I was really excited when I read about Canadian ideas about the PATH style of decision making. Palliative And Therapeutic Harmonisation looks at older people with multiple conditions in a totally different way than the current ‘cult of cure’ approach. It’s less about keeping on ‘battling’, and more about quality of life and care at home.
Then I found four videos which go through the whole PATH to better decision making. In case you don’t have time to watch them all (and do please try to make time!), then here’s my summary.
All the good ideas here are from PATH – they have all the credit for these. If I’ve misunderstood anything, then I take all the blame for that. And I apologise!
Video 1 describes how PATH started when two doctors and their grandmothers had very different experiences. Both grans had dementia. Laurie’s gran spent lots of time going in and out of emergency rooms and hospitals, having lots of intrusive procedures. Paige’s gran was also in hospital when she died, But she had been cared for comfortably at home until her last five days. When she died, her care was dignified and the whole family were able to come together at her bedside.
Which would you rather have for your gran? Or you?
The societal improvements which have happened for gentle hospice care of people with cancer have not happened for frail older people with multiple conditions.
One of the reasons for this is because of the ‘cure’ / ‘brave’ / ‘fighting’ language we all still use about death.
Then there’s the lack of understanding doctors and patients have about prognosis — especially for those who have conditions other than cancer.
Dementia and heart failure have prognoses as poor as — or worse than — cancer.
With this in mind, decision making is all about ‘what treatment should I choose?’ rather than helping people to be comfortable and dignified.
Video 2 describes how, instead of holistic care, older people are subjected to an “epidemic of assessment”. Multiple, redundant, repetitive assessments cost money and use up individuals time and energy.
All these assessments are paired with asking patients and their families (or other substitute decision makers: SDM) open-ended questions about ‘what they want’.
A lot of the time, patients and SDM don’t know what is likely to happen, and what the effects of any interventions are likely to be. So they can’t know what they ‘want’ .
Clinicians using the PATH approach accept that they, the clinicians, have a responsibility to anticipate what is likely to happen. Sharing information about this must happen BEFORE any truly informed decision making can take place about any intervention.
So the PATH approach starts with comprehensive assessment of health, the social, and psychological situation for an individual and their care givers.
THEN information is shared about what is likely to happen (the ‘trajectory’ of the illness),
This approach is especially useful for people with cognitive impairment. One of the interesting studies PATH reported was about how showing people a video of what was likely to happen with dementia had much more effect on decision making than a simple written story.
People who could see what was likely to happen didn’t want ‘life prolonging’ interventions like ICU, and all the possible tubes and electrics. Those sorts of ‘treatments’ will often make people who are old and ill worse rather than better.
This vulnerability to health interventions is called ‘frailty’.
Video 3 talks about how Age is just a number: we all know, or know of, robust active 90 year olds.
But frailty is much more than a number: we all also know of less mobile, unfit, frail 65 year olds.
In traditional advance care planning (ACP), individuals values are used to underpin goals and so advance plans. Help with ACP often involves help electing values, so goals, and then — following on from that — plans and decision making.
This traditional approach:
- Assumes that patients need clinicians to integrate their values (even though we all manage to choose TV programmes, buy cars and even have children all by ourselves)
- Waits until people are ‘ready’ to discuss the issues — even though this means many don’t have discussions until its late, or even too late
- uses an ask-tell-ask model of communication
PATH takes a tell-tell-tell approach – and lets people integrate values for themselves.
After all, outcomes are not a simple ‘dead or alive’ choice.
For the tell-tell-tell, PATH uses scripts to make sure the clinicians don’t shy away from difficult conversations.
Patients/SDM can then develop a framework for decision making.
In crises, its important to distinguish what is easily treatable, and what is not. Then it’s not about treat or not treat.
But treat the treatable, IF and when that treatment will not make others things worse.
This is similar to – but maybe more specific than – the ideas about scenario planning I’ve already posted on here and here.
Video 4 gives an example: choosing whether or not to operate on cancer. An 83 year old man with dementia, CKD and lung disease has a Chest X-ray which shows lung cancer. It would be possible to operate on his lung cancer – but that would mean time in hospital which would likely worsen the memory problems, definitely mean deconditioning from the admission (which would reduce his mobility and independence) and might not actually increase his length of life.
Would you want surgical treatment of this sort of cancer for your grandad? Or you?