Here is the full transcript of Ken Hillman’s talk titled “We’re Doing Dying All Wrong” at TEDxSydney conference.
In this TEDx talk, Ken Hillman, a Professor of Intensive Care at the University of New South Wales, delves into the transformation of the dying process, particularly for the elderly, highlighting a shift from home and comfort-based end-of-life care to a highly medicalized approach in hospitals.
Through personal narratives, including the contrasting experiences of his grandfather’s and mother’s deaths, Hillman critiques the over-reliance on technology and intensive care for the elderly, emphasizing the loss of dignity and personal choice. He points out the medical community’s difficulty in recognizing and discussing end-of-life issues, proposing the need for better tools like the “crystal tool” to predict life expectancy more accurately.
Hillman advocates for honest conversations about dying, empowering patients and their families with choices about end-of-life care. He stresses that the majority of people prefer dying at home, yet the reality often involves dying in hospitals, indicating a significant mismatch between patient desires and healthcare practices. The solution, he suggests, lies in community support and the reintegration of family doctors into end-of-life care, moving away from hospital-centric models.
Hillman’s talk is a call to redefine dying, focusing on comfort, dignity, and personal preference, rather than an impersonal, technologically driven process.
Listen to the audio version here:
TRANSCRIPT:
This is a picture of my grandfather and myself in the mid-1950s, walking around Sydney. A few years later, in about 1959, my grandfather died very comfortably at home under the care of his general practitioner. This is a talk about death and dying, and it’s too late to leave as the doors are locked. But it’s about death and dying only in the very elderly, naturally and normally coming to the end of their life.
So, why was it that my grandfather was allowed to die at home quite comfortably, but my mother, 25 years later, had a very different story, which I’ll come to?
One of the reasons was that, at that time, in the general practitioner’s bag, there wasn’t much more or less than what you found in hospitals. This isn’t all that long ago.
So, hospitals were where you went if you were sort of sick, but if you were poor as well, and you sat in your bed being very carefully nursed, and sometimes you got better, and sometimes you didn’t. You can see this in films at the time, where if anyone gets injured in the street, someone shot or stabbed, then there’s a bystander who shouts, “Quickly, call a doctor!” A few years later, the bystander says, “Quickly, call an ambulance!”
So, what was it in hospitals that was changing? It was about the early 1960s, and there was an explosion of technology, marvelous ways that we could image every single part of the body, complex surgery. We divided the body into “-ologies” – neurology, cardiology, gastroenterology, etc. – and the surgeons also divided the body up into different parts that they worked on and gave themselves different names.
Intensive Care
And then, of course, there was intensive care. And 25 years after my grandfather died, I became an intensive care specialist in a large London teaching hospital. I thought I could keep people alive forever. These were the early days of intensive care. I thought it was infinite, what we could be doing. And in many ways, in some ways, it is. If I had a relatively normal brain and a liver, I could keep everything else going. At that time, I had six intensive care beds.
I now work in an intensive care unit where there are 40 intensive care beds. It costs 4000 Australian dollars per patient per day. But it’s not only the number of beds that have changed, it’s also the type of patients that we’re treating now in intensive care. Many of them are over the age of 60, many of them in their 80s and 90s, and many of those are in the last few days or weeks of life.
Conveyor Belt
So, how did this happen? Well, it’s sort of like a conveyor belt. With my grandfather, he got sick in the community, it was expected that he got treated and managed at home. If you get sick in the community these days, we almost always call an ambulance. It’s very frightening to have someone become very sick. The ambulance takes you to the nearest emergency department. Emergency departments are highly stressed. They resuscitate you, they package you, and they get you ready for admission to the hospital.
And then you become even sicker in the hospital. And here I am, at the end of the conveyor belt, in the intensive care unit, waiting for you. This is a picture of my mother and my brothers and sisters. It wasn’t the same as my grandfather, for my mother. The last six months of her life, she was admitted 22 times to acute hospitals. She wasn’t told what exactly was wrong with her. People didn’t tell her that as you get older, things start to deteriorate, and you become sicker. She wasn’t given any choice about this.
It was simply that she got sick, and she got put on this conveyor belt, admitted to hospital. I had to be a son in those situations, not a doctor, so I didn’t interfere with any of those decisions until finally a very special doctor sat us all down and said, “Your mother is old, and she’s dying, and we should let her go in peace.” That was such a relief for all of us, and of course, it was a relief for my mother. And so, approximately 48 hours after that, my mother passed very comfortably away.
Old Age
What did my mother die of? Well, when I was an intern, we were allowed to write down “old age,” but we’re not allowed to do that anymore. We have to make up a medical term. So, for example, everyone that dies, their heart stops, so we write down “cardiovascular disease.” Cardiovascular disease is the most common way of dying in our community.
What was really troubling for me was that my mother kept asking me, “What is wrong with me, Ken? If only they’d find out what was wrong with me, then we could do something about it.” This is very difficult to explain because when you get old, you get sick, and it’s very difficult to put your finger on exactly what’s happening.
And also, medicine is based on the diagnosis. That’s what we learn about for six years: the diagnosis. A single diagnosis. Hospitals are wonderful places if you have a single problem that can be fixed.
Frail
However, when you become old, the combination of all the so-called chronic diseases or comorbidities – whatever the medicalized word is – add up to something that, as yet, we haven’t got a name or a number for. I like this word: frailty. Because it comes at it from the patient’s point of view. It’s not a series of medicalized terms, it’s frailty. And I’m sure many of you in the audience have experienced people that are older, and you know what happens as you get frail, as you get more frail.
And I particularly like this frailty score because it’s got nice pictures. So you start off at number one, you are very fit in your sixties, seventies, and then you gradually get more and more frail, more and more vulnerable. Until you find it very difficult to get around, until you become even more vulnerable. Then you are confined to a wheelchair, and finally, you haven’t got the strength to get out of bed. Despite all the specialties and all the drugs and all the marvelous things we can do in medicine, age-related frailty is not curable.
So, TED Talks are not only about the problem, they are also about the solution, and what I’d like to talk to you about is what we are trying to do about it in my own hospital. It’s not really about high technology or IT or anything like that. It’s not fancy stuff. But I’m very fortunate to work in an organization that has a culture of looking at things in a different way, putting the patient in the center, rubbing all the other things out, and thinking, well, how can we do this in a better way.
Crystal Tool
So, believe it or not, doctors in hospitals find it very, very difficult to recognize people at the end of life. I know that sounds very hard to believe. So we are working on a tool that gives us some idea about people that have got months or perhaps a year to live. It’s called the crystal tool. It’s very simple, can be used by people at the bedside. It’s just a combination of things that are logical, like age and the frailty score and things like that.
Now, with everything that we do in medicine, there’s uncertainty. Uncertainty is inherent in medicine. So take, for example, a 20-year-old person with a terminal brain tumor – we do all the tests, and we find that it’s terminal. The first thing we do – well, the first thing the person wants to know is, “How long I’ve got to live?”
So just using all the data we’ve got of everyone with that particular tumor, we can say, “Well, maybe a year. It could be six months. It could be two years. Maybe, in exceptional circumstances, it may be three years, but the disease is terminal, and we can’t do much about it.”
And it’s the same thing with the elderly. Some score like this will at least enable us to move to the next stage. And the next stage is not rocket science either. But believe it or not, doctors are very uncomfortable talking to elderly people about dying. I’m not too sure why that is. So the next step after we recognize these people is to begin a discussion in an honest and empathetic way.
The Next Stage
The next step after that is also logical, but believe it or not, this doesn’t occur either. It’s to empower the patients and their carers with choices. So you’d be honest about where we think they are in life, how long they’ve got to live, and how they would like to live that life. Maybe they’d like to keep coming in and out of hospital, maybe they’d like the most aggressive treatment available. But at least, it would be based on proper data and a proper way to make a decision.
However, many people, we’ve found, don’t want to keep coming in and out of hospital once they know they haven’t got terribly long to live. In fact, about 70% of people, in this country, in America, and the United Kingdom, when asked, would rather die at home. Now, this contrasts with, about 70% of you will die in acute institutions, in hospitals. So there’s a discrepancy here, which sort of reinforces the fact that we are not talking to people about this in the proper fashion.
Long Term Solutions
The long-term solutions are not in hospitals. The long-term solutions are things like putting the family doctor more in the center of care; advance care directives, you need to be thinking about this while you’re able to, talking with your loved ones and writing it down.
But then we also need to move resources and support people if they are going to die at home, so that they are looked after, so that they’ve got respite care. I’d like to be controversial here and say that I don’t believe the last few months or year of life in a very elderly person is a medical challenge. Maybe if they’ve got pain, or they are uncomfortable – sure. But most of it is about community support: facilitating the carers, making sure their house is clean, making sure they’ve got food, making sure they’re washed, and all of those sorts of things. This is not so much a health or medical problem.
Dying in the Elderly
So, dying in the elderly has been hijacked. Patients are divided into individual organs, and we try to fine-tune and make these individual organs better. A little bit like birthing was in the ’50s or ’60s, which was also hijacked. Women in labor were taken to hospital, strung up, legs apart, baby taken out, baby put in with all the other babies, fathers not allowed to be with their wives, fathers not even allowed to hold the baby. This was the normal way that we conducted birthing in the ’50s and ’60s. That’s similar to what’s happening with the elderly at the moment.
So, this is where many of you will die: surrounded by high technology, cared for by well-meaning people with a lot of expertise in their own particular area. It’s also that we hear about medical miracles almost on a daily basis, and that’s exciting. But we hear about what health can do, what modern medicine can do, but we don’t hear very much about what modern medicine can’t do. We need to be far more honest with our community about the limitations of modern medicine.
There’s rarely a day goes by when I do my ward rounds with colleagues that one of us doesn’t say, “Please, don’t ever let this happen to me!” So, this is one of the most important decisions in your life. You need to take control over your own end of life. Thank you very much.