Volume 8, Number 2
 
LAMENTATION AND EUTHANASIA

 

JOHN F. SCOTT, MD

 

False presuppositions about palliative care confuse the euthanasia debate. Palliative care, at a clinical and psychologic level, is the affirmation of life and not a choosing of death. Pain relief is achieved without hastening death. The obstacles to free and informed consent for euthanasia and the potential for abuse are staggering in this vulnerable patient population in which there is an 85% prevalence of cognitive failure. The central and most dangerous supposition is that the dying are asking for death by euthanasia. We fail to recognize their struggle as lamentation. An analysis of the lament as a deeply embedded cultural and psychologic response pattern to suffering helps us to respond not only to the cry of our patient but also to our own lament as caregivers.

 

The confusion surrounding the issue of euthanasia and assisted suicide derives from a set of false suppositions about palliative care, pain relief, consent and compassion. The central, and most dangerous, of these suppositions is that the dying are crying out for death. There has been widespread failure to appreciate the role and function of lamentation in human experience and clinical practice. Clinicians have the privilege to hear and even to share in their patient's lament of pain, fear and helplessness. At the heart of this lament is not a cry for death but a cry for life. By giving our patients the freedom to cry out their lament without fear of being misinterpreted, we liberate ourselves to return to a more realistic and humble view of our vocation.

False Suppositions
 

Behind the drive to provide euthanasia to persons with terminal or chronic illness is a series of false suppositions and deceptions that must be challenged. When fuelled by fear and anger these lies have pushed many Canadians to accept the assertion that euthanasia is required to relieve suffering.

Choosing Death and Palliative Care
 

Over the next decade I predict the term, palliative care, will be "hijacked" by the euthanasia lobby. The deception is spreading that a person can have "death with dignity" only by choosing death through active or passive euthanasia. Unless we issue a strong challenge, palliative care may soon become a euphemism or synonym for choosing death, thus making a mockery of its origin as the active alternative to euthanasia.

 

As defined by Health and Welfare Canada, palliative care is "a program of active compassionate care primarily directed towards improving the quality of life for the dying."1 Palliative care is a philosophy and a system of care that affirms life when a person with irreversible disease is approaching death; care that enables a person to live as fully as possible until they die.

 

Palliative care is practised in the context of advanced disease - like cancer and acquired immunodeficiency syndrome - when cure is no longer possible and when attempts to prolong life become increasingly ineffective. In palliative care we assist colleagues as they come to recognize when a disease is irreversible and death is near. Certainly, in these circumstances we encourage withdrawal of any investigations or treatments that are no longer achieving their intended purpose. Often, their continuation may reflect a frantic and futile attempt to hold back death even when it is imminent. However, in these situations cessation of therapy does not constitute "passive euthanasia." Death is not the intended purpose of the withdrawal or withholding of treatment. Death would come with or without the therapy, and often the withdrawal has little affect on the timing of death. 'Our society believes the lie that modern medicine controls the quality and timing of death and life. In reality we control very little. Our ability to resuscitate, prolong and cure is partial and transitory.

 

Palliative care involves a shift of treatment goals - from cure and prolongation to the control of suffering. Often this shift will be reflected in the cessation of some therapies and the initiation of new symptom-directed ones. However, palliative care is not passive euthanasia because at its heart is the affirmation of life not the choosing of death.

Pain, Sedation and Death

 

Canadians must not believe the lie that they are faced with the choice between a quick, "good" death and a slow painful death. Hospice and palliative care have demonstrated to the world that the pain and other symptoms of advanced disease can be relieved.2,3 Certainly, Canada still has much unrelieved suffering, but most of this springs from the lack of a provincial government policy and funding for palliative care. The pain and other symptoms of terminal illness can be relieved through a strategy of education, research and increased bedside services. Both the lay and professional press confuse the Canadian public by associating the term "palliative care" with actions that hasten death. This is a serious misunderstanding. Good palliative care and the use of techniques and drugs to relieve pain do not hasten death. Likewise, with increasing frequency, we hear comments that link palliative care with sedating the dying - a linkage we must reject. The goal of palliative care is not sedation but the relief of symptoms while leaving the patient as alert as the underlying disease can allow. Seventeen years ago, when palliative care began in Canada, morphine taken orally was first introduced for the control of cancer pain. At that time, doctors and patients had false fears that morphine would precipitate addiction, sedation and rapid death. After years of education and demonstration, we have decreased much of this misunderstanding and fear. Now, however, we are faced with the possibility that all of this work will go for naught. The drugs we depend on for fine-tuning symptom control can be overprescribed to hasten death. A drift into euthanasia using the drugs of palliative care will wipe out the advances of the last two decades and lead to widespread pain and other suffering.

 

It is a sound ethical principle that terminally ill patients should have relief of pain and other symptoms even where such care may involve some risk of the unintended effect of shortening life. However, palliative-care physicians recognize that this choice is extremely rare. In fact, the risk of shortening life through opioid treatment is far smaller than the risk of treatment complications in other areas of medicine. None the less, the constant repetition of this principle, in lay press and professional discussions, perpetuates old myths and fears to the point at which Canadians may conclude, falsely, that this is a daily choice in palliative care. Also, it may lead physicians who believe in active euthanasia to feel protected when they use overdoses to hasten death on the pretext of symptom relief. Far from decreasing suffering in Canada, such a development would unleash a new wave of pain and anguish. The fear of dying would be aggravated by a widespread distrust of doctors, palliative care and the drugs used in symptom relief.

Mercy and Power

 

Proponents of Dutch-style euthanasia present this intervention as an act of mercy for the physician and an act of control for the patient. However, in the North American context, physicians tempted by euthanasia often are associated with a high-technology, controlling, patronizing style of medicine, which pays only lip service to patient consent and symptom relief. In the last 50 years developments in medicine have so shifted our traditional sense of vocation that we believe the lie that we can control health, disease and even death. At times, this need to maintain control drives us to frantic attempts to prolong life even when death is imminent and irreversible. However, when we recognize the futility of these treatments, we may be tempted to endorse euthanasia as the final act of control. In saying this, I do not mean that physicians act with the intention of manipulating or imposing their value judgements on their patients. In my role as a palliative medicine consultant for almost two decades, however, I have observed the struggle of my colleagues in coming to grips with the death of their patients. Their psychologic and political behaviour suggests to me that, with rare exceptions, the drive toward euthanasia derives its energy not from mercy but from the need for control.

 

On the surface, euthanasia appears to empower patients, granting them additional choices. However, this apparent increase in patient control is largely an illusion. The overall effect of sanctioned euthanasia in our society will be to give more power to the powerful and thereby increase the powerlessness of the very sick.

Consent or Obligation

 

Society must affirm the competent adult's right to free and informed consent in all areas of health care, especially as it applies to decisions to withdraw or withhold treatment. However, most advocates of euthanasia dangerously simplify the complex process of decision making at the end of life. For example, they gloss over the great difficulty of assessing competence in the terminally ill patient. In the last month of life, approximately 85% of patients with cancer have major deficits in brain function due to the effects of disease, drugs and secondary metabolic changes.4,5 Furthermore, major obstacles must be overcome to ensure that consent is informed and free. Patients facing terminal illness suffer significant psychologic trauma that may show itself in denial, mood changes or rapidly shifting attitudes toward treatment. The attending physician must offer and discuss, on several occasions, information about disease progression, prognosis and therapy options. Frequently such patients change their minds as they come to grips with advanced disease, and we must acknowledge that treatment decisions in this area often are ambiguous and fluctuating.

 

Physicians who have little or no training in psychology and ethics often have major communication problems with emotion-laden decisions. Already, in most hospitals, the process of obtaining patient consent is in a shambles. On the basis of what exists now we have no evidence that extremely vulnerable patients will be provided with adequate information and protected from conscious or unconscious coercion. The doctor, nurse, administrator and family member are not neutral, objective observers who monitor and respond to patient wishes. Each have vested interests and emotional needs, such as career goals and the desire to free beds or cut costs, all of which may be in direct conflict with the patient's survival. These patients are extremely vulnerable, and the possibility of abuse is high.

 

Such vulnerable patients may feel under pressure or obligation to die quickly. In this environment euthanasia would not be restricted to those in whom death is imminent or even to the competent. Then it would be impossible to prevent the offer of euthanasia to anyone labelled by the system as having "poor quality of life." Consent for euthanasia can be neither free nor informed unless one of the alternatives we offer is active palliative care, which not only relieves symptoms but also provides adequate resources and time for compassionate personalized care.

Lamentation
 

As clinicians we cannot be restricted to the arena of intellectual or political debate. We must return to the bedside and come face to face with a patient who cries out, "I wish I would die. Let me die. Help me to die." Before all else we need to hear the patient's cry in the context of lamentation.

My God, my God, why have you forsaken me?
Why are you so far from saving me, so far
from the words of my groaning? 0 my God
I cry out by day but you do not answer
Psalm 22

[Added here from CHN's page See ME! ]

 

The common phenomenon of lamentation is seen in all cultures of the ancient and modern world and across all socioeconomic groups. The lament is both a literary motif and a psychologic pattern; both an individual and a communal response to pain and death. The lament is triggered by varied forms of suffering: physical pain, impending death, bereavement, military defeat, broken relationships, humiliation. The lament I hear on my patients' lips is a passionate expression of total pain. It is a cry of the spirit. Depending on cultural restrictions, it issues forth with tears and moans and intense, urgent emotion. The lament begins as a repetitive description of the sources of suffering, a listing of complaints lamenting the past - unfulfilled dreams and relationships, regrets and guilt - the present - physical pain, loss of function and role - and the future - impending death, family's future distress. It is a cry of fear and anger and despair. The cry may be addressed to God or family or doctor, but often it is a diffuse moan. This is communication, but it is not packaged, rational information for use in decision making and negotiation with professionals. This is the verbal overflow of an inner struggle. The lament is more than a recounting of pains; it is a plea that begs for help, for relationship, for deliverance. Lament is not a single event but a process - an agonizing process of finding meaning in the midst of suffering. It is a cry that begs us to come closer.

 

The Hebraic pattern of lamentation, as seen in one-third of the Psalter and the book of Job, is to begin in lament but gradually to work through pain to a place of hope, reconciliation and peace. Commonly the lament includes a cry for death, which is phrased in a variety of ways - "I would be better off dead," "I wish I were dead," "I can't go on," "Let me die," "Help me to die."

 

In Western cultures, the social demand to control emotion often leads to hidden forms of nonverbal or symbolic lament, such as withdrawal, increased physical pain or vomiting, dreams, exaggerated anger or grief. Whether hidden or expressed, the lament contains a cry for death in a complex mix of horror and longing. Yet, if we go beyond or inside that cry for death, we find a cry for life.

 

Suicide is rare among cancer patients even when strength and means for it are available. The lament is not a cry of depression and suicidal ideation. Despite its frequent repetition of the word or symbol of death, the lament is a cry for life. Its emotional content demands and invites human relationships. The need to lament and the pattern of lament is embedded deeply in the human psyche. When death forms a central part of a lament ("I want to die"), the health care system is in danger of misinterpreting this cry. When a patient cries out for an end to suffering, that person is not requesting a euthanasia consent form; the cry does not declare a consumer's choice and demand a bureaucratic and clinical response. For us to interpret this cry as a legal request for death is to miss the mark completely. In fact, the lament invites us to affirm life.

 

What about our lament? As healers in the presence of suffering we, too, lament. When we hear our patient's lament we may experience false guilt and view the suffering as our responsibility, to be resolved through clinical action. When drugs or surgery cannot relieve the complaint, we may contemplate death as a treatment. Instead, as doctors and caregivers, we must learn to listen to lament, resonate with its pain but not feel driven to frantic action.

 

As educators of health care professionals, we must provide an opportunity and a safe milieu in which students can learn to listen. This learning process will include exposure to role models, opportunities to practise communication techniques under supervision, and frequent use of evaluation and feedback methods to highlight areas of weakness. More importantly, students in the health professions must learn to listen to their own lament and to explore the limits of their vocation. This may be a fearful experience, bringing old griefs and insecurities to light. Professional educators must be prepared to provide the same support to students and colleagues that they give to their patients.

 

Yes, we struggle. As we watch suffering and listen to lamentation, we may be tempted to cry out for death on our patient's behalf. We should not suppress the urge to share our patient's lament and to shout our own. Yes, cry out, even cry out for death, but reject the temptation to kill. Hear the cry for life at the heart of the lament. Do not respond presumptuously to the pain by silencing the one who issues the cry.

 

In the face of suffering, we must learn to listen and wait. This is an active waiting during which we provide pain relief and palliative care. As we wait, paradoxically we become a new source of hope and life for the one who suffers, both through our professional skill in comforting and in our personal commitment to share the lament. In the face of imminent, irreversible death, our vocation is to wait -not only for death but until the lament of life has come to completion.

Acknowledgement
I thank the editor, Dr. David Roy, and the publisher for permission to use material from an earlier version of this paper, which appeared in The Journal of Palliative Care 1988; 4:119-121

REFERENCES

Department of Medicine, University of Ottawa, Ottawa, Ont.

Correspondence to: Dr John F Scott, Palliative Medicine, University of Ottawa, Elisabeth Bruyère Health Centre, 43 Bruyère St., Ottawa, ON, K1N 5C8

http://www.humanehealthcare.com/Vol8No2/lamentation8-2.html

 


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