3 Benefits Of Thinking About Your Mortality At Least Once A Day

By Shoshana Ungerleider, M.D.

As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.

Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.

In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:

1. You’ll be motivated to leave a legacy.

Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life. 

Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.

2. Life will instantly feel more precious.

Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.

3. You’ll learn not to sweat the small stuff.

Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.

Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.

No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”

If contemplating your mortality triggers fear, consider this.

Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.

Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being. 

My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.

Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.

Complete Article HERE!

Scared of death?

An end-of-life coach might be the answer

By

You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article HERE!

Former Ottawa paramedic on his experience with death…

‘I’ve got a busload of people up here in my head’

J.P. Trottier in 2006, when he served with Ottawa Paramedic Service.

By Bruce Deachman

J.P. Trottier was with the Ottawa Paramedic Service for 36 years – 21 as a frontline paramedic and 15 as public information officer. He retired in January 2017.

“I don’t know how many deaths I’ve seen, but it’s in the hundreds. I remember one shift doing three vital-signs-absent calls in a row. That was a busy eight hours.

“You just never know where you’re going to be in five minutes. Are you going to be in the middle of a crime scene? Are you going to be in somebody’s living room, somebody with abdominal pain? Somebody having a heart attack?

“Sometimes, it’s just the daily grind. It can be very humdrum, and then all of a sudden your next shift will be just crazy. You’ll do a shooting, you’ll do an elderly gentleman who’s collapsed at home and his vital signs are absent, you’ll do a childbirth call … you’ll do a whole bunch of different things.”

“You have some really horrible moments in the job, and you have some absolutely spectacular moments. Paramedics have what they call the holy-shit call. They take a look at the person and they know they’re in trouble — that that person is in deep trouble and probably minutes from dying. We call that the holy-shit call. It’s like, get to work. And you can tell after a little bit of experience — you walk into a room and look at somebody. And then it becomes a bit mechanical; your training kicks in and you don’t really think about it. But when you see them like that and 10 minutes later you’ve given your medication and taken your vital signs, or your partner’s taking the vital signs and you’ve slapped the oxygen on them or maybe put in an IV and put the medication in when all the vital signs are OK and off you go. And 10 minutes later when they’re looking much better, it’s an amazing thing to see. It’s absolutely beautiful. It’s absolutely the best part of the job.”

“You don’t forget many of them. The difficult ones you don’t forget. I tell people that I’ve got a busload of people up here in my head, waiting to step out. It’s not being haunted; it’s just that you will never be able to forget that eight-year-old boy who played chicken with a train and lost. You’ll never be able to forget that. If anybody were to come to me and say, ‘Oh, I can handle it … ” Yeah, OK, maybe you can handle it differently than I can, but there’s no way you’re going to be able to forget that. The young boy who comes home from school for lunch and finds his mother dead upstairs because she put a shotgun in her mouth. You’ll never be able to forget that. Never. But they don’t haunt me.

“Very early in my career I had one of those horrible calls – it was a young girl, six or seven years old, crossing the street and was struck by a car. She died en route, and every time I drive by there, it’s like, ‘This is where it happened.’ And it’s no more than that. But they’re with you.”

“There’s that horrible side where you can’t help … they’re in a car crash, pinned, and the paramedics are trying to put the IV in and they’re doing a whole bunch of different things, and you’re waiting and waiting, and the blood pressure is coming down and down and down, and you can’t stem the bleeding because you can’t access where the injury is.

“So yeah, sometimes you can’t resuscitate them, and that’s the moment that you turn your attention to the family. They’re not the patients, you’re not there specifically for them or because of them, but all paramedics will do this; they will turn their attention to the family.

“I used to do presentations for career days at high schools, and they would ask what’s the most important thing about your character that would make you a good paramedic, and I would say two things. The first was that you really have to be a caring person, because that’s what you do. That’s your job, you’re caring for people — their emotional needs, their physical needs. And the second part is good communications skills. You must have good communications skills because of instances like this, where a family member has passed away and you need to inform them. And don’t use any jargon, don’t use any of that nonsense. ‘I’m sorry he passed away. We couldn’t do anything.’ And you don’t give them a lot of info, because they’ll forget most of it after you tell them.

“We have to be careful what we tell them, because they will remember that moment, forever. It really demands respect, and I don’t care if they’re gang members or whatever the case may be. We don’t care; it’s a patient and they have friends or family, and there’s a mother or father somewhere, maybe, or children, grandchildren or great-grandchildren, and all of them will be affected by this.”

“I would often turn my attention to people’s rooms to give me an idea of the life they led. The older generation especially will have a lot of photographs on their dressers or in the bedroom. Even if I don’t know these people, it kind of puts you there. Look at the clothes they’re wearing. Look at the cars they were driving. It gives you a bit of a glance at their lives. There are pictures of their children and grandchildren. It kind of gives you a quick bio of them.

“The ones that really stand out for me are ones where someone’s standing next to a Spitfire, because you know they served. Did he fly planes? Was he in the war? Was he a mechanic? You can sometimes ask the family a little bit about them — you have to tread carefully there, because they may not take it very well. But in some instances I was able to ask the family. ‘Oh, he served?’ — because there’s a picture of him. ‘Yes, and he went to this battle and that battle,’ and of course they’re proud of that. And sometimes I take a minute to thank them for their service to their country. Sometimes you’ll see their medals on the wall, and you can talk about that a little bit.

“It can be fascinating. You don’t know about this person or the life they led, if they discovered a cure for something. You just never know.”

“Has my view of death changed over the years? Yes. I think just because of the sheer number of calls that we do with death and near-death … a patient you were able to get back from the grip of death that they were in. The shootings, the stabbings, the crib deaths — Sudden Infant Death Syndrome — for sure, gave me a better understanding of death. You’re more aware of death and what it means and why it happens, a little bit — we can never know why, really. But it gives you a better appreciation of it, and thus a better understanding of it.”

“You see a lot of circumstances. The suicides are sad. And you also see the murder-suicides, and those are weird. There was one I did where this man had custody of his child during the weekend, and he decided on Sunday night that the child was not going back home to his mother, and threw him off the balcony and then jumped himself.

“So you get to the scene and you’ve got this to deal with. And you only know the circumstances after the fact, but you have a damn good clue that at three o’clock in the morning, when the OC Transpo driver found him when going out to his shift, that the kid, maybe two or three years old, didn’t wake up fully dressed at three o’clock in the morning to jump off of the balcony. So now you’ve got that anger issue. You want to kill yourself? That’s somewhat understandable. But to take an innocent child away from his mother and his life? It’s just … it’s weird. There’s this brain storm happening there in your head, in my head, that’s very difficult to deal with and make sense of. So those are very difficult to do.

Complete Article HERE!

What Going To A Death Café Taught Me About Being Alive

By Nicola Appleton

“My name is Nicola and I’m here because… I’m frightened of dying,” I say to the group of strangers sat around the table in front of me. But that’s not what I mean, not really. What I meant to say is that I’m here because I’m frightened of not living – there’s a difference. I’m smiling but my heart is pounding and my palms are sweaty. I’m deeply uncomfortable.

It’s a dark and rainy Bank Holiday Sunday and I’m at my first death café meeting, held at the atmospheric Arnos Vale cemetery in Bristol. Until a few years ago, I shut down any thoughts I had about myself and those I loved dying. I was actively disconnected from death, the truth was too painful a prospect to consider.

But then both of my grandmothers passed away. They were 86 and 79 respectively, one had dementia and heart failure while the other had terminal breast cancer, yet their deaths had come as a huge shock to me. I had so fiercely avoided considering that death was even a possibility – let alone a probability – that I didn’t even say goodbye. I still grapple with this, along with the idea that two women that I had loved so much, who had been so vital in life, could one day just… cease to exist.

The death café, a not-for-profit social franchise, is the brainchild of a British man called Jon Underwood. It was Underwood’s belief that Western society doesn’t ‘do’ death particularly well. We have a tendency to avoid and ‘outsource’ it, handing over the handling of our loved ones in their final days to doctors, nurses and undertakers.

Inspired by the Swiss Café Mortel movement that aimed to removed the ‘tyrannical secrecy’ out of topic of death, Underwood wanted to create a place where people could drink tea, eat cake and talk about dying. And so, the first death café event was held in 2011 at his kitchen table in Hackney. His mum, Sue Barsky Reid, a psychotherapist, held the meeting. It was a huge success and, together with his mum, Jon wrote a guide to holding your own death café in 2012. There are now death café events held in 65 countries all over the world.

The objective of the death café is to ‘help people make the most of their (finite) lives’ and regain the control over arguably the most significant aspect of being alive. This message is made all the more poignant when I learn that Jon passed away suddenly two years ago, aged just 44.

In my family and friendship circle, we hardly ever broach the subject of death and if we do, it’s with a certain amount of gallows humour. When my mum asked my dad if he would like to be buried or cremated, he suggested she just put him out with the recycling on big bin day. We laughed, and quickly dropped the subject. I still don’t know what his wishes would be at the end of his life. I don’t know what the wishes are for anyone close to me for that matter, not even my own.

While the organisers of the death café carefully stipulate that this isn’t grief or bereavement counselling, everyone has their own personal reasons for attending. Some have lost someone close to them, others have started to think about the end of their own lives and others are simply curious.

My own reasons are that I had reached the age of thirty having never really acknowledging that people die. I mean, I knew, but until that point it remained a fairly abstract idea. When my grandmothers passed away, with their deaths came the realisation that at any point in the near or distant future, my life – along with those of everyone I love – will one day expire. This knowledge can sometimes feel like a crushing weight. Am I making the most of my life? Am I doing enough living?

The meeting is held by a facilitator, but she doesn’t set an agenda. Instead, the twelve of us sit around a table nursing teas and coffees and she allows the conversation to ebb and flow naturally. The strangers gathered are made up of a broad range of ages, genders and ethnicities, and we all hold varying ideas about what death means. Yet the meeting remains respectful, confronting and moving all at once.

I struggle to articulate my feelings around death without getting overcome with emotion. But I listen to the fears, hopes and beliefs of these strangers who share so honestly and freely, and we all laugh when I tell them I worry that if I die unexpectedly that my sons might one day read the half-finished novel lurking on my desktop before I’ve had chance to properly edit it. What if my legacy is just a few crap chapters of a yet-to-be completed book?

My head is still in the meeting long after I get home. I stand in the kitchen and look out at the tree in the middle of the garden. I recently learnt that the previous owners had planted it many years ago to commemorate the birth of their son, but he had sadly passed away. And so, as my own children play in the shadow of the tree that was planted in celebration of a life that has already ended, my mind wanders as it invariably does to this person, this stranger. How can he be dead if he’s alive in my thoughts? How can he cease to exist if those that loved him in life, love him still in death? My grandmothers might have passed away, but I feel them with me every day. To say that they no longer exist is simply not true.

There is still the fear, there is still the existential dread. But after my first meeting –and I plan on attending more – there’s also a renewed urgency to my life. We’re all here for a finite amount of time. Ignoring that fact doesn’t buy you a few extra years. We’re all born and we all die, but it’s the bit in the middle that really counts.

Complete Article HERE!

‘The most peaceful sleep’

Cancer is nudging me to picture dying in a new way

By Adam Philip Stern

“It was the most peaceful sleep.” That’s how my paternal grandmother referred to the time she was technically dead for several minutes before doctors shocked her back to life. She lived another decade after that, but never once to my knowledge expressed a fear of dying.

As I trained to become a physician-scientist with a focus on neuropsychiatric disorders, I often thought of my grandmother’s description of temporary death. I learned that there were credible physiologic explanations for her to have experienced death as an immensely restful sleep.

It’s an idea that resonates even more strongly with me since I was diagnosed with metastatic kidney cancer. I fervently hope my superstar medical team will help me outrun this disease for many years to come, but I must also face the possibility that I could die young. That initially frightened me in the expected ways. What does it feel like to die? What if I experience a bad death with tubes going into or coming out of every orifice, or my ribs being cracked as doctors try to restart my heart?

A recent experience with an endoscopy to find the source of cramping and vomiting after I ate muted those fears. As I laid on the gurney, the nurse let me know I would soon be getting medicine through the intravenous line: a little something to help me relax, to prevent pain, and to have no memory of the procedure, during which I would be partly awake.

As the fentanyl and midazolam began flowing into my vein, the last memory I had is feeling totally at peace. It was the most content I can ever recall feeling. I am thankful to have never struggled with addiction, but that moment gave me a better understanding of why people seek such a feeling no matter the cost.

What has stuck with me since that procedure is the sense that leaving the world does not have to be gruesome, and might even be the best feeling ever, just like my grandmother described it.

There are, of course, physiologic explanations for why peace may accompany dying.

As the brain begins to adapt to oxygen deprivation, its noncritical regions begin to shut down, turning off for individuals who are actively dying the burdens of complex neurologic tasks like risk aversion, problem solving, and anticipatory worry that weigh on us during our waking lives. While these brain activities keep us alert and feeling attached to our bodies, tamping them down may account for the feeling of lightness, even floating above the body, which many near-death survivors describe.

The classic “death rattle” heard when the body can no longer clear fluids from the airway, often seen as a gruesome sign, is likely a signal of a transition to such a relaxed, unfettered state that the brain is no longer burdened with that task.

The emotional centers within the brain, however, are so deeply engrained in our functioning as humans that they remain on and engaged throughout much of the dying process. That aligns with descriptions of near-death experiences of vivid and realistic interactions with loved ones who have passed.

Even as death approaches and the body and brain are shutting down, there is good evidence to suggest that individuals are aware of their surroundings and can hear and feel the presence of their loved ones. These basic sensations persist in ways that can be a gift to dying individuals, ensuring they are not alone in their last moments — a most common fear.

Palliative care and hospice are stigmatized in our society because they are so closely associated with death, a topic that tends to make people uncomfortable. My attitude toward them has shifted dramatically since my diagnosis. With their focus entirely on providing comfort and maximizing quality of life — even in death — I think they play a most important role and intend to do everything in my power to engage in that process when I need it.

My maternal grandfather died two years ago at the age of 93, just before I learned I had cancer. He used to tell me he “wasn’t afraid of death, just all the things that [he] would miss.”

I think of him whenever something happens to me that would have sparked joy in him, and wish he was still alive. I’m not sure I believed him when he told me he wasn’t afraid of dying, but I do now. What frightens me today has little to do with my death and much more to do with the moments I’ll miss afterwards: anniversaries with my wife, birthdays and graduations with my son, watching my parents age and my brother and other loved ones continue to blossom in their lives.

I can’t say if this perspective will change again. I imagine it will. Death as an abstract concept is probably a lot less terrifying than staring it in the face. But I’ll remember what my grandparents said and try to move forward with the same kind of contented pragmatism they shared with me. In the interim, devoted oncology researchers, my particularly skilled doctors, and I are doing our absolute best to keep these musings firmly in the academic realm.

Complete Article HERE!

Psychologist Claire White on why we cling to the rituals of death

Even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.

“When you’re gone, you’re gone – just put me in the compost bin.”

California State University psychologist Claire White has heard it before – but doesn’t believe it. On the phone to the Listener, ahead of her trip to New Zealand as one of the guest speakers at the University of Otago’s Science and the Afterlife forum, she says even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.

“It is a universal way of thinking that transcends religious or ethnic belief – that their lives have meaning and purpose that continue after their death. Logically, atheists shouldn’t really care if you dump them in the trash can – but they do. There is a disconnect between the higher-level cognitive belief that there is no god and this kind of cognitive default – that there is something about me that makes me who I am that continues after I die.” This is what is called “psychological essentialism”.

“Even if we believe the soul transcends to heaven, we still go to a grave site because we really believe there is some essence of a person that continues after their death. One of the reasons tree burials and cremations have become popular is because the essence of the person is reflected in that tree or [where the ashes are scattered] along that sea.” Funerary rites acknowledge that legacy and help with the grieving process.

In reviewing funerary practices around the world, White’s team found 97% of the samples studied engage with the bodies of the dead. They touch them, wash them, dress them; they talk, they cry, they say goodbye.

“Which is all psychologically healthy. In the Western world, we are outliers. We are moving from a traditional model to this modern professionalisation of mortuary practices where you pay someone to come and prepare the deceased. There is little contact with the deceased, there is not a lot of emotion – it is done and dusted very quickly. It doesn’t really help the grief experience.”

Nor does it help us prepare our children for death, plan our own funerals or address pressing issues such as diminishing cemetery space.

“People don’t want to think about death – the death of themselves, the death of others. This is one of the main obstacles to top-down change from governments. We don’t plan, we don’t make living wills, children in the US are not educated about death – but how do we explain death to children when we don’t talk about it among ourselves?”

Complete Article HERE!

‘People have been frightened for me to tell their loved one they’re dying, in case they die quicker’

An intensive care doctor has written an honest book about her experiences.

NONE OF US want to end up in intensive care. But if we do, we should hope we end up with a doctor like Aoife Abbey.

The UK-based Irish doctor has written a book about what it is like being an intensive care doctor, exploring the emotional moments she has experienced. It’s a book that might just change how you think about death – and how you talk to your family about it.

After reading the book, Seven Signs of Life, you’ll want to sit down with your nearest and dearest to discuss what might happen to you should end up needing intensive care. Talking about death or serious illness is a taboo that still persists, but Dublin-born Abbey – who is in her mid-thirties – wants us to confront it.

“I appreciate people need to talk about death more because what I often say is, people come into intensive care, they don’t know they’re going to be there – it’s a surprise to everybody, they’ve had an accident or something,” she explains. “And you say to their family ‘what do you think they would have wanted?’ And the answer is ‘God, I don’t know. We haven’t talked about it.’ Why would you?”

This avoidance can lead to big questions being unanswered. “How would the patient feel about risking being alive and not being able to talk, how would they feel about organ donation? There’s lots of things people don’t discuss, and I think we need to discuss them more,” says Abbey, who graduated from the University of Warwick in 2011.

She advises people to have those difficult conversations with loved ones. “But what I would say is that it can often be difficult to imagine yourself in situations, so people might say ‘oh I would hate to have dementia. I’d rather just drop off.’,” she cautions. “When actually they don’t know that it’s true, because they’re not in that situation. So I think we have to be careful when we have conversations about life and death and what you’d like, in that we’re having general conversations and that we’re still not trying to pigeonhole people into certain decisions.”

Because often people will say ‘I would hate to live this way’ but actually then find an amount of joy and contentment living that way in the end because they have no other option. It is a difficult conversation.

“I guess in Ireland there’s always that thing of people say ‘don’t tempt fate’,” she says. Abbey and her family have had to deal with serious illness themselves. Her brother, Aaron, was a disability rights campaigner and died in October 2018. He was in and out of hospital a lot while the siblings were growing up.

“I’ve certainly had encounters where people have been frightened for me to tell their loved one that they are dying. And not just because they were worried that it would upset them emotionally, which is a very valid worry and I would worry the same thing,” says Abbey.

Because they would feel like that would mean they would die quicker. That crops up quite a lot, people say don’t tell them, because they’ll just give up.

‘It’s routine… until it isn’t’

The book was inspired by anonymous columns Abbey wrote for the British Medical Association, and the stories of the patients in the book are anonymised and amalgamated.

“I always loved intensive care and I loved it because there’s a lot of science there, you get to be specific, you get to care about the numbers,” says Abbey. “You have a lot of facilities, you know the nursing to patient ratio is one to one or one to two, you have all the numbers in front of you, everything is quite scientific.”

At the same time, this is juxtaposed against “the massive uncertainty of not knowing what somebody’s outcome is going to be”.

The level of pressure and responsibility builds the longer you work in intensive care.

There’s always an opportunity to ask for help. You learn as you go along and that’s how we do it, so it was never the case where I had to walk into an ICU and make loads of decisions.

She says that like everything in medicine, “all of this stuff is routine until it isn’t”. Indeed, in the book she details times when things did not go to plan. “If you intubate 100 patients and 99 of them are perfect, easy … it’s the one that’s difficult that’s the issue. So most things are routine, there’s always the potential for it not to be.”

When it comes to errors, the onus is on the doctor to make sure they learn from it.

“There’s nothing that makes you learn more than making a mistake,” she says. “You’re unlikely to ever do it again.”

The main thing is there is a culture, and it’s the right culture, where we don’t blame people when they make mistakes. And we’re supposed to recognise it’s a systems failure, and there’s lots of different explanations for why things go wrong, and it’s rarely one person’s issue; one person’s fault. But at the same time you have to figure out ways as a doctor to still accept and be OK with the fact also that you did make a mistake.

She includes in the book an incident where she missed something on a chest x-ray. It must have been nerve-wracking to write about when she first included it in a Secret Doctor blog post.

“It is still in numbers their most read blog. So it’s … I’m not going to say vindicated but there’s a need for that kind of discussion and people clearly had an interest or it struck a chord with them.”

She has never worked with the HSE, and describes the NHS as something that’s very much woven into national identity in the UK. “You have this service that’s free at the point of care, and people are very proud of it. It’s a very emotive topic,” she says, noting that “it doesn’t matter how angry the media is with the NHS at a given point, patients that I see behave the same. Most of them they are grateful, they’re frightened, they’re scared – they are just people, they are separate from political issues.”

Speaking of political issues, the big one for NHS workers and Irish emigrants like Abbey is Brexit. “If I wasn’t from Ireland I would have a huge amount of uncertainty and I’d be very worried,” she says. “You don’t really know what’s going on. You take so much for granted.”

But it’s not something that she lets take over her work. “I think you just learn to be very focused on what you’re doing. You have to let things in in the moment or else you’re not human, and you can’t engage with someone who’s being very emotional with you with a wall in front of you, because it’s not human and it’s not very nice for them either.”

She has learned to talk to her colleagues and friends about things that affect her, and not keep it bottled up. This is her eighth year in training, and in August 2020 she’ll be able to pursue a consultant job.

In the book she details very tender and emotional moments, such as when a dying man asks her to lift his head up so he can talk to her properly. It’s those intimate moments that leave an impact on her.

“There’s things you get exposed to but I guess in the moment it’s so much about what that person is feeling, you do feel a little bit humbled by the fact that you’re able to give them anything,” she says.

Because they’re going through something that is horrible. And you put it aside until you get home, or until you close the door of the room.

Seven Signs of Life is out now, published by Penguin Random House.

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