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.
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.
These are excellent suggestions. Mea culpa, I have not yet written clear instructions to my doctors or my lawyers (my children, yes). I believe that Dignitas in Switzerland complies with your second suggestion. A friend of ours travelled this route, but is too expensive for most UK citizens. It is very helpful to hear your suggestions and listen to the view of someone who might be asked to administer a lethal drug. During my father’s final illness different four doctors responded to his request for help to die (he had always said to his GP, when my time comes I like to be put to sleep) by saying that they would, if they could, but it was illegal. They seemed to mean it, but then they didn’t have to choose.
Did your father suffer?
Was his end one of distress, Hilary?
The local legislature has now passed the Bill.
Sober exultation and tears among its advocates. A quiet falls. We wait. A solemn time. Humans have seized the key to the Exit. No-one knows whither we depart , but most – and this includes me – feel relief that the sufferer has choice. Freedom – so deep a need, so noble an aim, so potent for good and for folly.
Very thoughtful And probably helpful to those who didn’t like your last post. I have put the link up on my FB page L Your proud sis
Margot Mann IBCLC RLC
Sent from my iPhone
No one will understand until he suffers himself, even God Himself when He’s made to suffer as a man. But death like life is not a choice nor a right. Men can make laws but only God can give or take a life. If man decides otherwise, it is his doing. A doctor is just a man like any one of us. There is mystery over life and death which I also will never understand but I accept because I believe in God.
I have not known how to respond to your very clear expression of faith.
You write ‘ no-one will understand ‘ suffering. I am one of the nonunderstanding: I don’t readily find a way to reconcile the colliding impulses that drive me – to relive suffering and to protect life. The collision fills me with doubt and awe. The mystery to which you refer is real
. Changing the law will obscure mystery with the mechanical and procedural. We lose something defining in us when once we lose awe.
But the call of the suffering too demands our response.