Why We Must Talk About Death

Why we must talk about death, Jan. 9, 2010.

SOMETIMES as an Australian health policy wonk, at present based in Washington, DC, I long for the more considered, low-key level of political debate in Australia. But there are times when I wonder why Australians aren't more passionate about certain issues and more willing to bring others into the open for discussion.

A classic example is advance care planning for end-of-life decisions.

Last August a relatively obscure provision in the far-reaching health system reform legislation now before the US Congress that would reimburse doctors for counselling Medicare patients about end-of-life care options came under intense fire from conservative opponents.

Republicans, conservative commentators and boisterous activists at congressional town hall meetings condemned the provision as part of a larger plan to ration medical care. Former vice-presidential candidate Sarah Palin incorrectly claimed it would place seniors before "death panels" who would decide what care they should receive.

These charges willfully ignored the real purpose of the provision, which would allow patients, if they wanted, to discuss a broad range of issues with their doctors, including hospice, living wills, advance directives and appropriate pain care.

Is it Australian reticence, the fact that acknowledgment of the inevitability of death and preparation for it has largely lost its place in our culture, or our unwillingness to abandon the hope offered by medical and technological advances, that keep us from an open discussion on this issue? There's no item in the Medicare Benefit Schedule specifically for advance care planning, although there are a number of items for treatment and management plans that could be used as substitutes.

For more than a decade advance care planning has been recognised as best practice in medicine, an example of patient-centred care that helps patients get the care they want at the end of their lives. Advance care planning encourages individuals to reflect on what is important to them, on their beliefs, values, goals and preferences in life and how they want to be cared for if they reach a point where they can no longer communicate their wishes about medical care.

When people don't talk to their families, their doctors or carers about what's important to them and how they would want to be cared for, end-of-life care is often compromised and families are burdened with difficult decisions, placing unnecessary stress and anxiety on everyone involved. It can be difficult for doctors and families to accept that cure is improbable or impossible, or that continued life support is inappropriate or unkind.

These data and other research suggests that for the very elderly, the healthcare system does moderate the extent of aggressive treatment, including intensive care unit admissions, cardiac catheterisation, dialysis, ventilators, pulmonary artery monitors and chemotherapy, and that these people are more likely to die at home or in long-term care.

The finding that increased costs are associated with proximity to death while the magnitude of the increase is inversely associated with age, has implications for the debate about whether proximity to death or age is the dominant driver of healthcare costs.

But healthcare costs should not be the dominant driver of end-of-life options and decisions.

Moreover, to the extent possible, these decisions should lie with the patient. A study from 1997 found that in 22.5 per cent of all Australian deaths doctors withheld or withdrew treatment from patients -- without the patient's explicit request -- with the explicit intention of ending life. The study's authors theorised that this undesirable situation existed because doctors were reluctant to discuss medical end-of-life decisions with their patients, lest these decisions were construed as collaboration in euthanasia or in the intentional termination of life.

End-of-life decision-making is fundamentally an extension of the basic principle of medical treatment. That treatment cannot be provided without informed consent.

And advance care planning ensures that the patient's wishes are known and acted on, even when they are no longer capable of providing informed consent.

But despite these dilemmas, almost certainly the real issue that keeps this subject out of everyday conversation is money, more particularly the thought that encouraging people to make an end-of-life directive through advance care planning is about encouraging people to turn away from expensive medical care so the healthcare system can save money.

In Australia in 2007, end-of-life hospital care averaged $13,513 a person and about 40 per cent of this was spent in the last month of life. The biggest costs are incurred by caring for people aged 65-74 who, in 2007, accounted for about 9 per cent of hospital inpatient costs.

Surprisingly, hospital costs fall as age increases. The cost of dying in hospital for people aged 95 years or older was less than half that of their younger counterparts: $7028 compared with $17,927. This is because 73 per cent of people aged 95 or older died outside of hospital and most had not used any hospital inpatient services in their last year of life, while about 61 per cent of younger patients died in hospital.

By Lesley Russell, writing in The Australian