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Not in your best interests: the challenge of declining treatment

16 August 2019 | Georgie Haysom, Head of Research Education and Advocacy, Avant

You are called to see a patient who has presented to the ED after a fall. The patient is 85 years old and an X-ray shows a fractured neck of femur. He also has respiratory failure. He is confused and has been given endone. He is accompanied by his son and daughter-in-law. You do not think that surgery is in his best interests given his co-morbidities. The patient and his family are keen to “have everything done”.

How would you manage this situation?

Most discussions about the consent process focus on the need to ensure that the patient has a good understanding of the risks and benefits of a procedure that the surgeon recommends. But there is less discussion about how to deal with the situation where a patient wants or expects a procedure that the surgeon does not believe is in the patient’s best interests. The situation is even more fraught in the end of life context. How can you have a patient-centred conversation about treatment options without the patient and their family feeling abandoned?

The legal principles

The legal principles are well-established, but often not well understood by clinicians, even those practising in the end of life field.

Making decisions about health care is a shared responsibility of the doctor, the patient (or their substitute decision-maker) and the rest of the treatment team. Decisions should involve the patient’s family or carers where appropriate and with permission.

However a doctor is not obliged to offer or perform a procedure that they believe is not clinically indicated or in the patient’s best interests, or is futile. Anaesthetists can decline to give an anaesthetic if the patient is unlikely to survive the surgical treatment, even if they are likely to survive the initial anaesthetic. A patient (or their family) cannot demand that a doctor perform a particular procedure. Doctors’ professional obligations include only providing services that are necessary and likely to benefit the patient. Doctors may be criticised for performing a procedure they did not consider appropriate. It will not be enough to say “the patient wanted me to do it” to justify performing such a procedure.

But often it’s much harder to talk a patient out of surgery than to agree to perform it.

Patient-centred conversations

Developing shared goals of care

Before having the discussion about specific procedures, it is critical to understand the patient’s wishes and priorities, suggests US surgeon Atul Gawande.

Whether a procedure is in a patient’s best interests or is futile is a difficult and value-laden question, particularly at the end of life. For some, treatment that prolongs their life even for a short time may be important, for example, to allow them to attend a family function. For others, the burden of surgery may outweigh the benefits, for example if there a significant risk that the patient will spend their last days in the ICU.

Assessing capacity

As in this scenario, patients may present as confused and it is important to consider whether they have capacity to make a healthcare decision.

Capacity is about the person’s ability to make a decision, not the decision they make. A person with capacity can validly refuse treatment, even if it could lead to their death. Just because you may not agree with the decision does not mean that your patient lacks capacity.

Assessing capacity can be challenging, particularly where a patient is in pain, is on medication or has a condition that impacts on their cognitive function. Capacity is decision-specific, and can vary from person to person and from situation to situation. It can fluctuate and be present, or lost, for different decisions at different points over the trajectory an illness. Each patient must be assessed individually, and by reference to the decision to be made. It may be helpful to involve another colleague such as a psychiatrist, geriatrician or psychogeriatrician.

If a patient does not have capacity, healthcare decisions for the patient must be made by a substitute decision-maker. If the patient has an advance care directive or advance care plan this may name the patient’s substitute decision-maker, as well as guide decision-making at the end of life.

Supporting the patient

Once you have understood the patient’s wishes and priorities, it may be easier to explain to the patient why you do not believe the proposed treatment will help them achieve those wishes.

Involve others in the treatment team in the discussion, including the patient’s treating physician. Offering the patient a second orthopaedic opinion, and an opinion from an anaesthetist, can also assist the patient and family to understand the situation. The patient may also wish to involve others to provide social support, such as religious advisers. You may also wish to discuss your approach with hospital administration in case the family raise any concerns with them.

Finding the right words is important. Gawande, for example, writes about using the words “I am worried …” to communicate not only the seriousness of your concerns about the proposed procedure, but the fact that you are on the patient’s side.

Patients and their families may feel that your proposal not to proceed with surgery, means that they are being abandoned. It is important to make it clear that “no surgery” does not mean “no treatment” or “no care”.

Ensure that the patient and their family know they will be provided with ongoing support and treatments including symptom relief.

Further information

These are situations many doctors feel poorly-equipped to manage. To support clinicians, End of Life Law for Clinicians (ELLC), a free national training program for clinicians and medical students, has been developed by researchers at the Australian Centre for Health Law Research, QUT and the Institute of Health and Biomedical Innovation, QUT. The program is funded as part of a national Palliative Care Grant from the Commonwealth Department of Health. Avant is represented on the advisory committee for the project.

ELLC aims to improve doctors’ legal knowledge to help manage legal issues in practice, to help clinicians deliver high quality, appropriate end of life care, and to improve communication with patients and families.

The training modules attract CPD points and are available through the End of Life Law in Australia website.

References

End of life decisions for aged care. Factsheet: Substitute decision-making. 2018.

Gawande, A. Being Mortal: Illness, Medicine and What Matters in the End.2014. Profile Books. London.

White B, Willmott L, and Cartwright C. Doctors' knowledge of the law on withholding and withdrawing life-sustaining medical treatment, Med J Aust 2014; 201 (4): 229-232.

This article was originally published in the Australian Orthopaedic Association Bulletin Vol 40 No.2 winter 2019.

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