Sunday, May 29, 2011

Dying: Conversations From The Edge

My father Joe, who is 86 years-of-age, has terminal cancer and last Thursday developed an acute complication, which will rapidly accelerate his deterioration unless a surgical procedure is performed to palliate, rather than reverse, the effects of the complication. I knew that the risks of surgical intervention, in his particular case, were enormous and that peri-operative mortality was a very distinct possibility. I discussed this with the surgical team looking after him, sensed their reluctance to intervene, and made arrangements to travel down to talk to Joe, and to them, the following morning.

Joe had reached the edge of his world!

As I drove down on Friday morning, the predominant thoughts were about what he would decide. We had discussed days like these when his recurrent cancer was diagnosed and the prognosis was poor. The gist of his thinking was that he did not want medical decisions made which might accelerate his demise and certainly did not want any major surgical intervention. But, as is often the way in these ‘general’ conversations, as his condition stabilised to be more slowly progressive than expected the conversation had remained general.

About two months ago Joe’s condition acutely deteriorated as a result of infection and only for aggressive and expert care by his medical and nursing team he would have died. This episode frightened him and on recovery he appeared to have a change of mind about what he truly wanted to be done when such situations arose again and indeed agreed to a ‘minor’ surgical procedure, which overcame a very specific issue in his condition.

Now he was facing a much bigger decision and I wondered what he would want, and whether I could satisfy myself that he was fully informed.

As a clinician, at least up to about 20 years ago before the full development and availability of hospice and palliative care teams moved many of these exchanges away from the surgical wards, I was often involved in the decision making about choices. As a surgeon in the determination, and desire, to achieve a good outcome these necessary ‘conversations’ were oftentimes left to one side… and then when no more could be done it was too late. Patients had become so sick that individual decision-making about ‘choice’ was impossible and much was left to ‘family’ to decide, based on their understanding of what they thought their relative would want. And this is where as a clinician you were at a disadvantage. Certainly you had a theraputic relationship with the patient involved but this did not often extend to a valid and full personal understanding of their real wishes. It was only on rare occasions that the surgical pathway would be put aside for a patient to say ‘Doc, hold on a second. What really gives? What are my chances and choices?’ and to truly invite the conversation.

Thankfully with, as I mentioned earlier, the professional development of the hospice care teams, the critical importance of those ‘conversations’ has been emphasised and indeed has prompted the legal – and moral – establishment of ‘living will’ imperatives.

On a personal note it was a ‘conversation’ that I had had with my mother during her own terminal illness 10 years ago and which subsequently made the decision to withdraw ventilator care, and to convince my father that this was truly her desire, easier. I always sensed however that he had moral problems with that decision and when I arrived at Joe’s bedside he was almost in a hurry to preempt anything that I might say, and immediately he began to explain what he wanted.

‘Firstly,’ he said. ‘I have had the chance in the past month or so to have long conversations both with the chaplain at the nursing home but also with the chaplain here and from a moral standpoint ‘I do not want an accelerated or assisted death. I am at ease with my decision but equally do not want any major surgical intervention which I is palliative rather than curative.’ He rested at that point, looking out the window for a moment. I stayed silent. ‘Like all people,’ he continued. ‘I do not want a hard death. My own father had a hard death and I do not want that.’
‘May I put a hypothetical case,’ I asked.
‘Sure,’ he replied.
‘There is a very narrow ‘moral’ and ‘theraputic’ line divining the difference between an easy and an accelerated or assisted death. At present you are having very aggressive antibiotics to prevent infection from the complication, which the surgical procedure may or may not help reduce. If hypothetically, I was faced with a decision by a patient not to have any further surgical intervention, should that reasoning also extend to withdrawing aggressive medical intervention designed to achieve the same end?’

He looked at me for a moment. ‘Unfortunately that is a moral decision for you and not for me.’

I knew at that moment that this was my father in his pomp, in full control of his faculties and of his facility to debate moral hair-splitting specifics while ignoring generalities. This was the father of my childhood and adolescence delegating ‘moral’ certainty to the extent that it becomes uncertain. I also knew, and relaxed, completely relaxed, that his decision-making was informed and appropriate.

He drifted off to sleep and I left to discuss the ‘conversation’ with my brothers and sister and also his medical team.

Later that night in my dreams we are walking together towards the edge of the world. The edge of a world we watched together on a summer's day in July 1969, on a grainy black and white television. I am holding his arm to help him walk. Then I let go. He walks on. Alone. Doesn’t look back….

‘One small step for man....’

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