The 'officials' letting down those most vulnerable

Would you know what to do if you had to make decisions on behalf of a dying loved one?

If you answered no, you’re not alone.

A new study has found that most people who acted as a substitute decision-maker (SDM) reported “low to moderate understanding” of the role. Only 33 per cent of those surveyed were aware of the laws surrounding substitute decision-making.

Sixty per cent of people identified a health professional as their preferred source of support and information about their role, yet few reported receiving any support from them.

The research, conducted by the Australian National University (ANU), concluded that “the Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions”.

“Imagine being thrust into a job you didn’t apply for, given no training and then you’re expected to make life-and-death decisions for a loved one,” said study co-author Dr Karen Detering.

“That’s effectively what happens every day in Australian hospitals.”

Advance Care Planning Australia (ACPA) says people “are frequently called on to act as substitute decision-makers when a loved one is approaching end of life and are no longer able to make their own medical decisions”. 

The ACPA says the ANU study has identified “real gaps in available support and information” to help people make weighty end-of-life decisions.

“We can’t underestimate the real pressures that exist in our busy hospitals and healthcare system, but we also cannot ignore that health professionals have legal and ethical obligations to provide much needed information and support to help very stressed and overwhelmed people who are faced with these decisions,” says Dr Detering.  

Read more: Palliative self-care group shares stories

Each state and territory manages the issue differently across Australia.

The pandemic is highlighting the issue because aged care residents, who are especially susceptible to the virus, often have diminished capacity to provide consent for vaccinations.

Xavier Symons, a postdoctoral research fellow in the Plunkett Centre for Ethics at the Australian Catholic University, told ABC News healthcare workers assembled to administer COVID vaccines in aged care must rely on SDMs if they determine an aged care resident does not have the capacity to consent to the vaccination.

Dr Symons says the role of substitute decision-maker is to “act in accord with the preferences of the person entrusted to their care”.

“Their job is not to impose their own views of medical care on the patient. They should be an enabler for the interests of patients who lack capacity, rather than replacing the patient’s preferences with their own.”

The informed consent guidelines for vaccination in Australia state that a patient must act “voluntarily (and) in the absence of undue pressure, coercion or manipulation”.

There are practical and ethical issues involved. Vaccinators overseas have had difficulty tracking down SDMs quickly enough. And there have been “complex situations” where SDMs refuse vaccination for those in their care. Dr Symons advises aged care staff to contact SDMs as soon as possible to avoid unnecessary conflicts.

Read more: How to achieve your wish to die at home

Advance Care Planning Australia advice on being a substitute decision-maker:
A substitute decision-maker makes decisions for someone who has no decision-making capacity. You may be appointed as a substitute decision-maker in one of three ways:

  • chosen by the person
  • assigned to the person by the law in the absence of an appointed substitute decision-maker
  • appointed for the person (e.g. a guardian appointed by a guardianship tribunal).

If someone asks you to be their substitute decision-maker, think about what it might mean for you before you agree.

Ideally, you need to be:

  • available (live in the same city or region) or readily contactable
  • over the age of 18
  • prepared to advocate and make decisions clearly and confidently on the person’s behalf when talking to doctors, other health professionals and family members
  • comfortable with encouraging the person to talk through their preferences with you, their family members, and close friends.

As a substitute decision-maker, you have some important responsibilities. These may include:

  • speaking with the person about their values and preferences for healthcare
  • encouraging them to create an advance care directive
  • making important decisions on their behalf if they are ever unable to communicate.

Advance Care Planning Australia offers information and free advice to the Australian public and health professionals. Call 1300 208 582, Mon-Fri, 9am-5pm (AEST). 

Read more: Death and dying taboo subjects in many families

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Written by Will Brodie



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