We must advance with advance care planning
BY DR CHRIS MOY, CHAIR, AMA ETHICS COMMITTEE
As empirically driven pathways, processes, evidence, risk management and two- and five-year survival rates increasingly frame our work as doctors, intangibles of care (such as self-determination, aligning with patient wishes, empathy and compassion) seem to stand in devalued juxtaposition because of their inability to be quantified and therefore justified.
Whereas we can comfortably freewheel in daily routines based on scientific rigour and repetition of process, entering difficult discussions with patients and their families, and navigating through the woolly world of patient emotions can seem uncomfortable and time consuming.
In situations where patients may be near the end of their lives, if we are honest with ourselves, it may mean that it is easier to stay on the safe path of offering one more round of treatment than entering the difficult discussions that are needed with scared and confused patients and their families. The bravery and patience that is required by a doctor to initiate and walk patients through end-of-life discussions will never be recorded in outcome measures and will remain without a value in history.
That is until we become patients ourselves – or someone close to us does.
It may only be then that we realise the value of empathy, patience and emotional intelligence in a doctor. We remember that a patient is not merely a diagnosis, and that blind adherence to guidelines, processes and outcomes are poor substitutes for wisdom and kindness.
National Advance Care Planning Week (16 to 20 April), is a time to reaffirm that our job as doctors is to offer appropriate options and to align care with the values, aspirations and goals of our patients.
Advance care planning is a critical but clearly underused tool in seeking to fulfil this aim.
From the AMA Position Statement on End of Life Care and Advance Care Planning 2014:
Advance Care Planning – A process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known so they can guide decision-making at a future time when that person cannot make or communicate his or her decisions.
11.1 It is important that advance care planning become part of routine clinical practice so that patients’ wishes and preferences for health care, particularly end of life care, are known and met.
Forms with varying names, such as Advance Care Directives and Advance Care Plans, comprise documents on which patient wishes and preferences, sometimes including the appointment of substitute decision-makers, can be recorded.
Encouraging advance care planning from early on can have great benefits in bringing all parties – the patient, family, carers and health team – onto the same page regarding future care of the patient. Later on, this can reduce the lingering distress and guilt that family members may suffer in having to make difficult decisions. In addition, it can reduce the conflicts that can occur between the health team and family members when a patient loses decision-making capacity and where, because we as doctors cannot read minds, risk imposing our own values on legally and ethically complex situations.
The bottom line is that we, as doctors, need to genuinely promote advance care planning. We should urge patients to understand that they cannot blame doctors for providing care that they do not want if they do not tell us. And we should tell patients about the wonderful gift they can give to their families in lifting the burden of grave decisions, and in reducing the guilt that their loved ones may live with into the future.
But most of all, we need to do this because this is a fundamental rights issue for our patients. Advance care planning gives a patient self-determination beyond the point at which they can no longer speak.
Doing this can help in allowing us to work as we should – with our patient (and their wishes) as our first concern. It may also help in balancing the rigour of process with much needed humanity in our daily work.
*Dr Chris Moy is an Ambassador for National Advance Care Planning Week which is being run by Advance Care Planning Australia. https://www.advancecareplanning.org.au/acpweek
Be sure to refer to the advance care planning forms and documentation relevant to your State or Territory on the Advance Care Planning Australia website: Advancecareplanning.org.au