Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Wednesday, November 13, 2019

I Think The ADHA Might Have Overestimated The Usefulness Of Holding Advanced Care Directives In The #myHealthRecord.

This appeared a few days ago.

Treatable conditions, family tensions can see advance care directives overruled

Directives are meant to enshrine patient autonomy near the end of life, but doctors may be inclined to act in what they consider the patient’s best interest, new research has found.
07 Nov 2019
A new study has found that many doctors experience internal conflict when carrying out a patient’s legally binding wishes, particularly when the directives are vague or not current, or when the medical condition seems reversible.

The BMJ Open study led by Advance Care Planning Australia researchers gave 21 doctors at a Victorian hospital real-life scenarios to uncover how doctors use advance care directives in challenging circumstances.

The study found family opposition or a lack of access to the directives to be other reasons for overriding advance care directives.

Doctors in the study also struggled to follow the legally binding directives if they felt a patient’s best interests lay in another course of action, often questioning whether non-medically-trained people are adequately equipped to make complex medical decisions in advance.

Advance Care Planning Australia Program Director Linda Nolte believes the research speaks to the challenges doctors could face when enacting advance care directives.

‘We can’t underestimate the real-world dilemmas doctors sometimes face in enacting advance care directives, but, equally, we can’t lose sight of the fact [they] are legally binding documents,’ she said.

‘Competent adults have the right to make decisions in advance as to how they wish to be cared for, and quite rightfully they expect that everyone involved in their care will do their utmost to respect their choice.’

Ms Nolte told newsGP she was not surprised by the findings.

‘The study shows doctors have a lot to consider when they’re looking at advance care directives. It shows doctors are putting in place robust consideration,’ she said.

‘Ultimately, we want them to uphold a person’s autonomy and their preferences for future care.’
Lots more here:
There is also coverage here:

Doctors often 'deeply conflicted' over end-of-life wishes

Futile treatments and out-of-date plans test doctors resolve to abide by advanced care directives: Aussie study
7th November 2019
Doctors can be “deeply conflicted” and sometimes struggle to comply with a patient’s end-of-life plans, especially if they feel the condition is treatable or they doubt the directive’s validity, an Australian study shows. 
The Victorian researchers say that hospital specialists are motivated most by a patient’s best interests, ahead of respecting their autonomy, when making medical decisions based on advance care directives (ACDs).
“Doctors tended to rely on their own clinical judgement to make treatment decisions, sometimes overriding the ACD on the basis that the treatments requested were ‘unreasonable’, ‘futile’ or that the patients’ condition was potentially ‘reversible’,” they wrote in the BMJ Open. 
The researchers interviewed 21 doctors from a variety of specialties at a Melbourne hospital after presenting them with three case vignettes to explore how doctors used ACDs to guide treatment decisions.
The authors, led by researchers at Advanced Care Planning Australia at Austin Health in Melbourne, said their findings revealed the complexity of following such directives.
“Some doctors experienced deep conflict when weighing up decisions to follow ACDs in scenarios where they disagreed with the patient’s decision,” the researchers said. 
“This was because they felt 'morally tied' to follow decisions to refuse treatment because they believed it was important to respect the patient’s autonomy."
More here:
The articles were stimulated by this paper:

Doctors’ perspectives on adhering to advance care directives when making medical decisions for patients: an Australian interview study

31 Oct 2019
Abstract:
Objective: Advance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.
Design: Face-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors’ decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.
Setting: Doctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.
Participants: A total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.
Results: Four themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients’ ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).
Conclusions: ACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients’ best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors’ knowledge and confidence in ACP and enacting ACDs.

Here is the link and access to the full paper:

To me all this just highlights how complex this area is and how just providing a data-base entry regarding the existence of a directive and a .pdf of the directive has the risk of doing more harm than good, offering confidence the issue is in hand.

You can read all about the way the system operates here:

However, it is the steps before and after the download that really matter!  The most important issue is that everyone in the family and your GP really understand just what your wishes are, and that you have communicated to all who might have an interest what you want.

This vital step keeps to a minimum the distant relatives who rush in and demand you receive futile treatment because the key people in you life already know what your wishes are and will be keen to see they are carried out.

A properly drawn up and signed ACD is a legal document and assuming it is not many years old should be honoured by both relatives and medical staff.

The other issue is, of course, to make sure the document is easily accessible and verifiable, and that the custodian(s) you choose know your wishes. As the doctors or custodians may not have #myHR access the most important step at this point is to make sure the relevant ones do have a copy – especially treating doctors and hospitals as well as all relevant relatives.

Getting your wishes properly honoured takes a good deal more than a .pdf upload to your #myHR! I think there are other and better ways to get what you want, if you are concerned. That said, placing your ACD on the #myHR as a backup can do little harm as long as you are fully aware of the limitations of doing it.

David.

1 comment:

Anonymous said...

David, you could shorten the title of this blog entry to "I Think The ADHA Might Have Overestimated The Usefulness Of The #myHealthRecord"

That would just about cover it all.

The problem is that the Labor party still wouldn't understand, and the government doesn't want to understand.