A campaign’s video, which shows a patient dying and suffering badly in a hospice, has created quite a storm of opinion on social media.
Professor Lukas Radbruch, President of the German Association for Palliative Medicine (Deutsche Gesellschaft für Palliativmedizin, DGP) and a founding member of the European Association for Palliative Care (EAPC) social media team, explains more and affirms the EAPC’s position on euthanasia.
Professor Lukas Radbruch.
I am shocked.
I have just been watching a short video clip on the ‘Dignity in Dying’ Twitter site (https://twitter.com/dignityindying). It shows a mom telling her son about granddad, and explaining how he died in a hospice. In contrast to the soothing words she uses, the pictures show an old man fighting for breath, thrashing around in bed and obviously suffering badly. The video ends with a statement that 17 people will suffer while they die each day.
The report of Dignity in Dying explains this in more detail. However, I found these explanations difficult to follow, as the suffering described in the report includes refractory physical symptoms,such as unrelieved pain or vomiting faeces with gastrointestinal obstruction, as well as existential distress, fear of losing autonomy or being a burden onothers. Similarly, sedation as a side effect of opioid medications is described as unbearable suffering for some patients, who want to have a clear mind until the very end. And again and again the report (like the video) describes that hospice and palliative care will prevent suffering for many patients, but not for all, and that palliative care thus needs to be supplemented with legislation on assisted dying.
I find this very challenging (to put it mildly). Not the idea that palliative care cannot relieve all suffering– I think everybody working in this field has met patients who did not get enough relief, or not quick enough, or suffered from the loss of control even if all physical symptoms had been alleviated. Some of my patients have to balance effect and side effects, for example with pain management. They will be in pain with physical activity, even though pain relief is good when they are in bed; but with an increase in the opioid dosage until they can move around without pain, they are falling asleep once they lie down. Some of these patients select the higher dosage (less pain with activity, but drowsy in bed), others select lower dosages (reduced activity, but a clearer mind).
But this has never triggered me to suggest assisted dying to these patients. If patients find their situation and the bleak prognosis of what is to come too unbearable, we can offer palliative sedation, withdrawing life-sustaining therapies, among other options.
EAPC white paper on euthanasia and physician-assisted suicide
A few years ago, I had the honour to chair the consensus process of the European Association for Palliative Care (EAPC) on the white paper on euthanasia and physician-assisted suicide .1 We found a broad consensus in the palliative care community in Europe that assisted dying should not be part of palliative care. We do have to acknowledge that some patients will have a wish for hastened death, and we have to take these wishes seriously, but let’s make them the starting point of holistic care, beginning with comprehensive assessment and communication and try to understand the motivation and attitude behind the patient’s wish. Wishing for hastened death is often a cry for help rather than a call for action!
The EAPC white paper states clearly that the EAPC does respect individual choices for euthanasia and physician-assisted suicide but stresses the importance of refocusing attention on the responsibility of all societies to provide care for their older, dying and vulnerable citizens. This is why it seems particularly aggravating that Dignity in Dying so often mentions inadequate palliative care in their report, and calls for legislation allowing assisted dying as a supplement of palliative care.
From a philosophical point of view, I find it particularly challenging that the report mixes all kinds of suffering, and summarises it all in a binary way: you are either suffering or you are not. If you are suffering, you probably would prefer assisted suicide or euthanasia. This is not what we experience in everyday palliative care. Patients may be suffering, but not all the time. They might ask for hastened death, but are enjoying life at the same time. They are sad or even devastated about the impending end of life, but enjoy being with their loved ones right now.
The quest to opt out of all suffering by offering assisted death, probably even before suffering starts, does negate all this. If all suffering is to be prevented, a lot of life and love will also be lost.
The report also fails to mention that in countries with a legislation allowing euthanasia or assisted death, complications with these practices are reported in a significant percentage of patients, for example in up to 16 percent in a Dutch study, often resulting in prolonged dying and suffering related to these procedures. 2
The Dignity in Dying video starts with a statement from Dame Cicely Saunders: “How people die remains in the memories of those who live on.” This is certainly true, but let us bring this back to the place where it belongs: in the hospices and palliative care services that use their expertise and compassion to provide a good death with dignity for all those who are suffering.
References
- Radbruch L, Leget C, Bahr P, et al. Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliative Med 2016; 30(2): 104-16.
- Groenewoud JH, van der Heide A, Onwuteaka-Philipsen BD, Willems DL, van der Maas PJ, van der Wal G. Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands. N Engl J Med 2000; 342(8): 551-6.
Links
Read more posts about euthanasia and physician-assisted suicide on the EAPC blog.
EAPC members get FREE access to this white paper and many other papers too…
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of ‘Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care’ and many other papers too. Just click here – enter your email address and membership password and choose from the list of journal articles. The German version of this paper is available here.
To join the EAPC, or renew your membership, click here. You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.
Editor’s note: This post is among the Top Ten most-viewed posts for the second half of 2019.
EAPC Blog 
Dear Lukas.
You are very much right. PC is about respect to living, altgough life with diseases could be very demanding or difficult.
Many thanks for sharing that, many thanks for your work ….
Greetings from CR
Ladislav Kabelka
Dear Ladislav,
thank you for your support and for your feedback!
Lukas
Dear Lukas
I don’t understand the video! Did Grandad die peacefully [as his daughter says to the grandson] or did he not? Is the film of the distressed old man genuine or is it acted?
Mystified!
Robert
hi KatherineDo you get these blogs? I contributed one on art therapy last year. This one is very controversial .You’ll understand why when you read it.I.
Sent from Yahoo Mail for iPad
Hi Irene
I am not sure if you meant to add this comment to the blog or to contact your colleague by email? If Katherine is not already signed up to the blog she probably will not see your message so it might be better to send her the link by email. Your post on art therapy has been so well viewed – perhaps it’s time to contribute again! Best wishes, Avril.
I am shocked. That the President of the German Association of Palliative Medicine seeks to diminish the suffering of dying people with, what are at best, red herrings. He conveniently side steps the core issue: that a small percentage of dying people suffer unbearably at the end of their life, in spite of excellent palliative care. And he says nothing about what we, in palliative care, should be doing to address this.
Assisted dying is NOT euthanasia. It is a considered response by a mentally competent, terminally ill adult to suffering THEY find unbearable – this suffering cannot be defined by others and certainly not their health care professionals.
All dying people deserve the best palliative care and those who still find their suffering unbearable should be offered a safe, dignified, legal way out while still receiving supportive palliative care until their death.
I understand that this is a very emotional topic, and I feel very strongly about this myself. But this is not at all about diminishing the suffering, but rather how to respond. I can just repeat:
“We do have to acknowledge that some patients will have a wish for hastened death, and we have to take these wishes seriously, but let’s make them the starting point of holistic care, beginning with comprehensive assessment and communication and try to understand the motivation and attitude behind the patient’s wish. Wishing for hastened death is often a cry for help rather than a call for action!
The EAPC white paper states clearly that the EAPC does respect individual choices for euthanasia and physician-assisted suicide but stresses the importance of refocusing attention on the responsibility of all societies to provide care for their older, dying and vulnerable citizens.”
As head of two palliative care services, with inpatient and home care, we see quite a lot of patients each year. I did meet very, very few patients suffering severely, and with the team at their wits end how to relieve it. However, even for those patients palliative sedation or withdrawal of life-sustaining therapies would have been an option, but one that the patient had refused.
Let me repeat: this is not about diminishing suffering, but how to respond.
And by the way, I wondered about your concepts of euthanasia and assisted dying. Euthanasia is usually defined as: a physician (or other person) intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request. Assisted dying usually is used as a term covering euthanasia and assisted suicide. In Canada the term “medical aid in dying” is used to include euthanasia and assisted suicide. If your aim is to allow only assisted suicide: most patients in the Netherlands and in Canada (where both options are available) actually prefer euthanasia.
However, it seems that we both agree that it is important to discuss this openly. So thank you for taking the time to read and comment on our blog. We have always wanted the blog to be a platform for a healthy exchange of opinion and debate and I appreciate the opportunity to discuss this with you.