Of death and dying – the discussion we must have
As Australians, we now enjoy a longer life expectancy than any previous generation.
Nutrition, vaccination, public health measures and a world class system of medical care all play their part in this great outcome. Greater longevity, however, also has implications for the way in which Australians reach the end of their lives in the twenty first century.
As doctors, we understand and acknowledge that most of us will eventually succumb to the effects of chronic disease, and that medical care is as much about disease control and symptom relief as it is about prevention and cure.
How we care for our patients as they approach their death can be among the most difficult yet rewarding aspects of our professional lives. I have certainly found this to be the case in my own clinical work.
The AMA recently published its Position Statement on End of Life Care and Advance Care Planning 2014. The statement is an update of (now superseded) policy statements on the role of the medical practitioner in end of life care and advance care planning. The statement has undergone a major transformation, updating definitions and applying more contemporary terminology and clarifying policy positions.
It addresses a range of issues relevant to end of life care, including decision-making capacity, cultural awareness, conscientious objection, palliative care, artificial nutrition and hydration, workforce, and advance care planning.
The statement strongly supports patients to make their own informed health care decisions, emphasising the importance of open, continuous communication and collaboration between the patient, the health care team led by their doctors, and, where appropriate, the patient’s carers, family members and/or substitute decision-maker (SDM).
A significant issue, however, concerns the often contentious and emotive matter of medical futility. While the medical profession supports patients (or their SDMs, as relevant) in making informed decisions to withhold and/or withdraw life-sustaining treatments, doctors are generally not obliged to try to prolong life at all costs.
Indeed, the Medical Board of Australia, in its Code of Conduct, states that good medical practice involves:
3.12.4 Understanding that you do not have a duty to try to prolong life at all cost. However, you do have a duty to know when not to initiate and when to cease attempts at prolonging life, while ensuring that your patients receive appropriate relief from distress.
In the (now superseded) Position Statement on the Role of the Medical Practitioner in End of Life Care 2007, we addressed medical futility as follows:
Medical practitioners are not obliged to give, nor patients to accept, futile or burdensome treatments or those treatments that will not offer a reasonable hope of benefit or enhance quality of life.
Upon reviewing this position, the AMA agreed that the general principle still holds true, but that it did not recognise the subjective nature of futility – that what is futile to the doctor may not be futile to the patient (or their SDM).
The doctor contributes his or her clinical judgement to determine medical futility based on expertise in physiology, pathology and therapeutics. Indeed, the updated position statement defines medical futility in clinical terms as “treatment that gives no, or an extremely small, chance of meaningful prolongation of survival and, at best, can only briefly delay the inevitable death of the patient”.
With this information in hand, the patient (or their SDM) decides whether or not the proposed treatment has the potential to meet their goals of care. Not all patients will feel the same way – the values and goals of care of individual patients will differ. For some, the chance of living for a few days, even in discomfort, may be meaningful if it provides them with an opportunity to spend time with a particular loved one or fulfil a similar, profound experience – for them, the treatment is not futile.
While we may believe it is inappropriate for patients (or SDMs) to demand medically futile treatment, the patient’s views should be elicited, taken into account (along with relevant legal and resource implications), and discussed with the patient (or SDM) before making a decision not to offer a particular treatment.
The updated policy on medical futility now states:
7.1 Doctors should understand the limits of medicine in prolonging life and recognise when efforts to prolong life may not benefit the patient. In end of life care, medically futile treatment can be considered to be treatment that gives no, or an extremely small, chance of meaningful prolongation of survival and, at best, can only briefly delay the inevitable death of the patient.
7.2 Whilst doctors are generally not obliged to provide treatments that are considered medically futile, where possible it is important that the doctor discuss their reasons for determining a treatment to be medically futile with the patient (and/or the SDM, carers, family members) before deciding the treatment should not be offered.
7.3 In some cases, a treatment may not offer a benefit in terms of curing a patient’s condition, or significantly extending life or improving quality of life, but it may benefit the patient in other ways. For example, a ‘medically futile’ treatment may briefly extend the life of the patient so he or she can achieve their wish of saying goodbye to a relative who is arriving shortly from overseas.
This updated position reflects our commitment to respecting patients and supporting them in achieving their goals of care, where possible, at the end of life.
The AMA Position Statement on End of Life Care and Advance Care Planning 2014 can be viewed at: position-statement/position-statement-end-life-care-and-advance-care-planning-2014