Chapter 5  How Do We Get the Palliative Care We Need: Standards of Care

In 1991 I wrote an article for the December edition of the Pain Management Newsletter on palliative care standards. This chapter is based on that article and discusses the importance of standards in ensuring quality palliative care.

Standards are measuring tools to help professionals, volunteers, patients and families evaluate the type and quality of care they are giving or receiving. Standards are based on a clearly defined philosophy of palliative care. A palliative care program begins by defining its philosophy and goals and then writes out standards of care to put that philosophy into action. Standards can help palliative care programs improve their overall quality of service while making sure they remain true to their philosophy. Standards can, however, also restrict flexibility in providing care to individuals rather than to groups of patients. Thus the question of standards represents a challenge facing palliative care programs across Canada.

A discussion of standards is often as dry as one on a government budget but it is just as important. Canadians should understand how palliative care is designed, delivered and evaluated. Without broader participation of people within, and outside, of hospice care a small, elite group of people will determine what is the best kind of hospice care for the rest of us.

For people interested in palliative care it is important to understand how programs develop and how to evaluate their effectiveness. Philosophical statements, standards and policies and procedures will tell you a great deal about a specific program's approach to meeting the needs of individual people who have a terminal or life-threatening illness.

Palliative care standards are currently being designed by local and national organizations across Canada. These organizations generally lack significant input from patients, families, patient advocates, allied professionals and services, and community members.

Who decides on the design and quality assurance of standards?

At present there are many groups and organizations discussing and developing palliative care standards. These groups include The Canadian Council on Health Facilities Accreditation (CCHFA); Ministries of Health, professional organizations (e.g. Ontario Medical Association), community hospices, hospital based palliative care programs, local/regional/ provincial/national associations of palliative care providers and organizations (e.g. Canadian Palliative Care Association, Community Hospice Association of Ontario, Hospice Victoria, the British Columbia Palliative Care Association), advisory groups and individual programs.

Within this long list, however, there is no input from patients, families, patient advocates and the general community, nor is there much effort by many of these organizations to establish palliative care standards that reflect the differing alternatives of free standing hospices, community hospices (volunteer led), hospital-based palliative care programs, and regional palliative care services. There is also insufficient input from front-line allied professionals such as therapists, pharmacists and dietitians within palliative care and allied services such as home care, and other community services that assure continuity of care.

Overview of Current Work

The Components of Palliative Care Standards

Health and Welfare Canada's Palliative-Care Services: Guidelines for Establishing Standards sets out a functional classification of a palliative care program. This program design incorporates the components of administration, symptom control, psycho-social support, spiritual support, volunteers, bereavement support, program evaluation and training. Only the first four components are required for a clinical (medical) program. By definition these guidelines present a clinical model of palliative care. In using words such as "preliminary" to describe programs that do not have one of those four required components, the guidelines minimize the immense impact that many volunteer-based community hospice programs provide. There is the implication that such programs do not "measure up."

Furthermore, by insisting on such rigid standards, we may be excluding effective programs from future accreditation or licensing, which funders may require one day. Health care traditionally requires some form of accreditation for provincial funds. It will be standards that determine which programs will qualify. Therefore, we must be cautious about limiting the diversity and creativity of many programs that do not fit into a more traditional medical model of care.

Certainly we need standards of patient care. However, this does not mean that groups of health care professionals alone should determine what constitutes a palliative care program. Program standards can limit a vital element of the palliative care philosophy, namely, providing a flexible and adaptable level of care depending on the client's (patient and family) expressed needs. From a client's perspective, a community hospice program of volunteers working together with a family physician, homecare and the hospice's own nursing staff might be the best possible program. By limiting the options, a rigid set of standards could in effect deny a person the sort of program best suited to his or her situation. The fact is, one program is not inherently better than the other. There are different programs because there are different people with different needs.

Choosing the Major Components

How then do programs choose the major components of care within their standards?  There are at least two systems available. The first is a synthesis of the standards work already done by such groups as the CCHFA (Canadian Council on Health Facilities Accreditation) coupled with specific research presented in the literature. There is already substantial consensus on these peer evaluation standards. [Note: accreditation councils establish standards based on review of organized health delivery by professional peers rather than consumer evaluation.] The second is a client-centred and client-evaluated system.

The CCHFA 1990 standards provide an approach in which the emphasis is on organization, policies and procedures but the core standards still emphasize patient care components. The standards are: (1) statement of purpose, goals and objectives; (2) organization and direction; (3) policies and procedures developed by staff, management & internal and external services and communicated to patients and families; (4) human and physical resources; (5) orientation, staff development and continuing education; (6) patient care; and (7) quality assurance.

The advantage of using the CCHFA standards is that these standards must be adhered to by 1992 in all accredited health care facilities across Canada. Therefore some consistency of program and professional skills evaluation between institutional and community programs would be provided.

The second system is a client-centred evaluation system. [Professor Wolf Wolfensberger of Syracuse University in New York State is a leading author in the field of evaluation of human services.  His work is based on the impacts of services on patients or clients regardless of how well intended the services are.  His objective analysis is not based solely on patient or client satisfaction but looks at how the services they receive impact not only their competencies and abilities but also their image within society.  For example, someone receiving hospice services may be highly satisfied with the help they get relative to what they experienced in their local hospital.  Since their satisfaction is based on a comparison between hospice care and hospital care, they have no objective standard to compare the effectiveness of their hospice care.  In their minds "anything is better than what I had before".  Hospice care needs an evaluation tool that is more objective and specific to hospice care.] Wolfensberger has designed an evaluation process in social services that could be adapted to the field of palliative care. Among other components, his methods measure degree of individual /client control, the degree to which  program and staff encourage client self-determination, the importance of physical location and layout of services, the use of signs and symbols, continuity of care, the human aspects of care, confidentiality, and advocacy.

However it is achieved, I recommend that any palliative care standards should be a combination of a peer evaluation and client evaluated system of standards and quality assurance.

Questions to Consider

The following is a list of concerns/questions that might be addressed before any group finalizes its palliative care standards and quality assurance programs.

Recognize the individual and group values and how they are reflected in the standards. Will those values incorporate the beliefs and needs of clients who have different cultures, languages, educational backgrounds, economic abilities, religions, sexual orientations, and personal histories?  Do the values incorporate people who have diseases other than cancer?  Is the group primarily a white, middle/upper class, educated, English/French speaking one?  If yes, how can the program encourage greater diversity of representation in staff, clients and volunteers to reach a wider community?

Do the standards reflect a program approach, a discipline approach or a client-centred approach?  A program approach (similar to the "Palliative Care Services Guidelines") emphasizes the interdisciplinary aspects of palliative care. The discipline approach defines the professional and clinical standards for each discipline (medicine, nursing, chaplaincy, etc.) similar to acute care settings today. A client-centred approach would concentrate on the palliative care philosophy of having the patient and family as the central component to any program or its evaluation.

Are patients and families involved in helping design and evaluate standards?  If yes, are they involved to the same degree as other members of the palliative care team?  If not, why not?  People with cancer, heart disease, AIDS, neuromuscular diseases, and others are all capable of discussing their needs and wants (indeed, they already do some of this through support groups, with palliative care teams, with the media, and with families).

Do the standards imply that dying is a disease or illness or, more appropriately, do the standards imply that people are going through a final process of living?

Do the standards incorporate a quality assurance program that meets both the client and staff needs?  A general rule of QA is that you get what you inspect more often than what you expect. Standards do not ensure behavioral and attitudinal changes without effective senior management, a sound philosophy (mission statement), and role modelling of expected behaviours.

Do the standards include what quality assurance experts call RUMBA measurements to evaluate standards?  RUMBA represents measurements that are relevant, understandable to clients and staff, measurable (quantifiable), behavioral and achievable over time and under predictable circumstances.

Are interpersonal skills clearly defined in the standards, for example: ensuring privacy, confidentiality, informed choices, concern, empathy, honesty, tact, and sensitivity to meet the individual, social and technical performance expectations?

Is palliative care clearly defined in the mission statement and goals?  Does the program include only people who have a life expectancy of less than six months or does it assume that palliative care begins with the onset of illness?

Do the standards recognize that people die as they have lived and that families react to a loved one's dying as they react to other major stressors?  (Therefore, patients and families will not want to behave in accordance with standards that run counter to their traditional ways of living.)

Do the standards recognize that no one will die "perfectly" regardless of what the standards are?  When we offer choices, people will not always choose what professionals think is in their best interest. Standards should allow for that flexibility and sensitivity to client and family needs.

Further Considerations

We will all be patients one day unless we die very suddenly. We must recognize the invaluable contribution that clients, front-line staff and volunteers have to make in designing and evaluating palliative care standards. Many other industries (and remember that health care is an industry) recognize the role of "customer satisfaction" in designing, implementing and evaluating their services.

We should use this historical opportunity to set the future trends for health care in Canada. In the United States many hospice programs are bogged down in funding formulas, administrative headaches and management issues. Critics suggest that many have forgotten their original mission and have mirrored the difficulties faced by acute care facilities.

There is competition between palliative care programs for money and political recognition. Professionals within the field must cooperate in their efforts to improve palliative care in Canada. Professionals must establish concurrent client-centred standards to balance the peer evaluation standards that are being designed at present. We should develop, over time, an independent method of evaluating programs that incorporate a client-centred approach similar to Wolfensberger's approach. This independent method would supplement the peer evaluation methods of groups such as the CCHFA.

Patients and families must understand both their rights and their responsibilities for working together with professionals and volunteers to provide the best care possible. Patients play an active role in taking care of themselves as do their families, yet we often only evaluate the professionals and volunteers in our programs.

Chapter 6  Reflections on Palliative Care: Voices from the Front Line

The thoughts, ideas and concerns of Canadian leaders in this field are especially important at this time in Canada hospice care, as provincial and national associations and governments begin to develop longer-term plans.

Although this chapter highlights the thoughts of some palliative care experts there is a whole group of people not represented -- patients and families. I do not often work directly with patients and families so I have no consistent access to people who receive palliative care services and those who do not. At the end of this book is a questionnaire for them. At some point I hope that this expert group of patients and families will have their thoughts, beliefs and hopes recorded for public debate as well (perhaps in a future edition of this book).

Modern palliative care began in the late 1960s in England with the work of Dame Cicely Saunders and her St. Christopher's Hospice. It began in Canada in 1975 with the opening of a two palliative care units; one in St. Boniface Hospital in Winnipeg and the other at the Royal Victoria Hospital in Montreal.

What has been accomplished in Canada in 17 years? I asked palliative care experts, both professional and volunteer, to summarize some of the major successes of Canadian palliative care. What follows is an overview of their responses. I have tried to quote comments that represent the views of a number of these leaders to show the broad outlines of agreement and conflict in various areas of concern.

Pain and Symptom Control

Most of the palliative leaders recognized the immense improvements in pain management especially for people who have cancer. Dr. Balfour Mount, the physician who was instrumental in opening up the palliative care unit at the Royal Victoria Hospital listed "improved pain control" as the first success of palliative care in Canada. Keep in mind, however, that since fewer than five percent of Canadians receive services from palliative care programs, there is still a long way to go. The skills and techniques are available now to provide effective pain and symptom control if only enough physicians acquired and practised these techniques. There are physicians practicing effective pain management in Canada without working through a palliative care program but these skilled physicians still remain in the minority.

Dr. Dorothy Ley, the founder and past president of the Palliative Care Foundation adds that "we are better at understanding pain and managing it. We are not perfect. There are lots of doctors that still deny the basic tenets of pain management. Young doctors appear more interested in the principles of pain management and some are even interested in the broader philosophy of palliative care."

Volunteer Initiative and Community Hospices

Another success mentioned by many of the leaders in the field was the initiative shown by community volunteers in developing and maintaining community hospice and hospital palliative care programs. Heather Balfour, Executive Director of the Community Hospice Association of Ontario says the "reliance on volunteers by many community-based hospices has meant the grassroots development of a cost-efficient and dedicated human resource for hospice/palliative care." Catherine A. Rakchaev, Executive Director of the Dorothy Ley Hospice, points out that hospices emerged from the grass roots level in many cases. Without the volunteers many of these programs would never have started. These volunteers include health care professionals: people working in health care who helped create programs that were not present in their own settings. Dr. Margaret Scott, Associate Professor of Medicine and Provincial Palliative Care Consultant in Newfoundland adds that "many community-based programs are giving excellent care."

Patient-Family Awareness and Rights

Trinity Hospice Toronto members summarize community hospice programs as "client focused where the client is in control, the family and client are cared for as one unit with mutual supports, team efforts and community involvement."

Gertrude Paul, a Palliative Care Consult Nurse in Brockville, says that "a greater public awareness of dying with dignity in institutions and at home" is a success of hospice care. Her colleague, Barbara Noonan, confirms that "palliative care has made death and dying more an approachable subject and made people aware of their rights." A lawyer with specific expertise in palliative care (who prefers anonymity) states: "the greatest success is the increased public awareness of a patient's right to choose a course of treatment and, if necessary, to reject certain courses of treatments. However, this is an ongoing process and greater efforts to educate the public are required."

Marilynne Seguin, Executive Director of Dying with Dignity and a nurse herself, believes "the introduction of palliative care and hospice services in Canada have greatly improved the options for the terminally ill in Canada. Dying With Dignity unreservedly supports both the trend and the movement. At the same time we cannot lose sight of the fact that the choice of care is the prerogative of a person who is making decisions about the end of their life. For some persons the services provided either by a palliative care team or through hospice is the very best alternative for their personal situation."

Wilma O'Connell, also a Coordinator of Palliative Care (Brockville) summarized this point. "Improved communication and acceptance that the patient has the right to accept or refuse treatment and should be supported in their choice."

Development of Programs

Palliative care may have started in many different ways across Canada but as Wilma O'Connell explains with such enthusiasm: "Palliative care is a reality in our health care system! It does enhance the quality of life for our patients and families. The terminally ill have the right to be heard and cared for by professionals and volunteers who believe it is a privilege to support the dying."  Her colleague Cheryl Chapman (a Community Outreach Coordinator) says that more people see "palliative care as the norm versus the exception."

Larry Grossman, Physician Manager of the Palliative Care Unit at Scarborough Grace Hospital notes as another success the "development of both hospital-based and community-based programs in spite of lack of funding. The involvement of ALL members of health care team in patient care and planning is a further success." Perhaps this interdisciplinary model will be translated to other areas of health care as well. Dr. Dorothy Ley agrees that "professionals in the various field are beginning to work more together in teams. There is also growing medical and nursing acceptance of the other allied professionals (e.g. social workers, chaplains, therapists) as part of the support team helping patients." Dr. Balfour Mount reminds us of some of our "models of care that have been copied elsewhere" indicating the excellence these programs have achieved.

Professor Tom Malcomson of George Brown College in Toronto, who teaches issues of dying and death, sees one of the key areas of success in palliative care as the "many different groups and networks established to provide palliative care. The fact there is no systemization of the whole range is good. Hopefully, they will remain fractured and providing different programs" [to meet the individual needs of people who are dying rather than fulfilling bureaucratic criteria of services].

Palliative Care Units for Teaching Professional Caregivers

Dr. Margaret Scott stressed "the establishment of teaching units at Montreal, Winnipeg, Edmonton, Quebec City, Ottawa, Halifax, Vancouver and Newfoundland" as major successes. She believes another success is the "medical school recognition of education needs with specific examples of the Universities of Edmonton, Toronto, McMaster, Ottawa, Dalhousie and Memorial University in Newfoundland."

Cost Effectiveness of Community Palliative Care Programs

Jackie MacKenzie, Executive Director of Hospice of London, believes that community hospices are "a cost effective outreach to a great number of clients and a positive benefit to families. Their emphasis on health promotion for family caregivers at home is invaluable."

Palliative Care Associations and Conferences

Several of the palliative care leaders mentioned as successes the development of palliative care associations and conferences. Shirley Cooper, a bereavement counsellor in Brockville, believes that "Canadian palliative care's greatest successes are the development of provincial organizations and also the yearly Canadian Conferences and International Conferences" held every two years in Montreal. Dr. Larry Grossman believes these organizations "have taken the lead in education, guidelines to be followed, standards to be aimed at etc." in the improvement of palliative care services across Canada. Dr. Balfour Mount is justifiably proud of the Montreal International Congress which he has spearheaded as "a forum for exchange of information and a catalyst for growth" which people coming around the world to attend.

The Human and Spiritual Successes

The Reverend Sally Eaton, Chaplain at Toronto's The Wellesley Hospital, sees an "increased public awareness of death, the grief process, and a beginning to see death as part of life again." Dr. Larry Grossman sees a "broadening of vision from pain and symptom control to a more holistic approach to patients."

Dr. Dorothy Ley believes that the general public and professionals alike are more aware of the needs of people who are dying. "I know there is a growing feeling that you can die at home. It's tough and difficult and is not always possible but it is more acceptable then 15 years ago. There is a growing acknowledgement of the spiritual nature of dying and illness and I think palliative care has done that. The importance of the chaplain is finally being recognized."

Steven Waring, a hospice volunteer with Hospice Dufferin in Orangeville, Ontario, believes that hospice brings "an awareness to the community -- society -- of the needs of the dying person, the family and the bereavement process. Hospice can bring humanity to an often fearful experience."

Bridging Past Successes to Future Development

Dr. Elizabeth Latimer, Director of Palliative Care, Hamilton Civic Hospitals, sees palliative care "as being in the early to middle stages of developing. We are more aware -- now we need to ask questions: (1) Where have we come from?, (2) What do we have?, and (3) How many (what %) of people in need are being served?"

This chapter has answered part of her first question. Chapter 4 identified some of what we have now by way of palliative care programs in Canada. The answer to her third question requires national, provincial and local coordination of data collection to get a real picture of how many people, patients and family members, are being served out of the total population that would like these services.

Summary of Successes

  1. improved pain and symptom control techniques (although not understood and practised by enough doctors)

  2. initiative of grass roots to begin hospice programs

  3. early concentration on the palliative care philosophy of patient-family centred care

  4. increased public awareness of palliative care (still a long way to go) and increased discussions on issues of dying and death

  5. increased understanding of patient's right to accept and refuse treatments

  6. increased acceptance of palliative care as part of the continuum of health care with a multi-disciplinary approach to care

  7. increased acceptance of palliative care in hospitals, in patients' homes and in free-standing hospices

  8. increased number and quality of palliative care conferences and workshops for professionals and volunteers

  9. increased cooperation between professionals, volunteers and provincial-national associations.

Where do we want to be in the year 2000? The next chapter looks at some of the personal visions people have for Canadian palliative care in eight years time.

Chapter 7  Palliative Care in The Year 2000: What We Need to Do

What should Canadian palliative care look like in the year 2000? What needs to happen to get us there? Again I turned to the leaders in the field.

Variety of Choices for Patients

Most responses regarding hopes for palliative care spoke of the provision of a wide range of program choices for people who are dying. This range of programs includes informal home-based support teams, community hospices, and hospital-based programs.

Professor Tom Malcomson who teaches on issues of dying and death wrote "If someone I loved was dying, I would want to take care of them in the home (theirs, mine or ours). I would want to be able to provide pain medication, know the contraindications, know the side effects, provide proper bed care and nutrition. Friends, neighbours and family would help in the care of the dying person. Money would be available to help defray costs and lost income while I cared for my loved person. It would not entail a system of health care professionals taking the responsibility and human contact away and assuming responsibility for the dying person. It would be difficult, painful and troubling (feelings of every mix would be present), but it would be a more natural, human, connected death for the other person and myself."

Carol Derbyshire, Executive Director of Hospice of Windsor, is "a firm believer that the back bone of a good palliative care program is the volunteer component. Volunteers who are carefully screened and well trained and monitored are a tremendous asset to the organization. On the other hand, I feel that it is important to have paid staff also because someone must be accountable at all times. Staff should also be well screened and trained. This area of work draws many `needy' people. We all need to be needed but a balance must be maintained. Often times staff forget whose needs we are here to meet. This can be disastrous if not identified."

Shirley Cooper, a Bereavement Coordinator, states her "personal vision of palliative care for the 21st century as home-based [programs] complimented with a staff of visiting nurses for personal care and other professionals to help deal with the psychosocial and grief aspects. Hospitalization should be available, however, for respite, chemotherapy, and monitoring pain."

The Reverend Sally Eaton wants to see hospice care "available to all, with more free-standing hospices, teams in all major hospitals and/or dedicated hospice beds. In smaller communities I would like to see volunteer and/or paid teams that crossover between community and hospital and have more volunteer teams like All Saint's Hospice (Ottawa) and Trinity Hospice Toronto to augment in-home family care."

Dr. Larry Grossman would like to see hospice care "integrated into primary practice or community health care -- institutional care should be a safety net, not a catchall. We need much better coordination and communication between hospitals, primary care doctors and community services. New programs should all have an outreach component. Need better access to beds for emergency admissions and resources for `crisis' intervention in the home."

Evelyn MacKay, former nurse, therapeutic touch practitioner and palliative care volunteer and teacher, agrees with Dr. Grossman. In her vision hospice care is "away from the seduction of high tech hospital units! People should be dying at home but with such trips to small palliative care units as are necessary to maintain comfort. Increase teams of educated caregivers (such as Victorian Order of Nurses), increase supplies for physical illnesses -- so we must expand the provincial homecare programs. Free-standing hospices are isolationist and tough for staff." This last comment is in contradiction to, for example, Reverend Sally Eaton's comment above.

Steven Waring, a community hospice volunteer notes, hospice care should be "providing excellence in trust, pain control, comfort and humanity for the dying person and family as a unit of care. It should be totally available and accessible on a community basis. We should be shaping society's attitudes towards death and the whole of life -- the community of life-caring for dying persons as part of society."

Jackie MacKenzie adds that along with improved co-ordination of programs without duplication of services must come "more family support to encourage caregiving at home and discourage fear, anxiety and exhaustion which often culminates in frustrating and costly admissions to institutions."

Dr. Dorothy Ley believes that palliative care units should be available only in teaching hospitals so they can be used for research and teaching the body of knowledge of palliative care to other professionals. In other hospitals, palliative care teams should be used to instruct the other hospital staff how to provide good palliative care including spiritual care, counselling, excellent hospice medical and nursing care.

Members of Wellington Hospice in Guelph, Ontario who want to see the "widespread application of the hospice concept based largely on a volunteer basis. Free-standing hospices should be in each community."

Funding Issues

There is disagreement around the issue of who should fund hospice care. Many people would like to see palliative care receive full government funding while others prefer mixed funding sources (i.e. government and community fundraising) so that no single funder can regulate or dictate the kinds of palliative care a group provides.

Doctors Larry Grossman and Balfour Mount agree that adequate funding for palliative care beds should be provided to meet the needs of a growing population as part of the continuum of medical care provided in hospitals. Catherine A. Rakchaev believes that we "need a coordinated, integrated, multidisciplinary service which is funded and marketed" with services available in long-term care and acute care facilities, free-standing hospices and home supports. Education in all those facilities and in the community is required."

Cheryl Chapman writes "It's time this field of expertise was acknowledge as a bona fide necessary service -- too much time is `wasted' by service providers raising money when time and effort could go to direct patient care."

Laurie Bennett, Executive Director of Hospice of Peel has concerns about government funding however. "While I'm aware that most people who are involved in community-based hospices want and are lobbying for funding from the provincial government, I have some serious reservations and concerns about going this route for funding. I feel that there is a real danger if community-based hospices were to receive either core funding or more than about 20% of their needed revenues from government because we could quite easily lose our autonomy and very quickly fall into the bureaucratic model, red tape, paperwork and rigid eligibility criteria of most government institutions. There is also the danger that the cost of community-based hospice services would increase simply because more money was available. Because most hospices don't receive government funding at present, we are forced to provide our services within the budgets of the money we are able to raise ourselves. Good quality and much needed services are being provided by community-based hospices now without government funding in most cases. Do we really need a lot more money and would more money (i.e. government funding) mean more and better hospices services?"

A separate funding issue is the way that physicians are paid for providing services. Most physicians in Canada are still paid on a "fee for service" basis. This means that they receive a set fee for every service they provide. Such a fee structure encourages physicians to provide as many services as possible within a day for them to earn the best income possible. In palliative care where one of the greatest skills required is time spent communicating with patients, the fee-for-service system does not work. Time spent visiting patients in their homes and spending an hour or so going through the various choices that patients have is not paid well by the fee-for-service system. Dr. Dorothy Ley believes that if we want physicians to spend time with us and to provide excellent palliative care supports to us, then they must be compensated for their time, expertise and transportation costs. Physicians who provide palliative care support in people's homes are presently penalized with much lower incomes than their colleagues and they provide this service at a cost to their personal and family lives as well since palliative care is not easily practised during regular business hours. [Provincial governments are looking more seriously at paying some physicians salaries rather than a fee-for-service basis.  They are doing this for economic reasons rather than sound medical practice.  However, the result be the same that more and more physicians will accept a salary and reduced patient case load so they can spend the time necessary to provide excellent health care and excellent palliative care.]


Education is seen as a key factor in the hospice care of the year 2000. Dr. Balfour Mount would like to see academic programs in all Canadian medical schools with Canadian multi-centre clinical trials held for research and teaching purposes. Dr. Margaret Scott would like to see physicians taught palliative care as part of "the full medical care of all `end stage' patients." Doctors need to acquire a "full awareness of therapeutic options" available to them to help patients who are dying.

Dr. Elizabeth Latimer's views on palliative care education include the "need to work with patients and families but we must also try to do the more difficult tasks of (1) educating colleagues, (2) public education, (3) dissemination of information. These tasks will not always be popular with health professionals because they need to learn and change, but I believe that most patients will be best served if more and more practitioners can become committed to palliative care and educated about it."

Heather Balfour says "I believe the established and new palliative care programs are suffering from a lack of public recognition. The general public needs to be educated as to what hospice/palliative care is and needs to create a lobby for adequate resources to provide palliative care."

Dr. Balfour Mount agrees that there must be increased pressure on our political representatives, along with increased public grass-roots demand, to ensure the proper place of palliative care in meeting the needs of people with a terminal or life-threatening illness.

Dr. Louis Dionne, Director General of Maison Michel Sarrazin (Sillery, Quebec), summarizes his views in concise language "Teach...Teach...Teach." Through focusing on provincial palliative care associations, involving the community, and through teaching professionals and volunteer groups we can "promote palliative care to the society."

Broadening the Scope of Palliative Care

Dr. Dorothy Ley wants palliative care to broaden its base, regardless of the disease. The palliative care philosophy of care should be available to people regardless what their illness is. It must be available when someone's illness is not curable but when we can, and should, provide active, compassionate care so we can stop the "there is nothing more we can do" attitude in health care.

Virginia Clark Weir, Manager of Continuing and Palliative Care at Scarborough Grace Hospital believes that at present "palliation is associated with cancer for the most part -- many patients suffering from long-term illnesses other than cancer would greatly benefit from a more universal palliation approach. There is a need to work to allay the FEAR of health care workers in dealing with patients suffering chronic and end stage disease and impending death. Best way to allay these fears is often to communicate by example." [At present there is very little formal palliative care for people with degenerative, neuromuscular, heart and respiratory illnesses.  We have limited palliative care to mostly people with cancer, some with AIDS and even fewer with ALS (Lou Gehrig's disease).  Health care providers are beginning to see palliative care as synonymous with terminal cancer care and this is a great mistake.  Literally a 100,000 people dying from all terminal and life-threatening illnesses a year can benefit from either informal or formal palliative care.  Most are getting neither.]

Jackie MacKenzie wants people to receive care earlier on in their illness as well. "Supportive care should be provided at the time of life-threatening diagnosis. This support could be through individual and group teaching and support sessions, with a consistent support present as client and family approach death and ultimately bereavement. Key here is empowering people to make decisions appropriate to them based on correct information. I see more clients wishing to remain at home with institutions or free-standing hospices meeting client or family emergencies only."

Through earlier referral to palliative care programs (e.g. at time of diagnosis of a terminal illness) Marilynne Seguin believes that another broader role for palliative care is that of acting as a patient advocate. The role of advocate "is not to sway [a patient's] decision in any one direction, but rather to assist the patient, the family and health care providers in examining all alternatives and then to support the patient in their choice of care....The role of the advocate: (1) to ensure the person is fully informed of their diagnosis and prognosis, (2) ensure they understand as fully as possible the implications of the same on physical, emotional, social, financial and spiritual aspects of their life, (3) explore all alternative decisions that could be made, (4) when the person has reached their decision, to work toward resolution, and (5) seek healing within the family in dealing with the death."

Standards of Care

Many people within the field of palliative care want to see regional, provincial and/or national standards of professional and volunteer care provided to people with a terminal or life-threatening illness. From standards would come evaluations of services provided to patients and families and this quality assurance would finally provide a statistical analysis of what Canadian hospice care is doing well and not so well.

Dr. Dorothy Ley believes that along with peer review standards of care (see Chapter 5) there must also be clinical standards set for physicians, nurses, social workers, chaplains, etc. to ensure that the highest quality of professional care is taught, provided and evaluated.

Physician standards of clinical practice, for example, would include what knowledge and expertise they would need to have to help patients who are dying. The standards would describe expectations of physicians to provide satisfactory pain and symptom control. The standards might describe the expectations of a physician's role in a multi-disciplinary approach to health care in general, and within the specific area of palliative care.

Spiritual Concerns

Many people within palliative care recognize the immense value of a patient and family's sense of spirituality. No where else in our medical system is the spiritual element so readily accepted as in palliative care.

The Reverend Sally Eaton believes we must go farther with the spiritual elements of palliative care. There is a "great need to give the spiritual care component the place it deserves alongside psychosocial, physical, emotional components of patient/family care. By this I do not mean having a pastor or prayer book handy; rather that all disciplines ought to be trained to recognize the spiritual dimension and refer to a professional when appropriate. Spiritual questions have to do with questions of meaning, the purpose of life, the BIG questions that we ignore until they hit us in the face in a time of crisis. They are universal, and relatively few people today have religious ways of dealing with these questions."

Dr. Dorothy Ley adds the dimension of gratitude in her presentations on the importance of spirituality in palliative care. She believes that some people need help in understanding their new limitations and help in looking at all they have to be grateful about in their present situation rather than lamenting what they no longer can do. This journey of recognizing the happiness and love evident at a time when someone is very ill is spiritual and powerful in helping people identify the meaning of their own past and the meaning of their life at present.

Helping others identify what they have to be grateful for now also helps caregivers identify what they have in their lives that deserve their gratitude. Few people work in palliative care who do not examine their own lives in a new light of what is important and what is not as important as they once thought. Professionals and volunteers alike in palliative care often change their life goals and priorities and try to spend more of their time and efforts at improving communication with their own loved ones.

However, people in palliative care do not always take the necessary times to look at how they can support each other. Many palliative care programs have team meetings and sessions to discuss their thoughts, concerns, feelings of loss when someone dies. This is one reason why the turnover in professional staff is so low in palliative care. However, people who spend most of their time caring for other people sometimes forget to take care of themselves.

Cheryl Chapman sums up the need for caregivers to take better care of themselves and each other in this way. "Support one another -- be gentle with each other and ourselves. We can't keep going on without human compassion for each other. I have talked with many palliative care support personnel from Europe, U.S.A., Canada, Australia, New Zealand, Britain and a lack of support is prevalent internationally, not just in `your hospital' or `your province'. Remember why we are in this work -- for the patient and family -- and therefore when experiencing `territorial' behaviour amongst colleagues, think of who is getting lost in the argument -- the patient and family. Work as a team, respect roles of everyone, acknowledge work well done, give the pats on the back and songs of praise! "

The Human Dimension

Palliative care is about caring for people who have a terminal or life-threatening illness and caring for their family. As we saw above, good palliative care also means that professionals and volunteers take care of themselves and each other. Joanne C. Oosterhuis-Giliam, Clinical Director, Hopewell Children's Homes in Ontario, believes that true palliative care comes from the concept of "do not join, become." The palliative care movement is not about joining a new `cause' but becoming a part of a philosophy of living the reflects and role models our commitment to other human beings through the palliative care philosophy of physical, emotional, spiritual and information supports for people who are dying.

Dr. Dorothy Ley believes this comes through professionals and volunteers learning to observe the people they are helping, getting to know them personally as people first, learning to communicate in ways that the person understands, and understanding that each of us as individuals cannot do it all -- we need the help, support and practical skills of other professionals and volunteers. Palliative care requires people who care about others.

When provided well, Dr. Ley further believes, palliative care also means that as few different people as possible are involved in that care. At present someone living at home until their death may have more than 20 people coming from homecare, visiting home nurses, community hospice groups, etc. One homecare service may send out five different nurses to see the same patient in one week rather than consistently sending the same nurse who can build a rapport with the patient. Dr. Ley contends strongly that these scheduling issues must be addressed so that a minimum number of consistent caregivers can provide true hospice care at home or in a hospital.

The Reverend Sally Eaton suggests that "part of a vision [for palliative care in the year 2000] would be to have death and grief `out of the closet' in our society and this can only come as fear of death, dying and illness is reduced." This reduction of fear can come about through what Dr. Larry Grossman calls "REACHING OUT -- people with terminal illnesses are still alive, still have feelings, still have desires, still have goals, etc. Often patients and families feel shunned, or are reluctant to ask for support because of a fear of being treated like lepers. We need to recognize and capitalize on people's strengths and previous patterns of behaviour -- relationships, hobbies, humour, etc. Need to provide an environment of caring and celebration, not distance and depression."

Professor Wolf Wolfensberger, Professor of Special Education at Syracuse University and developer of a client-centred evaluation tool of Human Service programs, summarizes the human dimension of palliative care. "We must distinguish between programs that respond to the specific needs of patients and family versus programs that respond to the needs of policies and procedures, laws, funding formulas, and professional pressures for conformity." In his view, only programs that provide true client-centred support can come close to simulating the ideal situation of a person living at home with the informal supports of family, friends, neighbours, and community resources (including the family physician) thereby avoiding the need for intrusive or paternalistic health care.

In his 1984 article he describes what he feels is an appropriate service for people who are dying. "Such a service also needs to be based on a positive ideology that does not succumb to any of the extremes of death denial, death obsession, or death glorification. Fortunately, we have some models. Some families have assumed the care of dying persons with minimal outside help, and some communal bodies have cared for their dying members -- sometimes for years. Further, there are seven homes for poor dying people in the United States operated by the Hawthorne Dominican Servants without any subsidies from government or charge to patients or families. In fact, St. Christopher's in London was partially modeled on them in the first place." (p. 158)

Summary of Needs

  1. provide a wide range of program choices to everyone who wants/needs it

  2. increased information to patients and families of what they can do and what they can expect

  3. increase the volunteer component

  4. increase home care supports to patients and families with hospital back-ups for pain and symptom control

  5. increase teaching of professionals in university teaching hospitals and through professional conferences and workshops

  6. increase co-ordination of programs

  7. address funding needs

  8. increase awareness and education of patients, families and the community in general

  9. broaden base of patients who are served by palliative care to include people who have illnesses other than cancer or AIDS

  10. refer patients earlier to palliative care programs so that they receive the physical, emotional, spiritual and informational supports when they need them most

  11. incorporate role of patient advocate to help patients understand their various options

  12. decide on the types and standards of care

  13. increase understanding of the spiritual component of care

  14. increase the amount of emotional supports provided to professional and volunteer caregivers

  15. increase patient-centred care.

Dying for Care: Hospice Care or Euthanasia

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Copyright © 1992, 1995 Harry van Bommel

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