The Nathaniel Centre

"When does palliative care begin?" Notes from a seminar

 

Michael McCabe

Early in July 2011 Te Omanga Hospice, in conjunction with several other healthcare providers, hosted its third biannual "Changing Minds Seminar". The focus of these seminars is to explore the palliative care needs of older people living with chronic and life-challenging illnesses. This year's theme considered the question, "When does care become palliative?"

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Ordinary Means Extraordinary Means: A Valid Distinction?

Michael McCabe
Issue 4, August 2001

A discussion of the distinction between ordinary and extraordinary means of treatment with a consideration of the burdensomeness and the possible benefit of treatment.

The Role of Palliative Care

Frank Brennan

A 76 year old man comes to you. He has prostate cancer. The cancer has spread to his bones. Hr has pain, weakness and loss of appetite. “Look at me” he says “I could do everything once, now I can do practically nothing. My wife is struggling. The doctors have tried all their treatment. It’s no use. I don’t want to live any more. I want to die. What can you do?”

Those who favour and those who disagree with euthanasia start at a common point – the simple acknowledgement of human suffering. Our point of commencement is the same. Our destination is completely different.

What is ‘palliative care’’? To the lay public and indeed to many health professionals there is probably no discipline so enshrouded in mystery and misconception. Yes, I could read to you a technical definition of palliative care but perhaps the best definition I know came not from a doctor, but a lay person and not someone who experienced it but one who regretted he did not. In 2007 Bruce Dawe, the Australian poet, wrote this poem:

White-Water Rafting and Palliative Care ⁱ

If I had understood (when down the river you and I went swirling in that boat)
that there were those who knew the ways of water
and how to use the oars to keep afloat.

I might have been less deafened by the worry,
less stunned by thoughts of what lay up ahead
(the rocks, the darkness threatening to capsize daily),
if I had only realised instead
that help was all around me for the asking.

I never asked, and therefore never knew
that such additional comfort could have helped me
in turn to be more help in comforting you.
I’d have found it easier then to simply hold you
Instead of bobbing to and fro so much,
for it was you who seemed to be more tranquil
and I whom death was reaching out to touch.
If only I had had sufficient knowledge
in that white-water rafting I’d have learned
that there were those around us (with life jackets)
to whom I might have, in that turmoil, turned.

Instead, because I had not thought of rivers,
or rocks, or rapids, and gave way to fears
that seeking help might make a man less manly
and liable to betray himself with tears,
I was less useful then, as twilight deepened,
than I might well have been, had I but known:
however wild the waves that roll around us
no one needs to live (or die) alone…

When then is the difference between palliative care and euthanasia? Palliative care is the concerted endeavour to control pain and other symptoms, to support the patient and the family through this time which is simultaneously challenging and precious and to allow death, when it comes, to be dignified and loving. Note I said endeavour for we cannot guarantee perfection. To be the ones who ‘know the ways of water’. Euthanasia is the deliberate act to cease the life of a patient who is suffering with a serious illness. So when I said our destinations are completely different it is true. One is palliative, the other is obliterative.

There are many myths here. That palliative care is a form of euthanasia. It is not. That withholding or withdrawing treatment is a form of euthanasia. That is a myth. Let me give you an example. An elderly patient with a serious illness affecting her bone marrow such that they cannot make any blood themselves. She is now more reliant on blood transfusions and even they, with time are having less effect. The decision is made between the doctor, the patient and her family to cease the blood transfusions and allow the natural process of dying from the underlying disease to progress. That is withdrawing of treatment. It is not euthanasia. It is simply an appropriate and ethical response to her condition. Yes, in modern medicine we can do many things but we need to recognise a simple and incontrovertible truth – we are all mortal. An 82 year old man with very poor kidney function meets with his kidney specialist. The decision is made not to commence dialysis. This is withholding treatment. It is not euthanasia. Sadly too often patients and families worry it is. ‘’Are we doing the right thing?’’ they ask.

Other myths that abound concern morphine. The first is that prescribing morphine, irrespective of the dose given, is a form of euthanasia. The second is that toward the end of a person’s life the standard of care is to increase opioid doses independent of the pain of the patient. Neither are true. The important consideration here is proportionality. The standard of care is to give morphine proportional to the pain or sedation proportionate to the level of agitation. As Ashby stated ‘’…opioids and sedative drugs can be used quite safely for symptom control without bringing causation into question if the parameters of accepted practice are followed.’’ ⁱⁱ

The difficulty here is one of education. Generations of doctors have graduated with little or no training in pain management, palliative care or the care of the dying patient. Generations of doctors have graduated with no or very limited training in the safe use of opioids. And so we have reaped a bitter harvest of doctors who have both opiophobia and opioignorance. But is it more than that? As Kelly wrote: ‘’To what extent is the issue of assisted suicide or euthanasia symptomatic of the failure to equip doctors with better skills in the care of the dying…? The reactions of doctors tell us less about the appropriateness of euthanasia…than they do about how troubled and problematic the medical responses to a dying patient can be – a ‘’symptom’’ of the problem modern medicine has with dying rather than the solution.’’ ⁱⁱⁱ

How can I reply to him?

How can I reply to the man described above at the opening of this paper? I will sit with him and ask him what troubles him. Is he troubled by symptoms such as pain and nausea? Is it fear of what may occur later, closer to his death? Is he depressed? Is it exasperation about the current situation? Is he worried that he is going to become a progressively greater burden on his family? I will explore but I will never judge. To health professionals working in palliative care this question, or a more explicit request for euthanasia, is a welcome one as it invariably opens u the inner anguish and fears of the patient. It should never be a moment of censure; it is always a moment of liberation.

If a doctor stands with the patient on that precipice where all they can both see is suffering then that would be one thing. We would stand there, mute witnesses to their suffering. Too often the euthanasia debate is characterised as a simple choice between suffering and death. It would be completely understandable if a patient choose death. But that choice is a false choice, a dichotomy that is blind to a third approach – it is blind to the enormous advances made over many decades in actively dealing with the constituent parts of the suffering of human beings in illness – physical, yes, but also the emotional and the spiritual.

Firstly is the patient depressed? That is a very important first enquiry because that can so cloud the mind and we have treatment for that. The patient may not be depressed but feels he/she have lost all hope. Hope is intrinsic to us as human beings. So with serious, progressive disease what can we say to our patients? Wherein lies hope? In the face of this what could possibly be said? It may start with a simple acknowledgment to the patient of the truth. It may slowly reset the focus of care. It may broaden the plane of hope to something that is at once obvious but also, if never said before, a revelation. At this point what the doctor says and how it is said may extend the vision of hope. In simple terms we may say to the patient words to the effect:

Let us look at things clearly. Despite all that we have done together, despite your greatest efforts we have come to a point where there is no hope for cure. We know that. But there are different forms of hope and while there is no hope for cure there is clear hope that you will be comfortable and supported throughout. That you will not be abandoned. That you will always be listened to. That your symptoms will be treated to the best of our ability. That you will not needlessly suffer. And that you will be treated with respect and dignity at all times.

Therein lies the hope. Hope redefined may be hope reaffirmed.

The other issue is dignity. Perhaps the patient feels that they have been stripped of everything, including their dignity. ‘’Look at me – I can’t do anything – I’ve “lost all my dignity.’’ What I say to them are words to the effect: ‘’This disease has done many things to you and it will continue to do so…But what it cannot do is take away who you are, your core, your history, the good things that you have done in your life…They are untouchable.’’ I look beyond the external sense of dignity to the internal or inherent. That sense of dignity has a long antecedence and, indeed, is the foundation of the international human rights documents that emerged after the cataclysmic events of World War II:

Whereas the recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world. ^iv

Chochinov and his group have published widely on the concept of dignity at the end of life. For those patients describing a collapse of their sense of dignity, some of whom requesting an active cessation of their life, a simple, though profound, intervention was to interview the patient at length about their life and to have that transcribed record presented to the patient and their families. ^v

What would a society be like that legalised euthanasia? What deeper changes would be afoot in the society generally and in the medical profession in particular? Would human life, especially vulnerable and ill human life be viewed differently? How would the medical profession respond? Almost by definition it would split the medical profession into those who would participate in euthanasia or physician assisted suicide and those who would not. And if legislation mandated that any doctor who declined to be involved must refer on to another practitioner who would, you would immediately have conscientious objectors. I have no doubt most, if not all, of my colleagues working in palliative care would be amongst them.

Rights based discourse

We often hear the mantra from those supporting euthanasia ‘’It is my right to die with dignity.’’ I do not have trouble with the literal words in that statement. What is problematic is the content of the obligation. If that mantra seriously implies that the only way of dying with dignity is euthanasia then I would seriously disagree. And what of this rights based discourse? Given the paucity of palliative care services around the world, surely as a foundational issue would it not be more productive to argue for a right to palliative care rather than a right to euthanasia? This is precisely the call from the international bodies overseeing my discipline – that the provision of palliative care should be seen as a basic human right. ^vi One right is solidly built on foundations of international law. ^vii The other is not. Before the legal debate, let us have the medical debate.

Before concluding, allow me to read a short narrative drawn from my work:

Words ^viii

I met her at the main hospital. She had metastatic colorectal cancer. She had received extensive chemotherapy. Her disease had progressed and her options were rapidly diminishing. She was becoming thinner. I talked to her about palliative care and what the Hospice had to offer. She agreed to come over to the Hospice.

Later that week I saw her there. She was in a single room. She lay weakly. The bed covers seemed too big for her. Her mouth was dry. She spoke slowly. After discussing her symptoms I said to her that I thought her time was approaching. She said: ‘’Well…what can I say?’’ I asked her what the hardest aspect of her illness was. She replied: ‘’Leaving my husband.’’

I met Jack twice over the next days. On each occasion, he sat by her bed, speaking as softly as she, his eyes burning with suffering. By the week’s end she had deteriorated further. She was now unrousable and dying. I entered the room. Jack sat, as usual, by her bed, his right hand resting on hers. Next to him was their son. I explained the process of dying and said that I did not think that it would be long. There was a pause. Finally, Jack looked up at me and asked: ‘’Doctor, can’t you give her a needle…?’’

I had heard the question before, from relatives of other patients, at other deathbeds. I knew how the sentence would end. I was ready with an answer. I knew that the sentence would end with a ‘’needle to end her suffering’’ or ‘’a needle to put her out of her misery’’. My answer, prepared and clear would be no, that ethically and legally we can not cause any one to die or hasten their death and that the natural process of one to die or hasten their death and that the natural process of dying, already progressing, would inevitably lead to her death.

But the sentence did not end that way. The sentence ended in a way that was so different, unexpected and on a plane that was so separate from what I anticipated. He completed the sentence by saying ‘’Doctor, can’t you give her a needle to wake her, so that we can speak one last time?’’

I stood there. Silently I reached out my hand to his hand that lay on hers. Three hands. I felt many things. Humbled that my expectations, the grooved furrow of the plough across the field of my working day, was not prepared for this question. That the question itself arose deep from his anguish of loss. That a la person could honestly believe that we could do such a thing – wake a dying patient to speak for one last time. Have we so raised the image of modern medicine that doctors are seen to be capable of the miraculous? And I began to think of language – the language of our patients and their loved ones. And occasionally a comment or question can be both practical and metaphorical, literal and figurative. And how language can rarely capture the exquisite mystery present in the process of dying. Or is it so rare? Maybe we need to be more open to the asides, the whispered thought, the silence that so regularly envelops it all. And finally it reminded me that talk of death is not, nor should ever be clichéd, that every encounter, just like every death, is unique and that our confident anticipation of the content of all encounters rests on a flawed premise. The premise of sameness.

We will be surprised and humbled, moved and challenged. And rightly so.

‘’No,’’ I replied ‘’sadly, there is no such needle. I cannot wake her now. But Jack, talk to her, she’ll know you’re here…Talk to her of everything, everything that is in your heart.’’

Quietly, and in a whisper to match her breathing, he replied: ‘’I’ve been speaking of nothing else.’’

I will make a final point. One of the most powerful reasons articulated in the promotion of euthanasia is self-determination. We are used to control. We want it even, and perhaps especially, at this point in our lives. Our lives, including the most orchestrated, float on a sea of uncertainty. That uncertainty ebbs beneath us. We may imagine we are creatures who think the world into our image. But we are not gods; we are humans, frail and vulnerable. We yearn for certainty. We are met by mystery.

Euthanasia offers certainty. A natural death promises mystery.

Dr Frank Brennan MBBS, FRACP, FAChPM, LLB
Palliative Care Physician
Calvary Hospital
Kogarah, NSW, Australia

This presentation was delivered at The Euthanasia Debate: Why Now? Conference held at Te Papa Museum, Wellington, New Zealand, Friday April 8, 2011

Danger Ahead

Baroness Ilora Finlay is a doctor, professor of palliative medicine at Cardiff University and an independent crossbench member of the House of Lords. She explains to Michael Fitzsimons how her opposition to euthanasia is not on religious grounds, but entirely a matter of public safety.

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“Every moment is an opportunity for greatness” (A Heschel)

Sinéad Donnelly

Sometimes at lunchtime, when I am tired and hungry, I can be irritable. So it is not the best time as a palliative medicine doctor to meet a new patient.

This day, however, I did not take my own advice and with my nurse colleague, Marion, I arrive on a busy ward to meet Mr Murphy as he slowly gets down off a hospital trolley following his procedure.

'Thank God I waited patiently for his hearing aid.

Thank God I waited for the student nurse to find his hearing aid in the orange box.

Thank God we noticed the glint in his eyes – "the twinkle" Marion called it.

Thank God we admired him being married five years at eighty eight;

to Sophie – he stressed "Sophia" as the correct pronunciation; "She is particular about that."

Thank God we stayed around waiting to meet him

as he slowly got off the trolley with plasma infusing after endoscopy.

Thank God I was kind to him.

Because suddenly two hours later he died.'

Dr Sinéad Donnelly M.D. is from Ireland working as a palliative medicine physician at Wellington Regional Hospital.

Why the elderly should fear euthanasia

David Richmond

The proposal that euthanasia and/or physician assisted suicide (PAS) should be legalised targets older people. The reason is not hard to find: people at that end of the age spectrum are beginning to realise that their lives are not infinite. Generally speaking, people fear the process of dying more than death itself. Hence there is a ready audience for the line that older people have the most to gain from legalising these practices. It is ironic, however, that the very people who are the main supporters of legalised euthanasia or PAS have the most to fear from it. What should they fear?

1. They should fear being groomed for a death they really don't want

As a practicing geriatrician I heard time and again, older people telling me that they "didn't want be a burden." Most were not terminally ill: just sensitive to a society that tends to regard its older population as a burden, and therefore likely to accede to even subtle suggestions that they have 'had a good innings.' Dutch statistics show that more than 30% of people requesting euthanasia do so on grounds including not wishing to be 'a burden'. Is that really freedom of choice? The elderly are not the only ones susceptible to this. Doctor Richard Fenigsen reported that in Holland, when Parliament was first considering making euthanasia legal, a group of handicapped adults wrote as follows to the Parliamentary Committee for Health Care and Justice:

"We feel our lives threatened...We realise that we cost the community a lot...Many people think we are useless...Often we notice that we are being talked into desiring death...We will find it extremely dangerous and frightening if the new medical legislation includes euthanasia."

For many older people, the source of the pressure of being thought a 'burden' is their family; younger members feeling thwarted because they are unable to access their older relative's resources, burdensome care-giving or soured family relationships may all contribute. Those of us who work in the sector are regularly faced with such issues.

2. They should fear becoming the victims of death by euthanasia without their consent

Older people almost inevitably at some point cede control of their environment to others and are therefore at risk from those health professionals and others who assume that control and have the power to harm them - including killing them without their informed consent. In Holland the practice has moved rapidly from euthanasia on request (legal) to euthanasia of people who could not, or if they could have, did not, request it. Older people are the majority of victims. In Holland and Belgium many more people suffer the ultimate loss of dignity by being euthanased without their consent than are euthanased on request. If euthanasia were to be legalised, older people would assuredly discover that a minority's fear of dying is replaced by a majority fear of being killed without their consent - with the noblest intentions of course. Psychiatry Professor Herbert Hendin of New York, after personally investigating the practice of euthanasia in Holland, concluded that guidelines established by the Dutch for the practice of assisted suicide and euthanasia were consistently violated and could not be enforced. The most important thing we can learn from the Dutch experience over 30 years is that the practice of euthanasia cannot be controlled by legislation.

3. They should be afraid of an unnecessary end by euthanasia because of incorrect diagnosis or prognosis

As we age, we are increasingly afflicted by disease. It is well recognised that all diagnoses, even in these days of advanced technology, are a matter of probability. That is, there is a chance that the diagnosis is not correct. According to Dr. Jerome Groopman , up to 15% of all diagnoses are incorrect. Clearly, the more diseases one has, the greater the likelihood that at least one diagnosis is incorrect. On average 33% of people aged 65 and over have three or more longstanding diseases requiring treatment. The older one gets, the greater the number of such disorders. The annals of medicine abound with incorrect diagnoses and erroneous predictions of immanent death. There are many records of people being euthanased where autopsies subsequently showed no evidence of fatal disease. In a recent Listener article, the first-hand account of a woman who recovered from a severe episode of blood poisoning included the following words highlighted by the editor: "I had always had an ambivalent attitude to voluntary euthanasia, but to my shock, I found myself vividly understanding the arguments in its favour". But consider: had her illness been in Holland, where euthanasia is legal, and had she expressed such sentiments to her doctors, she might well have been voluntarily euthanased; in which case she would not have been here to tell her story.

Older New Zealanders have to realise that if they allow legislation to pass so that euthanasia and/or PAS become legitimate components of therapy, in thinking that they have seized control over their life's end they will discover too late that they have actually lost it.

Emeritus Professor David Richmond was the Inaugural Masonic Professor of Geriatric Medicine and is the Founder and Chairman of the HOPE Foundation for Research on Ageing

Footnotes:

¹ Fenigsen R. A case against Dutch euthanasia.  Ethics and Medicine 1990: 6: 11 – 18.

² Hendin H.  Commentary. The case against physician- assisted suicide – For the right to end of life care. Psych. Times, Vol XXI #2, February 2004.

³ Groopman, J.E.  How Doctors Think. Mariner Press 2008

⁴ Melbourne Herald Sun 27 May 2002

⁵ The Listener, February 19 – 25 2011, pages 26 – 28.

The Last Word - The Catholic case for advance directives

Daniel P Sulmasy

Out of fear that euthanasia and assisted suicide may be legalized, some Catholic commentators have raised questions about the ethics of advance directives for medical decisions. They have almost made it seem as if such documents are intrinsically tied to the "culture of death" and ought to be avoided by faithful Catholics. This is a mistaken view.

An advance directive is a document, like a living will or durable power of attorney for health care, by which a person provides guidance for others who may be called upon to make medical decisions on behalf of the issuer of the directive if he or she is unable to do so.

Like any good thing, advance directives are susceptible to abuse, but they are not intrinsically connected with euthanasia. Although not a panacea, they can be very useful. Advance directives should be viewed by Catholic Christians as tools to help families and physicians make good decisions about patients who cannot speak for themselves at the end of life. They fit squarely within the Catholic tradition of forgoing extraordinary means of care, a tradition that springs from four natural law principles that can be held independent of any faith commitments.

The first principle is the dignity of the human person. Each individual, by virtue of being human, has an intrinsic value Catholics call dignity. This is the fundamental principle of all interpersonal morality. Medicine reaches out to the sick first and foremost because each person has an intrinsic dignity.

The second principle is the duty to preserve life. This duty, while not absolute, is based on natural instincts, gratitude for the gift of life and duties to fulfill responsibilities toward others.

The third principle is the fact of finitude. Human beings are finite. People get sick; they die. Medicine is a finite craft, and all patients ultimately die. Individual and collective resources are also finite.

The fourth principle is the diversity of the human. Individuals are different from each other in all sorts of ways. Decisions must take into account the uniqueness of each case.

Extraordinary Meanings

Suicide and euthanasia are considered immoral because they violate the dignity of the person and undermine the duty to preserve life, which can never be made consistent with a direct intention to eliminate life. Western moral thinking, however, has always recognized the fact of finitude. The duty to preserve life, therefore, is limited. Hippocrates does not counsel physicians to keep treating patients to the bitter end. Rather, he urges physicians not to treat those who are "overmastered" by disease, recognizing that "in such cases medicine is powerless." Today, it is recognized that even with the most sophisticated technology, doctors cannot keep patients alive forever.

It is from these principles, simultaneously affirming the dignity of the human person and human finitude, that the moral tradition of forgoing extraordinary means of care arose. To say that an intervention is extraordinary signifies that its use is optional—that one need not use it. One should not be confused by the use of the words ordinary and extraordinary in everyday speech. Extraordinary is used here as a technical term meaning non-obligatory, and ordinary is used to mean obligatory.

By tradition, an intervention is deemed extraordinary if it is futile, that is, if it will not work (will not cure the patient, reverse the condition or appreciably forestall an imminent death) or if the burdens imposed by the intervention—physically, psychologically, socially, economically, morally and spiritually—outweigh the benefits. By tradition, one does not focus on the intervention itself, a priori, divorced from a case. The adjectives ordinary and extraordinary modify one's duty to use an intervention; they do not modify machines or treatments. That means one can never say, "This treatment is always ordinary," or "That treatment is always extraordinary."

In keeping with the principle of diversity, these judgments always depend upon the circumstances. So, for example, one can never say, "Ventilators are extraordinary and antibiotics are ordinary." Surgery for a ruptured appendix, for instance, might require a ventilator. Other things being equal, the duty to use a ventilator would be ordinary in such circumstances. But in the case of pneumonia in a patient with untreatable metastatic or widespread cancer, a ventilator might not appreciably forestall an imminent death. Even if not strictly futile, the burdens could certainly be judged to outweigh the benefits and so the duty to use the very same machine, a ventilator, would be extraordinary in such circumstances. Even antibiotics could be considered an extraordinary means in such a case. Since antibiotics would preserve the patient's life perhaps a few hours or days, in this case even the burden of being stuck with a needle could be judged to outweigh the benefits. In such circumstances, the duty to use antibiotics would be morally optional. No intervention can be judged ordinary or extraordinary apart from the circumstances.

The Patient's Perspective

The Catholic tradition of forgoing extraordinary means of care has always examined these cases from the perspective of the patient, asking only whether it would be reasonable, in the patient's circumstances and in the patient's judgment, to forgo the intervention. The perspective is not that of the physician or the family in light of their duties toward the patient, but is instead that of the patient who has a duty to preserve his or her own life. The patient traditionally has been given wide latitude in deciding what is extraordinary, within the bounds of reason and the judgment of the community. The limits are broadly drawn, not because of any notion of unrestrained autonomy, but because of the fact of diversity. People do, in fact, differ. They have different pain thresholds. They react differently to the same medicine. They have differing psychological, social, economic, moral and spiritual resources. No one understands this as well as the patient.

Thus, if a patient had lymphoma, a type of cancer, and had failed five treatments, all with terrible side effects, and the oncologist were to offer a sixth treatment, a patient might well judge this to be too much to ask—an extraordinary treatment. Another patient with the same lymphoma, having failed the same five treatments, although without such bad side effects, who might be looking forward to a daughter's marriage in two months' time, might consider the treatment worthwhile. It would depend upon each of them as individuals, not upon judgments about chemotherapy abstracted (a priori) from the individual's case.

If a patient becomes unable to think or communicate, treatment decisions have rested not with the physician, but with the family. The traditional moral viewpoint assumed by the family was always that of the patient. "Knowing our son," or "knowing my wife," these burdens are too great relative to the benefits. This is natural. This is traditional. The family knows the patient better than the physician does.

Relieving the Burden

Advance directives help put the focus back where it should be—where families, friends, pastors, physicians and the law all should have their focus—squarely on the patient. In the 21st century, advance directives have become useful instruments for carrying out traditional morality. This is primarily because so many people now die after they have already lost their decision-making capacity. Because of medical successes against cancer and heart disease, more people will live long enough to succumb to Alzheimer's disease, for example. People who used to be dead within hours from septic shock can now survive in intensive care units. But this success comes at a price. While some will survive, most will still die after having spent weeks on life support, unable to speak for themselves. Studies have shown that as much as 86 percent of the time, judgments to forgo cardiopulmonary resuscitation are made when the patient cannot participate in the decision. There is almost a moral imperative for people, realizing that they very well might die in a state of mental incapacity and aware that each is the best judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them.

The second reason to reconsider the value of advance directives is the power of medical technology. An advance directive is not an arcane abstraction. With so many possible treatments, studies now demonstrate that approximately 90 percent of hospitalized patients die after a decision to forgo a procedure that could have been tried. One of the burdens of contemporary medical technology accompanying its many benefits is the responsibility for deciding when not to use it. Otherwise people will become prisoners of technology.

The third reason is the great weight that falls upon loved ones. Studies have shown that making these decisions is exceedingly stressful for families—equivalent to the stress of having survived a house fire or other calamity. These studies also show that when a patient has filled out an advance directive, the stress levels of loved ones are significantly lower.

Fourth, increasing numbers of persons have no families to make decisions for them as they are dying. Sometimes this is caused by social ills—drug addiction, broken families and the like. Sometimes this is because women outlive all the persons for whom they had cared over most of their lives, dwell alone and have no one they would trust to make decisions for them. How else are decisions to be made for such persons?

Finally, families sometimes are unable to agree on decisions at the end of life. The dying process can expose old family wounds; and the consequence is, as a default, the continuation of life-sustaining treatment. That decision might not be what the patient would have wanted. It might not be what the physician thinks is in the patient's best interests. It might not be what most of the family thinks is right. But without some way to resolve the dispute short of recourse to the courts (always a bad idea), the treatment continues because the alternative is irreversible. Advance directives can provide a simple way of settling such disputes.

Preference for a Proxy

How do these instruments work in practice? There are two basic types of advance directives—the living will and the durable power of attorney for health care (or health care proxy). Briefly, a living will lists the patient's preferences for or against certain treatments at the end of life and goes into effect if one is terminally ill and lacking in decision-making capacity. The health care proxy names a person (and generally an alternate) to whom the physicians should turn for medical decisions in the event that the patient is unable to make them. Some documents combine elements of both. Forms can be obtained from physicians' offices, state government Web sites, hospitals and lawyers. Lawyers are not necessary, however. All one needs, typically, is for two persons to sign an attestation that the person making the directive was in a rational state of mind at the time the document was executed.

Advance directives are not a panacea for the complexity of end-of-life decisions. People often hesitate to fill them out, and most Americans die without them. Living wills can be too vague or too specific, and these documents, which are written texts, are as such subject to interpretation. Most patients would opt to give their loved ones substantial authority to interpret their documents and even to override their preferences, because they trust their families to act out of love. Thus the health care proxy form is the overwhelming preference of ethicists and clinicians. It is much easier for them to talk to a person who knows the patient and has been selected by the patient than it is to try to interpret a piece of paper. Catholics who are wary that their documents could be abused and their religious beliefs ignored would be best served by designating a health care proxy as they prepare their advance directives. But even this important role has its limits: Patients frequently fail to discuss their wishes with the person they appoint as proxy, and studies have shown that proxies are often inaccurate in predicting patient wishes.

Some faithful Catholics might worry that recent changes in church teaching regarding the use of feeding tubes for persons suffering from devastating neurological conditions, like the persistent vegetative state, will require them to alter their existing advance directives or to avoid using advance directives altogether. Recent church teaching, however, emphatically has not altered the centuries-old Catholic tradition of forgoing extraordinary means of care. Feeding tubes can still be considered extraordinary (i.e., optional) for patients who are dying of progressive underlying conditions like cancer or advanced dementia or if the use of the tube is associated with great burdens or costs. To try to specify in a living will all the nuances of Catholic teaching about feeding tubes would do more harm than good by creating a complicated and confusing text that others would later have to interpret. This is just another reason for preferring a health care proxy. Then one needs only to instruct one's proxy to decide on one's behalf in accord with church teaching.

Despite their limitations, advance directives provide an important means to accomplish the goals of the tradition of forgoing extraordinary means. Advance directives foster decision-making by those who know and love the incapacitated patient that is focused on the authentic values and real interests of the dying patient. Such decisions would constitute good care, recognizing both the dignity and the finitude of the human person, affirming the value of life but conscious that our ultimate destiny is eternal, not temporal.

Glossary

Advance directive: a document, like a living will or durable power of attorney for health care, that enables a person to provide guidance for others who may need to make medical decisions on that person's behalf in the event that the author of the directive loses the capacity to make decisions.

Living will: a listing of the patient's preferences for or against specific treatments at the end of life, which goes into effect if one is terminally ill and lacking in decision-making capacity.

Durable power of attorney (health care proxy): a document that names a person (and usually also an alternate) to whom physicians should turn for medical decisions in the event that the patient is unable to make decisions.

Extraordinary means: a technical term in ethics that means non-obligatory; the use of extraordinary means is optional.

Ordinary means: a technical term in ethics that means obligatory.

Daniel P Sulmasy, M.D., is the Kilbride-Clinton Professor of Medicine and Ethics in the Department of Medicine and Divinity School at the University of Chicago, where he is associate director of the MacLean Center for Clinical Medical Ethics. He is the author of Methods in Medical Ethics (Georgetown University Press).

Reprinted from America 29 November, 2010 with permission of America Press, Inc., © 2010. All rights reserved.