Planning for the end

We all imagine a life plan, but what about the end of life? It seems remarkable that for such a vital question, we leave it to strangers to decide.

The developed world has exploded with health investment, infrastructure and technology, but our conversations about our final living moments remain perilously unexplored. Palliative Care Australia's research, We need to talk about dying, released today reveals 66% of us never discuss with loved ones, and only 15% of people have a plan in place for how we want to be cared for at end of life.

It is daunting and uncomfortable for family members and for most doctors. Perhaps that explains why the word 'cancer' is only mentioned 16% of the time by clinicians in their discussions with dying cancer patients.

The federal government has committed $16million dollars train-up providers in this field. It will require consistent national guidelines and expansion of better practice into general practice and the broader primary care setting. Overseas, following patient advanced care guidelines is part of hospital performance management and contributes to their levels of funding.

We all want to keep people healthy and out of hospital. But increasingly, it is appearing feasible to keep the sickest hospital cases in intensive care at home. Advance care planners now report they can manage a dying intensive care patient in the home for $2500 a day, compared to $3000 to $5000 in the ward.

Chronic kidney disease and dialysis remains a critical area. Because intensive management can prolong their life, half of them end up in ICU, compared to just a fifth of those with cancer or health disease. At the same time, over half of all kidney doctors feel ill-equipped to make end-of-life decisions.

Most of us don't realise that a quarter of dialysis patients die each year and a quarter make a conscious decision to cease dialysis before they die. As few as 6% of these patients have an advanced care plan in place. That results in most of these chronic renal patients dying in hospital. Many need not die there and would prefer not to. Reducing burdens on our intensive care beds seems a no-brainer, yet State hospital systems are yet to make the switch.

The other clear message from experts is that it's too late if we wait for an imminent sign of death to start the process. That is because even the experts get it wrong. When asked if they would be surprised if 'particular patients might die in the next 12 months,' it was three and a half times more likely that those who 'surprised' their doctors actually did die.

One proposal is to reward clinicians for negotiating an end-of-life plan when moving into any aged care facility. The other is to link such a plan to the Medicare chronic disease management item' used by GPs nationwide to manage the million most complex Australians. There are innovative new tools available to measure the risk of death in frail patients, but those tools are only as good as the time one spends with the patient.

The great majority of us will reach a point in time where we are forced to choose between a fight for life and the decision to accept death. It will be a time for wisdom, reflection and personal contemplation; as Nobel Prize winner Daniel Kahneman calls it; slow logical and calculating decision-making.

Our personal values and beliefs are synthesised into goals which inform specific treatment choices. Regardless of our personal views about what follows life, we should aim to travel to that point as comfortably as we can, rather than uncomfortably, surrounded by confusion, over-treatment and dispute between those we love. Health is specifically commissioned to prolong quality life and that should never be replaced by a singular focus upon prolonging death.

Governments on both sides and at all levels need to continue to push Australians to developing their own advanced care directives (ACDs), particularly those with chronic complex disease. Time spent by clinicians working with patients on ACDs is time, resources and emotional pain saved later on.