Palliative care: "killing me softly".

Palliative care is the care given to those who are in imminent danger of death. To 'palliate' is to lessen the suffering of a dying person. There is much debate today as to how this should be done. The term "dying," properly understood, applies to a person whose death may reasonably be expected to occur within, at most, 48 hours. There is also, however, much debate about the meaning given to the word "imminent." The major factors spurring these debates are the judgments made by many about "quality of life," whether a certain kind of life is "worth living," and also about the "cost effectiveness" of keeping a person whose life is deemed to be "not worth living."

When a patient is correctly judged to be in imminent danger of death, the traditional ethical view is that he or she should receive hydration and nutrition, by tube or intravenously if necessary, and that the suffering caused by such symptoms as pain, coughing, shortness of breath and anxiety should be controlled. Most important would be the provision of care in regard to the dying person's spiritual and psychological welfare. In short, the emphasis in treatment shifts from cure to care.

"Terminal Sedation"

The traditional approach is much debated, and indeed often not followed today. Frequently palliative care, often called "comfort care," is achieved by means of "terminal sedation" (TS). This has also been called "total sedation" and "palliative sedation." Such interventions are actively promulgated by the National Hospice and Palliative Care Organization (NHPCO). The aim is "to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering." This intervention is considered appropriate not only patients with overwhelming pain from their terminal illness, but also for spiritual or emotional pain, such as depression, not relieved by the counseling of social workers or chaplains. It is not limited to dying patients. NHPCO's policy allows it to be used "at multiple points in a patient's trajectory toward death." (1) It can be based, not on a fatal disease, but on symptoms only and the patient's desire for relief. It is therefore open to abuse.

Furthermore, as sanctioned by the NHPCO, the patient need not be the one who initiates discussion of his or her own TS. (2) If the patient is approached, not before but after the family or healthcare team, he or she may come to accept the idea that his or her life is a burden to others, or is not worth living. Again, according to NHPCO guidelines, the healthcare team can start discussion of the terminal sedation of an incompetent patient with the family and carry it out without any patient involvement. Finally, a patient may choose TS when he or she decides to be a Non-Heart-Beating Organ Donor. (3)

What is TS? The definition given by the NHCPO is, "deliberately inducing and maintaining deep sleep but not deliberately causing death" when there are "intractable symptoms at the end of life ... for which palliative care intervention had failed to provide adequate relief." The term TS is ambiguous. It could mean appropriate sedation intended for terminally ill patients, or sedation used for the purpose of terminating a patient's life. The NHPCO states that TS may be carried out "until death occurs, without concern for irreversibility."

TS and Dehydration

Traditional ethical palliative care includes nutrition and hydration, received either as food and drink, or through a feeding tube or intravenously. These are a necessary part of ordinary humane treatment of any patient at any stage of any disease. Their aim is to allow the bodily organs to function normally, and to prevent such symptoms as hunger and thirst. They are also a most important way of expressing loving concern and solidarity with the helpless. At the very end of life, medically assisted feeding, or even intravenous fluids, may no longer be effective because the patient has entered the final stage of terminal condition. At this point, the patient should be kept comfortable by providing nursing care, ice chips and water, proper hygiene, companionship, and spiritual aid such as the sacraments and the presence of family and friends who will accompany the dying person and pray with him or her.

'Slow Euthanasia'

Everyone appears to agree that we should never intentionally cause death or abandon the dying person. Nonetheless, in the past few years, some ethicists and physicians have proposed TS as a legal alternative to assisted suicide. For many physicians, an essential component of TS is also the withdrawal of all treatment, including even food and water, so that death occurs as soon as possible. This is the case despite the fact that hospice workers know that the pain which dying patients experience can virtually always be controlled. Increasingly, TS is being incorporated into hospice and other "end of life" programs. Many palliative care physicians reject the notion that withdrawal of food and water causes or hastens death, and many health care institutions refuse nutrition and hydration to their palliative care patients.

It has been observed that women are more apt to ask for euthanasia than men. It may be that women, who have been primary caregivers all their lives, feel more of a burden to others than do men when they become sick and disabled. Judging by the figures from Sylvia Canetto's study of the Hemlock Society (Omega: Journal of Death and Dying, September 2001) and Jack Kavorkian's 'mercy killing,' women greatly outnumber men as victims of euthanasia. In Oregon, for example, the main reason that assisted suicide victims gave for requesting a lethal overdose was not to relieve unbearable pain, but fear of future suffering, losing independence, and/or being a "burden" on family members. (4)

Fr. Peter A. Clark, S. J., PhD., a bioethicist, recently stated that in the last few years the Mercy Health System in Philadelphia has been confronted with more and more "elderly and homeless persons who have no family or durable power of attorney for health care and have medical conditions that require mechanical ventilation, artificial nutrition, and hydration by percutaneous endoscopic gastrostomy (a procedure wherein a tube is introduced into the stomach), intravenous antibiotics, various medications, and other similar treatments. In many cases, these treatments are considered non-beneficial by the medical staff and even medically futile. However, since there is no proxy decision maker, these patients are kept alive for weeks and even months when palliative care would be far more beneficial for them. Physicians will not withdraw treatment without some form of consent from a decision maker, for fear of litigation; ... quality of life is being ignored." (5)

The situation in Mercy Health Center illustrates the fact that more and more often, patients are being designated by physicians as 'hopelessly ill,' and their treatment defined as 'non-beneficial' or 'futile.' These are Orwellian terms; meaningless and v dangerous. They can unfortunately become code words for euthanasia in the hands of some. Nancy Valko, a former hospice nurse, has stated that she has "never seen a case where a patient needed to be made permanently unconscious." (6) This form of therapy is what has been called 'total sedation' or 'palliative sedation' or what is sometimes meant by the words 'comfort care.' Yet the pressure to accept euthanasia grows. Many no longer object to "killing me softly." Cost control concerns influencing public hospitals with limited budgets, and profit-oriented health maintenance organizations, and patients, families, and physicians who fear suffering or diminished 'quality of life' are increasingly influencing caregivers who make decisions about life and death. Valko holds that when the unknown actual incidence of terminating consciousness in patients with stroke, dementia, or other serious illnesses is allowed for, the use of TS as "comfort care" may well be approaching epidemic proportions, even outside the hospice area. (7)

Euthanasia

Proponents of euthanasia favor TS as "slow euthanasia," which is "performed extensively today throughout the world in hospitals, nursing homes, hospices, and private homes." (8) Quill and his colleagues suggest that "Terminal sedation and voluntary stopping of eating and drinking would allow clinicians to remain responsive to a wide range of patient suffering, but they are ethically and clinically more complex, and closer to physician-assisted suicide, and voluntary active euthanasia, than is ordinarily acknowledged." TS has also been characterized as "society's wink at euthanasia," and "as a form of psychological defense mechanism for palliative care practitioners, allowing them to focus on keeping a terminally ill patient in a pharmacological oblivion, rather than acknowledge that they may be actively ending someone's life." (9) Gillian Craig, a retired consultant geriatrician in Northhampton, England, holds that prolonged sedation without hydration is, on occasion, tantamount to euthanasia, and that the hospice movement has not grasped the implications of its reluctance to maintain hydration at the end of life. (10)

Voluntary death

Already, by 1993, Bernat and his colleagues had introduced the idea of patient refusal of hydration and nutrition as an alternative to physician-assisted suicide or voluntary active euthanasia. (11) Supporters of this position argue that it derives from "the fundamental right of competent patients to refuse medical treatment," but warned that death by terminal dehydration typically takes several days, and in some cases, three to four weeks. (12, 13, 14)

Death by dehydration is painful and arduous. It can sometimes take up to 12-14 days. In addition to hunger and thirst, the patient may experience drying of mucous membranes in the nose and throat and gastro-intestinal tract, with the result that the he or she may suffer from nausea, vomiting, hemorrhage, and even convulsions. It is not surprising, therefore, that proponents of voluntary euthanasia emphasize that it is important that the physician continue to provide 'palliative care' in order to relieve the distress of the patient and of family members. 'Palliative care,' in this case, means the relief of the symptoms associated with the patient's suicide, a suicide deliberately aided and abetted by the physician. Physicians who support such measures hold that "no adult of sound mind should be forced to endure an existence that he or she rationally considers to be intolerable. Accordingly the physician has a moral obligation not to foreclose the option of voluntary death." (15)

A question of morality

Clearly, the traditional ethical approach to the care of the dying is morally acceptable. This allows for the measured use of sedatives and analgesics for the necessary control of symptoms such as intolerable pain, agitation, and anxiety. It mandates the provision of food and drink (by normal or by technical means) until death, or until such measures are no longer effective. Pope John Paul has stated that "the intrinsic value and personal dignity of every human being do not change, no matter what the concrete circumstances of his or her life. A man, even if seriously ill or disabled in the exercise of his highest function, is and always will be a man, and he will never become a 'vegetable' or an 'animal'." Speaking of the so-called 'persistent vegetative state,' he also said "I should like particularly to show how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering." (16)

TS, in which the patient is kept permanently unconscious, is a different matter. It deprives the patient of consciousness at that most important moment of life, the moment of death, when conscious decisions may have eternal consequences. One wonders if TS and other such draconian measures are ever really medically necessary. TS with terminal dehydration, prescribed by the physician, runs the risk of deliberately shortening the patient's life. This would seem to be an immoral act. Dehydrated patients occasionally take many days, even weeks, to die. Can they all really be assumed to be 'imminently dying'?

Finally, the fact that physicians are already promoting patients' self-starvation along with palliative care as a legitimate and handy way in which to achieve 'non-assisted suicide' is an omen of things to come. Some U.S. physicians fear that the acceptance of TS as 'good practice' could lead to its being considered as a better alternative to physician-assisted suicide or voluntary euthanasia. (17)

Euthanasia, particularly of these subtle kinds, is quietly accepted by many. The ratio between 'the non-working elderly' and the 'working young' is rapidly increasing throughout the world, and is inevitably producing pressure to initiate euthanasia protocols in our hospitals. We have been warned by history. Both the Greek city-states and the Roman Empire fell because, among other reasons, their fertility rates fell. History could repeat itself.

Citizens of every country have a right to know what protocols and policies in regard to 'palliative care' have been established in their public and private health care institutions. All of these protocols and policies should be revealed to the public at large.

References:

(1.) Jamie Goldstein-Shirley and Perry Fine, 'Ethics and Total Sedation'. Total Sedation Educational Resources Draft, Prepared by Task Force of the NHPCO Ethics Committee (Session 8A, March 25, 2001), p.8.

(2.) Ibid. p.10.

(3.) Hallenbach, J.L., 'Terminal Sedation for Intractable Distress, Not Slow Euthanasia but Proper Responsiveness to Suffering.' West J. Med. 1999; 171:222-223.

(4.) Nancy Valko R.N., "Sedated to Death? When 'Comfort Care' becomes dangerous." Women for Faith and Family Organization. Pentecost, 2002. Vol. X111, No. 2. www.wf-f.org/02-2-terminalsedation.html

(5.) Catholic Health Association of the United States, Health Progress, May-June, 2004. http://www.chausa.org

(6.) Ibid. Refer to #4.

(7.) Ibid. Refer to #4.

(8.) Irwin, M. 'Terminal sedation'. Voluntary Euthanasia News, May 2001; p.8-9.

(9.) Quill, T.E.; Lo, B.; Brock, D.W., 'Palliative options of last resort: a comparison of stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia'. J A M A, 1997; 278 :2099-2104.

(10.) Gillian Craig, 'Terminal Sedation,' Catholic Medical Quarterly, Feb. 2002.

(11.) Bernat, J.L.; Gert, B.; Mogienicki, R.P., 'Patient refusal of hydration and nutrition: an alternative to physician-assisted suicide or voluntary active euthanasia.' Arch. Intern. Med. 1993; 153: 2723-8.

(12.) Franklin G. Miller, PhD., Diana E. Meier, MD 'Voluntary Death: A comparison of Terminal Dehydration and Physician-Assisted Suicide'. Annals of Internal Medicine, 1 April, 1998. 128:559-62.

(13.) Sullivan, R.J., Jr., 'Accepting death without artificial nutrition or hydration. 'J. Gen. Intern. Med. 1993; 8:220-4.

(14.) Powel T., Lowenstein B., 'Refusing life-sustaining treatment after catastrophic injury: ethical implications.' J. Law and Med. Ethics. 1996; 24:54-61.

(15.) Ibid. See number 12.

(16.) Address of Pope John Paul II to the participants in the International Congress on "Life Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas." March 20, 2004.

(17.) Ibid. See number 8.

Dr. Shea is a retired diagnostic radiologist and a fellow of the Royal College of Canada. He lives in Toronto