Engaging with uncomfortable dialogue – Demystifying palliative care

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Like many of you I was glued to Q&A last night.  The topic was “Facing Death”
and the discussion pivoted around the panel’s view around the right or otherwise of Australians to have access to euthanasia.

Needless to say the twittersphere was running hot,  but clear to a number of commentators was that many were poorly informed about the topics at hand.  From my perspective one of the most concerning issues was a lack of understanding about what palliative care is and assumptions that it is on some level the same as euthanasia.

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Clear issues were expressed assumptions among the community that palliative care is akin to slow euthanasia, and that it commonly overdoses people with medications. Despite this there was also a counter-intuitive view that palliative care is also largely ineffective or at least fails to provide care to a large number of people.

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Clinician’s perspectives, such as @dr_ashwitt‘s were responded to with some derision, seemingly viewed as negating the tragic experiences of others.  Andrew Denton’s closing message that doctor’s need to start listening to their patients and the community can be seen in counterpoint with a community response suggesting waning trust in the experience of healthcare clinicians in this area.

Other views suggesting a need for euthanasia also demonstrated significant misunderstandings of palliative care.  Two examples including that euthanasia is required due to the cost to the individual for palliative care, and that palliative care clinicians may want to prolong life (deny euthanasia) to increase their revenues highlight the limited knowledge about how palliative care is provided as a publicly funded service in Australia.

The debate about euthanasia and physician assisted suicide has been broadly met with discomfort and resistance by many palliative care specialists in Australia.  Regardless of where we find ourselves as individuals within this debate my personal reflection is that the debate itself provides the major current opportunity for those who work in palliative care to be able to engage with the community and explain what palliative care actually is.  Additionally, it provides an unfortunate insight into our incomplete success in demystifying palliative care for our community.  As demonstrated last night, this is something people want to talk about, and the conversation informed or otherwise will happen regardless of whether we contribute.  Personally I would agree with Richard Chye’s approach as voiced in his article published today that a main thrust of the contribution from palliative care clinicians into this discussion needs to be a focus on the priority of improving access to quality palliative care for all people in this country.  This view will not be accepted without a shared community understanding of what palliative care is, and what it is not.  Perhaps then for all of us working in palliative care engagement in the current debate on the practice of euthanasia through improving the understanding of palliative care can be seen as not just an opportunity but a responsibility.

If following from Q&A, from tonight’s Insight program or from this piece you have thoughts about how those working in palliative care should engage with these discussions please feel free to comment below.

@mchapmanonline

9 thoughts on “Engaging with uncomfortable dialogue – Demystifying palliative care”

  2. Thanks for the comment and the link Molly. I saw your piece after publishing this one and would have liked to have included it. Congratulations on great article. As you say the current focus on one part of a much bigger conversation about death and dying is not without its frustrations.

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  3. Patient here. After another horrific (and failed) chemotherapy course, through exhausted tears, I asked my oncologist “What about palliative care?”. The reply, loudly and harshly, full of derision: “What, do you think you are just going to drift of peacefully into eternity?!”

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    • Thank you so much for sharing, Anne. I’m sorry to hear that happened to you. So many health professionals don’t realise that palliative care and other treatments (including chemotherapy) can go hand-in-hand. And that palliative care is not all about people “drifting off peacefully” but about living well until the end.

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    • Hi Anne. I’m sorry that you had to experience that unpleasantness, when you were already feeling unwell. Thank you for sharing with us. Unfortunately, you are likely not alone in what you experienced. That’s why Palliverse exists in order to highlight such issues and to try to change people’s attitudes to a very important part of healthcare – end of life care. Take care Anne.

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  4. Thanks Anne. The ‘patient’ experience is such an important narrative that needs to be heard, acknowledged and respected – not ridiculed. Some health professionals – whilst full of technical knowledge – can lack human insight, and may well forget that they too will be a ‘patient’ at some point. An oncologist may be expert in cancer treatment, but only you are expert at living your life in a way that is meaningful. Thank you once again for sharing – your voice needs to be heard!

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  5. Thanks for your thoughts, Michael. They largely reflect my views following the Q&A episode and ensuing media (and social media) discussion. My personal view is that the palliative care community’s role is to advocate for better, equitable access to palliative care for everyone who needs it. Voluntary euthanasia/physician assisted suicide is a divisive and distracting issue within the palliative care community. We need to get on with the job of providing excellent palliative care and educating the community and other health professionals about what it is we actually do!

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