spent in their last year of life. Were all the tests, treatments and surgeries necessary? Linton, and many others with similar experiences, would probably have said no. Too many people die in an intensive care unit (ICU) who should never have been there. They do not need high technological cures when they are dying. They need the compassionate and medically appropriate care for people who have a terminal or life-threatening illness. Dying is not a disease. Dying is the last stage of someone's life. People should be as pain free and alert as possible to enjoy this time, as best they can, with loved ones.

The Expert Panel on Palliative Care's Report to Cancer 2000 reported that the last year of life for a cancer patient in Canada is extremely expensive ("probably as much as 75% of the total health care costs for a [patient's] life time"). They concluded that even a slight shift in patterns of care for that last year of life would have great impact on costs for the health care system. These shifts would come through limiting relatively ineffective but expensive cancer therapies. "By questioning the goals of treatment, ensuring that the patient is giving informed consent, and by providing an active alternative approach in advanced disease, palliative care decreases costs. Governments and Cancer Centres must call into question treatment protocols that show minimal change in survival but add to the overall burden of suffering."

Later in their report the panel concludes that the "top priority for palliative care planning is to expand and upgrade palliative care services available in the home. This shift is partially in response to consumerism -- people want to die in their own way and in their own space. However, the major motivation for this shift will be economic....In order to increase the proportion of advanced cancer patients living and dying in their home (perhaps up to 30-40%), we must find mechanisms and incentives to increase family participation. We should follow the lead of Scandinavian countries by reimbursing family members for lost income and expenses related to caring for cancer patients in the home." In the spirit of palliative care it would be natural to extend this recommendation to family members caring for those suffering from any type of terminal illness.

In a proposal submitted to the Ontario Provincial Government, Sunnybrook Health Science Centre together with the Whitelight Hospice Foundation prepared the an analysis of hospice care versus general hospital care. The Foundation is a community initiative to establish a free-standing hospice for cancer patients in Metropolitan Toronto. Sunnybrook Health Science Centre is a major university teaching hospital in Metropolitan Toronto.

They argue that a lack of community alternatives for palliative care in the home means that hospitals must provide services to patients with a terminal illness. These patients take up beds intended for patients needing high technology tests, surgery, and treatments (acute care) to help cure their illness. To use hospital beds, intended for acute care, to provide palliative care is a misuse of health care dollars.

While home is the preferred location for much palliative care there are people who are unable to stay at home and need the services of either a free-standing hospice or a hospital. The Sunnybrook-Whitelight proposal estimates the savings of having a free-standing, 30-bed hospice facility with 85% occupancy the first year as follows:

Type of Bed                Cost Per Patient Day                       Cost Per Year

Acute Care

Cancer Bed$600.00$5,584,500

(average costs

do not include

doctor or operating

room costs)

Hospice Bed$273.79$2,548,300

Cost Savings$329.21$3,036,200

This saving of $3,036,200 assumes that for each hospice bed there is a reduction in the number of cancer beds. Yet the increase in the number of registered cancer patients at the Toronto Bayview Regional Cancer Centre, also located on the campus of Sunnybrook Health Science Centre, has gone from 441 in 1980 to 4,251 in 1990 (almost ten times as many new cancer cases). It is unlikely, therefore, that cancer beds would be reduced by establishing a free-standing hospice. However, the hospice beds would provide the kind of services patients need while at the same time more patients asking for active cancer treatments would have acute care beds available for them.

According to many leaders in the field of hospice and health care, the most cost effective method of caring for people with a terminal illness is achieved by care provided to patients in their own homes. With a co-ordinated effort of home care, family support, community and/or hospital-based outreach programs, the cost for taking care of someone at home is substantially reduced especially since much of the work is done by family members, friends and/or volunteers. More specific data needs to be collected to support this claim. Hopefully, with the development of provincial and federal associations for palliative care there will be increased efforts to keep statistics on the number of patients and family members served, the costs for the different types of services and the physical, emotional, spiritual and informational benefits that such programs provide over those offered in traditional health care.

Wolf Wolfensberger, in his 1984 article, cautions us about concentrating on costs, especially those paid for by governments. He says that in the United States federal funding regulations have perverted hospice programs in at least three ways. (a) Free-standing hospice services must be cheaper than hospital care. (b) Home care must cost less than free-standing hospice care. (c) Hospice services for people who are dying can only be funded for a very short period, e.g. six months. "The first two provisions are designed to protect and support the medical and nursing home economic empires. The third one imposes a tremendous dying role and expectancy upon the people served. Imagine accepting a hospice-for-the-dying service, and seeing your (six month) `deadline' approaching! If you survive it, you feel almost obliged to apologize to all the people who fully expected you to die, and who now are saddled with all sorts of inconveniences and unpleasant obligations by the fact that you are hanging on or -- God forbid -- even recover." (p. 158)

Why We Spend So Much Money on Health Care

In 1987 [1991] Canadians spent about $47,935,000,000.00 [$67,144,000,000] on health care, or about 8.98% [9.92%] of the Gross National Product. That means that for every $100 of goods and services we produced in our country, $8.98 [$9.92] went to health care. Imagine the costs to individuals and families if they had to pay these costs themselves. In the U.S., for example, families paid $1,742 per year for health care insurance in 1981. By 1990 that cost was on average $4,296. It is expected to increase to $9,397 by the year 2000 unless there are radical changes to health care funding in America.

When trying to understand modern health care costs in Canada we must understand that health care has become an industry rather than a charitable organization. Before World War II Canada was a manufacturing, mining, forestry and farming country with health care often provided through religious and charitable organizations. Since the war health care has become a major service industry in Canada and many people now depend on the health care system for their jobs. Until recently, health costs knew no limit and was almost totally funded by taxes, therefore, there was little accountability for costs or the benefits of various treatments. How can this be so? One reason is that health care has become oriented towards medical emergencies requiring highly trained professionals and technological interventions. Consider the differences over the past 50 years in how we "treat" birth, aging and death. Once natural processes that happened at home, they are now often in-hospital events requiring medical intervention. We are one of the last countries in the world to recognize the value, for example of midwives.

In fact many women can have babies without high technology interventions while still receiving pain relief if they choose. Many people who are dying do not need or request high-cost intensive care near the end of their lives. Aging is not a disease that requires people to be taken from their homes and put into nursing homes. In 1988-89 there were 5,101 residential facilities in Canada with 237,437 beds for people labelled with various diseases or disabilities, physical and mental. Of those institutions 2,239 were for "the aged" with 166,177 beds. In a survey of these institutions for older people 1,405 facilities reported that their total costs were $2,665,415,000 ($1,705,956,000 for staffing). Aging, itself, has become an industry in Canada unlike most every other country in the world including European countries and the U.S.

It is a national embarrassment that so much of our national income and employment comes from taking people out of their homes and putting them into institutions where trained professionals can "treat" people who do not know the alternative forms of care available in other countries. It is a national shame that must be changed for moral, as well as economic, reasons. People should not be taken from their homes to receive care (often unnecessary care). Whenever possible, people should be able to stay in their homes and have services brought to them. [This will only happen when we take some of the vast amounts of money we spend institutionalizing and 'treating' people unnecessarily outside their home and provide that money for families who want to care for a loved at home.  Right now, fewer and fewer families have the luxury of having someone stay at home to care for others.  We have put women in the unsupported role of caring not only for our children but also our elders.  When they cannot remain at home, many of them often feel tremendous pressure and guilt at having to rely on others to care for their loved ones.  At the same time we have more and more single mothers who are sandwiched in between caring for their children and their own parents.  Two of the largest populations of poor people in Canada are single mothers and single women over 75 who are often quite frail as well as poor.  The industries built around these women are taking away their dignity as well as their independence.  Palliative care, especially that provided at home, can help change how we help people who are dying and put some perspective back into how Canadians view health, family and community supports, dying and death as natural phenomena.] Palliative care, especially that provided at home, can help change how we help people who are dying and put some perspective back into how Canadians view dying and death as natural phenomena.

Politics of Palliative Care

The field of palliative care is young in Canada. Palliative care formally began here with the opening of the palliative care units in Winnipeg and Montreal in 1975. Since then the number and types of programs have increased as have the competition for funding and promoting one type of program over another.

There are some people who argue that good palliative care means good medical care. The assumption is that patients should receive all the physical, emotional, spiritual and informational supports they require through improved modern medical care. Others agree with this general argument but also believe that palliative care should be seen as a medical specialty and accorded special space and policies within a hospital to provide optimum care.

Palliative care is not equal to good medical care, however, although perhaps it should be in the best of worlds. Palliative patients require the help of professional doctors and nurses, but, palliative care is more than physical or medical care. It is a philosophy of care that requires individual attention for every patient and family and is almost impossible to receive in a general hospital's treatment wards. Some people require greater support from medical and nursing staff while others require more support from family, friends, spiritual counsellors, social workers or various kinds of physio or occupational therapy. One model cannot provide all forms of palliative care regardless of the good intentions of the proponents of that model.

While leaders in the field discuss the importance of patient and family control over their lives, a real competition continues between programs for public support and funding. The philosophy of palliative care is sometimes lost to the daily administrative and political in-fighting within the field. To avoid this, more effort must be made to co-operate and co-ordinate the care given to patients and families. Patients and families are perceived as key members on a palliative care team yet many programs have no patient or family representation on their boards, standing committees or committees looking at standards of patient care. People with AIDS have clearly shown us that most people with a terminal or life-threatening illness have a real contribution to make in improving palliative care. They may one day receive palliative care and surely their perspective, concerns and needs must inform decision-making bodies.

The creation of provincial associations and the new Canadian Palliative Care Associations are hopeful signs that the leaders within the field will bring together the various providers of care to improve the overall quality and numbers of programs available to Canadians across our nation.

If, however, the competition, especially between institutional and community hospice programs, is not addressed quickly then palliative care will remain a patchwork of programs that meet the needs of some individuals and families but will not be able to help enough of the more than 100,000 people who die of terminal or chronic illnesses every year. If palliative care providers do not begin to speak more with one voice in Canada then we will lose our power and credibility to affect changes in our health care and social services. If palliative care providers do not continue to respect and promote the various models of care, even at risk of losing some of their own plans, then people with a terminal illness will continue to die in general hospitals without the supports they need. If palliative care providers do not examine how programs can include people with heart, lung, and neuromuscular diseases then palliative care will become a philosophy and program limited only to people with cancer and or perhaps AIDS. If palliative care providers do not begin to speak for women caregivers who have done most of the  palliative care at home then these women will continue to struggle on without support and recognition. If palliative care providers do not begin to speak more for the children who are dying, for the children whose parents, grandparents or siblings have died, then these children will not receive the community and school supports they need.

Many people in palliative care want to take leadership roles to build their ideal programs. There are no ideal programs and there will always be competing programs and services. All of us must begin to recognize the primary importance of the patient and family and the secondary importance of the programs and services. If not, I fear that palliative care will be folded into the traditional health and social services provided in Canada where administrative and bureaucratic considerations take precedence over people. Canadians have an opportunity to improve palliative care, and through this improvement, all health care if we work together with, and on behalf of, patients.

We need the various groups (patients, families, professionals, volunteers, policy makers and funders) involved in palliative care, health care and social services to meet to establish a long-term plan. They need to examine the universal palliative care options in the greater context of all health and social issues (e.g. poverty, housing, unemployment). They need to examine human and financial costs of proceeding, or not proceeding, with expanded and enhanced hospice care. They need to examine how health care and social service resources should be reallocated to meet the needs of all people who are dying and while also providing the supports needed by the families. They need to examine who does, and who should, be making health care decisions including treatment decisions made in the last year of someone's life. They need to examine alternatives to institutional care (i.e. hospitals, nursing homes, and other health care facilities) without just "dumping" people back into the community without adequate supports as happened in Ontario with de-institutionalization of mental health facilities. They must examine how to educate professionals and the public alike about their rights and responsibilities in making health care decisions. They must examine the role of families (often women) who provide care at a great financial loss with inadequate support. This collective of people must do more than write another health care report. As a group they must demand and affect changes that will improve services and reduce mismanaged care.

What will happen if professional health caregivers' goals do not become secondary to a dying patient-family's goals? I fear that attention will continue to be drawn away from the issues of palliative care and move toward euthanasia as the solution to meeting the needs of people who are dying.

Dying for Care: Hospice Care or Euthanasia

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Copyright © 1992, 1995 Harry van Bommel

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