Death and Dying

The MIT Press Essential Knowledge

by Nicole M. Piemonte, Shawn Abreu (Contributor)

An examination of the contemporary medicalization of death and dying that calls us to acknowledge instead death's existential and emotional realities.

Death is a natural, inevitable, and deeply human process, and yet Western medicine tends to view it as a medical failure. In their zeal to prevent death, physicians and hospitals often set patients and their families on a seemingly unstoppable trajectory toward medical interventions that may actually increase suffering at the end of life. This volume in the MIT Press Essential Knowledge series examines the medicalization of death and dying and proposes a different approach--one that acknowledges death's existential and emotional realities.
The authors--one an academic who teaches and studies end-of-life care, and the other a physician trained in hospice and palliative care--offer an account of Western-style death and dying that is informed by both research and personal experience. They examine the medical profession's attitude toward death as a biological dysfunction that needs fixing; describe the hospice movement, as well as movements for palliative care and aid in dying, and why they failed to influence mainstream medicine; consider our reluctance to have end-of-life conversations; and investigate the commodification of medicine and the business of dying. To help patients die in accordance with their values, they say, those who care for the dying should focus less on delaying death by any means possible and more on being present with the dying on their journey.

Nicole M. Piemonte, PhD, is Assistant Dean for Medical Education at Creighton University School of Medicine in Phoenix. She is the author of Afflicted: How Vulnerability Can Heal Medical Education and Practice (MIT Press).

Genres: Death, Philosophy, Biology, Medicine, Nonfiction

248 pages, Paperback

Published September 7, 2021

About the author

Nicole M. Piemonte is an Assistant Professor in the Department of Medical Education at Creighton University, School of Medicine, and Academic Consultant at St. Joseph's Hospital and Medical Center, Phoenix.

Reviews

[emily · Rating 5 out of 5]

‘Death is momentous. Its power reverberates throughout so many of our cultural, religious, and professional practices. To deny the existential gravity of death and loss is to deny one of the few things in this life we all share. Perhaps when we start to acknowledge the shared vulnerability of being mortal, we will begin to draw toward one another when we need it most.’

Carted this book with the assumption that it might be filled with discussions about the philosophy of death, and/or the much too ‘clinical’ (hah, excuse the pun) relationship we have with ‘death’. But was surprised to find that it is mostly about ‘palliative care’ – the care for people who are in a ‘near death’ condition or having illnesses that render/force them into a state which makes them unable to care for themselves. ‘Palliative care’ includes not just the care given to them while they are ‘conscious’, but also the preparation/transition – from ‘life’ to ‘death’ basically.

‘Most of the time, what those who are dying need most from us is our presence—our willingness to come alongside them, listen to their hopes and fears, and help them know they are not alone. And this kind of presence can be healing for those who are dying as well as those who are there with them…We must acknowledge that they too suffer in a system that denies the human experience of caring for others and minimizes the significance of death and dying.’

A friend and I have been occasionally indulging in an assortment of ‘euthanasia’ related jokes since late last year that we just can’t seem to shake off; excuse the (usual) dark humour. It all started because one of his dogs had to be put down (and/but the first few times he took him to the clinic for the procedure, the vet hesitated and/or was suddenly not available; so he had to keep postponing it, but it ‘happened’ eventually after too many fails (and by the time the dog was ‘euthanised’, he had already suffered too long, and was not even able ‘move’). To clarify, we didn’t find that ‘funny’, but we later found some ‘comic relief’ in our thoughts about ‘euthanasia’ – that no longer has anything to do with his dog. But in all seriousness – when I think back about the people in my life who had ended their own lives on their own – I can only wonder – why did it have to be done in such ways? How is it fair/just that that is considered a crime? Wouldn’t it be a more ‘human’ thing to not think of it as one? And why do they have to be denied a comfortable ‘exit’? Sure, it’s a hard question/discussion to stomach, but especially because of that, I think it’s worth thinking/reading about. I think the whole problem I’ve just brought up has very similar sentiments to Piemonte’s argument about the importance of ‘palliative care’.

‘What those who are dying need most from us is our presence—our willingness to come alongside them, listen to their hopes and fears, to help them know they are not alone.’

Piemonte argues that a patient and/or a person should not be denied when they choose ‘death’ instead of to go on suffering physically. I think this could extend to invisible ‘pains’/suffering. Just because we don’t see it or believe someone else’s words, it doesn’t mean it doesn’t exist – it doesn’t discount that person’s experience at all. Only very recently was ‘voluntary assisted dying’ made legal in all Australian states (even though it is rather ‘flawed’, and certainly not made easy/accessible enough still; VICE has a video on ‘Euthanasia Loophole’ which simply goes on to prove how ridiculous the illegality of ‘euthanasia’ is). When I was a kid, my godmother used to take me to nursing/care homes quite often because she used to do ‘voluntary work’; and I’d wait for her to finish work. What I am trying to say is that seeing the way they (not even being able to ‘live’) but just being ‘kept alive’ each day (more often than not against their will) just didn’t feel ‘right’(even at the time, if not then especially at the time) to me. The worst scenario is when they can’t even express what they want anymore. I think it’s cruel to deny their wishes if/when they can express them. Not just with the elderly; but hopefully this will become a more extensive and inclusive ‘privilege’ in the near future. It is even absurd to consider it a ‘privilege’ (just because according to the ‘law’, to ‘die’ on our/your own accord is not ‘legal’).

‘In her book Cultivating Humanity, philosopher Martha Nussbaum reminds us that “compassion requires a sense of our own vulnerability to misfortune.” “To respond with compassion,” she says, “I must be willing to entertain the thought that this suffering person might be me.” While we all are tempted to avoid negative emotion and minimize existential suffering, doing so gets in the way of our ability to connect with others when they need it most.’

I don’t believe that one can ‘really’ stop someone from leaving if they really want to go; and felt like that is the best for them. Actually, I don’t believe that we should ever force someone to be in a situation/circumstance they don’t want to be in. Are we not just being incredibly presumptuous and cocky? Thinking that we know what’s better for them? All we can do is to be there for them until the end. But why can’t we have a farewell party to celebrate all the love we had/shared; say our goodbyes in a far more ‘human’ and comfortable way? It’s obviously something that can be done quite easily if the ‘law’ permits it. Why did they have to resort to such ‘primitive’ and violent exits just because the ‘law’ dictates it? It’s just that when I think of the people in my lives who had left on their own, by their own choice, earlier than I would have preferred, I can’t help but wonder why is it that their last moments have to be so ‘isolated’ and violent because of essentially ‘legal’ issues? How is it ‘humane’ that we allow so many people to go through the same process? It’s a difficult matter to talk about, but an important one for sure. Piemonte quotes Sandra M. Gilbert in her book – which was definitely a surprise (as for me, I’ve always associated Gilbert with Jane Eyre because I, like many have probably done – had spent a literarily intimate weekend with The Madwoman in the Attic: The Woman Writer and the Nineteenth-Century Literary Imagination when I was writing an academic essay on Charlotte Brontë’s novel). I guess I’ll have to spend another weekend with Gilbert’s other book about ‘death’ instead of ‘feminism’ (that she’s more known for).

‘Facing death is hard. And it’s hard for all of us. As Irvin Yalom remarks, “It’s like trying to stare the sun in the face: you can only stand so much of it.” As a result, we’ve devised all sorts of things to shroud death’s painful glare—religious narratives, biological and evolutionary explanations, myths, fables, and medical interventions. Even our medical interventions aimed at making death less painful and frightening can serve to conceal death’s terror.’

‘English anthropologist Geoffrey Gorer, for example, garnered international attention with his 1955 essay “The Pornography of Death,” which claimed that death had become just as shameful and unmentionable as sex had been during the Victorian era. Death as a normal life process had been made invisible and was replaced with objectionably obscene or violent representations in film and television.’

Like I’ve mentioned in my intro, my impression of the book before I had read any of it was that it is one that might lean towards something more philosophical. But having read it, I realised that it is only partially so. The freedom to choose your own ‘death’ which in a way is akin to the decisions we make about (our own) ‘life’. But the ways of ‘dying’ that is deem appropriate/socially acceptable are so limited for various reasons – like the legality of it all, and/or religion(s). Piemonte’s book is an essential read because ‘death’ is always around us, but we always revert our gaze because either that is what we’ve learned to do by observing others, or – we associate it with something to be afraid of. Wish I could explain it better, but Piemonte does it so much better in her book. She even included in the later chapters of the book about how usually when a person is offered a choice (in the case mentioned, a ‘life-ending prescription’), they don’t necessarily ‘go through with it’. But what the ‘offer’ essentially gives to the person – is comfort.

‘Of all the things I do, I love that moment the most…when I tell a patient they are now able to have an assisted death if they want one, it’s probably the most therapeutic thing I can do. Immediately their suffering goes down; immediately they feel empowered. And it doesn’t matter what happens after that, to some extent. They already feel better; they’re going to do better. And if they die of a natural cause, they almost don’t care anymore because they now know that they can do this. It’s very, very satisfying to them, and I love that.’

‘Watching this pandemic unfold has only intensified our belief that discussing, determining, and documenting our values and wishes for how we want to die is one of the most important things that any of us can do. We need a health care system that promotes this belief, one that encourages health care professionals to engage in these conversations before a crisis arrives and helps patients and their loved ones identify what would matter most to them if the end were to come sooner than they’d anticipated. Perhaps as we all experience the tragic losses that COVID-19 has brought with it, we will come closer to creating such a system. Perhaps all this loss presents us with an opportunity to recognize the importance of living and dying in a way that reflects who we are…we might begin to ask ourselves what it will take to make our lives—and our deaths—more meaningful.’

The book concludes neatly with Piemonte’s thoughts about the deaths caused by the current ‘pandemic’; and how it affects us (or not). In every way, this is a brilliant book that I’m very glad to have ‘accidentally’ read.

[Dr.Madan Bhimsen Jadhav · Rating 4 out of 5]

Being a neurological surgeon, death is a 'not so uncommon' experience for me. And I have experienced various faces of death. So I had a certain kind of expectations from this book. But frankly, I didn't get what I expected. Book is more about hospice care of terminally ill and old patients. It says, "if death is certain, allow them to die peacefully rather than harming them with hospital procedures and injections."

[Notael Elrein · Rating 5 out of 5]

A simple, little book about the US healthcare system, it is part of the death-positive movement which encourages conversations around death and views it as a natural part of life without its avoidance. This book argues for honest conversations when people are expected to die so that they could plan their exit better and not delay palliative therapy or hospice. They should be mentioned earlier so that the patients could arrive at them sooner and not die at the hands of strangers. It discusses how death became a more of a public spectacle rather than an individual endeavour, the way it became more of a business rather than something experienced in the privacy of one's home. Doctors trained with cadavers and fed pure information without many courses on empathy and care if any at all usually provide little help comforting their patients. A lot of money goes into healthcare, but it’s distributed badly and a trillion of it went to total waste.

Disappointingly despite it mentioning corruptive and profit driven incentives from the pharma industries, it doesn’t mention nutrition at all despite veganism being able to treat a lot of the diseases mentioned without the need for the people to die prematurely.

I expected this to have different subject matter and lean more into death itself rather than the medicine side of things, this is the only MIT book that the library had, I did not know what to expect. I feel like I am lately collecting information about all sorts of death, other, outcast movements. It feels good to accept the void this way by collecting this pure information and combining it. A lot of these movements could use the other movements help because a lot of them are related and build on each other. This reminded me of antinatalism since death aid was mentioned and how it should be offered to patients because even if they don’t use it it makes them feel that they are more in control of themselves and their destiny, it reduces needless helplessness.

I feel like there are way worse problems out there, but it is definitely not nice how we treat people about to die and this should be one of the things that society should care more about. The author provides a personal experience with death and explains how you can treat a patient with information and yet view them compassionately and care for them as a fellow human being at the same time.

[Molly Roach · Rating 4 out of 5]

Death and Dying by Nicole Piemonte and Shawn Abreu

This was a heavy one. The authors here are explaining palliative and hospice care and pushing for them to be taken as the essential practices they are by mainstream medicine. They push for enhanced funding for hospice care. They highlighted the need for palliative care to be more than just a last resort and for all specialties to be willing to have hard conversations about death and dying with their patients. They also went over the need for death & dying to become collective again - meaning something that is talked about freely and those who are dying AND those who are grieving are cared for.
While they do briefly mention disparities in care based around race and class, I’m bumping the book down to a 4 star read because I think a piece like this needs more of a breakdown by identity.
4/5⭐️

(That’s my review of the book. Below is a personal note on my life. CW for parent death, surgery, pain)
As someone who watched a parent die, this book hit really hard for me. Sometimes I think about the time my mother spent dying and all the procedures she went through despite her cancer being incurable. I think about how she spent the last few weeks of her life in a bed in constant pain. I imagine how differently those last few weeks could have played out had her doctors not pushed so hard for complex surgeries and experimental treatments. I imagine getting to spend her last few days just being with her as her daughter, and not a burnt out caregiver. I imagine what it would’ve been like to have a healthcare system that cared about the whole patient and not just their body parts.
I think about a lot of things - this book brings me hope that there are people doing the work to make these thoughts someone else’s reality - and I want nothing more than for no one to ever lose someone they way I lost my mom. I implore anyone in any caregiving profession to read this book, or at least search out some articles on palliative care and hospice. — M

[Mike Ferm · Rating 5 out of 5]

An important contribution to the field of medical literature and an excellent overview of the current status of palliative medicine in the United States. People from all walks of life can learn from this book as death ultimately touches all of our lives and knowing more about the health care system and availability of options will only leave us better prepared when the situation arises. Pre-medical and medical students however would especially benefit from reading this book and acquiring a newfound appreciation for aspects of “being a doctor” that are often not realized until experiences with patient death are forced upon them later in their careers as residents. As a physician myself, I felt that many of the stories in the book reflected experiences I have had in my own practice where I found myself frustrated as I realized that our medical team had not communicated effectively or early enough to patients and families about the possibility of death or explored their feelings and wishes about the topic to inform our care.

[Chris M. · Rating 5 out of 5]

This is a fantastic, short and concise read about the role of death and dying in U.S. Healthcare. I would recommend this to anyone, especially if you work in healthcare. The second half of the book is the strongest because it identifies the systemic problems in healthcare that lead to poor outcomes. Among these were the clinical and systematic approach most medical education programs have in their teaching. These programs teach students to be good clinicians, but don't provide any tools to handle the human component of medicine. Also, the commodification of healthcare also makes the relationship with patients more disconnected.

[Daniela Diaz Caro · Rating 4 out of 5]

I plan to share this book with friends who I know are a part or plan to be in the medical field. The author provides a good description of the field of palliative medicine and how the medical field in the US is lacking in acknowledging death's existential and emotional realities.

[Anatolii Belikov · Rating 3 out of 5]

I was interested in the topic, but not in the downsides of US healthcare system. The authors spent too much time on the latter one.

[Emma Kantrowitz · Rating 5 out of 5]

Must read for anyone who is going to die someday. Must MUST read for anyone who works in healthcare

[Reader · Rating 5 out of 5]

SO IMPORTANT