“If, until now, our future doctors have not been equipped with the right language to navigate death, what hope has there been for the rest of us?” said Ray Martin, host of The Last Goodbye.
In the first episode of this SBS series, he reminded us that only 1 in 5 people have spoken to their families about their funeral plans. (Hence the reason I wrote The Bottom Drawer Book: the after death action plan.)
Surprisingly and worryingly, healthcare professionals are in that cohort. And because 80 per cent of us will die in a hospital or nursing home, that’s a huge concern.
Two years ago, I sat in a lecture with Dr. Jenny Schwarz who was, at the time, a geriatrician at the Melbourne Medical School.
“Death is considered a failure throughout medicine,” she said.
“I ran a communication skills programme for the trainees in geriatric medicine. A lot of the trainees have patients who die. And these doctors cannot say dead. We run whole sessions to try and get them comfortable with the word.”
Hard to believe, isnt it?
Dr Schwarz was a student at the University of Melbourne and since then has been involved on and off with medical education at the uni for about 40 years. She’s trained in palliative care and has worked in palliative care.
“Not saying the ‘D word’ actually gets reinforced throughout their medical career and working in hospitals.“
“You do not say dead, you do not talk dying. It’s literally taboo,” Dr Schwarz said.
The medicalisation of death
Societies overwhelmingly prioritise avoiding death, rather than reducing unnecessary suffering.
Changing times mean that medicine has become very sub-specialised. That is, a patient could have a doctor who is looking after their kidneys, another doctor looking after their heart, and another looking after their liver. And then there’s the patient’s GP who is trying to make sense of it all.
Dr Shwarz calls it ‘fragmented care’, while its official terminology these days is the biopsychosocial model.
“I was taught holistic medicine. I remember doing walk-arounds when I was in medical school. We would get a chair and we would sit around the patient, and we would talk to them with a consultant for an hour. Now I’m lucky to get five minutes. We have become more medicalised,” she said.
That fragmented care includes the care of death.
“Palliative care is about care of death. But I don’t want the person who is looking after me when I’m dying to have only met me for the last weeks and months of my life, rather than someone who’s known me for years.”
But death doesn’t just happen to old people. And that’s why all doctors need to learn the best way to interact and communicate with patients and their families. An obstetrician will need to have a delicate conversation about a baby’s poor prognosis, for example.
Here in lies the challenge. Where do doctors get the support and learn the communication techniques they need to have those conversations?
The challenge of end-of-life education
Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths.
“I really question the relevance of our curriculum to current medical practice.”
Dr Shwarz admits that the curriculum is so full, that there’s little time for comprehensive palliative care studies.
Third-year students at the Melbourne Medical School are offered a special rotation that includes just one week of palliative care.
“They have a full term of women’s health, gynaecology. They have a full term of paediatrics. They have a smaller term of mental health. And then we have a term which is called Aged Care.”
This part of the curriculum is six weeks long and includes the study of aged care, rehabilitation, psychiatry, old age, and palliative care.
As a geriatrician, Dr Shwarz doesn’t think the one week devoted to palliative care is enough.
“I don’t think our course necessarily is teaching the doctors of the future. Now why is that? Why can’t we change it? Who is going to give up their teaching time in an overcrowded curriculum to allow someone to get a little bit of space?”
Sex and death
In 2022, the first year of the revolutionary DEATH elective at Melbourne Uni, 51 of 350 first-year medical students chose the 12-week course known as ‘Lifting the Lid’.
They start with some death fundamentals, then they talk about dying, they talk about the caring profession, the body and after death.
Other electives offered were medical education, aerospace medicine, cancer medicine, translation medicine, sexual health, and rural medicine. Sexual health was the most popular selection, followed by death and dying.
Learning to deliver bad news
Before 2022, students at Melbourne Medical School had no choice in their studies during their medical degree because the curriculum was set in stone.
Now, in an Australian first, students in Melbourne can study a death elective.
This initiative is the first time future doctors are being schooled in all aspects of death and dying. And that includes how to deliver bad news to patients, a skill lacking in hospitals.
Poor death communication skills were evident to musician and lawyer John Thompson. John had been diagnosed with metastatic bowel cancer in his 50s.
The discussion of John’s terminal diagnosis between John, his wife Nicole, and a young hospital registrar was been ‘less than ideal’.
John said, “The thing that struck me about the registrar was that it was coming close to me needing to comfort him. I was a bit shitty about that.
“He delivered the news the wrong way around, and it left both of us really confused,” said Nicole.
(The late John Thompson recorded a series of interviews before he died. He wanted to educate others about living and dying with cancer: read and listen here.)
Concerns and the pushback
As we know, the subject of death and dying can be confronting for many, and despite signing up to study to become a doctor, students aren’t always open to confronting the subject of death.
One part of the curriculum involved asking students to imagine their own death or that of their friends or family. There was pushback from the course design professionals who regarded this first-person thinking as too confronting.
Hannah was also the Academic Advisor for the Last Goodbye.
Discussions in the classroom about the medicalisation of death brought interesting results too.
Cultural anthropologist Dr Hannah Gould was integral to developing the death and dying course offering, and lectures at the university.
“There’s a Lancet report that basically says the medicalised model of death hasn’t worked. It’s delivered all these great things, but overall, it hasn’t improved death outcomes,” Dr Gould said.
(The Lancet article talks about the overemphasis on aggressive treatments to prolong life, inequities in palliative care access, and high end-of-life medical costs leading to people suffering unnecessarily at the end of life.)
It seems that students, who are embarking on a costly decade of medical learning, don’t want to hear that medicine can’t solve everything.
Dr Gould said, “I introduced the idea of a critique of the medicalisation of death to my first-year students. It was not received well. I was surprised that by six weeks (into their first-year studies) they had already really adopted this idea that medicine could solve all things.”
“I have a lot of empathy for students who aren’t able to say the D word. They really want to help people and save people. And the idea that someone dying is them not saving people. It’s hard to unpack for them.
“I say to them that ‘every single patient you see, you’re helping them die better or die later, but they’re all going to die’.
And die they will. And as Ray Martin said as closed the first episode of The Last Goodbye…
“By accepting death as a part of life, it’s easier on the people we love.”
The Bottom Drawer Book: the after death action plan can help with that.
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Additional reading:
Report of the Lancet Commission on the Value of Death: bringing death back into life
Medicalisation and Overdiagnosis: What Society Does to Medicine
Dr. Jenny Schwarz’s comments were made at the Redesigning Death Care Conference, hosted by the University of Melbourne, in late 2022.
