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.