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"There are worse things than dying" - how Irish medical workers deal with the final journey

Doctors, nurses and specialists told us what death means to them as an experience.

DEATH IS A difficult subject.

Birth and the end of it are the only two things anyone can be certain of in life (you can avoid taxes if you’re really enterprising).

Everyone deals with the end of someone’s life differently, and everyone’s own reaction will be different when their time comes. But for almost all it’s an intensely emotional experience.

But what of those on the frontlines, those who deal with death on a near-constant basis as part of their profession?

TheJournal.ie spoke to medical practitioners from across the spectrum on a subject that most would rather not think about. These are their stories:

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Paul D’Alton – head of psycho-oncology, St Vincent’s Hospital, Dublin

“I’ve worked in cancer care for nearly 10 years so I’ve seen a lot of people die, probably more than 700. I think I’ve gotten to know death reasonably well. It’s very different when it’s someone else and not your own.

“I’ve learned that the fear of death is toxic, and that those who most fear death are generally those who most fear life, who have an inability to embrace life, a fear of loving and relationships and really embracing life for what it is.

“I think a fear of death is absolutely understandable, and in the absence of religious belief it’s probably more difficult for people. We have to remember that it’s inevitable, the only thing we’re guaranteed is that one day we’ll die.

“There’s a lot to be said for knowing at a deep level that we’re impermanent. I think there’s a freedom to that, to knowing that one day it’ll end. For many people who are diagnosed with a serious illness, they come to realise at a deep level that life is not meant to be permanent, and that gives them a liberation or psychological freedom.

We’ve a real death phobia in the western world. We live with the illusion of our permanence.

“There are no, or at least very few, Hollywood moments on the deathbed – how we die is generally how we’ve lived – our attitudes to life, our anxieties, are all replicated in how we face death. If you can’t face emotion in life you probably can’t do so in death.

“I don’t believe in epiphanies. I see people who get a diagnosis who make very gradual changes. Sudden overnight changes, they’re rarely sustainable. There’s no going back from confronting your mortality.

“In some cases it really is possible to fight something through sheer force of will. People will live for a few days over Christmas, or they’ll wait for a family member to return home – that’s not an unusual phenomenon. That’s more about relationships – about seeing someone that they love, that’s the kind of thing that people hold out for.

“How would I like to die?”

“I’ll give the old Woody Allen quote – ‘I’ve no problem with death, I just don’t want to be around for it.’ Look, death terrifies me, and I can’t help but think that ‘wouldn’t it be great just to go off to sleep aged 85 and slip off’.

“There’s an awful lot to be said for a little bit of notice, to sort out our emotional affairs. I wouldn’t underestimate that either. But in an ideal world, I’ll be 85, I’ll eat some very nice food and drink some very nice red wine, and then I’ll go. A friend of mine’s father had dinner and two gin and tonics and then died in his sleep at 82, that seems to me to be not a bad way to go.”

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Anna-Marie O’Brien, general practitioner, Abbey Street Medical, Wexford

“When it comes to death I suppose I’ve learned that I can accept the elderly dying, but not those who are my own age or younger. I find that desperately unfair. It really upsets me.

“When that happens I can’t help but think ‘Could I have done things differently?’ And that’s the emotional aspect of being a GP, particularly when it’s something like meningitis that’s been identified very late.

It’s very upsetting and I can’t show it, but I feel it inwardly, and sometimes I bring it home with me, whether I want to or not.

“I think about those kind of cases a lot.  I know it’ll be there the next day, and the day after. And then hopefully it’ll be gone.

“I’ll say it to my family if I’ve had a difficult case, without going into particulars naturally. I have to really say it can make me irritable at home, and I may not sleep well.

Sudden death can be very affecting, as can suicide. You think you’ll see this person again alive, and then you’re told that they’re dead. Sometimes I feel detachment, but not often.

“I’ve learned the cycle of death from the point of view of cancer patients – the numbness and then the acceptance.  A lot of people in that position do die peacefully, with an inner serenity, so long as it’s not drawn out. The painful part is when they’re still well, but they know what’s coming. In such cases it’s actually easier when the person is closer to death – then it’s more possible to talk to them and to help them.

I don’t think people have revelations or epiphanies. I think it’s more complex than that – people have guilt about their decisions in life. If you have no regrets then it is possibly easier to die.

“Personally? I want to live into my 80s and I want to live independently. I would rather not be the victim of a stroke, or to suffer from dementia, which is quite frightening. Ideally I would like to die in my sleep.

I don’t think I’d like the goodbyes.

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Teresa, general practitioner, Cork

“Death, I have learned, isn’t always sad – there are worse things than dying. Some conditions are cruel to live with, and death is not always the worst thing that can happen.

“I’ve had an equal number of very old people die as well as young, I don’t think age determines how well you die. One of the hardest things I think I’ve had to deal with was a patient whose child took her own life – because I felt so much empathy having had close contact with similar.

It can be intensely difficult when someone who has a job to do is robbed of their ability. A young woman patient died of cancer – her  children were starting school and they needed her and she simply couldn’t be there for them. That was something she never came to terms with, and she fought tooth and nail to stay alive. She never gave up, it lasted a long time, and in the end she wouldn’t say goodbye. She couldn’t bear to see anybody or have the conversation, and I felt so sad for her family. When someone is fighting that’s great, but if it’s inevitable they have to be able to make peace with it, for their family’s sake if nothing else.

“One of the most uplifting experiences I’ve had with death involved another young person, a man who died far too young from cancer. He had a young family, and his prognosis was horrendous from the start. He went through it all, the trips to America for outlandish treatment, all the terrible procedures, and he wore it so lightly. He was angry, and he wasn’t a religious man, but he didn’t let it consume him. And when it became inevitable his family decided to live his death. They took the summer off and spent it making memories. They drove around Europe and Ireland until he just couldn’t anymore, and when he died he was at peace with what he’d done in life. And that’s a big part of whether people can die easily or not. This man turned his anger at being cheated into positivity –  he wanted to be alive until he wasn’t alive, and that made it easier for his family.

“The worst kind of death is a long, tortuous loss of your faculties, when you’re still around, but not aware, and it’s the people observing who bear the brunt of that.

I don’t think anyone gets an epiphany. I don’t think anyone can really embrace the reality of having a short time to live, but it goes in one of two big ways: you’re either so angry you can’t be anything else but resentful, or over time you just make peace with it because it is what it is. You try and be as present for as long as you can.

“A sad thing about modern life is that the vast majority of people die in hospital because we can keep people alive so much longer. People don’t want that, they want to be at home. In the western world we’ve become disconnected from death. Our ancestors would have been decimated by the likes of TB. Nowadays people just recover from illnesses until their final one. We’ve brought illness to hospitals so those who are alive don’t have to deal with it. Death is better when it’s seen as part of the cycle. You shouldn’t treat it as something alien because there is nothing surer – it will happen to us all.

“Once you know this is it, how you faced the world is probably how you’ll face your death.

Personally, I’d like a short illness. I want to say my goodbyes, so my family and circle aren’t tortured. I‘d like to die at home surrounded by the people that I love. I would like something that is rapidly terminal, but not instant. I think a sudden death is very cruel on those you leave behind.

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Sophie, former staff nurse, Beaumont Hospital, Dublin

I have seen plenty of people die. Working on the wards in Beaumont, people would often die on their own and would have passed before their family came in. As a nurse it’s part of your role is to sit with them and be with them. People don’t want to die alone.

“Families are always very appreciative if you’re able to say ‘I was with them’. You’ll often see situations where say family are coming from Australia, and a patient on a morphine pump with no medical reason to last will hold on because they simply don’t want to die alone.

“Nurses tend to have a little bit of black humour when it comes to death. Sometimes you have to have a bit of a giggle with your colleagues. Like when someone dies, often certain bodily functions will happen, that’s just the way of things. And you have to be able to laugh because otherwise you’d go off your rocker.

Laying someone out is the nicest and last thing you can do for someone.

“That involves asking the family to leave the room. Then you change the sheets and get them in the right position, make them look as much themselves as they can. Often when someone dies their face will be distorted. You want it to be so their loved ones can see them as they knew them.

When someone dies I learned to open a window to let their spirit free. It isn’t something doctors tend to understand – it’s an old school tradition that has passed on down the generations.

“Some medical practitioners just don’t know how to express themselves, and they mightn’t even say sorry to a family whose loved one has just passed. That’s all a family wants really, for you to say you’re sorry for their loss.

“When I worked as a respiratory nurse I saw a lot of young people die which was really tough. In particular Cystic Fibrosis (CF) patients I found really hard – 18-year-olds who were born and then and in many cases knowing death was inevitable. That’s a very hard life.

“You do disassociate from death to a certain extent because otherwise you couldn’t do the job. After the initial shock, which hits everyone, the urge to cry leaves you. Everyone has to die, you’re in a hospital, you’re sick, it’s going to happen.

But the deaths of younger people, those I brought home with me. I got really attached to one CF boy in Beaumont, and it got to the extent that it affected me caring for others. After that, I never let that happen to me again – it’s not fair to the patients.

“You can live with death hanging over you. I’ve seen terminal patients, young people, they know they’re going to die, but they hang around with each other, they get Chinese takeaways on the ward on a Saturday night – they try to live as normal a life as possible. They know they’re going to die. And they know that if someone they know has gone missing from the ward that most likely they have passed away.

People deal with death differently. I saw two ladies once within hours of each other, both the same age, and their babies had died in the womb. One woman accepted it, and said it was God’s will and that there was nothing to be done but to carry on. The other lady was so angry, she simply couldn’t deal with the unfairness of it all.

“I’d like to die in my sleep, at home. I don’t want to be ill. I’d like it to be without warning I think. If it was my father or my mother I would want to be there. But I think I would be very afraid if I was ill and sick. Some people pass away very peacefully, some people fight it with everything, and that can be a very hard death for everyone involved. That would be very difficult.”

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Helen, general practitioner, Galway

“I suppose that being a GP makes you privy to different kinds of experience than you get working in a hospital. When you’re seeing someone very regularly and you’re very involved in their terminal care, that’s different to when someone dies on a ward. You’re supporting the physical process of it.

“I’ve been involved in some situations where patients have palliative care at home, and I think that if it can be done in that sort of setting it’s wonderful and much more human than dying in a hospital ward, or even on the way to hospital.

Hospice workers are tremendous and do a lot of work around helping a family come to terms with what’s happening.

“You often see patients who are suffering from repeat recurrence of malignancies, people with a desperately poor prognosis from the start, but they still fight and cling onto everything that there is.

“They’ll live for slightly longer, but in a very distressed, uncomfortable kind of way. Looking at those situations, you would feel for yourself that you might know when it’s time to let go, that you would know when it is better to do so.

I don’t find the death of patients a heavy blow. What I do feel is a huge sense of responsibility to do the best that I can for them while they’re in my care. The actual death per se doesn’t bother me unduly.

“Professionally, situations that are maybe very, very tricky – if I manage such situations very well for them so that the patient can die among their family, if I can manage that I can absolutely disassociate myself from the death.

“One of the worst things I find is for a patient to be terrified. And that can happen, where they simply can’t let go.

I’ve certainly had experiences where people let go because they did accept death’s inevitability. If you can reach some sort of acceptance that this is what’s happening then that is so much better for you and for others. But some people just can’t get to that point. Having said that you can have all sorts of insights, but you won’t know yourself until your own time comes.

“There are certainly situations where I consider prolonged life to be worse than dying. In the sense of interventions that won’t cure you, you’d think as a medic that it’s simply not worth having that awful chemotherapy or whichever dreadful, draining treatment if it’s not going to make you live significantly longer or improve your quality of life.

“My mum is elderly, and we regularly discuss what’s to be done if she dies, where everything is, what will happen at the funeral etc. What she fears most is the process, going from independent living to not so. I think that will be worse than dying for sure.

For me? I would be thinking long and hard about medical intervention that might or might not prolong my life. I would like to think that I might be able to say ‘No, I don’t want that’

“But it’s so difficult to know how you would feel in that situation.

“I do know I would like to die quickly, but with a short amount of time to take my leave.

“From my own experience, I don’t want the long, slow decline that you tend to see a lot nowadays. Medical care has remedied things that would have previously resulted in death. But that often means going on longer, and succumbing to dementia and then slowly fading out. That I do not want.”

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Oliver Comerford, palliative medicine nurse, The Beacon Clinic, Sandyford, Dublin

“Death is a big challenge for people, and healthcare has made enormous strides, but with oncology (cancer care) death is still relatively inevitable.

“In my job you need a good awareness of what’s happening, of what a person’s illness and treatment are. You need to create a supportive structure, to help people to cross that threshold, to make the process easier.

I’d give the analogy of a bumpy road. My job is to fill in the potholes, to make the road newly tarmacked.

“Death and dying maybe allows people an opportunity to remember the good and apologise for the bad.

“It’s a very emotional process and no one word can define what death means to people. No two people’s experiences will be the same.

“I can remember a young man who was dying, and they were playing heavy metal in his room. Now that’s not my cup of tea. But my summation would be ‘whatever floats your boat’. It’s about what makes you content  - that’s what matters.

I have more organised beliefs, but I’m here to make the seas calm as you journey from one island to another. You have people who have faith but then you have people who have spirituality.

“When people are facing death they have to fix on to a constant to cope. For people who are religious it can be very challenging. Those who are more spiritual as distinct from being religious tend to be more at ease and at peace.

“I’ve looked after patients with no religion but who believed in family, their own environment, nature.

Death means saying goodbye to loved ones, it’s a very emotional process. It’s very much not just physical, it’s psychological too.

We’ve had young people dying, and when a young person goes it’s more ‘unnatural’. I’ve seen people half my age die. It really challenges me as it shows palliative care is such a privilege to do –  you can have such an impact.

“Do I feel angry when someone dies? I wouldn’t say that, I feel sad. I can relate to what they’re going through. They should be looking forward to more events in their life, and it can all be cut short so quickly. Working with death makes me so thankful for what I have to look forward to. It really makes me focus.

I’ve been upset and I’ve cried, but I get such a feeling of being able to contribute positively. I can’t change the inevitable, but I can make it more palatable and comfortable.

“As a staff nurse I know I can only do so much. That’s the part of palliative care that takes experience. You can make it softer even if you can’t fix it, and that’s something that can only be learned, not taught.

For me… I suppose I would like to die at home (Kilkenny). I’m quite a traditionalist and a very big family man. I like space and nature and I’m a country person at heart. A bit of chat and having a supportive family around me insofar as is possible.

I’d like to be an old man. My wife’s grandfather lived to his late 90s and was in care only for his last three months. That to me would mean a great sense of achievement. That’s what I would like.

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Read: There is no cure for me. I will die from cancer

Read: ‘What I’ve learned from working in a crematorium for 33 years’

Advice: Organising a funeral: The unexpected challenges when a loved ones dies

A personal story: ‘Then everyone died’: I lost four people I loved in 14 months

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