On 16 March 2022, we hosted our first webinar of 2022! We were honoured to have Dr Noreen Chan, Senior Consultant in Palliative Medicine, ACP Lead at the National University Hospital in Singapore, deliver a wonderful presentation on ‘ACP is a Journey not a Destination, How do we travel well?‘.
Due to time constraint, we were not able to get through all the questions posed during the Q&A session. Dr Chan has kindly answered the remaining questions in her own time:
*Participant names have been removed for privacy purposes
Q: What would the action be for palliative care peak bodies to foreground the concept of ACP as an ongoing journey?
I think the palliative care community can model good practice, to quote Mahatma Gandhi “we must be the change we wish to see in the world”. Much as I wish to see ACP decoupled from end-of-life (EOL), a late conversation is better than no conversation at all. But we mustn’t fall into the trap that ACP is just about preferences around treatment, place of care and place of death. It’s about how we want to live before the dying, and that means we need to start talking, and keep talking.
Q: In your opinion, when engaging the public in terms of awareness of Advance Care Planning, what would be your core message to the public?
It is can be challenging to engage the public when it is normal human reaction to be avoidant of “negative” topics like illness, dying and death. There are various angles that have been used, for example:
Around choice – we cannot choose if illness is going to strike us, but we can choose how we respond, how we live, and what matters to us;
How ACP can be viewed as an act of love, so that our loved ones are not over-burdened with decisions making.
In Singapore, the national ACP programme is overseen by AIC or Agency for Integrated Care and they have produced some videos:
On Cardiac illness https://youtu.be/hE38rB-3Hx4
On Dementia https://youtu.be/TI5V5TcOWnc
And there is an interesting website called Our Grandfather Story – Can Ask Meh? That explores controversial or rare talked about topics. This one is called “Are You Afraid of Dying?”https://youtu.be/GH_BbtZLuI8
Q: I was just wondering if ACP or “Serious Illness Conversations “ is included in the Medical Curriculum in Singapore?
In the YLL (Yong Loo Lin) School of Medicine where I teach, sadly no, but I hope to be able to incorporate it into the curriculum in the near future.
Teaching ACP is not straightforward because we are talking about links in a chain, that starts with the conversation that (hopefully) leads to an ACP document, and down the road, there will be a medical crisis when decisions will be made about treatment. And to understand the value and place of ACP, is first to understand that “chain”.
Q: Prognostication is not an easy task. Sometimes discrepancies occur between the oncologist’s prognostication and ours. How should we deal with this situation when we plan to discuss ACP?
My answer to this question is in two parts:
First, we need to ensure that we understand the science, and develop the art, of prognostication. The science tells us that doctors is general are inaccurate at prognostication, although their accuracy improves the closer the patient gets to death. Doctors tend to over-prognosticate, by a factor of 3-4 times! The likelihood of inaccurate prognostication increases if the doctor is inexperienced, or if the doctor has a very close relationship with the patient.
Prognostication is an underrated and undervalued skill, and therefore not taught. But one can learn how to do it, and with practice you can attain quite a high level of accuracy. And when that happens, people will have to admit your prognostication is more reliable.
Second, when conveying prognosis, we have to be good communicators, and to find out what patients want to know, when and how they want to know it. We also need to be collegial and respectful of our Oncology (or other specialty colleagues).
When there is a big discrepancy, it could be either a) the oncologist truly was over-optimistic, and gave a number like “1-2 years” when it was more few months; or b) the oncologist was vague and patient had to interpret and got the wrong picture. The latter happens quite a lot because of discomfort in delivering bad news, so oncologists commonly say “less than a year” even when they are thinking “1 or 2 months”. They haven’t lied, but when patients hear “less than a year” they interpret as “one year”.
When I am discussing prognosis with patients and families, I always ask about how much they wish to know, and I always give them the rationale for my prognosis. For example, I might say “When patients with advanced cancer start having poor appetite, losing weight and get more tired, it tells us that the body is changing and things may be happening faster than we thought. In fact, once these changes start, we may be looking at short time left, usually a few months”. The impact of saying this is that patients and families can observe these changes, and now I am telling them what these changes mean.
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