Eight: The Shift

Roger, 39

I see the optimistic parts of death. It is sad but I think that people who are prepared for stuff happening are better able to deal with grief afterwards. Rather than it being a surprise.

I think that one of things we do as palliative care doctors and nurses is that we are practitioners of prognosis. We use different things to do that but it’s never exact. It’s about initiating important conversations with family early and using the word dying. Allowing family and everyone to know that and putting things into place to try and minimise suffering. Not just for the patient but also for the family. I think that’s the big part of what we do.

I saw a guy today. He’s completely well and still working but his scan showed that he’s got disease everywhere. I’m thinking about it and I go, “I think that this won’t be longer than a year.” I didn’t say that to him because he came for a very specific reason that requires lots of other things to be worked out.

We did have a conversation about what he thinks will happen here. He said, “Well … It’s incurable.” What I’m doing now is stopping the disease from going forward. That’s good enough for now for a person who is functional.

Sometimes people will ask you, “How long have I got?” You can give them an approximation, relative to how they function and what their symptoms are like, and then, lesser so, what the numbers and scans show.

They have numbers that they can look at but there is also function.

“What are you doing to have that number? Are you still walking the dog? Caring for yourself and doing stuff whilst you have those numbers? Are you in pain with lots of symptoms and can’t do much? [Are you] needing more and more and more care … with those numbers?”

I think the world of the dying grows smaller and smaller. They are not able to go out and do things. If you think of a well person, they could get on a plane today and go to Kilimanjaro and do something. Whereas that gets smaller and smaller as disease progresses.

I’ve been a doctor for 14 years. Not long at all. The other day one of my senior colleagues, who I respect, called me a ‘Senior Doctor’. I sit on the other side of the table now even though I still feel very young. I had a good amount of acute experience.

I have a good job because I do Anaesthetics. I put people to sleep and manage unconscious people. As well, I do palliative care. I’ve got a good balance of fast and slow in my life.

My parents migrated here when I was 10 from Malaysia and I was born there.

I’ve grown up in Australia and all my friends are Australian. I’ve never had any Indian or Chinese friends. I’m very Australian with an Australian wife. [laughs] I fit in very well in the country here because people think I’m going to have an Indian accent but I don’t. [laughs] I speak English pretty well. [laughs]

I could speak English when I got here as well as Bahasa Malaysia. I can speak bits and pieces now. English is what I’m really proficient at. It was probably my best subject [at school].

When I was growing up I loved science. My mum’s a science teacher and I enjoyed science. I loved reading and literature.

My uncle was a doctor and I’ve always loved the doctor’s ability to be able to help people significantly. It’s the highest level of help in a science way.

I went to a really good school in Perth but I didn’t do very well in Year 12. It was very stressful for my parents. In Year 12 there’s an entrance exam to get into uni. I didn’t fail it but I came close to failing.

My parents were really strict and I wanted to explore what else was [out] there. That was music for me, playing in a band and doing things. Hanging around with the wrong people. A lot of those guys are still my friends now and they’re still chasing the dream.

It was all very discouraging in high school when my marks were not going well. All of that kind of blew up. I went, “What are you going to do with your life?”

A lot of the colleagues I have now who are Oncologists, Ophthalmologists … all the ologist doctors … were all my class mates. Once they got over the shock that I’m a doctor now, it’s all normal. Year 12 is adverse. It was bad.

I got into uni and I started doing Human Biology. I realised that if I studied, I could get good marks. I also met my wife around that time. That was all encouraging and positive reinforcement.

I married my wife 15 years ago and we’ve been together now for 20 years. I met her when I was 19.

Karen is very balanced. She’s been at home for the last 10 years with the boys. She did a Bachelor of Commerce at uni and now she has her own business doing bookkeeping. She also does work with disability services.

I think everything in life always happens for a reason. There’s always a purpose behind it. My kids are 10, 7 and 4. The biggest thing I want for them is for them to be productive people and to have integrity. At the same time, one of the skills is that they need to read. The boys love reading.

I studied for seven years. Three undergrad and four graduate medicine years. Most of medical school now is four years as a graduate. You can have an undergrad degree in anything but you need to sit the entrance exam then do the interview. You then get ranked and get a place.

Medical school is like high school again. People were popular. Other people were doing other stuff and then me… who was now the nerd… wanting to study [laughs] and get on with it.

The doctor part is more about that intimate, significant help. Now that I’m doing it, I couldn’t imagine not doing it because it doesn’t feel like work. It feels like an extension of uni but you just get paid for it now. It’s still academic. It’s still very complicated. I love complicated things.

You don’t have to publish. You can do your stuff and be quiet and live a very simple life. Medicine is a bit like art. You have academia where you doing lots of teaching. You can have the forefront and the frontier, creating new things.

There’s a lot of people who want to do medicine and become doctors.

Medicine attracts a certain type of person. Those types of people are people who want things to be just so. One the biggest lessons in the last number of years has been learning that perfection is a false reality. What you should be chasing is mastery.

If a misdiagnosis happened with a patient of mine - you couldn’t find this, couldn’t find that, everything was done, boxes checked, click, click, click, no-one could fault what you’d done but it was something that was really far out that no-one would have done - and it happened, you would of course feel bad … but … you could take that as you did the right thing.

If you strive to achieve mastery and you fail or you don’t do something right, there’s a lot more self-reflection. “How can I do that better?”

What I’ve learned in the last couple of years is self-compassion. With my job, doing Anaesthetics, you want things to be 100% You want someone to wake up but lots of bad things happen. I’d never had an adverse event until about six years in and then I had a series of things go wrong. People would say that it’s the law of averages but, for me, my world fell apart.

I’d always put my reputation on being perfect. What I’ve learned in the last two years is that when things go wrong, even though I’ve done everything that I can, I’m still a good doctor. It happens to lots of people and I have to be kind to myself. Not everyone gets that.

The chasing of perfection and infallibility is false.

I manage the expectations of my patients depending on the context. If you are talking about someone who is dying it’s different to someone who’s not.

When I did general practice, patients used to bring in lots of stuff for me to look at.

One of the things you realise in medicine is that pain is not physical. Pain can be entirely psychological and social. There’s no amount of tablets, blood tests or intervention that’s going to fix childhood trauma, abuse or any of those things that I can’t change… and your current environment.

When I reflect on some of the patients who really took up a lot of my time, I’d done everything but there were things that I couldn’t fix that I was never going to [be able to] fix.

If people are dying, their ceilings of care are no longer up here. [They are] down here and they don’t even know it. It’s not because things are mean. It’s because their bodies can’t do certain things. One of the biggest realisations is explaining that to patients. It might seem unfair.

One of the things that we have is lots of older patients. A lot of the families want everything done but everything done for a 90-year old woman from a nursing home with a fractured femur is maybe an operation. If something happens, it’s not flying her to Perth with a tube down for her to be in ICU. It’s saying, “Look. Your mum is frail. She’s got heart failure. She’s fractured her femur which is a high mortality rate. If she suffers a complication, it’s not intensive care, it’s comfort.”

It’s not mean. It’s the phase of life.

[There’s all these decisions about when do you stop. When are you hurting someone by trying to help them?]

That’s what we do every day. You manage that with patients by being really calm and explaining things.

I’ve been a doctor long enough and worked in jobs more than most of my colleagues at the n-th of medicine. Where transplants are happening and people are getting new valves. People are so sick and they’re being kept alive with so much medication, to the pinnacle of care.

When you sit back in a comfortable room and people are struggling to work out what is the limit, I think I’ve seen the limit. I know what it is to be able to calmly explain to them what [the limit] is, from first-hand experience. It’s authentic. I haven’t read it.

Having an acute care job is very good because you know how frail physiology is already. It’s not a construct. That helps.

Palliative care is a multi-disciplinary speciality. One of the things that I like about palliative care is that it has the psychological element. To provide proper care, it’s not the doctor does the physical and everyone else does different things.

When I’m talking to you, I’m talking to you about your symptoms. At the same time, I care about who is your carer? How are they feeling? How are you feeling? I’m also thinking about if you go home tonight and there’s an event. What if they bring you in and you are wanting comfort and someone, who doesn’t know you, sticks a tube down and does CPR when you don’t want that?

If you are going to die, are you going to die in Hospice or do you want to die at home? We go with that global mindset.

At the end-of-life there can be existential and spiritual distress. I think they’re two different things. The core of the existential is that there’s not enough life that’s been lived. They want something more out of it. Spiritual is connecting with God. Is there a God? Why is this happening?

You can’t treat that.

If someone is dying and in the last days of their life, there’s not much you can do. If someone is dying but they’re much more functional, there are definitely things that you can focus on. Distress is a symptom and it’s as real as pain.

There are definitely patients who don’t want palliative care involvement. They do their own thing. That’s one part of the spectrum. The other part is differing understandings of death. Not accepting what’s happening.

I’m a Christian and I believe in God and I believe that God does heal. I find it difficult within myself when I can clearly see someone deteriorating with cancer and whatever it might be. I know, as part of my faith, that death was never part of God’s plan. Death is something that came to be because of the way that the world turned out.

However, in death we believe that we will see God again.

I think I struggle with people who believe that things are going to get better when they’re very bad. They then make decisions that can hamper that process, occupy mental bandwidth, when it should be a different process. Not being with their loved one or not being around. That happens quite often.

Even though you’ve told them multiple times and they won’t accept it and you’re getting frustrated, that’s the cue to stop. You’re just going to get frustrated and you’re not going to be able to help in any way.

There are certain patients who want us to be around but may not accept bits and pieces.

It’s almost natural for older people to die but it’s not if patients are young. Over Christmas we had a 35-year old, 39-year old and a 41-year old die, all who have kids the same age as mine. Those things are very confronting.

One of the symptoms of working with people who are dying every day is that you reflect a lot on your own mortality. I personally think, “How would I deal with that? Am I ready to die?”

Working with dying people has changed the way I live my life. To be fully ready to die, you need to have fully lived. I don’t waste my time anymore doing things that I don’t need to. That involves having a hybrid job like I have now. I do a bit of Anaesthetics. I do palliative care. How do I make a living? I just do. [laughs] I don’t care about all of that. It doesn’t fit in the mould that is the standard trajectory. You just crack on.

It’s distressing seeing people the same age as me, if not younger, dying but it makes you want to live.

One of the things I try to do with my boys is to normalise death to them. To make sure that they understand that one day we won’t be here, other people won’t be here, they might not be here. But to do it in a way that we understand that life is meant to be lived. You can’t prevent silly stuff. Silly stuff happens all the time.

[Growing up in a rural community you are aware of birth and life and death and decay and the smell of death with animals. In some ways, it’s familiar. A lot of urban kids don’t have any experience of that sort of stuff.]

Humour is very patient-dependent and how they’ve lived their life. The family too. Like a non-serious family who understands things. They do occur but it’s about building that relationship with patients over time so that you can have that. They understand and they let you in.

I haven’t had to manage anyone close [to me] here. I think if it does come to closeness, I would detach myself. It’s best to have that distance. Some doctors are better with those sorts of things and that starts with doing it early in your career and being really strict about the personal and the professional.

There are definitely people I know in the community, from church or from work, who have come in and who have died. You’re solemn and respectful of it.

We’ve got neighbours across the road and he is unwell. He’s got end-stage disease and he came very close at the end of last year to dying. My boys are genuinely concerned that they might not see him again. It got to a point where he was going to die but he’s better now. Way better! It’s still that edge. It will come and he will be getting palliative care at home across the road from us. Will it be me? Probably won’t be. It will probably be Louise or I might help supervise. We can be just there.

I’ve been here for about eight years. It’s not long but you get to see the ups and downs of life. People going through difficult things.

The traditional goal of medicine is curative. You restore back to normal. There are three phases of disease in life. There’s the curative phase and there’s the palliative phase and then there’s the terminal phase. Many patients may be in the palliative phase and they don’t even know it. Palliative means that there is irreversible disease.

Someone might not even think of being referred to palliative care. If they have heart failure that wasn’t great; they smoke and they’ve got disease (COPD); they’re not going to get better; they’re on a bit of home oxygen now; and they can’t do much around the house, that patient, to me, is palliative.

Someone’s trajectory starts around here and everyone’s life is like a decline [on a graph]. One axis is time and the other is function. Someone will decline over time. Some people, as you see in accidents, they die like that [on a step decline] whereas cancer will be up and down. Treatment lifts them up then illness takes them back down.

Some frail people start very close to the bottom. They’re not really functioning well.

There are plenty of patients who might have cancer and live for many years but the cancer is everywhere. Are they going to be cured? Unlikely. They may be in the palliative phase but they might still get some other treatments. They are still being treated because that palliative phase can go for years.

If you are closer over to this terminal phase, which is the dying and death phase, then decisions are a little bit different. They might have declared a person palliative right over here when they had disease that was really stable but incurable. They’re still able to walk around and go to the shops.

I’m still educating doctors and I will continue for the rest of my life to let them know where people are [on this graph]. In the palliative phase your care ceilings aren’t as high any more. They gradually come down as the person’s function comes down.

You wouldn’t be sending someone down here to ICU. You wouldn’t be giving them interventional, invasive treatment. Whereas, you would take a well, 60-year old robust man with a big heart attack in for open heart surgery.

People don’t like using the word ‘palliative’.

Sometimes patients come here and they get better. They then go to a nursing home and they get completely better. They are fine or they go home but they are still in the palliative phase. We haven’t actually solved any problems, they just functionally get better. Mentally. Socially.

The best thing we have in palliative care is time. We plot points. Where is someone now? I always ask people, “What was happening a month ago?” They’ll look back and go, “I was really well. Something’s happening now. I’m not as great as I was. Maybe I need to consider some more things. If that point is there, where am I going to be? I need to do something about it.”

People’s mood follows the ups and downs of diagnosis to triumphs. For instance, if you help someone with their pain who’s got quite debilitating cancer and cancer everywhere, their mood and everything will go up. They’ll elevate and feel great.

There was a patient here who had breast cancer and it was in her liver. She had one round of chemo and she couldn’t stand it. She said to the Oncologist, “I don’t want to do this anymore.” She was really bitter and upset that her GP had taken ages. As soon as she stopped doing the chemo she kind of went, “I’m going to go travelling.” She went travelling for a year but as her body started to deteriorate, so did her mood.

She went from it being really bad with chemo, right up again and she was great.

The other part of mental state is cognitive when patients become confused or delirious and stay that way.

The thing about loneliness is that it’s a risk factor for death. We know that from population studies. With large groups of people when you study alcohol, smoking, obesity, loneliness and depression, being lonely is the equivalent of, or almost as bad as smoking or being obese.

If you want to kill someone, isolating them is …

[It’s a known torture technique as well.]

I think that’s one of the [most significant] things that’s happening now. People don’t have family [close to them]. People don’t have interaction. That’s what’s happened with us with being able to travel. Families used to live very close to each other.

I think about that … one of things we want to do is buy a house in Perth soon to be in the epicentre between my parents and my wife’s parents. We know in the next number of years, as people start to go to their eighth or ninth decades, we want to be close.

Having people close is important.

[Geographical isolation is a challenge. If you go visit someone, especially if they are elderly, there’s this huge weight that is added to each visit. Is this the ‘last time?’]

I haven’t yet personally lost anyone in my circle or in my family and friends. The only people that have died have been peripheral really. I haven’t had anyone close to me die that I would tangibly … the ones you spend time with all the time.

My uncle who lived in Malaysia, who I was close to at one point, and my grandparents have died.

They were very much detached in that they were in a different country. When we lived in Malaysia we used to see my grandparents a lot and they used to fly over to visit us in Perth.

My granddad died in a car accident that my two uncles were also in. They were really badly hurt and he died.

One of my uncles died later. He died pretty young … Sixty something. He died because he lived a hard life. He was a doctor and really wealthy but he drank every day and did drugs. All his children are doctors and his wife is a doctor. I have no idea how he managed to live like that in Malaysia.

The accident was caused because he was drunk.

About five months after the accident my grandma died. Her world had fallen apart. I was doing med in university when she died. Maybe it would have been easier to process that if it was now but, for me, I think I felt ok with her dying.

I think I fulfilled one of her greatest wishes. She really wanted me to become a doctor. I know it’s the ultimate Asian aim for your son or daughter to be a doctor and it’s held in the highest regard. That’s all they have. She was really happy when I fulfilled that wish.

I talked to my mum a few months ago on my grandma’s anniversary. She said to me, “Grandma died happy. You were a doctor.” How superficial that is right now? What your job is, defines you. For me, it doesn’t but for her, it did.

I deal really well with her death. She leant me money to buy Karen an engagement ring as well. She leant me $500 and the ring cost $900. The thing is, I had no money. Karen doesn’t want to change it or put a different diamond in it because it symbolises that time when we had no money.

I’ve got lots of positive memories of my grandma dying. This notion of living your life fully. I think I would have dealt with it poorly had I squandered and wasted the opportunities that I’d been given.

I didn’t fly back for her funeral. My mum went. I was in uni and I said to mum, “Do you want me to come?” She said, “No.”

When I got married, one of my grandma’s sisters flew over to represent my grandma. Grandma died in the year that I got engaged. I got married the year after.

I think that we honoured her memory.

I’ve not had anyone like my mum or dad or someone is my close circle of friends die.

I’ve gone through my head how I would deal with one my kids or my wife dying because that’s what I do. It’s almost mentally preparing for the protocol that I’ll write in my mind as to how this will go. I’ve got a good network. I’ve got people around me that are going to support me and tell me if I’m doing something stupid.

Church. Mentors. I think that I’m better prepared than I was for death and all of the other stuff. That’s been intentional.

In the end, things that we worry about really don’t matter. Having worked in this job everyday, I think, “I have another day that I can get up and do what I do … Great.” I’ve seen so clearly that things [can] end in an instant. Life changes overnight with a diagnosis. If you are caught up worrying about things or wasting time, it doesn’t matter.

Life is short and you’ve just got to get on with it. [laughs] Getting on with what you’ve been brought here to do.

I’m thinking about the people I work with, in my team. A lot of them have had to deal with the death of friends. A lot of the people who work with me are drawn to palliative care work and Hospice work because they’ve had someone that they know who has been impacted in some way by palliative care.

One of the best things about this area of work and life is that it’s more than work. It’s the things that matter at the end.

As my boys are getting older, they know that I’m a doctor. The rudimentary understanding for kids about doctors is that a doctor makes you better. [laughs]

They understand that one of my jobs is to help people who are dying. Sometimes that involves calls in the middle of the night or visiting the nursing home. “Will you come with me? Let’s go.” I sometimes bring them to the Hospice on a Saturday or a Sunday.

They’ve been exposed and they understand that we have a period of time where we’re here… and then we’re not. “Grandma and grandpa will die one day. Mum and I will die one day. That means, we’re not here.”

I think that’s as far as they understand at the moment.

My boys used to come with me when I had lots of aged care patients. They used to come with me and do rounds on whatever day it was. They would just stand there and the older people wanted to talk to them [laughs] and do stuff. They were always safe.

I think I’m taking the boys along a journey. They know that dad used to do a lot of work in aged care and now dad works in a Hospice and works with people who are dying. I will continue to take them along, understanding exactly what I do.

Some of things that I write about - which hopefully one day they’ll read - include reflections on dying. That’s it at moment. There’s nothing more that they need. They’re still young and they don’t need a lecture. They know enough that they are able to articulate what their dad does.

[The death of a pet is quite often the first real experience a child has with death.]

They’ve lost a dog before that we had to put down. I do talk to them about our dog at the moment who is 10-years old. I say, “Let him enjoy life.” He’s a full-time inside dog now because he wants to come in. “It’s too cold!” He lives inside and we’ll say, “Rex only has a number of years to live. Let him enjoy this part here.”

They actively know and they love having him inside now.

Before we had kids, me and my wife had two dogs. We used to say that we wouldn’t know what to do if one of the dogs died. It would be difficult and we’d have to take a couple of days off work. [laughs]

Then our first was born - who’s 10 now - and my perspective changed. [laughs]

John was two when one of our dogs had heart failure. Karen went with the dog and mum to the Vet in Perth. She was put down. She died and I was really sad but it was made less so because we had John.

It put things in perspective.

The hospital staff carpark is just over there and I wonder what people think about the Hospice.

It’s quite a moment when someone dies here and the family are around. The staff will stand in a row outside when they’ll take the body out. Often the face won’t be covered. It will be open.

They’ll wheel the deceased out, in front of the family, and put them in the hearse. Often, if I’m here when that happens, I’ll go. Even if I haven’t been involved, it’s a sign of respect that the patients leave the way they came in. There’s no back door.

The other patients will sometimes stand and watch. It’s a very solemn moment.

The last one I did was that lady with breast cancer. She had five kids and they were all young. The youngest was 18. They all stood there and it was a beautiful moment, them all saying goodbye to mum.

 

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