Advance Care Directives – do they really work?

Circling back to advance care directives, which we like to do regularly, newly published research shows:

  • Advance care directives (ACDs) were believed to be beneficial in decision making when patients, families, and Accident and Emergency (A&E) staff agreed with the decisions made.
  • ACDs were often made a long time ago but were useful to start conversations around goals of care and end-of-life care relevant to the patient’s current situation.
  • The findings reinforced that an ACD is beneficial when used alongside goals of care.

The study only involved 16 A&E professionals. But these take-outs show a lot more work needs to be done on advance care directives in Australia.

“Experiences of Australian emergency doctors and nurses using advance care directives in the provision of care at the end of life”, was published in the April 2024 issue of Emergency Medicine Australasia.[1]

It shared interviews with seven Emergency doctors and nine Emergency nurses who work across metropolitan, rural and regional Australia.

It identified the set of barriers and advantages that will be familiar to anyone who has negotiated ACDs in the real world. To summarise (and slightly paraphrase):

The positives about ACDs are:

  • they can be great end-of-life discussion starters
  • they can help with difficult discussions if the patient has already said they don’t want invasive therapies
  • they help ease the pressure on families about decision making
  • they can help clarify the prognosis and so reveal how ill the patient really is to both the patient and the family – often patients don’t know the true extent of their diagnosis
  • they work well in people with high health literacy
  • when they inspire honesty from clinicians early, this helps everyone understand the prognosis
  • involvement of intensive care professionals can help share the burden of communication by A&E staff with families and the patient.

The negatives:

  • despite ACDs, families in denial can still obstruct the patient’s desires
  • despite them, families who don’t realise the true implications of the patient’s prognosis can delay decision making adding to the burdens of the patient
  • families can impose treatments because they don’t realise how close to death the patient is
  • some ACDs are filled in with lack of meaningful guidance
  • some doctors still don’t want to talk about death with patients
  • A&E rarely has all the information staff need about the patient
  • often staff must deal with unavailability of resuscitation and ACD documents at the patient’s presentation to the Emergency Department
  • goals of patient care plans aren’t enough to work with on their own, although they can create a helpful bridge to the end-of-life discussion.

The authors conclude ACDs are useful, but more as a prompt to start the difficult conversation about end-of-life, rather than as a guide to what the medical practitioner should do.

Old or Irrelevant Directives

Participant D said:

“The advance care planning is simply patient preferences sometimes even two decades ago.”

Two decades!! Is it even appropriate to define that as an advance care directive? Isn’t it a historic refection on what someone once thought? No wonder Participant D feels he can’t work with them if that’s typical of the age of the paperwork.

It’s a reminder that relevant time frames are essential or the document is meaningless.

Incomplete and Vague Directives

Participant D again:

“Usually, they haven’t ticked anything other than if I get sick, I want to go to the hospital. I’d like everything done … It’s quite different to deciding on therapies for the current presentation.”

This research shows that sometimes ACDs are meaningless because they show so little. And yet sometimes people feel they need to write an advance care directive that is too long. Thirty-four pages is too much when the doctor is trying to save your life.

So, not too long and not too short. Following the Goldilocks principle, somewhere in the middle. But again, people need a lot more help with this. They need help in understanding what they’re asking for. Again, this shows we need to inform lay people more – and earlier in their disease progression.

The researchers found: “The unavailability of resuscitation and ACD documentation at the time of presentation to the ED may lead to providing treatments that did not align with the patient’s wishes.”

And: “Some of the participants suggested that ACDs should be performed as a routine assessment in primary care as they were not just about resuscitation.”

This means starting with a general practitioner or a nursing team, when a life-limiting illness is first diagnosed, even if at the time the patient seems well.

The researchers say: “ACDs and goals of care conversations in the ED setting with patients who were terminally ill but clinically stable are beneficial because it can set precedence for future management although preventing unwarranted treatments.” 

Yes, beneficial. But ideally A&E would not be the point of the first conversation. Unfortunately though, we know that today this is still the place where it is most likely to  happen first.

As the authors note, an Australian study of 2021 showed only 13 per cent of older Australians presenting to A&E had an advance care directive.

So, opportunities need to be taken by the medical system to invite people to reflect on their end-of-life before they find themselves in an A&E.

The researchers explained: “The participants stated that it was important to have the ACD information at the right time with all the right information but often they did not have a complete picture and history of the patient they were caring for.”

Participant D: “The next stage of barrier is incomplete information, so it’s rare that every bit of information you think you’d like about prognosis and current diagnosis and findings and patient preferences were available.”

This reinforces that the process of advance care directive development needs to be carried by the whole institution. It is unfair to everyone – both the staff and the patient – to suddenly be confronted with a medical crisis, without access to true knowledge of just how bad the prognosis is and the documents about treatments leading to that point.

The study participants: “…highlighted the benefits of an ACD and yet also said that its implementation might also be dependent on the family members agreeing with the documented goals of care.

To see how much institutions rely on family would be revealing for those who fill their advance care directives in with the deliberate intention of overriding family wishes contrary to their own.

Our Interviews

We’ve interviewed and received feedback from a large number of people who’ve lost faith their wishes will be followed because of this.

Best if the planning and or the directive itself is done with discussion between the potential patient and their family to avoid people’s wishes being undermined.

And once again, opportunities need to be developed so that families can talk through diametrically opposed positions well before the patient gets to A&E and this needs to be documented.

In one situation we know where this was well managed by the family, an elderly woman insisted that her advance care directive was truly what she wanted, when she refused treatment for her pneumonia. She was adamant, the staff were uneasy, but her son was able to validate her position in discussion with A&E staff.

It can so easily go differently.

We know of another case where a father heard his son telling staff to make Dad comfortable with no further interventions. The father, very clearly and using his own voice, countermanded that, insisting he wanted to be treated.

The son was the enduring guardian, but the patient’s voiced opinion overruled his son’s belief about what he would want. But that wouldn’t have been possible if the father was unconscious at the time, a common scenario.

Misunderstandings, changes of heart and contradictory positions to the last discussion are common and even small ones can cause long-term anguish to families. More information for families and radically improved approaches to communication channels set up between them would help with this.

Participant A said sometimes the patient and family don’t have an idea of how bad their diagnosis is: “It’s a shock to realise from doing an ACP that they have never been told about the true extent of their diagnosis.”

If this is common, and anecdotal evidence suggests it is, again, this shows better education about the patient’s condition and prognosis is needed much earlier in the illness trajectory.

There are patients who’d prefer not to converse, no matter what this costs them in terms of how their wishes are interpreted. But we have an obligation to ensure we don’t miss those who would like to, but need a little help with that goal.

Because outside of A&E, there are many people yearning for conversations about these subjects who are just not given that opportunity.

This research involved the insights of only 16 people.

It would be fascinating to see a similar study involving many more.

To read the study, go to:

Experiences of Australian emergency doctors and nurses using advance care directives in the provision of care at the end of life

Oluwatomilayo Omoya RN, GradDipEmergNurs, BN (Hons), PhD, MCENA, Anita De Bellis RN, DipAppSc, BN (Man), MN, PhD, Katrina Breaden RN, BAppSc, GradCertEd, MN, PhD 

First published: 08 November 2023

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