Editorials
Palliative care Ethics
Volume 195 - Issue 8

Advance care planning and end-of-life care

Authors:  William Silvester and Karen Detering

Med J Aust 2011; 195 (8): 435-436. || doi: 10.5694/mja11.10913
Published online: 17 October 2011
Download PDF (125 KB)
Share: Share on Blue Sky Share on Facebook Share on LinkedIn Share by email

It is never too late, or too early, to listen to patients about what they want

How people die remains in the memories of those who live on.

Cicely Saunders, Pain and impending death1

Isn’t it rather odd that, only a few decades ago, dying was a normal part of life? You would most likely be cared for and die at home, surrounded by family. While all the advances in medicine that treat disease and enable us to live much longer have been welcomed, what has been pushed off the agenda is that the mortality rate for all of us remains at 100%. It is in this context that advance care planning is beginning to be recognised as a pivotal part of end-of-life care.

In the 19th century, when little was understood about disease processes and few effective treatments existed, Sir William Osler famously said, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has”. As modern medicine evolved, with rapid scientific discoveries and technological advances, the focus shifted profoundly to cure — to defeating disease and saving or prolonging life at all costs. Early in the 21st century, it has become increasingly apparent that one of these costs has often been the quality of the patient’s survival. Modern medicine has started to focus equally on the disease and the patient.

There is much wisdom in the code of ethics for Catholic health and aged care services, which clearly states that if a treatment is overly burdensome or the burdens outweigh the benefits, the patient may legitimately forgo the treatment.2 To do everything possible just because it is possible, without regard to the patient’s goals, values and wishes, is ethically unsound and not good medical practice. Yet it is remarkable how often this occurs. How many times have doctors, both senior and junior, said that they were continuing or commencing treatment because the family wanted it, and not because they thought that it was right for the patient and was supported by evidence in the medical literature?

Our common law duty of care as doctors is to always act in the patient’s best interests. One of the most practical ways to put this into action is to regularly ask ourselves, “Am I caring for this patient or family the way that I would want myself or my family to be cared for, by taking the time to identify their personal, spiritual or religious views and take these into account when I am making decisions?”.

There are three opportunities to check whether the care we are providing is patient-centred. The first is with competent patients, by ensuring that their consent to treatment is fully informed, by understanding their goals and values that are relevant to their current or future treatment, and by identifying their wishes regarding treatment if they become seriously ill and can no longer decide or communicate what they want. This process of enquiry is called advance care planning. It may be as simple as identifying who the patient’s substitute decisionmaker would be and ensuring that this person is someone who has a clear idea about the patient’s goals, values and wishes. It may also include assisting patients to put their future wishes in writing. It is crucial to enquire what the patient would regard as an acceptable outcome, rather than make a shopping list of acceptable versus unacceptable treatments. Where is the patient’s line in the sand — his or her acceptable level of ability to communicate or of cognitive or physical function?

The second opportunity is when caring for a patient who is no longer competent. At this time, we need to look for any documents, such as an advance care plan, that record the patient’s wishes, and speak to the family and the substitute decisionmaker, if appointed. We should ask them what the patient would want rather than what they want, with the focus on what the patient would regard as an acceptable outcome,3 through questions such as, “If your father could sit with us here, right now, what would he tell us to do?”.

The third opportunity is when caring for a patient approaching the end of life. A study in which patients were interviewed identified five factors that patients regard as important to having a “good death”: avoiding suffering, avoiding the prolongation of dying, achieving a sense of control, relieving burdens placed on the family, and strengthening relationships with loved ones.4

Apart from providing good palliative care, the most effective way to achieve these goals is to know ahead of time what a person would want. More than half of us are not in a position to express these preferences at the end of life. In a randomised controlled trial published last year, we showed that advance care planning improved end-of-life care for elderly patients admitted to hospital, increased respect for the patients’ wishes at the end of life, improved patient and family satisfaction with regard to hospital care, and reduced the likelihood of anxiety, depression and post-traumatic stress in the surviving relatives of patients who died.5

The skills needed to effectively facilitate advance care planning are learnable. Through the Respecting Patient Choices Program, medical and non-medical health professionals can be trained to discuss these personal, intimate subjects with patients and their families in a sensitive, compassionate way.6 It is never too late, or too early, to listen to patients about what they want. The importance of involving patients in decisions about their care was acknowledged by a maxim in a recent white paper from the Department of Health in the United Kingdom: “no decision about me without me”.7

Authors

  • William Silvester MB BS, FRACP, FCICM1
  • Karen Detering MB BS, FRACP, MHEth2
  • 1. Austin Health, Melbourne, VIC.

Correspondence: william.silvester@austin.org.au

Competing interests

No relevant disclosures.

References

View this article on Wiley Online Library