We’re Doing Dying All Wrong | Ken Hillman | TEDxSydney

Translator: Zsófia Herczeg Reviewer: Peter van de Ven This is a photograph of my grandfather and I in the mid-1950s walking through Sydney. A few years later, around 1959, my grandfather died comfortably at home, under the care of his family doctor. This is a talk about death and

dying

, and it's too late to leave and the doors are closed. (Laughter) But it is about death and

dying

only in very old people, who naturally and normally reach the end of their life. So why was my grandfather allowed to die at home comfortably, but for my mother, 25 years later, it was a very different story, which I'll get to later?

One of the reasons was that at that time there was neither more nor less in the general practitioner's bag than what was found in hospitals. This wasn't that long ago. So hospitals were the place you went if you were a little sick, but also if you were poor, and you sat in your bed being cared for very carefully, and sometimes you got better and sometimes you didn't. This can be seen in films of the time, where if someone is injured in the street, someone is shot or stabbed, then a passerby shouts: "Quickly call a doctor!" A few years later, the passerby says, "Quickly call an ambulance!" So what was changing in hospitals?

It was the early 1960s and there was an explosion of technology, wonderful ways we could image every part of the body, complex surgery, we divided the body into "-ologies" (neurology, cardiology, gastroenterology, etc.) . and the surgeons also divided the body into different parts which they worked on and gave themselves different names. And then, of course, there was intensive care. And 25 years after my grandfather died, I became an intensive care specialist at a large teaching hospital in London. And I thought I could keep people alive forever. They were the first days of intensive care. I thought it was endless what we could be

doing

.

And in many ways, in some respects, it is. If you had a relatively normal brain and liver, you could keep everything else going. At that time it had six intensive care beds. I now work in an intensive care unit where there are 40 intensive care beds. 4000 Australian dollars per patient per day. But not only the number of beds has changed, but also the type of patients we now treat in intensive care. Many of them are over 60 years old, many are in their 80s and 90s, and many of them are in the last days or weeks of life.

So how did this happen? Well, it's like a conveyor belt. With my grandfather getting sick in the community, he was expected to be treated and managed at home. If you get sick in the community these days, we almost always call an ambulance. It is very scary for someone to get seriously ill. The ambulance will take you to the nearest emergency service. Emergency departments are very stressed. They revive you, pack you up and prepare you for admission to the hospital. And then you get 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 photo of my mother and my brothers and sisters. It was not the same as my grandfather, for my mother. In the last six months of her life, she was admitted 22 times to acute care hospitals. They didn't tell him what exactly was

wrong

with her. People didn't tell him that as you get older, things start to deteriorate and you get sicker. She was not given any option in the matter. She just got sick and they put her on this conveyor belt and admitted her to the hospital. I had to be a son in those situations, not a doctor, so I didn't interfere in any of those decisions until finally a very special doctor sat us all down and said, "Your mother is old and dying, and we should Let her go in peace." That was a huge relief for all of us and, of course, it was a relief for my mother.

And so, 48 hours or so after that, my mother passed away very comfortably. What did my mother die from? Well, when she was an intern, we were allowed to write "old age," but we're not allowed to do that anymore. We have to invent a medical term. So, for example, everyone who dies has their heart stop, so we write "cardiovascular disease." So cardiovascular disease is the most common way to die in our community. (Laughs) What really worried me was that my mother kept asking me, "What's

wrong

with me, Ken? If only they found out what's wrong with me, then we could do something about it." This is very difficult to explain because when you get older, you get sick and it is very difficult to identify exactly what is happening.

And furthermore, medicine is based on diagnosis. That's what we learn for six years: the diagnosis. A single diagnosis. Hospitals are wonderful places if you have just one problem that can be solved. However, as you get older, the combination of all the so-called chronic illnesses or comorbidities (whatever the medicalized word is) add up to something for which we still don't have a name or a number. I like this word: fragility. Because it is treated from the patient's point of view. It is not a series of medicalized terms, it is fragility. And I'm sure many of you in the audience have experienced it with older people, and you know what happens as they become frail, as they become more frail.

And I especially like this score about fragility because it has nice images. So you start at number one, you're very fit at sixty or seventy, and then you gradually become more and more fragile, more and more vulnerable. Until it becomes very difficult for you to move, until you become even more vulnerable. Then you are confined to a wheelchair and eventually you don't have the strength to get out of bed. Despite all the specialties, all the medications and all the wonderful things we can do in medicine, age-related frailty is not curable. So TED talks aren't just about the problem, they're also about the solution, and what I'd like to talk to you about is what we're trying to do about it at my own hospital.

It's not really about high tech or IT or anything like that. It's not something luxurious. 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 at the center, discounting everything else and thinking, well, how can we do this in a better way. So, believe it or not, doctors in hospitals find it very, very difficult to recognize people at the end of life. I know it sounds very hard to believe. So we're working on a tool that gives us an idea of ​​people who have months or maybe a year to live.

It's called a glass tool. It is very simple, it can be used by people at the bedside. It's just a combination of logical things, like age and frailty score and things like that. Now, with everything we do in medicine, there is uncertainty. Uncertainty is inherent to medicine. Take, for example, a 20-year-old person with a terminal brain tumor: we do all the tests and find out that he is terminal. The first thing we do... well, the first thing the person wants to know is, "How long do I have to live?" So, using all the data we have on all the people 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 could be three." years, but the disease is terminal and we can't do much about it." And the same goes for the elderly. A result like this will at least allow us to move on to the next phase. And the next stage is not rocket science either. But it Believe it or not, doctors are very uncomfortable talking to older people about death. I'm not really sure why that is. So the next step after recognizing these people is to open a discussion in an honest and empathetic way.

The next step is also logical, but believe it or not, this doesn't happen either. It's about empowering patients and their caregivers with choices. So, it would be honest about where we think they are in life, how much time they have left to live and how they would like to live that life. Maybe they would like to keep in and out of the hospital, maybe they would like the most aggressive treatment available, but at least it would be based on good data and a good way to make a decision. However, we have found that many people do not want to keep going in and out of the hospital once they know they don't have much time to live.

In fact, around 70% of people, in this country, the United States and the United Kingdom, when asked, would prefer to die at home. Now, this contrasts with the fact that around 70% of you will die in intensive care institutions, in hospitals. So there's a discrepancy here, which kind of reinforces the fact that we're not talking to people about this in the right way. Long-term solutions are not in hospitals. Long-term solutions are things like putting the family doctor at the center of care; advance care directives, you should think about this while you can, talk to your loved ones, and write it down.

But we also need to move resources and support people, if they are going to die at home, so that they are cared for and have respite care. I'd like to be controversial here and say that I don't think the last months or years of a very old person's life are a medical challenge. Maybe if they are in pain or uncomfortable, of course. But most of it is community support: facilitating caregivers, making sure their house is clean, making sure they have food, making sure they're washed and all that kind of stuff. This is not so much a medical or health problem.

So the death of the elderly has been hijacked. Patients are divided into individual organs and we try to fine-tune and improve these individual organs. A bit like childbirth in the 50s or 60s, which was also hijacked. Women in labor were taken to the hospital, hung, with their legs spread, the baby was taken out, put with all the other babies, fathers were not allowed to be with their wives, fathers were not even allowed allowed to hold the baby. This was the normal way we carried out births in the 50s and 60s. This is similar to what is happening with older people right now.

So this is where many of you will die: surrounded by high technology, served by well-intentioned people with a lot of experience in their particular area. We also hear about medical miracles almost daily, and that's exciting. But we hear about what health can do, what modern medicine can do, but we don't hear much about what modern medicine can't do. We need to be much more honest with our community about the limitations of modern medicine. Rarely a day goes by when I do my ward rounds with my colleagues and one of us doesn't say, "Please never let this happen to me!" Then this is one of the most important decisions of your life.

You need to take control over your own end of life. Thank you so much. (Applause)