There has been much discussion about physician assisted death in the Australian media in recent weeks. Most of the voices have belonged to doctors (eg this one, this one, this one or this one) or Andrew Denton, with little airtime given to people with life-limiting illness, their family members, bereaved carers, or other professionals who care for the dying. We are sharing an opinion from an invaluable member of the palliative care interdisciplinary team, the social worker.
Below, palliative care Social Worker Zoe Mitchell responds to Andrew Denton’s recent article in The Age (“Doctors shouldn’t look away when dying patients are suffering“). Denton claims that according to palliative care philosophy, “while it is ethically unacceptable for a patient to choose a death that is quick and painless, it is ethically acceptable for them to choose a slow, painful death by dehydration and starvation.”
Zoe says, “I had so much respect for Andrew Denton until now. His article is full of false information about palliative care and shows a lack of understanding of the dying process.
I am no doctor, but I have spent over 4 years working with people who were dying, and while to us it may feel like we are ‘starving’ someone…we are not. When someone is dying and the body begins to shut down, it does not need food or fluids. If we force feed someone it can cause more discomfort and possible nausea and vomiting. If we force fluids into someone and their kidneys are shutting down, it just adds to their fluid overload – again causing discomfort, with fluid in the lungs and swollen limbs. Instead of forcing fluids and food on people with no appetite or thirst, we should be providing quality mouth care to ensure they do not have a dry or sore mouth.
The focus needs to be on good care, this is why we have palliative care. To provide holistic support to the dying person, the important people in their lives and the medical teams looking after them, but also to educate them on what a “good death” can look like.
Before we can even discuss the debate of voluntary euthanasia we need to bring the conversation back to how we can support people to not just die well, but live well until death. In order to do this we need more funding and resources to ensure good palliative care is accessible no matter where you live or your socioeconomic status.”
What are your views about Denton’s article, and nutrition and hydration at end of life? Regardless of your personal views on physician-assisted death, do you think he offers a fair depiction of palliative care? Please share below.
Many thanks to Zoe for contributing to the discussion.
Thanks for sharing Zoe’s experience & reflections, Elissa.
I strongly agree with many of the points Andrew made during his speech at the Di Gribble Argument and also in this article. These include his thought of “Surely we can do better than this?” in response to stories of unbearable suffering at the end of life; that doctors must not look away when dying patients (or any patients really) are suffering; that “Death is complicated”; and the fact that despite optimal palliative care, refractory suffering exists.
I also strongly disagree with many of the points Andrew made. I believe he may have reached these beliefs due to an incomplete understanding of palliative care. As he repeatedly acknowledged during in his speech and on Q&A, he is not a clinician and has only spent eight months actively examining how people live and die at the end of their lives. The points I disagree with include his belief that “for many people who are dying, their suffering will only end with their death, because the pain is beyond treatment’; that by not killing a patient (either directly or indirectly), somehow a doctor or a nurse is asking them to suffer more.
Doctors must do better and not turn away from suffering at the end of life. In my experience, the majority of suffering at the end of life is due to a lack of palliative care, not despite palliative care. This is due to a variety of reasons, including the lack of training in and understanding about palliative care at medical school and during vocational training. This is also the case for nurses and other clinicians caring for people at the end of life.
Death is complicated. So is living at the end of life. Most deaths in Australia are predictable. This means most people live through an end of life period or “dying” phase of their life. Choices are limited during this time – not only about when and how we die, but also how we live. Should I try to go home again after my third admission in two months for falling over at home, knowing that this will affect my son’s career as he needs to stay at home to “keep an eye on me” as recommended by the physiotherapist, otherwise I will probably fall over again and be back in hospital next month? Do I sell my house and move into a nursing home where I will be cared for, even though this means my son will need to find his own place to live, which means he will need to get a second job in order to pay for this, and so I will probably see him less over the remainder of my life? Or do I ask my doctor for Nembutal because this decision is causing me significant psychological suffering, so I end this suffering, avoid moving into a nursing home, leave my house to my son, who can then get on with his career? And as Karen Hitchcock raised during Q&A, as a doctor, as a clinical team, and as a society, do I/we try to help this person by helping her with her housing and care, or do we help her kill herself?
The fact that refractory suffering exists despite palliative care is not a surprise to most of us caring for those at the end of life. What may be a surprise to Andrew is that, although Australia has an excellent palliative care system compared to the rest of the world, most Australians suffer at the end of life because they are receiving less than optimal palliative care, or none at all, and not because their suffering is refractory to treatment. Their suffering will be relieved when they are receive optimal palliative care. Most of these individuals will then be able to live well until they die. Hastening death is not the only or even the best option to relieving most people’s suffering at the end of life.
In his article, Andrew follows a paragraph about Palliative Care Australia urging people to support “access to to high quality care as they face their final days” with an observation: “Not a word about those people dying in pain and begging for help”. If you listen carefully, Andrew, you’ll find that Palliative Care Australia’s words ARE about helping people dying in pain and begging for help. Improve access to high quality palliative care is the best way to help most Australians dying in pain and begging for help. Improving access to a hastened death through drugs (whether administered by the doctor or prescribed by the doctor and administered by the patient) will not help most Australians.
I’d like to stress again that the relief of suffering at the end of life must remain our goal. Death should not be our goal. Death can be a tool. But surely it’s not the only tool or even the best tool? As a person, I’m not neither against nor for hastening death in this setting. I am for palliative care. As a doctor, I have never needed to hasten someone’s death to relieve their suffering, and I hope I will never have to. If I do come across someone tomorrow with refractory suffering despite optimal palliative care, I know this is happening not because I’m asking my patient to suffer more, but because suffering exists, I wish it did not, I will not turn away, but stay with them and keep trying.
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Thanks Zoe, and Elissa for sharing this. I was also distressed at these assumptions in Denton’s piece in the age.
As you point out diminished interest and ability to eat and drink in the last days and weeks of life is an entirely normal process associated with the way our bodies shut down as we approach death. Accepted evidence based practice in Australia is that to artificially fight this natural process does more harm to the person by increasing their suffering, but does not make them better or extend their life. Describing this in terms of it being a morally suspect act to bring about dying in a way which extends suffering is a harmful error. There have been and continue to be cases of people wishing to end their life by withholding food and fluids, and as has been commented this is not considered illegal as is euthanasia, however associating this act with the natural and essentially universal change in body processes as we approach death is wrong. This lends fuel to the increasingly common perspective in this debate that the normal and natural process of dying is in some way the wrong way to die.
I understand that euthanasia advocates feel the need to influence peoples perspectives with impassioned arguments however promulgating these sorts of misunderstandings are potentially doing real harm to how we view death and dying as a society. If those pushing for euthanasia are suggesting that the adoption of this policy is an evolutionary cultural step, distancing ourselves from understanding the natural reality of death and dying seems an unfortunate price to pay.
Yet again thanks for the contribution to the discussion.
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Yes, I do like your comments, particularly that it is becoming accepted as a evolutionary cultural step to have the option to terminate ones life.
Great points made in the article and also by the two commenters above. I just wanted to add that I didn’t think Denton was talking about that stage in which the body requires less food and fluid; I think he’s talking about people choosing to end their suffering by refusing food and drink in order to starve themselves to death, and this is one situation in which voluntary euthanasia would save the patient and their family great anguish and a potentially protracted period of heightened emotional distress. I’ve seen this happen recently within my own family and others’, and I think it’s dreadful.
I believe very much that palliative care has a great and respected place in our community, and the arguments around assisted dying (and advance care planning, elder care and disability care) should take place alongside this – not as a competing issue or a substitute solution for those in need. In fact, if there’s anything alarming about this debate, it’s that all these camps have come out somewhat in opposition to, or competition with, one another; I’d much rather see a holistic, sensible discussion about what care and options are available to us at the end of our lives in Australia, and how we can adequately consider and resource these – so that if we do choose to end suffering through a deliberate death, it’s because we’ve lived as well as we can with the best treatment available, and we’re making a choice based on that.
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Thanks for your comment Jacinta, and I am sorry to hear about your own recent experience of such a difficult situation.
I do agree with your point that Denton is likely talking about the tragic situation where people do abstain from eating and drinking to end their own lives, though his language in the Age article makes that difficult to be sure of. I can completely see why euthanasia is discussed as a valid alternative to this, but I think we do need to be careful about confusing this specific situation with the process of normal dying. In an attempt to raise a valid point about the care need for people who feel that they wish their life to end, adding to fears about normal dying would be a step backwards.
Unfortunately as you make clear the sectarian nature of this debate has meant that all “sides” of the conversation have resorted to fear raising arguments that are ultimately unhelpful. Whether that was Denton’s intent here or not is a largely moot point. However, providing those who are unaware of the normal decrease in eating and drinking approaching dying with that information is I think still important as this will be the experience of most people when we die, regardless of the legal status of euthanasia in Australia.
I completely agree with you that holistic and sensible discussion about what as a community we can and will do for people with advanced and life-limiting illness is what is required, and hopefully what is increasingly taking place. I thank you for so clearly being a part of that balanced dialogue through your comment.
If you have any interest in contributing to this dialogue through a post on this website then please feel free to contact myself or another member of our team to discuss that further.
Thanks for highlighting these issues Jacinta. You are absolutely right – we must focus on what all these camps / stakeholders share, which is our compassion for those suffering and our desire to relieve it; move beyond uncompromising opposition or wasteful competition; and help Australians live and die as well as possible!
Thank you for sharing, Jacinta. I am sorry to hear about your experience with family members. I am also concerned about the apparent pitting of “palliative care” against “assisted dying” – I think neither group benefits from this approach, and indeed the two groups are not mutually exclusive. I personally feel that it is not my role as a palliative care professional to argue for or against assisted dying, but to continue advocating for better, equitable access to palliative care (not just specialist palliative care, but generalist palliative care for anyone who needs it) and educating other health professionals and the public about what “palliative care” means and what we do.
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what an excellent post. as someone who is facing these decisions, likely in the next few years, i completely agree that rarely does this dialogue include our perspective. i am 31 with stage IV rectal cancer, and have inoperable lung mets, and possibly inoperable liver ones too. i speak openly and candidly with my doctors, who are incredibly supportive, about what is likely to kill me, and how, because i want to be able to make plans. knowing that it is liver failure that’ll most likely take me out, i’ve discussed how exactly people die of liver failure. i am very lucky to have a psychiatrist who specialises in oncology and palliative care – and to be treated at a hospital with an active palliative care unit. my doctors from diagnosis have discussed with me my long term options – that i can actively take a part in my care by deciding at any point if i choose to have aggressive treatment or less aggressive treatment, and what the benefits of these are. they encourage breaks, and time off, and holidays – they emphasise quality over quantity, and the importance of living a good life, and, well, preparing for as good a death as someone in their 30’s can have.
during my first hospitalisation, the patient next to me was an elderly woman with advanced bone cancer. we spoke a little about her life, and the wonderful things she and her husband and children had done. and one day, the palliative care team visited her, and discussed how far she wanted treatment to go. it was illuminating if confronting to me to hear this.
i’d just love to hear more from other people facing these calls, and particularly young folk – who are particularly invisible when discussing palliative care and end of life decisions. i think a lot of people don’t want to accept or acknowledge the reality that young people are also receiving palliative care, and that the process of living and dying and choosing how to differs from age group to age group.
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Thank you so much for your comment Elizabeth. I just realised that you write “sky between branches” and feel a bit star struck! (And also feeling guilty that I haven’t left any comments.)
I am glad to hear that you have supportive doctors and feel can speak openly with them.
I would also love to hear more in the public forum from your perspective and from other people facing these decisions. As a doctor, I find it really valuable to read blogs (and twitter accounts) from people living with illness, as it removes the “doctor-patient” dynamic when trying to better understand their lived experience.
If you would ever like to share your perspective on this platform (Palliverse) – please let us know. We would be delighted.
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Oh definitely! i’ve been wanting to write about being young and terminally ill for ages now — and interestingly have had less interest in it than most anything else i write about, curiously enough. if you’re interested, you can email me at sky DOT between DOT branches AT gmail et al.
i’m so glad you enjoy the blog!!!
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Wow, thank you all for this discussion!
I don’t have anything valuable to add in the way of discussing the palliative care/euthanasia pros and cons. My perspective is from the disability activism side of the fence, and how assisted suicide could well be a “slippery slope” for people with disability who do not necessarily have a terminal illness.
I’ve written an open letter blog post to Andrew that basically gives him the benefit of the doubt in terms of end-of-life support (his eight months research on the topic is eight months more than I have), but calls him out on his declaration that people with a disability are, if anything, better off when euthanasia is regulated by law.
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Thank you for sharing your perspective Katy. Not to take away from Denton’s research but I find it funny that people ooh and aah about “8 months of research”, when even the most junior palliative care specialist in Australia has at least 3 years of advanced palliative care training and at least 7 years as a doctor (most a lot longer) post medical school.