Conversations

After I started posting some thoughts arising from the current euthanasia debates, four women whom I hold in esteem wrote in strong response. Two wrote openly on the blog, two privately. I will refer to them respectively as B, M, G, H.

B wrote: Hi Howard,

I’ve just read your maybe not rousing speech but impassioned piece on euthanasia.

If I should be dying and I should be in unbearable pain, and if through that pain I was not able to continue to relate to my loved ones other than to be overwhelmed by my pain, you would be one of the doctors I would reach out to to put an end to my pain and possibly my life.

Will you refuse me?

I first met B in 1971 when she brought about my birth as a doctor. I have not treated her since. Instead we have become colleagues and friends. B’s note shifted my thoughts from the abstract to the concrete. Here was a cry coming from deep in an ancient moment in my formation. The person who wrote is concrete. Reeling somewhat, groping for self-knowledge, I responded speculatively:

Dear B,

I cannot know…

I suspect love would defeat principle or conviction or predisposition to life.

In other words I do not know myself in abstractions but in my instinct and my sentiments.

My ancient affection for you, my strong drive to help – which surfaced in your case in c. 1971 are as likely to govern me as any personal ‘rule’ or law.

I am sure if someone came and demanded I act in any given way my instinct would be to resist.

I anticipated readers would respond with passion and with pain to my piece.

I was right…

You asked would I help you.

I know I would try.

I cannot predict what shape my help might take.

This is a heavy matter. No light answers. And for me, no right answers.

But love will govern.

B again:

From feeling like I was falling into a chasm your response came as a hand that reached out to stop me hurtling to my death. Strange metaphor given I was talking about asking you to help me to die. I am much relieved that love will play a big part in your decision making process, over and above noble and fine principles.

But the debate hypothetically may be akin to Solomon’s choice.

Let’s talk.

My friend G is another colleague, a person raised in a strong religious framework from which she emerged to find and form her own way. I suspect her hard struggle for freedom has left her with a strong respect for my right to find and form a path of my own. G asked:

Would you be comfortable referring one of your patients who met the criteria to hasten their end to another GP who you knew would agree to assist in that wish?

And if that patient asked you to be present during the event would you?

How much do you think religion affects your current view? Or are you unable to separate your religious self from your professional self?

All F’s questions arrived as text message on my phone. Like death a phone message catches one on the hop. An answer will be less considered, perhaps truer for its spontaneity. I wrote a text back:

Hello F,

I’m pretty sure my religious self is absent from this.

It’s as if something deeper and defining is at play.

I imagine that ‘something’ is what brought me into Medicine.

And that drive collides here with itself…

But on the other hand, it was religion that framed my earliest thoughts.

It is on reviewing the texts that I regret not telling F at the outset: I can’t imagine doing anything I will find comfortable. The best I can hope for is to be comforting.

But if a patient wants me there at the end, yes, of course I’ll come. I’ll want to hold her hand as she passes over to ‘that quiet land.’

F resumed by email:

I find people’s responses to this topic rather fascinating (and at times irritating). So many reactions are full of judgement and criticism when it’s a topic that requires the opposite – compassion, objectivity and an acknowledgement of all of the grey. It would appear that a single (subjective) experience of dying makes some people self-appointed experts on the topic. I am of the thought that there is no ‘truth’ in any one person’s experience. And I wonder if those who react so emotionally to the idea of not having the ‘right’ to hasten their own demise have been more traumatised/suffered by the dying of another than the person who was actually dying?

What do I know? I do know that I would prefer not to die of bowel cancer. My experience working on GI wards is that that would be a shithouse (excuse the pun) way to go. I know that until I am dying of a known cause I won’t know if I want the option to hasten my demise or not. I know that having witnessed many people dying of a known cause (some in pain, some in discomfort, some in fear) that I’m still not convinced that assisted death is the answer. But I’m not convinced that palliative care is the answer either – theoretically it should be but I doubt it will ever be financially. I know that those who have reached the palliative stage of their illness should never be admitted to an acute care ward in a hospital – I’ve witnessed far too many cases of what I can only term the neglect of those in their final days/weeks in acute care wards. And the reluctance of acute care nursing and medical staff to adequately manage final stage symptoms. I want to believe in palliative care but I’ve been waiting too long for results.

I know that if you were my GP and I had a terminal diagnosis, I would feel like I had the best GP in the world. I would know that when you asked a question you would be genuinely interested in the answer. And I would believe that you would have a moment of quiet grief when I left this world. And that would be a comfort. As a nurse I never felt any sorrow for an anticipated death of a patient – the overwhelming emotion I felt was relief. Relief that there would be no more pain, no more nausea, no more confusion, no more discomfort from lying day after day in bed waiting to be turned brusquely. But I have a feeling that you experience a moment of sorrow for each death – correct me if I’m wrong.

If I were your patient and I asked you to help me die and you indicated that you couldn’t then I believe I would want your help to find a doctor who would be willing. I would appreciate that you would feel obligated to offer alternatives but if my mind was made up and it was legal then I would want you to support my decision. You might not support assisted dying on moral and ethical grounds but having come reached a fully informed decision I would want your compassion to make that referral to a colleague who you trusted and respected. And the promise that if I changed my mind you would do everything in your power to make my end days as comfortable as possible.

Your friend, F

These words come straight from the bedside. They come from one who has stood with me at the bedside. I cannot gainsay a word of them. Yes I do sorrow for every death. Yes I sorrow for every pregnancy loss. I grieve inwardly for a miscarriage. There is something universal here and something personal. The universal is the instinct that drives all of us to struggle for life. The personal is hard for me to define or even to describe. It comes into focus most sharply for me at the birth of a child. Those moments find their mirror image in a death. The one elates me, the other deflates.

H is a writer friend, a novelist and a family historian whose earlier profession was neurology. She writes humane novels filled with unsentimental empathy. H was another friend whom I disappointed. She wrote:

I’m sorry you feel you could not give this final relief. I am a convert to assisted dying (this is not euthanasia – which implies someone else’s decision that you should die). My feeling has always been that adults who are dying should have some choice about their death, and seeing three dear relatives all the way to death, I am now utterly convinced that such choice should be available. I understand that in states in America where such choice is available, of those who take up the option only a small proportion use the drugs supplied. But, those who receive the drugs and do not use them, are much calmer and happier, for knowing that they have control and can die should they feel they have had enough.

H here echoes an experience described to me elsewhere by B, arising from her work with men diagnosed in the 1980’s with HIV-AIDS. At that time the diagnosis was a death sentence. Some of the doomed acquired the means of ending their lives painlessly, with the intention of using it at a time of their later choosing. Of those men only one availed himself of the drugs. The others lived out their natural term. Knowing they were able to die enabled them to live on.

I close here with one message of straightforward approbation. It comes from M:

Very thoughtful. And probably helpful to those who didn’t like your last post. I have put the link up on my FB page.

M often comments favourably on my blog. When she doesn’t approve she’ll keep her disapproval away from the public eye. M is of course (as she signs herself) my loving sister.

Let Me Die! Help Me!

The right to die has found its voice. Past generations heard little of that claim, the cri de coueur of our day.

I imagine we never wanted to die so much as we do now. In previous times when life was short, brutish and mean we struggled to stay alive. But now Medicine has taken over. Deaths are prevented, delayed and deformed. Few families in advanced societies have been spared the grotesque spectacle of a loved one subjected to medically prolonged dying.

Because we enjoy better health we live longer lives. Because we reach old age we accumulate the mutations that overwhelm our defences. Cancer results. The cancer epidemic is the trophy won for us by medical advances. And so Medicine sets out to fight its ugly daughter. We cut out tumours, we poison them with chemotherapy, we shrink them with X-Rays, we outwit them with genetically engineered antibodies. Many are the gains, great are the costs.

Eventually dying happens.

Death frightened me when I was younger. Now I can see death as a sometimes friend. John Keats nursed his brother through the long death of tuberculosis. Then Keats himself became tubercular. He knew what lay in wait for him: cachexia then death. The terminus he contemplated was like late–stage cancer, the body self-starved, the mind too aware, the complexion ghastly pale, the skin empty, disfigured:

                                                The weariness, the fever, and the fret 

                                                Here, where men sit and hear each other groan; 

                                                Where palsy shakes a few, sad, last gray hairs, 

                                                Where youth grows pale, and spectre-thin, and dies; 

                                                Where but to think is to be full of sorrow 

                                                And leaden-eyed despairs –

 

 

Keats wrote dreams of an easy death (in his Ode to a Nightingale):

                                                           Darkling I listen; and, for many a time 

                                                           I have been half in love with easeful Death, 

                                                           Call’d him soft names in many a mused rhyme, 

                                                           To take into the air my quiet breath; 

                                                            Now more than ever seems it rich to die, 

                                                           To cease upon the midnight with no pain, 

                                                           While thou art pouring forth thy soul abroad 

                                                           In such an ecstasy! 

                                                           Still wouldst thou sing, and I have ears in vain— 

                                                           To thy high requiem become a sod. 

 

When recently I posted ON EUTHANASIA I anticipated readers might react strongly. I was right: most who responded – on–line and off-line – experienced my thoughts as a wound. I learned how a doctor is expected to relieve all suffering. A doctor is a trusted friend. Once the doctor denies his patient her right, she feels he has betrayed her. The wounded person’s gaze is not directed here to the doctor as a moral agent, not as a person entitled to moral autonomy, simply as one who could help, who now, abruptly, at this last critical and defining moment, acts selfishly.

I wrote that changing a law does not necessarily serve wisdom. The reality here is no conceivable law can resolve all of the problems of our competing needs and values. We need relief. We need a doctor who respects our autonomy. We need a doctor who will not sit in lofty judgement.  We need a doctor who will protect life and now we need one who will take life. And we need to know he’ll protect when he should and take when we seek it. The forgotten need is that of the doctor to reconcile those parts of his work. Putting it a different way, if the doctor, in trying be all those things, violates her own being, inevitably she disintegrates. She must give away her integrity. And then all lose.

I read the responses. I felt them, the tremor of the soul that prompted brave, naked, passionate disclosure of self.  My mind went back to deaths I have known, deaths I have conducted. I recalled the baby who aspirated meconium in the birth canal. The baby’s chest heaved as it worked to ventilate lungs clogged with a material of the texture of bitumen. We ventilated him, he did not improve, he did not die. He would not die. Morning after morning I entered NICU and there he was, his skin marbled, his chest rising and falling in obedience to our machine. His life felt like a reproach. We had turned on the machine. I learned then that the decision to bring in the technology is more onerous than to withhold, to wait.

I recalled the first person to ask for my mercy. That person was my mother, the one who had given me life. Mum would have been sixty, I thirty. ‘Darling’, she said, ‘I have high blood pressure, I have high cholesterol; one day I’ll have a stroke. When that happens, I want you to slip me a mickey.’

I understood Mum’s reference to ‘a mickey finn’ – a lethal draught.

‘Mum, NO!’ – was my instinctive response, which I quickly softened with promises to read favourite literature to her.

Twenty or more years later Mum duly suffered stroke after stroke, the final one devastating. My son and I carried her up the stairs one day and I asked her whether she recalled our conversation. She did, clearly. I asked Mum whether she regretted my failure to ‘slip her a mickey’. Mum’s blithe response did not surprise me. Whichever way she might have responded would not prove any argument, would be particular, not general, would not resolve the next sufferer’s dilemma.

I sat with the heat and the passion and the pain of this debate. Having little faith in lawmakers to solve the problems of human existence and oblivion, I searched for some useful fragment to proffer. I recalled those numerous patients who had made written Advance Care Directives. For the simple doctor these expressions of your wishes are a godsend. I read them and I am ruled by your refusals. Some decline ventilation, some explicitly forbid ICU, some decline antibiotics or feeding by tube. Many directives are less specific: ‘Do nothing more than keep me comfortable.’ ‘Let me die with dignity.’ These last call for my deepest self-search. They challenge me to imagine what  comprises and what violates your dignity. They draw my mind into the unknowable tomorrow. But these directives too are helpful. Your opaque request demands my vision of your humanity. It’s a big ask and it’s a fair one. My parents asked of their children that we allow them to die with dignity. We did our best and we saw Mum and Dad pass more or less peacefully from us with our honest best. It’s a big ask but I feel equal to it.

So that’s my first suggestion: COMPOSE YOUR THOUGHTS, EXPRESS YOUR WISHES, WRITE THEM DOWN, GIVE THEM TO YOUR DOCTORS (IN THE PLURAL), TO YOUR LOVED ONES, TO YOUR LAWYER.

No guarantees.

The second idea came to me as I wondered about by own expertise in the matter of ending life by intent. I must do it unerringly. You don’t want to wake up mute and paralysed after I have botched it. Your family doesn’t want to see you struggle or convulse or vomit then inhale, gag and gasp. I’d need training. Then it came to me: the legalized euthanaser must be trained, supervised and certified. You’d want him to know the relevant law, the protocols. The euthanaser might benefit from ethical training. I am sure the practitioner will need pastoral support and peer supervision. He’ll need to be able to recognise and resist the opportunist heir-designate who wants Aunt Nancy knocked off before her care costs consume too much of the inheritance. (I had to do this once.)

So here’s my second suggestion, this to the lawmakers: A PERSON MUST BE LICENSED TO END LIFE. THE LICENSE WILL ASSURE THE COMMUNITY AND PROFESSIONAL PEERS THAT THE PRACTITIONER IS TRAINED, COMPETENT, HONEST AND WILLING. That final adjective might save many patients from the painful disappointment of denial of help by a doctor not prepared to end a life. (That doctor might be me.) You might or might not be able to respect the difficulty of a doctor who feels torn between your need and his vanity/arrogance/integrity/different sense of defining mission, but you need not suffer a humiliating rebuff in your extremity of need.

As I wrote earlier, a change of law cannot resolve everything.

On Euthanasia

Our government is engaged in changing the laws to permit the intentional ending of life under certain strictly limited and regulated conditions.  I understand the persons authorised to end those carefully defined lives will be medical practitioners. The government did not ask this practitioner for his view. They didn’t seek my approval or consent. But the government is OUR government, elected democratically by citizens like me. Governments make laws; that is their legal right and function. Legality of course is not a synonym for wisdom, nor for morality.

In 1963 I won my school’s Oratory contest with my speech on this subject. To win a speaking contest at a Jewish school is a great distinction: Jews are born talking, debating, arguing.

I argued against euthanasia.  The adjudicator awarded me the prize, describing my address as ‘rousing’. That was in 1963 when I was seventeen and my moral world was simple. I would not give that same speech today. It smacked of demagoguery. It was certainly complacent.

In the threescore years since I have brought people into this life and I have seen others to its exit. I have not pushed anyone through the exit, at least not by intent. I have seen many people die in peace and a smaller number die in agony. My thinking developed to the point where I felt I had no right to deprive a person of the free choice to exit. That is I felt the living person alone knew best whether her life was tolerable; and no other person could decide that better than she.  Ultimately her life was her property. In many cases I wished silently for the patient’s release.

But I never came to the feeling that I had the right to end a life. After years, sometimes decades, of caring for a patient, I might become her most painful disappointment.

Soon or sooner the law will change. That is the wish of the electors. Governments will stipulate that a doctor be the person who carries out the intentional ending of life.  Government and patients will find me disappointing. Some will find my nonaction to be arrogant. I will have no defense to offer a critic. The ending of a life which is intolerable to its living owner cries out for a solution. I do not have the solution. I am not the solution.

I am unsure whether changing a law actually resolves these agonies.

………………

Another doctor’s view:

Euthanasia: an emphatic no from this GP

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Authored by

Jane Barker