PART 1

The following Introduction and two chapters (i.e. all of Part 1) have been written by Dr. Dorothy Ley and are a compilation of various speeches, articles and interviews.




Introduction: Straight from the Heart


And because right is right,
To follow right
Is wisdom in the scorn of consequence.
Anonymous


Palliative care is about living and the meaning of life. It's about loss and grief and joy. It's about giving and receiving. It's about caring and sharing. It's about tears and laughter. These short words may sound trite but they are not. They are very powerful words when acted upon. In short, palliative care is about life, not death. We must always remember that.


Palliative care is a philosophy of care, not a particular kind of health care. It is rooted in hospice, a thread that goes back to a dusty road in Galilee and the story of the Good Samaritan. It is founded on the principle that we are our brother's keeper. Both Christian religion and spiritual care have been at the heart of hospice from its beginnings in the fourth century A.D. when the monk Fabiola established a hospice in pagan Rome for Christian pilgrims from Africa. The tradition of the medieval Knights Hospitaller was based on the injunction of Christ in the 25th Chapter of the Gospel according to St. Matthew, "Inasmuch as you have done it unto one of the least of these, my brethren, you have done it unto Me."



Palliative Care: Past, Present & Future

The medieval hospices -- whether the great fortress-hospital of St. John at Rhodes, the elegant hospice in the French town Beaune, or the myriad of small hospices associated with monasteries throughout Europe -- were dedicated to the physical and spiritual care of the sick and the dying, and the Christian burial of the dead. Whether the traveller was a knight on the journey to Jerusalem, or a poor beggar on the journey of life, the ancient hospices were way stations, resting places, a place of care and concern for both the body and the spirit. These people were called "My Lords the Sick" and that is how they were treated.


But the world changed. Society changed. With the waning of monastic influence and changing social patterns, the number of hospices in the old sense decreased. A different pattern of care developed -- the hospital. Gradually, with the advent of the Industrial Revolution, our western society increasingly valued order, efficiency and social discipline and came to regard a human being as an economic unit. "My Lords the Sick" became an admitting number and a disease code on a chart. Modern health care became the repository of those who were unable to contribute to an industrialized, super achieving society or a place to repair its damaged tools and get people back to the work place. The repository health facilities we call nursing homes (an oxymoron) or chronic care hospitals. The repair facilities we call hospitals or health science centres.


Palliative care has certain fundamental characteristics that set it apart from this industrialized, high-technology care we ordinarily provide to sick people. In the first place, palliative care is provided to people who are terminally ill, whose care is aimed not at curing a disease but at improving the quality of their life of someone who is dying. Dame Cicely Saunders, the British founder of the modern hospice movement said that hospice care is there to make it possible for people who are dying to live fully until they die.


Death is not a disease. The process of dying is not a clinical diagnosis. People who practice palliative care must be aware of the differences between a patient and a terminally ill person. In the acute care system, patients of necessity give up their autonomy, their decision-making power, to their caregivers. People in hospice should be able to take back that power. They, and only they, should have the right to chose the nature of the care they will receive and where it will be given. And, dare I venture, when it will be stopped. Freedom of choice not to receive any more aggressive treatment that attempts to cure an illness or the choice not to use a ventilator or receive artificial feedings must be an integral part of any palliative care program -- and it must extend from the patient to include family and friends. Freedom of choice, however, does not extend to the so called right to chose assisted suicide or euthanasia as these practices will certainly lead to the deaths of vulnerable people in our society.


Apart from the underlying philosophy, what is it that makes palliative care unique? Cicely Saunders laid down the essentials for a program over twenty years ago. They have not changed. First, a skilled interdisciplinary team -- not just multidisciplinary, but interdisciplinary. There is a great difference. We tend in health care to put people from different disciplines in a room and tell them they are a team. In reality, all they are is a multidisciplinary group.


In general, we have failed to teach health care professionals team dynamics, to make them understand the different nature of leadership in an interdisciplinary setting. One of the great strengths of palliative care is the concept of the interdisciplinary team. No one person can provide palliative care. Every member of the team is equal, and "the team" includes the person who is dying, their family, and every person involved in their care, from volunteers to housekeeping staff, home support people and doctors and nurses. Each one is equally important.


At present, not all people who practice hospice care share that same palliative care philosophy. We come from different backgrounds and with different basic assumptions about how to value life. The patient-centred palliative care philosophy is broad enough to encompass most religious and fundamental beliefs. Therefore, until we share the same palliative care philosophy, we will continue to repeat the communication and treatment errors of the past decades. Interdisciplinary team work and a common philosophic base are required for successful hospice care and must become a priority for all hospice programs. To those well on the road to this realistic goal, they need to continually renew their commitment to their common philosophy and team approach, especially as new members join the team. For those programs still grappling with these questions, their priority must begin with these basics -- immediately.


Pain and symptom control is one of the major components of palliative care. Without it, the rest is rhetoric. It is impossible to counsel dying persons if they are in pain. We now have the knowledge and the drugs, for example, to manage physical cancer pain and most symptoms. Unfortunately 90% of people admitted to hospice programs are admitted because of mismanaged cancer pain. Why? In my opinion, it is in part because of the attitude of doctors and nurses (and to a certain extent of patients) that people with cancer have pain and little can be done about it. I have heard this expressed by home care nurses and physicians in the last six months! In part too, it is because good pain and symptom management requires time and painstaking attention to detail. It cannot be done with "standing orders." Time, in our modern health care system, is a scarce commodity. It should be said, however, that pain and symptom control has improved in the past decade. There is a growing awareness of new drugs, new techniques, improved methods of management. There is a growing willingness to find the time.


There is also a growing awareness that our skills at managing pain and symptoms for people with cancer, and more recently for people living with AIDS and amyotrophic lateral sclerosis (ALS), should be extended and expanded to all people with a terminal or life-threatening illness.


Accepting the patient and family as the unit of care can make care very untidy. Not all families either want to be, or can be, part of care. An increasing number of people live alone. Family economics may make it impossible for family involvement. Not all patients want their families to be involved. And yet this, like the interdisciplinary team, is one of the great strengths of palliative care. It shifts the focus from a patient with a terminal illness to a person who is part of a dynamic, ongoing life situation -- that will continue after their death. With patient and family as the centre of care we can never become complacent in believing we are meeting all the needs of all those we care for. At best, we provide them a safe, comfortable environment where they have the control to live out their last days as they see fit.


Palliative care, or hospice care as it is also called, began in Canada in hospitals. It is said of Canadians that we are the most institutionalized society in the world and that if we don't have a purpose-built institution for a new idea we will design and build one. To a degree this has coloured our perception of what constitutes such care. In Canada, we have emphasized institutional care to the detriment of community care. The result has been that community care in all its aspects has been neglected, or at best, provided as an interim measure or as a temporary adjunct to institutional care -- not as an alternative. As well, we have tended to transfer the institutional model into the community setting without giving too much thought to the impact of that transfer on the community in which it is given.


The institutional model continues to be a major driving force of palliative care in Canada because that is where many of the professional leaders of palliative care still work. Are we really talking about palliative care when we talk about beds and units and cost-benefit analysis and institutions? Are we not forgetting the basic definition of palliative care? Our acute care institutions were designed, built and staffed to practice acute care medicine. Our entire health care delivery systems has been designed to do just that. In the face of changing patterns of demography, public expectations and government funding we seem to be trying to force new functions into old forms.


Our chronic care institutions, for example, are acute care institutions modified for another use. We even talk about extended care! Extended from what? We can no longer allow ourselves the luxury of developing palliative care programs for patients who are terminally ill of malignant disease alone. This country and the rest of the Western world is faced with the phenomenon of a rapidly increasing elderly population.


I have some real concern that palliative care will remain a WASP (White Anglo-Saxon Protestant) middle class phenomenon paid for by government insurance and limited mostly to people with cancer and AIDS. Who will help those who have other terminal or life-threatening illnesses? Where are the visible minorities in palliative care? Who represents the needs of other religious groups? Who represents the views of poorer, marginalized Canadians who are dying?


So far we have been content, and we have been able, to institutionalize a high percentage of the elderly in our population. We have been accused of warehousing them. There is a growing feeling that such treatment is no longer acceptable. It is not economically acceptable and it is becoming increasingly less acceptable socially. The elderly population in the year 2000 will be better educated, better travelled, more socially aware and less likely to be passive about their care than the preceding generations. It is absolutely essential in our future management of the elderly, and the incurably ill as well as the terminally ill, that we apply the philosophy and principles of palliative care to provide people with the physical, emotional, spiritual and informational supports they need.


The institutionally-based mind set has inhibited our ability to provide for the full development of active integrated home care in palliative care, although this should be where the greatest emphasis is placed. It is interesting that surveys of Canadian palliative care programs in 1986 and 1990 revealed a dramatic increase in community-based activity with little change in hospital programs. The emphasis in the community has been on independent and volunteer-driven programs, although in 1990 there was an increase in those associated with community agencies and an associated increase in the professional components. The present thrust in Ontario towards the provision of community based, long-term care, coupled with a decrease in hospital beds may well provide the impetus necessary to the development of a balanced, integrated palliative care system. Who knows? Success may come from adversity.


If one accepts the principle that the patient and family are the unit of care, then it follows naturally that palliative care is for the family too. There is a tendency, once a person dies, to pause in remembrance and then get on to the next person who needs care. The family is still there, still our responsibility, still has its needs for care. Every palliative care program must build into itself active bereavement follow-up. Every bereaved person, no matter how strong, how balanced, how well supported, needs to know that the people who cared for the person they loved remember them in their grief and their loss. It may only be a phone call or a card or a brief visit, but it is part of palliative care. In some 10% of the families, the team may recognize the need for professional support -- and should be able to initiate it.


No matter the setting (home, hospital, free-standing hospice) the same kind of care and the same quality of care must be provided. There may be special skills or special team members required for different settings but the care must be the same. The patient and family should have a choice of care and of setting. Whether such choice is limited by government or professional fiat or by lack of facilities, the end result is the same -- it is impossible to provide good palliative care without freedom of choice. Unfortunately, in most of Canada, that choice does not exist. It must be the goal of all who work in palliative care to create a system in which it does exist.


How does one create an ideal system of palliative care? One of the main methods of creating ideal palliative care is to return to the philosophy of providing physical, emotional, spiritual and informational supports. We have done quite well at providing physical and emotional supports to those people lucky enough to receive formal palliative care but we have only paid lip service in many cases to providing good spiritual care. We lack a coherent value base from which to provide such care and that is why so many programs are going into directions that hospice care was never intended to go. Ideally hospice programs should be small to meet the individual needs of people who are ill and their families. We should minimize the professionalization of the natural, compassionate care that is palliative care. We are concentrating so much on policies, procedures, funding formulas, and government involvement that we are losing sight of why hospice began and who we, as care providers, are in business to serve. We are shifting to a model of care where our loyalties are with the system of care (regardless of the organization) rather than with the person who is dying. These are grave problems demanding immediate attention and resolution.


What are the barriers to a palliative care system? Aside from our inconsistent approach to the palliative care philosophy, there are practical deficiencies that continue to face us in the 1990s. They have changed little from the 1980s and they include: too little professional staffing, too little integration of services and cooperation between programs and facilities, insufficient education for professional and volunteer staff, incomplete practical standards of care, and insufficient, ongoing funding.

One can focus on any one of these and make a good argument for its importance. To me, however, the single greatest challenge is educating people.


There is a strong "death" education movement in both the United States and Europe that believes that one starts in the school system to change attitudes towards death and dying. The International Work Group on Death and Dying and Bereavement has developed assumptions and principles concerning death education that address our society's prejudices and fears concerning death. They should be mandatory reading for everyone in palliative care (see Appendix). The ability to provide good palliative care is affected by society's attitude -- which is mirrored in the attitude of our patients and their families.


No system of palliative care can develop without educated professionals. At present we do not teach medical students, nurses or other health and social care professionals the principles of palliative care at the undergraduate level except in a spotty fashion. There is almost no classroom teaching and very little clinical experience provided. Some universities are beginning to take tentative steps to correct this. There is now a chair in palliative medicine at the University of Calgary, the University of Ottawa and I believe at Memorial University of Newfoundland in St. John's. There is a well-developed palliative care program at Dalhousie University and an excellent one in the University of Victoria -- and a superb one at McMaster University in Hamilton. At the University of Toronto, the family practice training program is providing clinical and classroom experience for some of its interns, both at Mount Sinai Hospital and in the community.


But education is more than teaching doctors and nurses pain and symptom management and the concept of total pain with all its physical, psychological and emotional aspects. It is teaching all members of the team the principles we have just discussed. It is accepting volunteers as active, educated members of the team and providing them with standardized training. It is teaching health care professionals team dynamics where everyone shares in the decision-making and responsibilities of the team. It is teaching them how to counsel and when not to. It is demonstrating hand-holding or not doing anything at all. It is teaching them that case conferences are not just reviewing care plans! It is giving them attitudes that will last their professional lifetimes, whether they become high tech experts or family physicians. It is, in fact, changing the way they view the people for whom they care. Building on that is the need to create teachers and researchers and specialists in palliative care who will educate the next generation.


What are the basic components of palliative care? The basic foundation of care in 1981 was pain and symptom control followed by counselling (emotional support) and spiritual care, if there was time. By this decade I have come to recognize that a more appropriate foundation is spiritual care followed by counselling and pain and symptom control. Pain and symptom control must come first in the practical application of palliative care but under the foundation and attitude of spiritual care. Spiritual care is what sets palliative care apart and gives it its unique characteristics.


Death is a spiritual event. Its nearness creates a desire to identify and strengthen what is of value in one's life. We want to tidy up the ends, to put first things first. To be unable to do so can generate a desolate feeling of meaningless. To me that is the essence of spiritual pain -- to feel that one is meaningless or that one's life has had no meaning.


Viktor Frankl, the famed Vienna psychiatrist and survivor of Nazi concentration camps, has reminded us that each must find the meaning in their own life and that no one can tell another person what the meaning of his life should be. Our role as caregivers is to give people the opportunity and the time to work through and solve their own problems -- to find their own meanings. We may need to be no more than a presence. The dying, as Cicely Saunders has said, "Ask only that we watch with them, that we be there." We can give them freedom and space by controlling their physical pain. We can walk beside them on their journey. We can understand them because of our own experiences, our own pain, our own mortality. The concept of the wounded healer is at the root of modern hospice care. We may not understand the specific feelings of someone who is dying but we have our own wounds, our own emotional difficulties and our own unresolved issues.


There are those who might think this is an unnecessary topic for discussion. After all, spiritual care runs through hospice care like a thread. It is one of the pillars of hospice, no matter where you put it -- top or bottom. Or is it? Are we assuming that after the narcotics and the nursing, after the counselling and the initiation of bereavement follow-up, after the service on the hospice floor, spiritual care falls neatly into place on the chart -- particularly if the chaplain has been involved in the final hours or days of care and has been able to talk to family and friends?


And so we go on our way to the next dying person. But 94% of American Hospice Programs surveyed by the Joint Commission on Hospital Accreditation failed to demonstrate adequate spiritual care -- adequate address of people's need to find meaning in their life and in their dying. Although we consider spiritual care to be a fundamental component of palliative care only 58% of Canadian programs have a chaplain.


Spiritual care has been described as the last necessary required revolution in palliative care. One's concept of spirituality is both intimate and personal -- and so it should be, no matter one's age, cultural or religious background. We are spiritual beings deep within ourselves and must bring that spirituality to palliative care. Even in our search for scientific excellence, in our creation of standards, our demands for formalized education and for government funding to provide a model system of care -- we must never forget that we must reach out beyond our narrow interests -- to reach out from our inner selves to the people for whom we care -- all of them. For love is the litmus test of palliative care and spirituality is its heart.



Pillars of Care


Life has loveliness to sell

All beautiful and splendid things;

Blue waves whitened on a cliff,

Soaring fire that sways and sings,

And children's faces looking up

Holding wonder like a cup.

Life has loveliness to sell

Music like a curve of gold,

Scent of pine trees in the rain

Eyes that love you, arms that hold

And for your spirits still delight

Holy thoughts that star the night.

Spend all you have for loveliness.

Buy it and never count the cost.

For one white singing hour of peace

Count many a year of strife well lost.

And for a breath of ecstacy

Give all you have been, or could be.

Sara Teasdale

 

The basis of a good palliative care service involves meeting the physical, emotional, spiritual and informational needs of people who are dying and their families. This requires a skilled, interdisciplinary team of doctors, nurses, pharmacists, clergy, homecare staff, social workers, therapists, dieticians, homemakers, volunteers and others as needed. Most patients do not require the services of all these people. The ideal number is small and based on the expressed needs of the patient rather than the wishes of the team.

This team must be able to provide effective pain and symptom control with the patient and family as the unit of care and as active members of the team (if they choose). There must be an active, integrated home care system to allow most people to stay at home for as long as they like, including to live at home until their death. There must be bereavement follow-up with the underlying assumption that most people do not need bereavement therapy but recognition that someone important in their lives has died.

No palliative care program is effective without providing care for the caregivers. Caregivers go through many of the same physical and emotional ups and downs as family caregivers and they need similar supports. They need others to recognize when a special patient has died. They need to share their skills and knowledge but also their fears and concerns.

All of these components rest on the assumption that the patient has freedom of choice. Some patients may not want their pain and suffering relieved and their wishes must be accepted. They should always have the opportunity to change their mind but never by manipulation. Some patients may not want to resolve family issues and difficulties. Some patients may not even want you in the room with them. These are difficult situations for the caregivers but ones that must be addressed with respect for the patients' choices and with opportunities for them to understand the consequences of those decisions.

In the next four sections, we will look at these four pillars of care: physical, emotional and social, spiritual and informational.



1. Physical Care

There is no Death.

What seems so is transition.

Anonymous

There is growing expertise in the relief of physical pain and the management of symptoms to maintain activity and to provide a degree of independence and self-esteem. Nevertheless, many people continue to suffer unrelieved pain and poorly managed symptoms because of a lack of education and because of faulty attitudes on the part of health care professionals.

My purpose here is not to give a medical lecture on proper pain and symptom management. Books by Derek Doyle, Ivan Goldberg, Larry Librach, Cicely Saunders, and the Expert Advisory Committee on the Management of Severe Chronic Pain in Cancer Patients do an admirable job of this.

The key point to make here is that there is now good evidence that palliative care can relieve virtually all physical discomfort. The vast majority of people can be relatively pain-free and alert until hours or days before they die. People suffer needlessly in Canada at present. This is inexcusable. The knowledge and role models of excellent care are readily available. The notion that people must suffer pain is absurd. Until this simple fact is recognized and addressed, excellent palliative care will only remain possible for a small percentage of dying patients.

The process for managing pain is quite simple. Patients, family members and non-medical health care providers can understand the basics easily. What is required of the physician is careful attention to detail and an ability to listen closely to what the patient says. The physician must make a detailed assessment and take a complete history. When pain is moderate, the patient may receive medication such as aspirin. When the pain worsens, the physician prescribes a mild narcotic such as codeine. When the pain become intolerable, narcotics such as morphine are used. Basically these are the three levels of medications used to treat pain. Other medication may be necessary to deal with other symptoms (e.g. constipation, arthritic pain, a feeling of breathlessness) but for the pain resulting from the terminal illness these are basically the three steps.

The myth that too much pain medication will lead to addiction is just that -- myth. When medication is used to combat pain, there is no "high" associated with its use and, therefore, no addiction. The oft-stated belief that too much narcotic medication results in a patient building up a tolerance to the drug is also untrue: patients survive years on very high dosages of narcotics that a few years ago were considered lethal. Our knowledge of the proper use of medications has resulted in safe and effective practices yet many health care providers and members of the general public alike still believe these myths.

What are the reasons for inadequate pain management? The biggest reason is the inadequate application of current skills and knowledge by physicians and other health care providers. People are not receiving sufficient medication in most cases. Others are not receiving the right medication at the right dose, at the right time and in the right way (usually orally or by suppository) resulting in too much pain or too much unnecessary sedation. The old method of waiting until the pain returned before giving more medication (called PRN -- as required) is outdated and ineffective. There is also a failure to monitor changes in the patient's needs over time and to change the medication or dosage when necessary. There is a failure to use other drugs to work along side those being used to supplement the proper effects. Psychological conditions that ameliorate or intensify pain are inadequately identified and addressed. The consequences of dietary and cultural remedies are not adequately considered relative to the drug treatment being followed. There continues to be a large gap in the availability of pain management services throughout the country which isolates people from different geographic, ethnic, linguistic and financial backgrounds.

Pain management continues to be generalized for most patients rather than individualized to each person's needs, sensation of pain and illness. Physicians will write, and are taught to write, the same order for each patient with the same illness. You can go through charts and find the same prescription for all patients regardless of the patient's own perceptions and needs. Only if there is a noticeable difference, such as a patient weighing less than one hundred pounds, is there a change in the prescription. As well, many physicians continue to prescribe medication "prn", which means that the patient receives medication when their pain returns. Study after study has shown that the most effective pain management requires regular doses of appropriate medication so that the patient does not feel the pain returning.

There remain patients who have difficult pain management situations. However, there are always things one can do to minimize physical pain to tolerable levels using medications, TENS machines, radiation therapy, meditation or prayer, biofeedback, and even surgery. In only the rarest cases (most physicians would never encounter such a case) would it be necessary to anaesthetize a patient suffering extreme pain or discomfort.

Although pain and suffering are generally linked together in the minds of patients and physicians it is important they recognize the distinction between them. We must return to the concept of total pain: the physical, emotional, and spiritual pains that people feel. All pain is subjective and no one should be treated in exactly the same way as someone else with the same disease. Pain and symptom management must be approached on an individual basis and open to the effective use of both medical and non-medical treatments.

Severe pain can be handled if a patient knows its cause, or believes that it can be relieved and that it will soon end. However, even minor pain can be magnified and cause suffering if its cause is unknown or believed to be life-threatening (such as cancer) or if its presence is a symptom of a hopeless condition.

Suffering on the other hand, may exist without any physical symptoms. It is related to one's "self" or personality and is experienced by "persons". People can suffer because of the illness or loss of a loved one or because they feel lost relative to the world or their relationships. People with a terminal illness suffer a series of losses. They vary from loss of physical form from surgery, treatment or disease to loss of freedom of movement, loss of control over their lives or family, financial or professional loss. Ultimately they are aware of the greatest loss of all -- life itself.

The sense of loss, the feeling of being diminished as a person are aggravated by the symptoms of illness -- pain, weakness, nausea, shortness of breath. Suffering occurs and continues as long as the patient perceives that there will be no end to the symptoms of illness and no relief from the series of losses.

The role of the physician and nurse is to reduce both the pain and the suffering. It is ironic that in their desire to relieve symptoms, physicians often aggravate suffering. We must learn to treat patients and not diseases, and set the goals of our treatment to fit their life situation. We must recognize that it is the quality and not necessarily the length of life that is important. The patient's fears of pain, choking to death, or increasing debilitation must be acknowledged and addressed with compassion and skills.

Hospice care was designed with the following concepts in mind: first to relieve pain and symptoms and provide physical comfort for the patient, in a way that will allow them to participate in the life around them, and secondly, to counsel and support the patients, their family and community, and to enhance their involvement in care. Finally, to provide the personal and spiritual counselling needed to maintain the integrity of that patient as a persons, to minimize and relieve their suffering. As Cicely Saunders puts it: "To help you to live until you die".

The other three pillars of care describe some of the ways to provide that support once physical pain and symptoms are relieved.


2. Emotional Care

Prayer for a Very New Angel

God, God, be lenient her first night there.

The crib she slept in was so near my bed;

Her blue and white wool blanket was so soft,

Her pillow hollowed so to fit her head.

Teach me that she'll not want small rooms or me.

When she has You and Heaven's immensity!

I always left a light out in the hall.

I hoped to make her fearless in the dark,

And yet, she was so small -- one little light.

Not in the room, it scarcely mattered. Hark!

No, No; she seldom cried!

God, not too far for her to see,

This first night, light a star.

And in the morning, when she first woke up,

I always kissed her on her left cheek where,

The dimple was. And o, I wet the brush,

It made it easier to curl her hair.

Just, just tomorrow morning, God, I pray,

When she wakes up, do things for her my way!

V. A. Storey

 

Modern hospice care began in a white, Anglo-Saxon, Christian community in Great Britain. We now live and practice hospice care in a multicultural, pluralistic society. Each of us has our own orientation toward death and dying as a result of the ideas and attitudes of persons we associate with dying -- the doctor, the nurse, the funeral director, or the man that drove the car that killed your friend.

This orientation is composed of places -- hospitals (80% of North Americans die in hospitals and 90% of those wish they didn't). It is composed of things. What do we associate with death? The smell of lavender in a quiet bedroom in a beloved home, or, in my case,

remembering my grandmother with her knitting needles and my grandfather with his pipe. Or do we remember intravenous tubes in an intensive care unit of a hospital. The death system is shaped by our experience of death. Our death systems are shaped as well by life expectancy. In Tanzania, for example, life expectancy is 48 years while in Canada it is 78. We think of death in our society in terms of old people in institutions. In Tanzania they think of death in terms of young people at home. The African lives within a village, within an extended family. We Westerners are isolated; trapped within a complex society. I am an individual. If I died tomorrow, I'm not certain that my death would make much impact on the world in which I lived. If I were an African and a grandmother, my death would make a tremendous difference on the world in which I lived.

A fundamental problem in palliative care as it becomes more international, more cross-cultural, is the tension that exists when we come to care for people with different death systems. Culture is a dominant force in determining health, illness and caring patterns for every society. It is essential to understand the health and illness beliefs of other cultures if we are to provide the holistic care that we espouse. The multi-cultural nature of modern society is reflected not only in the diversity of the recipients of care but the caregivers themselves.

How do you explain the needs of a Scottish-Canadian octogenarian to a 28-year old Sikh physician from the Punjab? Or for that matter, vice versa? In carrying out a cultural assessment there are two fundamental principles that should not be violated. Firstly, do not stereotype. Having said that, I know that all of us do stereotype people in order to make sense of our increasingly complex world. Since we stereotype by nature, the reasonable alternative is to find out if your stereotype is accurate. For example, people of Scottish and Dutch backgrounds have reputations for being very frugal in how they spend money or give gifts. If you are working with someone of this background, and it is relevant to your work, find out if this stereotype is accurate for this person. All members within any ethnic group are not identical.

Secondly, do not emphasize differences. Understand the important differences (for example, cultural/religious rituals performed at the time of death) but concentrate on the unique nature of any particular group.

The cultural mosaic affects all components of hospice care whether it be pain management, psycho-social or spiritual supports. In any assessment, there are three factors that must be considered: culture, language, and religion. To provide effective palliative care one must understand: the person's perception of death, health and illness, their tradition of care, the role of the family and community (if any), the perception of the caregivers involved, and the person's spirituality.



3. Spiritual Care

Theology

The blade is sharp, the reaper stout,

And every daisy dies.

Their souls fluttering about --

We call them butterflies.

Joyce Kilmer


It is crazy to believe that religion is the major motive behind providing palliative care. Spirituality, however, is a major factor. Dying and death are spiritual events. Providing spiritual support is not something that happens automatically within hospice, nor is it the sole responsibility of chaplains or clerics to provide spiritual support.


Modern society tends to compartmentalize care with spiritual care left to professionals. We constantly see charts of interdisciplinary teams with interconnected circles representing each team member and chaplaincy clearly marked as the department that provides spiritual care.


Each member of the hospice team has the capacity to provide spiritual care, although each person's perception of such care will be different. One's concept of spirituality is both intimate and personal--and so it should be. We are spiritual beings deep within ourselves. It is from that well that each must draw when caring for dying people.


Spirituality is commonly used to describe the differences that exist between mankind and other animals. The dictionary defines it as "that which concerns the spirit or higher or moral qualities, especially as regarded in a religious aspect". The concept of a spiritual soul is not found in the same way in Judaism or non-Western religions as it is in Christianity. To quote John Morgan (1988), "We who live in a Western culture shaped by both the language of the Greek intellectual experience and the Christian religious experience identify the idea of spirituality with religion".


A distinction must be made between religion and spirituality. Religion can be defined as an organized set of practices that surround a traditionally-defined belief in the existence of a God or divine, super-human, ruling power. Such practices are set down in sacred writings or declared by authoritative teachers. There are other definitions. Religion is, in some respects, a set of tools used to express or practice one's beliefs. Spirituality may be (and hopefully is) a part of religious beliefs or practices. However, religion may, or may not, be part of one's spirituality. Those with strong religious ties may have difficulty recognizing this fact.


Spirituality is our relationship with the infinite and, it should be added, with our fellows. It has been said that it integrates our identities. It is the essence of self. It is the I. It is the God within each of us, the part that can commune with the transcendent. It underlies our capacity to forgive, to create, to love and to accept love. It frequently is intensified by approaching death. Our spirituality is what we seek when we search for meaning in our lives.


In our industrialized, high-technology health care systems of today there is little room for caring for the whole person (mind, body and soul) and their families. The moral and ethical issues of our time (abortion, capital punishment, euthanasia, war) are those related to death. In medieval times, death was accepted as the completion of life, no matter how short, to be shared with family, friends and one's community. Over time it has come to be seen as a violent disruption of living, calling forth grief, a pervasive sense of loss and intense fear.


In the seventeenth century, in the midst of profound social change, Descartes put forward the concept of the dualism of mind and body. The Church assumed responsibility for the mind (and soul) and science (or medicine) for the body. This philosophy has had a profound and lasting effect on the practice of medicine and ultimately on both society's and medicine's attitude toward death and dying. Today we are still caught in the dichotomy that Descartes enunciated so long ago, the separation of mind and body. Scientific medicine became increasingly intrusive in the process of dying, so much so that Ivan Illich coined the phrase "the medicalization of death" to describe a society in which death had become faceless, secularized, institutionalized and robbed of its humanity. We developed the technical ability to keep people alive but we removed the humanity from death. Aries, a leading French scholar, subsequently wrote that the modern hospital was the only place where death could hide (1951).


In the twentieth century the scientific explosion of high technology and aggressive treatments to cure illness combined with rapid urbanization to isolate people from natural birth and death. When I was a child many of my family were farmers. I knew that people got old and couldn't farm and died. I knew that cats and dogs and other animals died. I knew that every year a cycle of birth and death took place. I was lucky because I grew up with an understanding of the place of death in my own world. I knew when I was practising that many of my patients did not have that understanding.


My childhood, as for all of us, coloured my attitude to death and dying. In my lifetime, the locus of care has shifted from the community, where my grandfather, grandmother and both my parents died, to "high tech" institutions. The role of the physician changed from a family friend and confidante to that of a distant, authoritative, scientific figure. The new technology and the increased availability of medical care as a result of universal or private health care insurance plans justified the public's belief that health was a right and fostered the illusion of medical infallibility and the indefinite deferment of death.


We became a death-denying society cared for by health professionals who saw the maintenance of life and not the quality of that life as a measure of competence and turned away from death as expression of failure. All of us caregivers bear some of the responsibility for creating that milieu. The stage was set for the modern hospice movement. Hospice, in the twentieth century, began as a revolt against medical attitudes and practices and the rigid institutional bureaucracy that reduced dying people to the state of a disease in a bed. Again, medical and other health care professions share the burden of this high tech approach to care.


The social revolution of the sixties rejected establishment power, including medical power, and in part led to the questioning of the validity of the Cartesian philosophy of separation of mind and body. Cicely Saunders, in Great Britain, developed the hospice as an alternative form of holistic care for people dying difficult deaths with cancer. Her hospice, St. Christopher's, began in 1967 and grew out of her medical and evangelical Christian experiences. St. Christopher's is a Christian institution and people of all faiths and cultures are welcomed. Kubler-Ross, a psychiatrist in America, studied the questions and concerns of those who were dying and found that there were many questions that went unanswered by their health care professionals -- either because they had no answers or they did not listen to the questions. She actively promoted the concept of dying at home, surrounded by family and friends. These two women said, "Look, people are people. We must put faces on the dying. We must help people become whole again." It was a return, philosophically at least, to the medieval perspective of dying. The modern version demands using the high tech means available to relieve pain and other symptoms but we must never forget that we are dealing with people -- people who have physical needs, who have social needs, and who have spiritual needs. People who are part of a family and a community -- and they need our care as well. Kubler-Ross said, "Not only can we not answer the questions of these people, we don't even hear them". Truly listening (see Appendix for brief section on communication skills) brings out the spirituality of the people we care for and our own spirituality. It is not surprising that there is a strong spiritual component to the philosophy of hospice as developed by these women. Spirituality was, and is, the heart of modern hospice care.


No discussion of spiritual care in hospice would be complete without a consideration of the concept of total pain and the meaning of suffering. Total pain is made up of different components: physical, psychological, social, emotional and spiritual. Pain embraces the whole person. Physical pain must be managed first. We have the knowledge and tools but we are reaching only a small percentage (less than 10%) of the people who need our help. In fact, last year a homecare nurse said to me that "we have to accept that 'palliatives' are going to die with pain". Her comments reveal an attitude of isolating terminally ill people with the label "palliatives" and an attitude shared by many patients that people with cancer are going to die in pain -- a self-fulfilling prophecy.


If hospice is to care for the whole person, the family and community must be included. To relieve social pain and to provide spiritual support, the hospice caregiver must be able to recognize the needs of the family and community and help them to come to terms with those needs and their own fears. A fundamental principle of hospice is that the centre of care must be the person who is dying and that person's family. "No man is an island" wrote John Donne. We cannot live apart from our relationships with others. In modern society the "family" unit frequently differs from the so-called "nuclear family". The family may include close friends and may not include, by the patient's definition, their parents, siblings or lovers. Is the family anywhere near the patient? If they are, do they want to be involved at all? Do they recognize (or care about) the dying person's need for coming to terms with their life? So many people live alone. The hospice caregivers may have to become a surrogate family.


It may be necessary to re-establish communication with the person who is ill and their family; to assist in the process of reconciliation. In many families there is much reconciliation to be done; there is some in every family. The goal of hospice care is to facilitate, not mandate, that reconciliation and help people to tie up loose ends, to take their farewells. However, as Cicely Saunders has so wisely pointed out, this is "not just a salvage operation, but an original opportunity, a moment for creation" (1988).


When we care for persons who are dying we must find out who they are. Who is that person? What is their essential being? There is a tendency in modern society to think of ourselves in terms of what we do. We consider a person to be manifested in their work, their interests, their accomplishments, but a person is more than that. Who are we deep inside ourselves? What are our inner concerns, our values? How can we make sense of it all at the end? How can we find meaning in our living and in our dying? That surely is the spiritual dimension of a person -- and that is what we must seek when we care for people near the end of their lives. For some, their religious values and practices provide deep support and allow them to come to terms with their lives. For them the chaplain in a program is an essential member of the team. Others may have no relationship to a religion, or may have a sense of guilt, or unease, or a feeling that they were never able to measure up to the expectations of their family, their church or their God. The sermons, the sacraments, and the services do not reach them. As hospice caregivers, we must reach them, whether we wear a collar backwards, wear a white coat or a nurses' cap, or a volunteer's smock or push a broom as a housekeeper. Death is a spiritual event. It generates a desire to identify what is valuable and true in one's life. We want to tidy up the ends, to put first things first. The inability to do so in a person's life may generate a desolate feeling of meaningless.


This is the essence of spiritual pain, to feel that one is meaningless or that one's life has been meaningless. In Viktor Frankl's book Man's Search for Meaning (1987), he writes that if there is no way out of suffering then we have a responsibility for our attitude toward that suffering. In When Bad Things Happen to Good People (1981), Harold Kushner, a rabbi and father whose son died of a terminal illness, makes much the same point, that the pain is the reason and out of the pain and suffering comes understanding; comes the answer. Kushner also reiterates (as Job learned) that God does not ask us to do things that he does not give us the strength to do.

Frankl reminds us that no one can tell another person what the meaning of their life should be. Sometimes we in hospice care tend to sermonize. It is tempting to preach but we do not have the right to tell dying people the meaning of their lives, only to help them find it. The key to spiritual care is to give them the opportunity and the time to work through and solve their problems--to find their own meaning. We may need to be no more than a presence--to be there. As Saunders has remarked, there is a striking analogy between hospice care and Gethsemane. Christ was asking for meaning in what He had to do. He was asking that it not happen, but that if it did, He would be able to endure the pain and suffering that He knew lay ahead. How often our patients say to us, "I know I'm dying, I don't want to die and I don't want to be in pain, but if you help me I can do it. Just be here and help me." As Christ said to the disciples, "Could you not watch with me one hour?", so often we are asked, "Watch with me". One cannot die for another or grant them a good death. One can never walk in a dying person's shoes. It is their death. All we can do is walk beside them. Spiritual care is helping them to find the way to acceptance and peace.


Henry Nouwen, priest, writer and member of Jean Vanier's L'Arche communities wrote (1972) about the concept of the wounded healer, which is very important to hospice care. We understand because we too are wounded, because we too have pain. We understand because of who we are and because we have come to accept our own mortality. We must dig down deep inside and integrate the scattered parts of ourselves in order to be able to respond, even imperfectly, to a dying person's needs.


How do we help others? We caregivers are so diverse. We come from different backgrounds, from different beliefs, from different religions or no religion at all, and we are not dying. It is said that no one can imagine their own death. This means that when we care for dying people we cannot imagine what they are experiencing. However, we too can feel suffering. We can feel pain. We can feel loss. What can we do?


We can give them freedom and space by controlling their pain. We can listen. We may not have the answers, but we can listen. We can listen in such a way that we help them to find their own answers, and the gift of listening belongs to everyone on the team.

What is suffering? There are many definitions. Eric Cassel, an eminent scholar on the nature of suffering, has written eloquently about it and has focused new attention on the interrelationship between pain and suffering (1982). We suffer when we perceive an impending threat to our personality, to our personhood. Suffering is unique. Only humans can suffer. Furthermore, we can suffer for others. We suffer until the threat to our personhood is removed or until we can come to terms with it. Recognizing suffering and helping people to deal with suffering is part of spiritual care. Part of the ability to recognize suffering as distinct from pain lies in overcoming the concept of the dichotomy between mind and body.


Spirituality is implicit in the grieving process. If we, as hospice caregivers, accept the premise that our responsibility for care encompasses both patient and family, then our spiritual care must extend into the period of bereavement and include all those who grieve. The pain of grief is as real as the pain of cancer and, as in the management of physical pain, hospice care holds out the promise of relief. The bereaved, too, search for meaning in their loss and in the face of death. Like the dying, they need our skills, our compassion and the sense that we are there. Spiritual care should lead to the opportunity for both personal and community growth. To quote Delton Glebe, "The spirituality of pain is the healing that is hidden in the hurting" (1990).


There are a number of issues that affect spiritual care in modern society. There are global reasons, for example, for the current awareness of the need for spiritual care. R. J. Lifton makes some interesting and challenging comments in his book, The Broken Connection (1979). He reminds us that our sense of immortality depends on the link between life and death. In modern society our concept of that link has often been destroyed, for example, by nuclear war. We think of our immortality in terms of the world we leave behind. If there will be no world, how then do we conceptualize immortality.


The world has been struck recently with a series of natural disasters, in which thousands of people have perished. Chernobyl faced the world with sudden, insidious death over which there was no control. It could not be anticipated, could not be seen and struck silently thousands of miles from its source. It reinforced the world's sense of vulnerability. The death of seven astronauts was witnessed on television by millions of viewers. It, too, threatened our sense of control and shook our faith in science. There is a growing tendency at this time to question science and technology, and an increased impetus to examine the meaning of our lives.


AIDS is a world-wide pandemic that has generated a sense of fear and hopelessness and an increasing perception of man's helplessness and human frailty. Organized religion in the Western world has not been at the forefront of care for people with AIDS or their family and friends. In part this has been because AIDS first appeared in two marginalized groups in society -- homosexuals and drug abusers -- that the modern church, both theologically and spiritually, has difficulty accepting. The developing world on the other hand -- particularly Africa -- has been, and continues to be, devastated by a pandemic of HIV infection that has the potential for destroying the fragile economy of many countries and wiping out the first generation of people with modern education. The face of AIDS is clearly visible in Africa. It is the face of ignorance, of disease, of poverty and promiscuity, of social dislocation and changing lifestyle. The Western world, faced with escalating infection of women and children and rapid spread of HIV in the community, only now is beginning to recognize the true nature of this pandemic. Only now are we beginning to look at the broader problems underlying the spread of this virus -- problems that are directly related to the spiritual values of modern society.


We still must care for those people in our society who are infected with HIV and who have AIDS. Hospice caregivers not only require special medical and nursing skills to care for terminally ill AIDS patients, but they must learn new counselling skills for people and communities that they may not understand. Traditionally, caregivers have been white and middle class. AIDS should be a stimulus to an increase in the numbers of homosexuals and lesbians and visible minorities who are active in hospice care. The ability to provide spiritual care depends on the recognition of the nature of the spirituality of others, although it may differ from ours. Those of us who profess to be Christian must examine the ways in which we treat both our fellow Christians and others. AIDS is calling on the church to examine its role in providing pastoral care for people who are infected with HIV, their families and friends, and pastoral care for caregivers who become infected. AIDS is calling the church to look at itself in a way it has not done for centuries.


Another issue facing hospice and spiritual care in hospice is the rapid increase in the number of elderly, especially the frail elderly, in North American society. By the year 2000 there will have been a 130 percent increase in the number of people over 85 since 1980. Over 70 percent of the people in hospice care are over 65 years old. We live in a competitive and materialistic society that puts a premium on dominance and power. Our perception of aging is one of decline in productivity and potential and increasing dependency and powerlessness. As caregivers we must resist the temptation to practice benign paternalism. There may be a gap of two or three generations between the dying elderly person and their caregivers. To provide spiritual care for the terminally ill elderly we must recognize the real nature of the person who is dying, the poignancy of their losses, the uniqueness of their perception of spirituality and their relationship to their religions. The elderly are more concerned about the quality of their lives than the length. They are frequently afraid of being abandoned physically, emotionally and spiritually. Hospice must find a way to reinforce their personhood and give them back the control that we so easily take away from them.


There are problems facing spiritual care in hospice that are associated with ethnic differences. I have examined some of the social issues regarding ethnic differences in the previous chapter including our different orientations to death and dying depending on our culture and backgrounds. Spiritual care and the differences and similarities of our spiritual backgrounds is not often discussed in palliative care in a practical way.


We try to care for people from different ethnic and religious backgrounds and we, the people who provide care, come from differing beliefs and have different spiritual concepts. There is compassion and concern in the Buddhist teaching. There is compassion and concern in the Jewish faith. Humanists are concerned with social justice and ethics, compassion and abiding commitment. All can, and do, provide spiritual care in hospice -- and not only to their own. Indeed, we could, and should, develop ecumenical spiritual care in hospice.


Spiritual care has been described as the "unfinished revolution in palliative care" (Corless, 1986). Spirituality is difficult to describe and even more difficult to define. Norman Cousins stated the problem facing hospice care most eloquently in his book The Anatomy of An Illness (1979), "Death is not the ultimate tragedy of life. The ultimate tragedy is de-personalization -- dying in an alien and sterile area, separated from the spiritual nourishment that comes from being able to reach out to a loving hand, separated from a desire to experience the things that make life worth living. Separated from hope".


In answer to the cry of the spirit, hospice says: We are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your own meaning in your own life -- your way. We will comfort you and those you love--not always with words, often with a touch or a glance. We will bring you hope--not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there.



4. Informational Care

Through great tribulation we have gained peace.

Anonymous


Informational support means providing patients, family members, other palliative caregivers and the general public information about palliative care, including how to provide physical, emotional, and spiritual support. This chapter is written for the caregivers who have constant opportunities to provide patients, families and non-palliative care providers with the information and skills they need to help someone who is dying.


Many people who are dying and their families crave information. Many want to know about their illness and how it will affect their lives until they die. Many want to know if they will suffer pain or intolerable symptoms. Many want some idea of how long they will live. Many want help in settling their estates, planning funerals, understanding how to work with the other members of the palliative care team and how to help each other (patient helping family and vice-versa).


People often crave this information at times when no one else is around. They want to understand what is happening to them when they are awake at three in the morning and everyone else is sleeping. Family members live in a society where their friends may not know how to provide practical support. All of these needs can be partly addressed by providing people with information.

There are many ways that this can, and should be done by all members of a palliative care team. The following are just some examples:


1. Have a 24-hour telephone number that people can call to get objective, up-to-date answers and support.


2. Have fact sheets that help patients and families and volunteers understand the probable development of specific diseases and the medications and treatment often used.


3. Have some case studies to describe in real terms how successful palliative care has been in similar circumstances being faced by the patient.


4. Have a lending library of books, videos, audio cassettes and articles that will help individuals who want more than basic information. This could include information on the truths and myths of dying and death, caregiver and patient-family stresses, how to provide day-to-day practical supports, how to plan funerals, and how to deal with financial and other legal matters.


5. Have a single sheet of paper or brochure with a list of the other professionals and volunteers on the team and how they can be reached.


6. Have time set aside on a regular basis (both professionals and volunteers) to answer the ongoing questions that patients and families will have. Help them remember your answers by providing written handouts that answer the more common, repetitive questions you get asked all the time. People only hear 20% of what you tell them and they forget 80% of that within a day so they have to have written reminders of important details. Encourage them to bring along another family member or friend when they meet with you. This person can take notes and help them remember important information.


7. Encourage those who are interested to get involved in other programs, service, or support groups. Such activities are not for most people who are dying or who are grieving the death of a loved one, but they do help some people.


8. Help teach families and friends the basics of practical nursing care for someone in the hospital and someone at home. Most often, patients who go home must rely on their family and friends who were probably asked to leave the hospital room when basic care was performed by nurses. Take all opportunities to teach those who want to learn about physical, emotional and spiritual care.

Information is like a safety net. It helps people understand what is happening to them, what is normal or abnormal about their reactions and condition and helps give them back some control over their lives which they may have lost during the earlier treatment of their illness.


Information gives people some predictability in their lives. While we are planning our lives months or even years in advance, people who are dying and their families are trying to get through the next few hours and days. They need some of the same predictability of the future that all of us need.


Information is often hoarded in health care. The assumption still exists that people are not capable of understanding or that there is too little time to communicate well. Palliative care was designed partly in response to that attitude. People must have the choice to know as much as they want about their illness, their future and their concerns. The patient and family must have access to information when they want it, versus when we want to give it to them (if at all).



Personal Comments

Dorothy Ley

To Physicians


My professional background is that of a haematologist, oncologist and provider of palliative care. I believe it is important to make some direct comments to my colleagues from all medical disciplines.


Just because you have cared for a lot of people who have died does not make you an expert on dying or death. Physicians by nature are people who like to do everything themselves. That characteristic is reinforced by other experiences, including medical schools. I find it appalling that young physicians feel that they have failed when a patient dies. When we were granted our medical degrees we were not given the authority to give our patients eternal life, nor for that matter to take it away.


What then is palliative care from a physician's perspective? Palliative care is more than its simple definition. We learned (if we had any palliative care instruction at all) that to palliate means to relieve without curing; to medicate and to alleviate pain and symptoms to be best of our abilities. However, there is something wrong with the notion that presumes that a physician foregoes curative care when palliative care is instituted. We must recognize, I believe, that there are many physicians who assume that palliative care is really a concession to more mainline, vigorous cure-directed therapy. It is that attitude (which is fairly general and common) that has made it difficult to provide good care of people who are terminally ill.


Physicians must remember that death is one of only two events that all humans experience. At the same time it is a moment that each of us must experience alone. As Herman Feifel wrote, "To die is a human condition. To live decently and to die well is a privilege." Physicians often prevent people from dying well because of our training to cure first, care second. The palliative care philosophy encourages us to go back to the teachings of that great nineteenth century Canadian physician-teacher, Sir William Osler, who taught medical students that we must always treat both the mind and the body within each of our patients. In that way we allow people to live their lives in the way they chose before their death and, therefore, to have the privilege to die well.


Few physicians understand their role on a palliative care team. As a physician you have specialized knowledge and skills and so does every other team member. The major distinction is that physicians are usually legally responsible for a patient's care and, therefore, your role on a team cannot be equal to everyone else. Having said that, no physician has ever been charged with providing palliative care. On a practical, day-to-day level, you are equal to other members of the palliative care team and have an equal responsibility to learn the skills of team dynamics and how to help a team reach and maintain its full potential.


In palliative care, decisions rarely need to be made quickly. The patient, family and other caregivers that are part of the interdisciplinary team understand that the patient is dying and that care is primarily focused at comfort for the patient. Situations are more predictable in such a setting and decisions are made by consensus long before there are changes in the patient's condition. There are few unexpected emergency situations in palliative care and those that do happen can usually be handled without the need for group decision making because the team has already discussed similar situations in the past.


The danger happens when patients are referred to palliative care programs hours or days before their death and the team has not had time to develop a working relationship with the patient and family. Even in situations such as these, the compassion, team work and the team's experiences with such cases results in patients (when possible) and families feeling relieved that "the system" does indeed provide a compassionate, practical alternative to admission to emergency units or acute care treatments.


It is important to remember that no physician has ever been convicted for providing palliative care in Canada. Although you are legally responsible for your patient, the interdisciplinary team approach reduces to a minimum any risks of providing palliative care in isolation.


Physicians, other health care providers and the public must lobby for changes in the physician fee structures for palliative care. In the mid-1980s it was estimated that a family physician caring for terminally ill people and billing the Ontario Hospital Insurance Plan under its schedule at the time would have difficulty making $25,000 a year if he or she worked seven days per week without any holidays. It has not changed substantially enough since then. Until, and unless, major reforms are made in the method of payment for physician services across Canada the development of palliative care will be severely, and damagingly, restricted.


To All Professional Caregivers

My background is medical so I will not give specific comments to professionals from other disciplines. However, there are a few specific things that I think are important to say to all caregivers who provide palliative care including some comments on the ethics of care.

It is very difficult to put together an interdisciplinary team. Not a team that is just a collection of people with different disciplinary backgrounds. You must each learn the skills of team dynamics and commit yourself to actively participating in that team dynamic to increase communication, to share responsibility and to resolve conflicts as they arise.


As with physicians, you need to constantly enhance your professional skills, especially as they apply to palliative patients. The knowledge and skills within palliative care are increasing worldwide as new ideas, techniques and procedures are developed. Our patients and their families count on us to be up-to-date on ways to help them through their final life's journey.


Everyone on the team must understand their own strengths and weaknesses. You can never do everything equally well for a patient and their family. Therefore, learn to ask for help in areas where you are least comfortable and teach others your areas of strength. There are no rules that say physicians must always give "bad news" or that spiritual leaders are the only ones who can talk about God and an afterlife. If you feel yourself holding back your expertise, make an extra effort to share your knowledge and skills.


Palliative care providers have an extra onus to examine their own beliefs about dying, death, spirituality, the meaning of life and dealing with grief. You cannot take emotional and spiritual suffering away from someone but you can understand, somewhat, what others are feeling and help them to help themselves. Understand how your spiritual beliefs may help, or hinder, a patient's own beliefs. Never preach your own beliefs but use those beliefs to help join a common bond of spirituality with the patient, if they chose to have you involved in that way.


Never lose sight of the palliative care philosophy of care: provide the physical, emotional, spiritual and informational supports that patients and families need, when they need them. There will be times when it will be more comforting, or easy, to concentrate on writing reports, presenting policy papers to government or other funders, in doing public education, debating doctor-assisted suicide, etc. Constantly ask yourself: "Who am I doing this for? How will this directly affect the people I know who are dying now? While I am doing this, who is caring for people who are dying?"


A last thought -- the demands on palliative care will increase in the next few decades. You may be involved in helping more and more people. Your annual reports will be filled with impressive statistics of how many people you helped that year. Remind yourself that the hospice movement in Canada began in response to health care systems that forgot how to care for people who were dying. If you cannot remember the names of the patients you are serving, perhaps you are serving too many. Perhaps we will need to concentrate on helping people within the community return to a time (not that long ago) when caring for people who were dying was a privilege and part of the seasonal lives of people in a community. Rather than build empires or be funded by health care empires, perhaps, we need to remember people like Bill, Sue, Nasreen, Geovanni, Michelle and Juan Carlos -- the people who rely on us at one of the most vulnerable times in their lives. We have made dramatic differences in the lives of individuals in Canada because we got to know them as people.



To Volunteers

Volunteers can do so many things. The fact that you are not paid means that your involvement is a true, freely-given gift. You need to understand the philosophy of hospice care and how you can best fulfil it with your own unique sets of knowledge, interests and skills. The important role that volunteers can play is that you are able to meet the needs of patients, as defined by the individual patient and advocate on their behalf when necessary. You have no professional affiliation nor are you a paid staff of a particular service, therefore, you can afford to be loyal to the person who is ill rather than primarily loyal to the service where you volunteer.

The relationship between professional caregivers and volunteers is not well defined. On the one hand, some families and professional caregivers treat volunteers as professionals and, on the other hand, they treat them as unimportant. The volunteer, in a way, is the cement that holds the palliative care service together. He or she brings part of the patient's world to the team that professionals cannot do. No matter how hard professionals try, they must play the roles expected of them by the patient, their profession and other professionals. The volunteer has no such inhibitions.

But we must beware. We must beware not to use them to fill up the economic chinks and pick up the funding pieces, as it were. We must beware that we develop and apply appropriate ways of choosing volunteers for the setting in which they are going to work. That setting may be an institution or it may be a home. We must carefully examine the role of the volunteer in those various settings and the way that role various from one to another. We must develop training programs that are appropriate to the settings. In fact, much of this work has started in Canada but we must be vigilant in ensuring long-term accountability of all members of the palliative care team, including volunteers. We must be certain that we know the legal and ethical implications of the volunteer's activities in palliative care. We must above all support them, train them, and be certain that, wherever they work, they are full, integrated members of the team.

The second way in which voluntarism is important in palliative care is in funding. There is a grass roots movement in this country to take palliative care out of the institutions and into the community. It has taken the form of the development of volunteer, community based hospice programs. Some of these programs or services are designed to help patients in their homes while others help patients in hospitals or free-standing hospices (such as Casey House in Toronto). Some of these services include the services of professionals within the service while others work along side professionals in the community.

I happen to believe personally that public involvement in the delivery of care, particularly in an area like palliative care, is a good thing. I keep going back to the philosophy of palliative care. If we really believe that we can only deliver palliative care in terms of a person who lives within a family and a community then we cannot trap that care in an institution. It has to get out into the community somehow. Palliative care units in some hospitals will be necessary to provide special pain and symptom control, respite care and a safe environment for people who cannot stay at home. These units are also necessary to help teach other caregivers the specifics of palliative care that can not be taught in the community as easily.

People are becoming increasingly disenchanted, however, with the way in which the elderly are cared for, the chronically ill are housed, and the terminally ill treated. There is an increasing need to be involved in the care of these people. But that need should be channelled. We should be planning for the development of mixed volunteer and professional groups out in communities. We should be examining the reasoning for the apparent need (or lack of it) for alternatives such as free-standing hospices, especially in rural communities where modern health care is too far away from home.

Right now across Canada there is a growing number of free-standing hospices being planned. Property and buildings have been purchased. Who knows how inappropriate these may be? The response of governments will be to deny them access to funds and in some situations to deny them the right to operate. I am not at all sure that hospices are the right way to go. However, I think all of us who work in the field of palliative care should be examining the options and helping to make plans for the future that meet the needs of individuals who are dying within their own communities. There are no generic answers that fit all communities and all needs. We can not possibly depend on volunteer money for operating a program. However, there must be a place for it within that system. Co-operation is essential if we are to develop an integrated system of palliative care in this country. I also believe that future planning will have to focus on community- based services whenever possible. Institutional programs may remain necessary for training and research purposes and for exceptional situations where a person cannot, or chooses not to, stay at home. These programs may include free-standing hospices and palliative care units within hospitals.


To the Ethics of Care

There are some fundamental ethical issues that are associated with the practice of palliative care that we ignore at our peril. Perhaps the discipline of palliative care can take the lead in helping society solve some of these problems.

We are caught between the philosophy of "triage" -- husband scarce resources and use them only where they will do the most good -- and the Hippocratic Oath -- care for all who need your care, regardless of cost. We say, "I am my brother's keeper" while grim economic reality says, "We can't take care of everyone equally -- make a choice". One of the very real tensions in palliative care today is just that: How do we make a choice without compromising our philosophy of care, or our ethics. Or can we?

Whether we like it or not, when combined with rapidly changing demographics, the economic constraints in our society are forcing us to face the dilemma of age-related access to care. Is palliative care going to be available only for the young when 70% of people in palliative care are over the age of 65? Will it be limited to people who share similar views on health, illness and death as the leaders within the palliative care movement? Who makes these decisions and on what grounds? Do those ethical grounds reflect the beliefs and values of Canadians or of the medical and bioethical communities?

There are others more qualified than I to discuss the difficult ethical problems of "do not resuscitate orders" (DNR) and euthanasia. Let me remind you, however, that the increasing demand for legalized living wills and for euthanasia is a reflection of the fact that the public trusts neither the caregivers nor the system.

The phrase "dying with dignity" means different things to different people. For some it means dying with their own clothes on and in full possession of their faculties. For others, it is the absence of pain and difficult symptoms. For others, it is the end to a life lived with dignity. The current fashion to equate dying with dignity with euthanasia reflects the mistaken belief that death whose moment is chosen is somehow more dignified that one not chosen.

We must remember that death is rarely dignified as we have come to define dignity. People's bodies change and begin to lose control over normal functions. This was once seen as a natural process and not one to avoid, isolate or terminate. Dignity is also an inherent quality that can not be given to someone else and certainly not at the end of their lives. Dignity can be taken away from people, however, by taking away their right to make decisions, to prevent them from taking part in their own palliative care and by converting the concept of "the right to die" with a "duty to die".

People at the margins of life -- those who are poor, elderly, illiterate, immigrants, of non-Christian faiths, women, of colour, with disabilities -- are already at great risk of dying. The duty to die is increased with economic constraints on health care. Legalized euthanasia or medically-assisted suicide would make that duty all the more pervasive, regardless of all the supposed safeguards mentioned by others. If you think this is not true, remember that hospitals and health care systems embody the attitudes of society. In our death-denying western hospitals, cure is still more important than care. Our professional training, our allocation of resources and our attitudes towards, and the treatment of, the terminally ill, the incurable and the elderly are predicated on the importance of cure. We isolate the dying and reject and institutionalize the elderly.

The demand for euthanasia is a desperate response to an intolerable situation. Change the response or the situation and the demands fade. I firmly believe that it is the role of hospice or palliative care to represent that change in response and to alter the situation. Palliative care is not a response to euthanasia. Both palliative care and euthanasia are responses to health care systems that do not meet the needs of people who are dying. Once we understand that distinction perhaps society and its media will understand the purpose and practical supports that the palliative care philosophy offers us all.

One last comment: the debate over euthanasia, to me, is an example of the lack of thoughtfulness and perception of the difference between killing yourself or someone else and providing a dignified, peaceful death. They are quite different. I think it is a disgrace that someone can flog an unprofessional book on how to kill yourself and make a million dollars on it. I think it is a sad comment on our society when we will spend millions of dollars buying books that help us to kill ourselves, or others, and only thousands of dollars to help provide compassionate palliative care. The public demand at present is for doctor-assisted suicide or euthanasia because they do not understand that dying with dignity comes through dying without pain, alert and with your emotional and spiritual needs supported by people who will walk the journey with you. Our politicians, to date, follow the opinion polls and, therefore, have not provided the leadership we need to educate all Canadians about the real choices available to us. Nor have political leaders, and other leaders in this drive toward legalizing euthanasia done systematic, empirical studies to examine the probable consequences of euthanasia legislation. We may spend millions of dollars a year on environmental studies to safeguard nature (as we should) but no one is suggesting we spend some dollars to safeguard humanity as well. A tragic situation.


Conclusions

I have built a wall of laughter

Around the house of my heart.

Grow old along with me.

The best is yet to be.

The last of life for which the first was made:

Our times are in His hand.

Robert Browning


As each of us comes to the end of our life -- whether it was a short life or a long one -- we must pass through the door that leads from this life to a life beyond. That door is death. Not one of us approaches it alone. We are accompanied by our loves, our hates, our ambitions, our fears, our faith (or lack of it), by our successes and our failures. We are accompanied by all the memories, the myriad of people, places and events that have shaped our lives.


It is not an easy approach for anyone. No matter how firm our faith, how strong our support, not one of us can help but look back at all we have known with longing and look forward with some apprehension -- and sometimes with fear.


What is palliative care? It is the paving of that final road -- whether it be made up of small bright pieces or large solid stones. The mosaic of palliative care provides the support and marks the way for all those for whom we care. You are the cement -- you are the glue that holds it together. All of you who are part of the delivery of hospice or palliative care, whether you be professionals, volunteers, community or family members. Diverse, multi-faceted, inter-mingled -- you are as different and as unique as the many parts of the mosaic. It is your love, your caring, your commitment, your skills and knowledge that hold the pieces together and make them strong.

Hospice care stands as a model for tolerance at the final moment of truth in everyone's life. The challenge to hospice in the years ahead is to take a deeply religious, fervently Christian (Judeo-Christian), uniquely Anglo-Saxon philosophy of care and apply it successfully to radically different situations. This will require discipline, compassion and understanding, vision, and above all, faith.


My philosophic approach to patients throughout my practice was the palliative care philosophy. It was taught to me by good men and women clinicians who cared about their patients. It was not restricted to patients who were dying but for all patients. The fact that now it is restricted to people who have a terminal illness is appalling. We should be teaching the philosophy of hospice care in public school and in society and, of course, in health care sciences. It should be taught -- period.


The challenge to hospice is to reach out to each other and strengthen and support each others' roles on that much vaunted inter-disciplinary team -- not to compete with the belief that one's own profession is somehow better able to meet the needs of people who are dying. We all have personal and professional strengths and none of us, regardless of our background, can provide palliative care on our own.


The challenge is to reach out to people who need palliative care in parts of this country that are hard and difficult and where there is little monetary return -- in the far north and in the slums of our cities. We must reach out to the communities beyond the borders of those cities, to the small towns, to the countryside, where there are people who want to die in their own homes surrounded by family and friends but where there is almost no professional help and no money to provide it.


We need to reach out to the marginalized in our society -- to the elderly, to people with AIDS, to recognize and to meet their needs.

Finally, the challenge to hospice is to recognize the spirituality in each of us, no matter what our religion, to share in it and to work to make your own spirituality grow and deepen by the exchange.


The mosaic of palliative care, dark pieces and bright pieces, uneven in shape, irregular in design all become part of a pattern -- a pattern of care. You will decide by what you do and how you do it whether it will become a mosaic that will ultimately include all health and social care. The choice is yours.


Remember, in hospice's search for scientific excellence, the creation of standards, the demands for formalized education and government funding for care, (all appropriate and necessary), we must never forget to reach out beyond ourselves, beyond our personal pride and ambition, beyond our turf, if you like, to reach out from our inner self to the people for whom we care -- all of them. For love, is the litmus test of palliative care and spirituality is its heart. "Love", wrote Buckminster Fuller, "is omni-inclusive, progressively exquisite, understanding and tender, and compassionately attuned to other than self."

The Heart of Hospice


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Copyright © 1994 Harry van Bommel

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