Denton lacks understanding of dying process – a social worker’s perspective

Euthanasia machine, displayed in Science Museum, London

Euthanasia machine, displayed in Science Museum, London

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.

beautiful essay on a doctor’s perspective on end of life care

This really resonated with me… well worth a read.

A young doctor describing her developing perspective on a “good death”; on dying and end of life care in our healthcare system.

http://www.vox.com/2015/10/19/9554583/doctor-good-death

Sonia

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to the 23rd edition of Elsewhere in the Palliverse. I hope you find value in this week’s links about palliative care and research – complete with animal story.

You’re welcome, animal-lovers.

As always, please share your thoughts in the comments.


Brand new blog DocGrief is “a dedicated space for health professionals to reflect and explore our relationship with death and grief, particularly when personally affected by a death in the family.” It was started by a rural GP based in South Australia. Her first post is heartfelt and I am following with interest. Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavoI have a few palliative care links to share this week. If you’re not satisfied, we also share links on our Facebook page and Twitter account (you don’t need your own Twitter account to see what we’re posting), and you can check out our Elsewhere in the Palliverse archives.

At the End of Life Studies blog, Dr Naomi Richards examines the question, “Is the voluntary refusal of food and fluid an alternative to assisted dying“?

Talking About Dying Won’t Kill You, says Palliative Care Australia, writes comedian Jean Kittson (Sydney Morning Herald)

And a palliative care nurse told me that day after day she visited a person dying at home and day after day she walked into a house full of scented candles and rainforest music, until one day she said “Is anyone else sick of these scented candles?” and the family said “Yes”.  “And is anyone else sick of this rainforest music?” And the family said “Yes”. So the nurse said “Well, let’s open some windows, and what music does your mum like? OK, let’s put on some Stones.”

Continue reading

Shifting the focus of care from disease to people – heartfelt article about dying in acute hospitals

This article is going a bit viral on social media. Does it mirror your experiences? It certain does mine, having worked for a long time in consultation services in acute hospitals. There have been a number of comments and letters to the Age supporting the message of the article, written by a senior doctor about the death of his father. http://www.theage.com.au/comment/hospitals-must-shift-focus-of-endoflife-care-from-disease-to-people-20150707-gi6joz

Elsewhere in the Palliverse – weekend reads

Gratuitous holiday snap unrelated to post

Gratuitous holiday snap unrelated to post

I’ll be spending the weekend enjoying the sunshine reminiscing over holiday snaps catching up with tweets from #CancerCongress, #PPCConference, #COSA2014 working on an ethics proposal. If you’re looking for something to do, try this reading list.

Elsewhere in the Palliverse – Weekend Reads (featuring zombies)

Here’s some palliative care and research related links to peruse in the week ahead (most found via Twitter):

ABC News interviews Atul Gawande about “modern medicine’s treatment of dying patients.” Dr Gawande is all over social media and the news, even in Australia (and in Legoland)!

Current and former Chairs of the Australian and New Zealand College of Anaesthetists Mortality Sub-Committee write in The Age about the challenges that not for resuscitation orders can pose for anaesthetists.

The ASCO Post reviews a review article from JAMA Internal Medicine, about end-of-life discussions and advanced care planning. In summary, it’s all good.

In Canada’s Globe & Mail, “End-of-life patients aren’t being heard“.

Geriatrician Louise Aronson writes in The Lancet about ageism in medicine, and ageing as “the human life-cycle’s neglected step-child.”

Presenting at a conference? Improve your presentation with zombie apocalypse principles.

Meanwhile, on October 31st, GeriPal explored the unmet palliative care needs of zombies. And check out the zombie pain scale!

Finally, join the weekly (zombie-free) #hpmglobal tweetchat on Monday (17/11/14 at 11pm AEDT) to discuss an article from BMJ Supportive & Palliative Care about support networks of end-of-life carers. #hpmglobal chat is hosted by Aussie ex-pat Dr Jim Cleary (@jfclearywisc), with participants from several continents. For instruction in how to participate in a tweetchat, see Sonia’s post Twitter 102.

I hope you enjoy these and stay safe from zombies!

 

Elissa

 

legal aspects of end of life care

This helpful MJA article by an Lindy Willmott et al, describes several relevant Supreme Court cases concerning end of life decisions.

It gives us some themes found in the various decisions made:

-Futile medical treatment is not in a patient’s best interests.

-Treatment that is overly burdensome is not in a patient’s best interests, even if the patient is unconscious or unaware of treatment burdens.

-Courts have generally not engaged expressly in quality-of-life assessments, but they remain relevant for determining best interests when considering the patient’s medical condition and prognosis.

-A patient’s wishes and values (gleaned when the patient was competent) are relevant to, but do not determine, his or her best interests. Family members’ views may also be relevant where they are reflecting a patient’s wishes, and perhaps also when reflecting their own wishes, but these views are not conclusive in determining a patient’s best interests.

-The interests of other people and organisations (including the wider health system) are generally not relevant when determining a patient’s best interests.

-Courts have generally deferred to medical practitioners’ opinions about treatment decisions, even when the patient’s family has strongly opposed them.

Have you had any sticky end of life issues recently and crossed paths with our legal brethren?

Sonia

Elsewhere in the Palliverse – reading list

This TED Talk “How Not To Be Ignorant About the World” by Dr Hans Rosling (@HansRosling – Swedish medical doctor, statistician and Professor of International Health) and his son Ola Rosling is an entertaining and eye-opening look at how our biases and intuition lead to misconceptions. (For the record, I vote like a Swede – not a chimp.)

The beautiful poem Japanese Maple by the Clive James (written while he is dying) has been all over my social media feeds this week. Here’s The Guardian‘s take on why it’s resonating with people.

Bioethicist Ezekiel Emanuel writes in the Atlantic on Why I Hope to Die at 75. And here’s a rebuttal from Alex Smith at GeriPal.

Making a case for the integration of palliative care in policies on ageing and dementia – a European perspective (EAPC Blog)

More on dementia – Ageism and death anxiety (ehospice UK)

In Australia: Call for a Royal Commission into Nursing Home Care (ABC Radio National)

And a more positive look at residential aged care: A Nursing Home Can Be a New Beginning (Adele Horin)

An interview with the Groundswell Project (Dying Wishes – Australian Ageing Agenda)

The NHS (UK) has an End of Life Guidance app! (iTunes store)

The Institute of Medicine (US) released a report entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” There’s been a lot of discussion about it on palliative care social media and the mainstream media over the past week. Pallimed has a nice summary.

Terminally ill, but constantly hospitalised. (NPR)

Many Palliverse readers would be able to relate to this – The reality of nurses completing their own research (EAPC Blog)

If you haven’t already, consider signing the Montreal Declaration for palliative care (AHPCA Blog)

Also consider crowdfunding Little Stars, a movie about paediatric palliative care.

 

 

Diabetes management at the end of life

Diabetes management in palliative care is often tricky. Trying to optimise quality of life, and finding a balance between the burden of diabetes treatment (such as checking blood sugars, diabetic diet and medication side effects) and the sequelae of uncontrolled blood sugars (like unpleasant symptoms and infections) is difficult. As a patient’s weight, diet, metabolism and organ function change, the risk of hypoglycaemia (low blood sugar) increases. Adding further difficulty is that patients with chronic diabetes have often spent years being told that they need to keep strict control of their blood sugars, in order to avoid the awful long-term consequences of poorly-controlled diabetes. It can be difficult to convince patients, their families and carers blood sugar control can be relaxed in the palliative care setting. Continue reading