The Ends of Life

Many aspects of life have become undiscussable by anyone with power, especially in the USA. Criticise the military and your career may be over. Argue for a tax increase and you are on thin ice.

This is a shame, and it has contributed to paralyzing progress in many areas of life. Nowhere is this more true than in health, especially end of life health.

This applied in the UK too, and probably elsewhere, though I have less knowledge. Perhaps, with their approach to euthanasia, the Dutch and Belgians have helped to lift the taboo.

At the root of the issue are trade offs over healthcare. One consequence of progress is that people are living longer. This is not unrelated to a wide availability of cures and treatments for diseases. The problem is that these cures cost money. And our progress is not yet so complete to render that irrelevant.

This leads to dilemmas. When should a treatment be attempted? Is it sometimes better to leave nature to take its course? Should this decision ever have anything to do with money? Doctors have to make these trade offs every day. It seems to me that there is very little consistency in how the decisions are made, and society loses out as a result.

There a few fixed starting points to the debate and a few generally recognized practices.

The first fixed point is the Hippocratic oath. Doctors must always try to do their best for patients. In practice that means using all weapons at their disposal to cure a patient. Quite rightly, doctors take this very seriously. It goes to the heart of their profession.

Another fixed point is the treatments generally available. This is regulated, in the UK by an organization called NICE. New drugs and treatments get assessed against criteria of reliability, effectiveness and cost. Without NICE the NHS costs would be even more out of control than they are. But NICE doesn’t look so nice if you have a disease, a drug is available in another country and yet it is denied to you.

It gets a bit murkier with the practices. There is a trade off between patient comfort and the likelihood of cure. If someone is very sick, it may be possible to continue to try aggressive treatments. But these are often painful, and the best outcome might be to prolong life by a few days. So a doctor will choose instead to put the patient on morphine and wait for them to die.

All of us will have to face this for loved ones sooner or later. Doctors are generous and usually make the choice themselves, because involving the family only causes worry. Often the patient will give some sort of indication about how reconciled they are to death, and doctors become good at seeing those signals.

Even in this seemingly obvious case doctors take risks. Are they strictly following their oath? They are subject in the US to lawsuits. It is all very murky.

Add in money as a factor and it gets murkier still. Say the treatment is not especially painful, but would cost $100,000? What about $1,000,000? If the patient is 20 years old, we would probably all want to give it a try. But what if the patient is 95?

It is difficult to even consider such trade offs. It would be harder still if it were our own mother we were talking about. Or, later on, it was our life partner, or even us.

But the fact is such trade offs are necessary, and currently the results are haphazard and arguably plain wrong. That $1,000,000 used to keep ninety year-olds alive for a month could fund a lot of pre-school classes. It could also improve the quality of care available for lonely people of eighty. Or fund some paternity leave so dads could start to play their role better. All of these alternatives could have lasting societal benefits – I read recently that inequality of opportunity was locked in within the first year of a child’s life, based on their learning environment from birth.

Next, what does the ninety year-old really want? Ask most of us at sixty, and we would say we don’t want to live over ninety. We might then qualify it by talking about quality of life, so if we were still independent and clear of mind we could stagger on for a few more years, but if the prospect was dementia in a home we would rather die. When we get to eighty, we might stretch the cut of to ninety-five. When we got there, we might change our mind again.

I watched my Mum grow old, and have seen a few others as well. Mum was petrified of the shame of a nursing home and the humiliation of losing basic faculties. She wrote a living will asking for care to be minimal. But she swung wildly on the matter. When depressed, she often said she wished she were dead. But on other days she had a lot of fun, and she cherished time with her grand children.

Mum died two years ago, and in the end I feel she was blessed by good fortune. She died quickly and painlessly, at a time when her dementia was on the cusp of leading to levels of shame and humiliation that would have reduced her life quality below what she would have wanted were she able to be completely detached about it.

But how lucky she was and we were and the state was. She is the exception. In many cases she would have lived on for a further few years, miserably, painfully, expensively, even pointlessly.

We read that cancer is set to double in society, and that we can’t afford the care involved. As I understand it, this is not about cancer, it is about longevity. If you restrict statistics to people under eighty, most cancers are becoming rarer, thanks to advances in medicine. But, just because there is an explosion of people over eighty and they have to die of something, many contract a cancer.

There are, of course, no easy solutions. But what I say is it is a pressing problem deserving of the full attention of society. The victims include most old people themselves, suffering a horrible final year or two. It includes their families, given vile choices and robbed of better memories. It includes, doctors, acting as masters of life or death every day of their lives without real guidelines. But the main victims are those who could benefit from the alternative use of funds. Health spending exceeds 10% of GDP in developed countries (18% in the USA), and my guess is that more than 25% of that goes on end-of-life care. These percentages are only going to increase over time.

For this critical area, decision-making today is woeful. Politicians avoid it. Doctors are stuck with it – while much of the medical profession is driven by maximizing activity so prolonging all life. Families and patients deny the issue until the last minute, and then will usually be cautious, and in some cases may even be manipulative. Richer people have more choices than poor ones. Euthanasia is a headline issue and I applaud the bravery of Dutch and others, but it still only covers a tiny proportion of cases.

Better criteria might include patients stated wishes (long in advance), and statistical evidence of costs, discomforts and quality years earned. These are tough to even start to consider, but must be better than the status quo and its inevitable worsening as we all stagger towards our century.

Now, here is the big question. Would I want someone to wave this article at me on my ninetieth birthday? On balance, the answer is yes. It is just like having a will or being clear on things like being an organ donor, it is distasteful and we defer it, but we are better for it. I am better for it. Ask yourself the same question. Maybe this is one of those issues that can only be progressed bottom up by all of us.