Hospice…An Alternative To Euthanasia…
Hospice has been relegated to the periphery of the debate regarding assisted suicide and euthanasia. While it is true that suffering can be controlled and that comprehensive palliative care represents an alternative to euthanasia, suffering among the terminally ill remains common. In its focus on long term goals hospice has unwittingly forfeited a position of public advocacy and must begin to model its convictions in the public arena as well as in clinical practice.
The potential for growth at the end of life has gone unrecognised in this discussion. The fine line between sedation for the control of terminal symptoms and actions intended to end life deserves exploration. This effort is aided by examination of our collective values relative to dying and by recognition of the experience of grief before the moment of death. Life beyond the ability to respond in a meaningful way and the care it demands can both be burdensome. Yet, within these experiences there are also qualities that constitute gift and opportunity
Hospice providers have generally opposed public referendums and legislation that would legalize euthanasia and assisted suicide. Most discussions of such actions focus on suffering. Indeed, people who contemplate or request euthanasia or assistance with suicide do so because of current or anticipated suffering.
Philosophically the two approaches to suffering are widely discrepant. The mission of hospice is care for the terminally ill and their families. Care by its very nature has a quality of continuance. Hospice care is inherently open-ended; extending beyond the patient’s death to bereavement support for loved ones. In contrast, suicide and euthanasia are abrupt, final. An autonomous patient’s informed choice of suicide or euthanasia is a statement that medical care is being rejected; that, in the opinion of the individual, medicine has nothing left to offer. The focus for hospice is on life and the alleviation of suffering. Assisted suicide and euthanasia seeks to avoid suffering through the elimination of the sufferer. However laudable the motives may be, the goal of assisted suicide and euthanasia is death.
Suffering at the end of life does occur. And it must be addressed. On both national and local levels hospice has consistently avoided being strident or controversial. Instead hospice has relied on education and suasion to improve terminal care. Hospice sights are focused on the long term; on important, durable changes in the way care at the end of life is administered. In truth, hospice must share responsibility for tacitly tolerating the continued, needless suffering of many dying patients.
In stating that all physical suffering can be controlled, it would be arrogant to infer that this is always easy. Control of suffering in patients approaching death alone may require involvement of a physician well-read and experienced in palliative care and an informed, experienced pharmacist. There is another critical point, which merits a central place in a hospice response to calls for assisted suicide and euthanasia. Public discussions of this issue frequently infer that dying and suffering are inextricably entwined, and that the best any of us might hope for as we contemplate the terminal phase of life would be to have one’s suffering controlled. Once physical discomfort is controlled, and despite the inherent sadness of impending death, the final months, weeks or days often become a rich, rewarding part of life for the person dying and for their family. Some achieve a personal sense of meaning and purpose of life that seems to have actually been facilitated by their terminal prognosis.
This opportunity, the potential for growth at the end of life, is an essential component of the human experience and it must become an essential feature of the public debate. Cicely Saunders has said, “The often surprising potential for personal and family growth at this stage is one of the strongest objections most hospice workers feel for the legalization of a deliberately hastened death…”
It can not be ignored that many would consider continued life, beyond their ability to respond in a meaningful way, to be at least a philosophical burden, even if they are consciously beyond suffering. Not only for the patient, but also for family and for care providers, continuance of life beyond the ability of the person to respond may represent a burden. This being so, it is necessary to examine this fine line between contracting with a patient to do whatever is necessary to alleviate physical suffering – even to the point of inducing deep sedation – and the intentional ending of the patient’s life.
One might begin to address these questions by examining dignity. To a society that values youth, beauty, energy, productivity and acquisitions to the exclusion of contrasting qualities, dying seems inherently undignified. The word dignity is derived from the Latin, dignitas meaning “honorableness”, esteem and high rank.” In a very real sense, society decides what is dignified. Dignity is reflected in those styles of living, modes of behaviour and aspects of life which society invests with value.
Understanding of the burden of continued care in enhanced by recognizing that the experience of the care providers – by which is meant both the family and professionals who have entered into an authentic relationship with the patient and family – embodies genuine grief. The fact that this grief experience occurs prior to the patient’s biologic death does not alter its identity. Our understanding is served by expanding the concept of grief to include that pain, confusion and sadness that one may feel in caring for a loved one very near death.
Grief is an important, valuable, probably essential, part of the human experience. The notion that anything painful must be ameliorated is a very modern, consumerist, trait that should be questioned.
For the attending physician and for the hospice team: Most importantly, this commitment to continuing care avoids any possibility that we might recommend assisted suicide or euthanasia out of our own motives – whether those motives are our own emotional distress on losing a fond patient, our own lack of familiarity with the medical techniques or technology required for effective symptom management; or our own fatigue.
For families – the families we serve and the families to which we belong: Though much of the personhood of our loved one has been lost by this point in their dying, the continuing care for their body represents an expression of reverence for the person who we have known, cared for and loved. By helping the patient, family members are called to honour the person departing. This type of continuing care is a mature, balanced expression for the inner turmoil – the grief – we may feel.
For patients: Even when physical suffering is controlled there is the continued burden of dependency. Hospice clinicians speak about dependency as the loss of independence, as yet another stress for the dying person, another challenge of acceptance and surrender. And it is all that. But there is another important facet of this experience. There is an aspect of the person’s conscious acceptance of dependency that is a gift. Think of the many strong, proud people for whom, in their dying, dependency with the component feelings of helplessness and embarrassment was accepted for the sake of the others, for the sake of those whom they loved.
The burden of continued care may be the final gift that the dying can give to their loved ones.
And, lastly, for society: The conscious acceptance of these twin burdens – that of continued life beyond responsiveness and that of the care of our patients, friends and family near death – is part of living fully within the human condition. Suicide and euthanasia represents a withholding and an avoidance of these burdens. As patients, out of a desire to protect ones family or out of ones own pain, it is possible to choose suicide and, thus, withhold this burden – and the gift it embodies. To do so robs ones family of an opportunity for grieving that, while painful, is part of full and healthy living. The chance to care for the body and waning personhood of ones family members and ones patients represents a crucial, clarifying force on ourselves as persons and professionals.
It is time for hospice to assert these values in its advocacy of patients and in public debate. Society urgently needs to recognize that these burdens of waning life and continued care are also important gifts. Society would avoid these experiences at its peril, but might realize transformative potential in their embrace.
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