Talking about dying won't kill you
“You'll stay with me?'
Until the very end,' said James.”
― J.K. Rowling, Harry Potter and the Deathly Hallows
This week is National Palliative Care Week 2015, organised each year by Palliative Care Australia.
This year’s theme is Dying to Talk; Talking About Dying Won’t Kill You, which is intended to get the community to talk about death and dying, to normalise death and, most of all, to prepare for it so that a patient’s wishes and needs at the end of life can be met.
In recognising National Palliative Care Week 2015, the AMA has publicly promoted the importance of advance care planning, the need for patients (and their loved ones) and doctors to work together to discuss death and dying, to establish a patient’s values and goals of care at the end of life, and to identify a substitute decision-maker.
But while we may encourage our patients to think about death and dying, as a profession, we often struggle to come to terms with it ourselves.
I do not mean our own deaths. As doctors, we know a lot about death – we understand what is realistic and what is not in terms of prognosis, and we have a good idea of what investigations and treatment we would, or more likely would not, accept as part of our own end of life care.
I suggest that many members of our profession may struggle to accept the inevitable death of their own patients. As doctors, we often measure success as saving, or more aptly, prolonging a life. But do we give adequate emphasis to quality of life? What if it is poor in the eyes of the patient? What if the patient’s values and goals of care are not met?
It is helpful (though confronting) to consider our response if the patient chooses not to undergo that additional treatment. Is the patient giving up on us? Or worse, is the patient somehow failing us by not responding to, or no longer desiring, treatments that focus on the prolongation of life?
Of course not!
Death and dying is not about us as doctors. It’s about the patients – their individual experiences, their perspectives and values around end of life care. Good quality palliative care always endeavours to identify the patient’s values and goals of care and, wherever possible, upholds their preferences.
The medical profession is in a unique position to lead the wider community in a healthier understanding of the end of life. But to do that effectively, we must also examine our professional culture and rhetoric around death and dying.
I pay tribute to our colleagues who work in palliative care. They do an exceptional job in caring for the dying, individualising care to maximise quality of life. But we cannot leave palliative care to this relatively small group.
I think there should be a ‘whole of profession’ approach to end of life care where, regardless of career choice, medical students and doctors are trained in palliative care during their early medical education and through continuing professional development.
In the vast majority of circumstances, the death of the patient should not be regarded as a failure of care. Equally, an emphasis on quality of life, and the fulfilment of agreed goals of care at the end of life, should be seen as successful medical care.
I believe that the care provided within the Australian health system would be significantly enhanced if:
- a patient’s goals and values of care are identified earlier;
- patient health care needs are identified earlier;
- there is greater access to palliative care and related services across the health spectrum;
- there is improved communication, continuity and co-ordination of care within and between hospital and community sectors; and
- more doctors and health care personnel become actively involved in providing end of life care in primary care and specialist settings.
Care for the dying should never occur in isolation – our nursing, allied health and community service colleagues are essential to supporting patients and their families. The professionalism of these multidisciplinary teams is something of which we can be immensely proud.
I conclude by encouraging you discuss these matters within your communities, and within our profession. Talk to your colleagues about how you can better care for patients as they approach the end of their life.
Remember, talking about dying won’t kill you.
Published: 25 May 2015