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CARE-IN-DYING

The Catholic Health Association of Canada Brief to the Senate Committee on Euthanasia and Assisted Suicide
(September 1994)

 

Executive Summary
Preamble
Definition of terms
Position Statement
Rationale
Conclusion
Recommendations
References

Executive Summary

A national Christian organization comprising persons committed to the tradition of health care undertaken in imitation of Jesus' healing ministry, the Catholic Health Association of Canada opposes the legalization and practice of euthanasia and assisted suicide on the grounds that they undermine the dignity of the human person by denigrating the dying process and by rejecting the community dimension of the person. We believe that euthanasia and assisted suicide are contrary to the practices of holistic health care, cannot be regulated to prevent abuses and are inconsistent with Canada's reputation as a protector of personal dignity and human rights. As health care providers, we offer an alternative vision to assisted death: care-in-dying.

For patients near death, there is never a point where there is nothing more to be done. If we listen attentively to their needs, we may find that they yearn to see the sunrise, to hear a beloved piece of music, to have a friend nearby. Compassion in this case means meeting these needs, providing comfort and companionship, and helping them to find and experience wholeness of body and spirit and solace in their connectedness to a caring community. These are the components of a good death, of a death with dignity, and these are what we undertake to achieve through care-in-dying.

The Catholic Health Association of Canada urges Canadians to reject aid-in-dying as a solution to the challenges posed by the suffering and terminally ill members of society and instead to adopt policies and practices that promote care-in-dying. By attending to the needs of dying persons among them, Canadians can transform health care. By committing itself to care-in-dying, Canada can provide the world with yet another model to be imitated in the realm of health care.

To this end, the Catholic Health Association of Canada urges the Senate:

  1. To recommend against the legalization and practice of euthanasia and assisted suicide;

  2. To recommend that palliative care be an integral component of health care delivery in Canada;

  3. To recommend that long term care, whether based in the community or in an institution, be revalued and given priority as a provision of care that is vital to the well-being not only of its clients but of society as a whole;

  4. To recommend that research be conducted into the needs of dying patients, their families and caregivers and that the findings be used to shape health care policies and practices around end-of-life care.

Preamble

The Catholic Health Association of Canada is a national Christian community committed to health care in the tradition of the Catholic Church. Our mission is to witness to the healing ministry and abiding presence of Jesus. Our concern is for health in all of its aspects: physical, emotional, spiritual and social. Because we see health as a condition for full human development, our Association encourages all activities designed to promote wellness, prevent disease, and cure sickness. We commit ourselves to work openly and earnestly, in both official languages, with all people in our society. Our membership comprises eight provincial/regional health associations, 38 owner members of health care institutions, 146 hospitals and homes, 125 associate groups including religious orders, dioceses and physicians' guilds, and 351 personal members.

Ours is a tradition of transforming health care. The universally accessible health care that Canadians enjoy today has its roots in the pioneering activity of women religious who built their hospitals based on a radical mandate: that no one who came to their doors would be turned away. While we in Canada today recognize the importance of ethics in health care, Catholic hospitals were among the first to establish ethics committees and Catholic hospitals were the first in Canada to hire a full-time clinical ethicist. We will continue this tradition of transforming health care and to this end we work with groups who share a holistic and humane vision of health care — health care associations and providers, churches, government and community groups.

In imitating Jesus' healing ministry, we have a particular interest in attending to the needs of and advocating on behalf of the most marginalized members of our human community, in this case, the terminally ill, the suffering, and those among us who are dying. At this time, persons near death present special challenges. People are living longer, subjected more and more to progressive illnesses, and, often with no extended family, they are in danger of dying alone or among strangers. Our analyses of current social trends lead us to believe that the needs of the dying — for support, companionship and unconditional care — will only increase. The practices and policies which Canadians establish for end-of-life care today will have tremendous implications for the future. We commend the Canadian Senate for conducting these hearings and we welcome the opportunity to express our views on the issues of euthanasia and assisted suicide.

Definition of terms

We believe that death is an inevitable and natural life event that is not to be elevated above life itself as something to be pursued for its own sake. Thus while patients may, for various reasons, be allowed to die, the death of the patient must never be the intended or willed outcome of the act or treatment undertaken. With this in mind, we understand EUTHANASIA to mean the act taken deliberately by a third party to end a patient's life, the patient's death being the intended outcome of the procedure. The patient's death is also the intended outcome of ASSISTED SUICIDE where patients take the actual step to end their own lives using means deliberately supplied by a third party to secure this end.

We believe that euthanasia and assisted suicide must be distinguished from forms of end-of-life care in which patients are allowed to die. These include: FORGOING TREATMENT, that is, respecting the patient's wish to refuse or stop treatment that may be regarded as extraordinary, disproportionate or even futile; and the PROVISION OF PAIN RELIEF, that is, administering drugs to relieve pain even when they carry the risk of inadvertently hastening the patient's death. In neither forgoing treatment or the provision of pain relief is the patient's death the intended outcome, nor are the desired outcomes (e.g., release from undue burden or pain) achieved by the patient's death.

Position Statement

Given the Catholic Health Association of Canada's understanding of:

the Catholic Health Association of Canada opposes the legalization and practice of euthanasia and assisted suicide. Instead we urge Canadians to direct their efforts to ensure that all patients near death receive adequate care-in-dying and so work in this way to transform health care.

Rationale

As a Catholic health care association we base our reasoning on two sources — our substantial expertise in health care and our understanding of the meaning of Jesus' presence in this world.

  1. The Value of Death and Dying

    We share with many others the belief that all people should die with dignity. Given our very different ideas of what it is to be human, however, and the meaning that is attached to death, we find ourselves in profound disagreement with proponents of assisted death. Many who support euthanasia and assisted suicide treat death as a goal and the process of dying as an encumbrance presenting undue burden to patients, families and health care providers. They portray their aggressive pursuit of death as a humanitarian act justified by the virtues of utility and expediency. In this, they overlook the transcendent nature of death and dying and the transformative healing that is possible for patients and those who care for them.

    From our experience in health care we know that the process of dying holds special opportunities for those who do not turn away from it. In yielding to support and care in their dying, patients can come to believe in and count on the love that others have for them. When this happens, they open themselves to a degree of intimacy previously unimaginable and, in this dependency and intimacy, they may glimpse real freedom. For many people, the process of dying may be a time of reconciliation, of coming together and setting affairs in order, of saying goodbye.

    For patients and those who keep watch with them, the process of dying may allow them to realize more deeply the meaning of their human existence. When patients face it with hope and trust and in the company of those who care for them, death takes on meaning and fear diminishes. Patients and those who care for them can come to accept their human nature in its fullness and, in this acceptance, find peace. As health care providers we constantly strive to make this our goal: that patients, families and caregivers may experience a truly good death. Our practice testifies to the attainability of this ideal.

    We believe that euthanasia and assisted suicide are founded not on an acceptance of the human condition and the possibilities it holds, but on a need to control and dominate the course of one's life and one's dying. In euthanasia and assisted suicide, the ends take precedence over the means; what is important is dispatching death efficiently and effectively. Euthanasia and assisted suicide alienate death from the dying process and further fragment human existence. Through euthanasia and assisted suicide people reach the end of their lives quickly and painlessly perhaps, but without ever knowing what it is to yield and accept and trust and find freedom and peace in these unaccustomed postures. To cut short or circumvent the dying process is to be deprived of the opportunity it holds.

  2. The Goals of Health Care

    At the heart of health care is healing. By this we mean helping patients who are broken in body or spirit to mend, to find meaning, to attain wholeness. As health care providers, we facilitate this process — providing medical treatment and nursing care, perhaps — but patients themselves determine the course of care as they come to us with their needs. People near death, especially, teach us to be attentive to the needs before us and to value all efforts to meet them. They show us that when cure is not possible, they are still in need of our care — to relieve them of pain and suffering and, if that is not possible, to help them to bear it; to help them to find meaning in their death and dying; to accept them unconditionally in this important stage of life. Concretely, this may mean offering hands-on care directed toward the patient's physical, emotional and spiritual well-being, allowing visitors to take priority over hospital routine, making sure that there is someone to keep watch with the patient — and seeing value in this. The goal of health care in this case is to be compassionate, that is, to suffer with the dying patients and to journey with them in solidarity. We believe that this undertaking is consonant with the aim of health care which is to help patients restore and preserve their dignity and integrity in the face of illness and death.

    When this goal is met, the healing effected is a mutual healing. Patient and caregiver form a partnership of care; with family, neighbours, professional support staff and volunteers, this partnership is extended to become a community of care. Within this milieu of mutual support and common task, healing takes on a new dimension, sustaining not only the patient but those who care for the patient and for each other in the undertaking. Even those who simply witness the exchange do not remain untouched. It is a healing that is not confined to the bedside. Caregivers, families and witnesses carry these moments of grace with them into the world and we believe that in this way health care, especially as it attends to the needs of dying patients, contributes to the well-being not only of patients but of caregivers, families, and the larger community.

    We believe that euthanasia and assisted suicide deprive patients, caregivers, families and the larger community of the opportunity for healing that can be effected through attentive health care practice. Instead, assisted death focusses on the patient's immediate distress and operates on the assumption that the future will be a continuation or worsening of this suffering. In this context, healing is distorted to mean putting an end to suffering which assisted death accomplishes by putting an end to the patient's life. We do not consider euthanasia or assisted suicide to be therapeutic and we regard them as procedures quite contrary to our understanding of good health care practice.

  3. The Meaning of Individual Dignity within the Context of Community

    1. The Gift of Community

      We are individuals who exist in community. As Victor Frankl described it: "The uniqueness of the human personality finds its meaning entirely in its role in an integral whole. Thus the meaning of the human person as a personality points beyond its own limits, toward community; in being directed toward community the meaning of the individual transcends itself."[1]

      As members of the human community, we are connected one to another. When we embrace this connection, we are free to receive the gifts that it offers. Elisabeth Kübler-Ross described being a young child at the bedside of a dying neighbour. From his own bed, he set his affairs in order. Then: "He asked his friends to visit him once more, to bid goodbye to them. Although I was a small child at the time, he did not exclude me or my siblings. We were allowed to share in the preparations of the family just as we were permitted to grieve with them until he died."[2] Far from thinking this morbid, Kübler-Ross felt that to allow children to participate in this way "gives them the feeling that they are not alone in the grief and gives them the comfort of shared responsibility and shared mourning."[3]

      In her visit, even as a small child, Kübler-Ross brought something to the dying man and his family — the gift of her neighbourliness, and of her youth, which may have provided comfort by its testimony to the continuity of life. She in turn received hospitality — a sense of being welcome in the community that surrounded the man in his dying. She was allowed to witness and be with neighbours in this life event. This very simple incident illustrates the richness that is possible in our existence as individuals in community .

      Currently much of health care is driven by the principle of respect for patient autonomy. A welcome reaction to the excessive paternalism that characterized earlier health care professional-patients relationships, it is nevertheless an ethic of the individual which does not take into account the communal nature of persons. It is within this context that euthanasia and assisted suicide operate; their practice is often portrayed as a private choice or as an exercise in patient autonomy well within the rights that one has over one's body. Assisted death stands as a refusal of the community dimension of individuals, a rejection which is, in our opinion, both deceptive and unrealistic.

    2. Assisted Death and the Health Care Community

      There is nothing private about euthanasia and assisted suicide. By their very nature they are life-terminating acts which require a third party in attendance, often a health care professional. For many caregivers, the practice of euthanasia and assisted suicide poses a profound dilemma. Assisted death is contrary to their training and current standards of practice and is at odds with codes of ethics that insist on the preservation of life and the mandate to do no harm. Even if they decided not to practice such acts, caregivers might find themselves questioning the meaning of their own professions that euthanasia or assisted suicide would be carried out at all.

      This confusion could damage the often fragile relationship that exists between the health care professional and the patient. With assisted death a treatment option, patients would find themselves dependent for care on practitioners who are involved in killing people. They might find themselves afraid to speak honestly about their needs lest they be perceived as candidates for assisted death. The health care professional-patient relationship which ought to be "a covenant of persons ... distinguished and characterized by such personal attributes as fidelity, reverence, respect, truthfulness and mutual trust" [4] would instead be dominated by mistrust and alienation. The opportunity for healing that exists in the relationship itself would be lost with both patient and health care professional the poorer for it.

    3. Assisted Death and Vulnerable Members of the Community

      We fear for the vulnerable members of our society. While proponents of euthanasia and assisted suicide insist that such acts be undertaken only with the patient's freely given consent, we do not believe that even the most stringent regulations can prevent some patients from feeling the effects of coercion, especially if they believe that they are not valued by society and would, in the eyes of society, be better off dead. In a health care system plagued by the effects of severe cutbacks, this may indeed be the message which many patients in chronic and long term care are receiving.

      Furthermore, we do not see how the slippery slope can be avoided. If euthanasia and assisted suicide are to be made available to those capable of requesting them, this must be because the procedures themselves have merit. If this is the case, how can they be denied to those incapable of asking for them? To ensure that assisted death is universally accessible, would we allow patients to make their request through advance directives, either in the form of living wills or proxy decision-makers? And what of those persons who are incapable of requesting assisted death and who are without an advance directive but who are suffering grievously or enduring a quality of life that has prompted others in similar circumstances to seek an end to life? In a climate that accepts assistance in death, it is a very short step from voluntary active euthanasia at the patient's direct request, to voluntary active euthanasia at the patient's request expressed through an advance directive, to nonvoluntary active euthanasia.

    4. Assisted Death and the Larger Community

      We think it is important to acknowledge the effects of euthanasia on the community that surrounds the patient — on family members who might not understand why someone would intentionally pursue death and so cut short their time together; on caregivers who are left wondering whether they weren't somehow at fault, whether there wasn't something more they could have done; on the larger community that mourns the loss of one of its members who died because life was no longer worth living. We must also speak of the people who die this way. Although the patients are attended by a third party, euthanasia and assisted suicide, with their emphasis on autonomy and individual rights, are acts of persons in isolation. Furthermore, because they are undertaken by persons who see no hope or worth in the lives they are living, euthanasia and assisted suicide are acts of despair even as they are depicted as acts of rational choice. By alienating individuals from the gifts of the larger community and by throwing them upon their own resources in times of crisis, euthanasia and assisted suicide will simply add to the fragmentation and distress already so apparent in our society. Rather than offering death as a solution to the physical and existential anguish experienced by patients with debilitating diseases and terminal conditions, we must begin to reconnect them to caring members of our society. We must recover our sense of neighbourliness, of being near-dwellers, and revalue interdependence and independence as virtues of equal stature. In this way, those who are dying and our community begin to heal.

  4. The Reality of Euthanasia and Assisted Suicide in Practice

    The issue of assisted death is not simply theoretical; both euthanasia and assisted suicide are tolerated in the Netherlands. We believe it is important to examine the situation there in order to discover more about how these life-terminating acts work in practice.

    According to the findings of the Remmelink Commission, sponsored by the Dutch government to gather information about current practices around medical decisions at the end of life, each year euthanasia accounts for 1.8% of all deaths, that is, 2,300 deaths annually while assisted suicide is the cause of 0.3% of yearly deaths, that is, 400 deaths per year.[5] By definition, euthanasia and assisted suicide are life-terminating acts performed at the explicit request of the patient. The Remmelink Commission also found that each year physicians terminate the lives of patients without their explicit request and that these acts of nonvoluntary euthanasia account for 0.8% or 1,000 deaths each year.[6]

    Since 1973, when the first case went to court, the practice of euthanasia has been tolerated but not decriminalized. After reviewing the findings of the Remmelink Commission, the Dutch government amended the Burial Act to include a notification procedure for deaths caused by euthanasia and assisted suicide. This was regarded as lending further legitimacy to the practices although the penal code remained unchanged.[7] Interestingly, the amendment to the Burial Act included reference to life-terminating acts performed without the patient's explicit request; they were to be reported in the same way as euthanasia and assisted suicide. While many commentators insist that a tolerance of euthanasia and assisted suicide do not lead to a tolerance of nonvoluntary euthanasia [8] we wonder if this change to the notification procedure does not go beyond mere acknowledgement of the practice of nonvoluntary euthanasia to a tacit acceptance of it.

    Furthermore, there are those who believe that the Remmelink Commission's figures of death by euthanasia are low. Factoring in the number of times pain medication was administered with the intention of hastening death raises the number of deaths by euthanasia to 8,100.[9] Including the number of times physicians withheld or withdrew treatment to hasten death without the patient's request increases the incidence of non voluntary euthanasia "from 1,000 to 4,200 or even 8,000 such cases."[10] Obviously there is some confusion about the extent to which assisted death is practiced in the Netherlands. As one commentator put it, "all that is known with certainty is that euthanasia in the Netherlands is being practiced on a scale vastly exceeding the 'known' (truthfully reported and recorded) cases."[11] Within this perplexing climate, vulnerable members of the community live in fear that voluntary euthanasia will give way to nonvoluntary and perhaps even involuntary euthanasia as they have their deaths hastened against their wills.[ 12] At the very least, far from being a model of patient autonomy in practice, the situation in the Netherlands is a throw back to paternalism because, "As the Remmelink Commission shows, in most cases of ending human life, it is the physician who decides that it is appropriate to hasten death."[13]

    We believe that Canada must take a lesson from the experience of the Netherlands and recognize the difficulty in preventing abuses in the practice of assisted death. Ensuring that patients have made the request without coercion, that doctors have undertaken sufficient consultation in each case, that adequate time has passed between the patient's request and the actual procedure — all of these have defied regulation.[ 14] As well, we believe that the findings of the Remmelink Commission show how fine the line is between voluntary active euthanasia and nonvoluntary euthanasia as well as how difficult it is to protect vulnerable members of our community from those who would make and act on decisions about their quality of life. While we could rise to this challenge by creating a whole new level of bureaucracy to regulate and police the practice of euthanasia and assisted suicide, we believe our limited resources would be better spent supporting people in their dying. In this way we believe that we will have truly succeeded where the Netherlands has failed.

  5. The Importance of Canada's Global Role in Humanitarian Causes

    Currently Canada enjoys a reputation as a nation committed to the protection of human rights. The country's Human Rights Act and Charter of Rights and Freedoms reflect an abiding respect and sensitivity for the dignity of the human person. At the same time, we are a country that continues to struggle with a number of justice issues particularly in the areas of aboriginal rights, incidents of racism and violence, and the needs of persons with disabilities. Canada's sensitivity to these problems and its readiness to address human rights issues speak of a country committed to the preservation of life.

    We believe that Canada must continue its role as a global leader in humanitarian causes by committing itself to the care of the dying. In our experience, the request for assisted death is usually a cry from the heart prompted by fear — fear of dying unloved, of being abandoned, of suffering and dying alone. Rather than pursue aid-in-dying as an answer to these cries, we believe that Canada could make a real contribution by pledging itself to care-in-dying. In other words, Canadian health care would undertake to ensure that all persons near death — from the very young to the very old, from those who are able to speak for themselves to those who have lost that ability or perhaps never had it at all — would receive unconditional care in their dying. Dying persons would be explicitly acknowledged as members of a larger community committed to attending to the fears that burden them. If Canadian health care providers can institute effective practices to promote care-in-dying, not only will Canada be caring well for the dying members of its own community, it will also have a very fine gift to give to the global community — a model of health care that values healing and compassion without apology.

Conclusion

The Catholic Health Association of Canada cannot state strongly enough its opposition to the legalization and practice of euthanasia and assisted suicide. Our plea is that Canadians turn away from aid-in-dying and actively pursue care-in-dying, that is, make explicit efforts to care well for persons near death by valuing them in their dying, by caring for them unconditionally, by being willing to journey with them. This is what lies at the heart of our ministry to those who are suffering, those who are terminally ill, those who are dying. Our commitment to care-in-dying means that we would welcome the opportunity to put our resources and expertise at the disposal of those who would join with us in transforming Canadian health care in this way.

Recommendations

  1. The Catholic Health Association of Canada urges the senate committee on euthanasia and assisted suicide to recommend against the legalization and practice of euthanasia and assisted suicide.

    In our role as health care providers and advocates, we believe it is not enough simply to oppose euthanasia and assisted suicide. We urge the Senate Committee to recommend that positive steps be taken to ensure that patients receive adequate care in their dying. With this is mind we put forward the following:

  2. Palliative Care

    Palliative care practitioners, by attending to the physical, emotional and spiritual needs of dying patients and by directing all treatment and care to patients' comfort in their final days, provide an exemplary model in the care of the dying. This model also incorporates respite care, that is the partnering of health care facilities with the larger community to provide families with the support and resources they may need when they undertake to care for a dying relative. The Catholic Health Association of Canada believes that palliative care is an essential component of the continuum of care and we are committed to offering it as part of our holistic and comprehensive approach to health care.

    We urge the senate committee to recommend that palliative care be an integral component of health care delivery in Canada. Concretely this means that through supportive legislation and guidelines, reallocation of resources and establishment of financial incentives, the government support the creation and maintenance of community-based palliative care and hospice programs as well as the efforts of health care facilities to provide this service to their patients and residents either by having a palliative care unit on site or by having access to palliative care specialists.

  3. Long Term Care

    Long term care facilities are often regarded as places where persons suffering from infirmity and debility await death — which does little justice to the residents or to the persons who care for them. And yet, with severe budgetary constraints affecting health care, providers of long term care must contend with cuts to staff and services even as their clients require heavier care. We believe that this situation is putting these very vulnerable members of our community at risk of being neglected and receiving less than adequate care, of being unfairly labeled a burden to our society and a drain on our resources, of being perceived as enduring lives not worth living. We believe that to ensure its own well-being, society must accept the challenge posed by long term care. We must promote not only care-in-dying but care-in-living, especially for those who require a long term commitment to their care.

    We urge the senate committee to recommend that long term care, whether based in the community or in an institution, be revalued and given priority as a provision of care that is vital to the well-being not only of its clients but of society as a whole. Concretely this means providing directives and incentives to study and improve the quality of care available to those requiring long term care. It also means implementing programs in the media and education that would portray and celebrate even the most apparently compromised persons as full and valuable members of the Canadian community and acknowledging those who care for them as making an important contribution to the well-being of patients and the community.

  4. Research

    We believe that, rather than pursue assisted death, Canadian health care should aim to make it possible for dying persons receive adequate care-in-dying. To this end, we urge the senate committee to recommend that research be conducted into the needs of dying patients, their families and caregivers and that the findings be used to shape health care policies and practices around end-of-life care. Thus Canadian health care providers would come closer to ensuring that wherever people died — in the community or in a health care facility — they would die well, and that families and caregivers would receive effective support in their care of persons near death.

References

  1. Viktor E. Frankl, The Doctor and the Soul: From Psychotherapy to Logotherapy, translated by Richard and Clara Winston (New York: Vintage Books, 1965): 70.
  2. Elisabeth Klibler-Ross, On Death and Dying, London: The Macmillan Company, 1969): 5.
  3. Ibid., p. 6.
  4. Bernard Haring. Medical Ethics, edited by Gabrielle L. Jean (Slough, England: St. Paul Publishers, 1972): 200.
  5. Johannes J.M. van Delden, Loes Pijnenborg and Paul J. van der Maas, "Dances with Data" in Bioethics 7 (1993): 324.
  6. Loes Pijnenborg, et. al., "Life-terminating acts without explicit request of patient" in Lancet 341 (1993): 1197.
  7. Johannes J.M. van Delden, Loes Pijnenborg and Paul J. van der Maas, "The Remmelink Study: Two Years Later" in Hastings Center Report 23 (Nov.-Dec. 1993): 25.
  8. Pijnenborg, Lancet (1993): 1199; van Delden, Bioethics (1993): 327-8.
  9. Henk A.M.J. ten Have and Jos V.M. Welie, "Euthanasia: Normal Medical Practice?" in Hastings Center Report 22 (Mar.-Apr. 1992): 35.
  10. Ibid., p. 36.
  11. John Keown, "On Regulating Death" in Hastings Center Report 22 (Mar.-Apr. 1992): 42.
  12. Richard Fenigsen, "A Case Against Dutch Euthanasia" in Hastings Center Report 19 (Jan.-Feb. 1989) Supplement: 26.
  13. ten Have, Hastings Center Report 22 (Mar.-Apr. 1992): 38.
  14. Keown, Hastings Center Report 22 (Mar.-Apr. 1992): 42.