Outsourcing your own death doesn’t make it any easier

Dying may be a prolonged and unpleasant experience such as with some cancers or sudden as a result of, for example, a heart attack or catastrophic stroke.

When your time to die comes, the majority of Australians will be taken to a hospital. Ironically, most of us, when asked beforehand, would prefer to die at home, as long as we don’t suffer and are not an excessive burden on those caring for us.

How did this happen? It’s not a conspiracy, as very few gain from you dying in a hospital. You are probably in the majority of people who don’t want to spend their last few days there and they are already overcrowded with patients where modern medicine has something to offer.

The reason why we increasingly die in hospitals is complex.  People, quite understandably, become anxious when their loved ones become seriously ill. Despite discussions about how you want to die, the chances are that you and your carers will not understand whether or not something in the increasingly impressive array of modern medical drugs and procedures will work for you.

As a result, the ambulance is called. The paramedics and emergency doctors are there to resuscitate you, not to perform the last rites or to question your carers about whether this is what you would have wanted. You are on a conveyer belt, not of any one person’s making and on your way to my Intensive Care Unit.

Not only do lay people usually not understand what medicine can and can’t do; most of my medical colleagues also do not understand the limits of the increasing complexity of modern medicine. As a profession we have become fragmented.

On the one hand this has advantages. Being a specialist in one organ or area means you become good at it. When I had my operation I asked around to find out who was the best surgeon in this particular area, not someone who understood the chances of me surviving if serious complications set in.

However, it is increasingly common to be admitted to hospital when you are just old with multiple medical problems, simply as a result of things just wearing out. The problem now is that you will be seen by representatives of the various organ specialists, who will concentrate on their own area of expertise and miss the simple conclusion that the deteriorating organs all impact on each other, adding up to a situation far worse than the individual parts.

As a result, my role as an intensive care specialist is to increasingly diagnose dying, defined, as there is nothing more that even the most complex drugs and machines can offer.

There is often pressure at this point by my colleagues and the family to just give them a chance, albeit a small one. There are also my own pressures – fear of litigation; and not wanting to be seen as difficult by my colleagues or heartless by relatives.

And so, the chances of you spending the last few days of your life in an Intensive Care Unit is high; surrounded by strangers and supported by machines and drugs. In Australia, this is usually at no cost to you but at great cost to all of us.

My Intensive Care Unit will soon have 60 beds at a conservatively estimated operating cost of $1 million/annum/bed. Ironically, you may have been living on less than $200 a week for many years, supplementing your income by retrieving aluminium cans from garbage bins and then for your last few days of life you are given $3000 worth of care each day and you may not have even wanted it.

It’s worse, of course, in societies with private health, where there is a perverse incentive to keep you supported in the Intensive Care Unit as long as possible, even in the face of futility. As a result, many American families are bankrupted under the cruel illusion that they did everything for their loved one.

What can you do to have some control over your own dying? Discuss the issue openly and honestly with your friends and relatives so that they aren’t faced with the unfair burden of deciding how far things should go when the chances of you surviving are hopeless, or perhaps, even worse, when ‘survival’ means living out your life in a vegetative state in an institution.

Make your wishes clear in the form of an advance care directive. Don’t wait until you are old as tragedy can strike in young people as well as the elderly.

In a book I have recently written, I have tried to inform society about the way modern medicine operates, not using facts and figures but stories, composites, as a result of working as an intensive care specialist for nearly 30 years: stories about courageous people; sad stories; stories about the dignity of dying; and, of course, stories about the unexpected and of miracles.

VITAL SIGNS: Stories from Intensive Care, by Professor Ken Hillman is published by UNSW Press. RRP $32.95