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OVER the past few months there have been a number of TV public affairs programs and much online commentary about how we might best deal with the inevitability of death.
The discussions have explored palliative care, euthanasia, physician-assisted suicide, advance care planning, place of care, futility, quality of life, autonomy, choice, empowerment and so on.
Everyone has an opinion that is shaped by their experiences and cultural values. However, when we become a patient approaching the end of our life, our goals may change as the particular problems that we are facing become clear. Most do not seek to have their death accelerated but just want to be in a place where they are physically comfortable, feel safe and can be at peace.
As a doctor specialising in palliative care I have often wondered what I will want for myself when I start my decline towards death (assuming that I don’t die suddenly for whatever reason).
From innumerable conversations with my colleagues over the past 28 years, I realise that I am not alone. One eminent specialist said he was reluctant to voice an opinion in the euthanasia/assisted suicide debate because he could imagine circumstances (presumably from among the deaths of his patients) when he could not be sure that he would not wish to have the choice to end his own life.
- Related: MJA — What can we do to help Australians die the way they want to?
- Related: MJA — Routine integration of palliative care: what will it take?
- Related: MJA InSight — End-of-life legal warning
While doctors are generally a conservative bunch, and palliative care physicians are no different, it is important to recognise that we are no less diverse in our views than the rest of the community.
It seems likely that the laws regarding the control of our dying will change at some point in the future − how and when is up to the community and our elected representatives. In the meantime, however, there are ways we can improve how we deal with death right now, and with little of the argument seen on TV.
The first is to encourage openness in our consideration of the inescapable reality that every one of us will die – most, but not all, after the age of 70, and some dying as children. Even while we seek to delay death when possible and appropriate, we can learn to accept this normality and deal with the grief that inevitably accompanies it. Then we can move on to consider how we would like to live the remainder of our lives.
The second task is to recognise that modern medicine cannot prolong life indefinitely.
All doctors know of colleagues who continue to treat because they do not know how to stop treating, or how to talk with their patients about their impending death. When, as doctors, we fail to inform patients of the limits and downsides of our technologies, we disempower them from making sound choices about their lives.
When, as patients, we block wise counsel from doctors seeking to help us make good choices, we can condemn ourselves to outcomes that we might have preferred to avoid.
All doctors have to support patients who cannot countenance any talk of death and will not accept that further treatment would be futile.
These are issues of culture – the culture of our medical practice in which we are marinated during training, and the culture of the community at large that can teach us to fear death and view its acceptance as surrender. The consequence of these behaviours is that too often health care becomes extended dying rather than the prolongation of life. Changing culture is a responsibility for all of us.
- Related: MJA InSight — End-of-life care concerns
- Related: MJA — Meeting end-of-life care needs for people with chronic disease: palliative care is not enough
The third task is to ensure that health services deliver appropriate care for people at the end of life.
Fortunately, Australia has one of the best palliative care systems in the world. Palliative care providers, whether GPs or specialist services, understand what they need to do to improve the quality of life for their patients.
However, the real challenge is for clinicians working upstream from traditional palliative care. They must learn to identify those of their patients who are dying or may well die in the near future, communicate this reality to them (or their decision makers) and ensure that they are offered the opportunity to choose to do the things they wish to do while they can, within the limits of what is realistically achievable.
While doctors in particular are sometimes blamed for doing too much “medical stuff” to people, the reality is that we are all responsible. As patients and families we can ask and choose to listen. As doctors we can stop seeing our task as defying death, adapt our treatments to the values and achievable goals of the patient, and measure our successes by quality rather than time. As a community we can learn to integrate the reality of a finite life into the ways we lead our lives.
Those who avoid difficult conversations at those times when candour is essential can end up trapped in a medicalised death. We already have the right to take control of decision-making about our illnesses. Guided by clinicians who bring the wisdom of their collective experience, we can take charge of the choices that are available and shape the journey of our lives.
Just remember, 2 weeks in ICU can save you one hour of conversation (apologies to Sydney Brenner).
Dr Will Cairns is a specialist in palliative medicine, Clinical Lead for Queensland’s Strategy for care at the end of life, and author of the eBook Death Rules: how death shapes life on Earth, and what it means for us
Will Cairns mentions morphine, this was suggestd for me a couple of years ago when I presented with PAH and RHF (Pulmonary artery hypertension and right heart failure). I tried it recently; it gave me enormous constipation. I have tried other similar remedies supposed not to cause binding but none were succesful. Of course, it is not pain, but severe dyspnoea which at this time, comes with the slightest physical effort. What can be done, apart from oxygen? I would like to try medical pot but who will give it to me? I used to play all sorts of sport, to bushwalk and surf, none of these now, not even gardening. What about that, palliative care people?
KBO
Will is highlighting the need for a huge culture change in the community, from one which is death-denying to one which accepts death as the natural consequence of life.
The introduction of palliative care to the treatment plan early in the course of a life-limiting illness can help enormously. People need to recognise palliative care as being about living as well as possible and NOT synonymous with dying. When palliative care is engaged early, we have the opportunity to speak about treatment options and patient preferences.
The same culture change is needed with the majority of medicos. They almost universally regard palliative care as being for the last days of life and then they think it means putting the patient on morphine, no matter what the symptmatology.
However, before this can be instituted all the palliative care services MUST have the capacity to provide the services needed. They don’t have that in Australia at the moment! Many are on a shoestring, especially in rural and regional Australia.
Yes, we are judged to be the second best in the world, but even the best, the UK is drowning in work with reports of poor care at the end of life.
Let’s all advocate for access to specialist palliative care wherever people are, in the community, in aged care facilities, in acute hospitals, in rural areas. Then we be able to deliver the best possible quality of life and a good death with support for all concerned.