Dear Life: On Caring for the Elderly

Quarterly Essay #57

by Karen Hitchcock

In this moving and controversial Quarterly Essay, doctor and writer Karen Hitchcock investigates the treatment of the elderly and dying through some unforgettable cases. With honesty and deep experience, she looks at end-of-life decisions, frailty and dementia, over-treatment and escalating costs.

Ours is a society in which ageism, often disguised, threatens to turn the elderly into a 'burden' – difficult, hopeless, expensive and homogenous. While we rightly seek to curb treatment when it is futile, harmful or against a patient's wishes, this can sometimes lead to limits on care that suit the system rather than the person. Doctors may declare a situation hopeless when it may not be so.

We must plan for a future when more of us will be old, Hitchcock argues, with the aim of making that time better, not shorter. And we must change our institutions and society to meet the needs of an ageing population. Dear Life is a landmark essay by one of Australia's most powerful writers.

'The elderly, the frail are our society. They are our parents and grandparents, our carers and neighbours, and they are every one of us in the not-too-distant future . . . They are not a growing cost to be managed or a burden to be shifted or a horror to be hidden away, but people whose needs require us to change . . .' Karen Hitchcock, Dear Life

Genres: Nonfiction, Essays, Health, Sociology, Medicine, Politics, Australia

114 pages, Paperback

First published March 1, 2015

About the author

Karen Hitchcock is the author of the award-winning short-story collection Little White Slips and Dear Life: On caring for the elderly (Quarterly Essay 57) and a regular contributor to the Monthly. She is a staff physician in acute and general medicine at a large city public hospital, and has a PhD in English and creative writing.

Reviews

[Eliza · Rating 5 out of 5]

This is a challenging read, and asks more questions, rather than provide answers, to what are complex issues. As an aged care worker, reading this book has made me rethink my approach and my role, and I hope to be better because of it.

[Addie · Rating 5 out of 5]

'When patients say they want to die, our response should be: "Tell me, why." It is rarely because of pain, but it is often because of despair, loneliness, grief, and the feeling of worthlessness, meaninglessness, or being a burden.'

Some rambling thoughts:
This Quarterly Essay messed me up something bad. Maybe 'messed up' isn't quite the right phrase, but I was forced to confront a whole bunch of uncomfortable truths reading this. I don't agree with every single thing, and it's nothing I haven't come across before in my studies or through conversations with my friends who work in hospitals and aged care, but Karen Hitchcock's writing is powerful, and the examples she used were heartbreaking. So heartbreaking that I briefly considered a change in career direction even as I wait to hear back from a job I've been wanting for years. Beyond being professionally/academically informative, I was also confronted with various examples of what it means to grow old in the Australian context. Our attitudes towards the elderly are indicative of what our society values, and sadly, this does not reflect well on us. We are increasingly viewing people as decontextualised individual free agents in a free market, with free choice. What does this mean when it comes to responsibility, end-of-life care, suffering, and dying? Even further, I've been confronted with the overwhelming likelihood that one day, my flesh and heart may fail. Maybe my early 20s is too early to start thinking about the physical realities of aging, or maybe it's not early enough. I've been talking to a lot of older people lately, and they all make a point of reminding me that ageing is rough. Due to previous circumstances, I'd never thought that I might one day grow old. But I've generally made peace with the idea that I'll live out the fullness of the days that have been allotted to me, being content to be taken home at whatever time and in whatever way the Lord has ordained. But that means being open to the possibility (or, let's be real, the expectation) of pain, mess, frailty, grief, and loneliness - which is a reality not unique to future me, but applicable to the rest of us too. Frankly, this is scary. But it also puts things into perspective. This makes me wonder what we can do to better care for those whom society has forgotten and cast aside, because the young will always eventually become the not-young, and we need to have a good hard think about the policies we are creating and supporting. We can't let the cycle of neglect and dehumanisation repeat ad infinitum. Anyway. If you're looking to be confronted by the fact that you will eventually grow old and die, give this a read. Would recommend checking this out, even if you're not an allied health worker.

'We leave the world as we entered it - requiring assistance.'

[Ruby · Rating 5 out of 5]

A quite upsetting read... It horrifies me me that institutional ageism is so rife in the care of our oldest citizens, that people are denied treatment purely because of their age and so on. Karen Hitchcock makes some pretty compelling arguments and really points out the problems with the current trend towards rationing care. Having just lost someone close to me, I have had to challenge my own beliefs about death, and how distorted my ideal was, based on the rare but stereotype of the ideal "Hollywood" death, where the person closes their eyes and dies peacefully surrounded by loved ones. I read Katy Butler's book on the over treatment of frail aged people and was shocked by that, but this book gives an interesting counterpoint.

I also liked her critique of advanced health directives. My dad made an advanced health directive to die at home with minimal intervention. In the end, it was so much more complex than that, and he ended up changing his mind and going in to hospital. It was right for us. How can you know what sort of death you will want until It happens? It is just so difficult to predict how things are going to pan out. As for our family, we were truly grateful that he ended up being eased gently towards death surrounded by caring staff at a hospital. It freed us from the enormous work of practical care, so we could spend those moments entirely focussed on providing spiritual support and love. That is a job that is best for family.

We will all grow old one day. Here's hoping that we will become much more compassionate as a society and provide our seniors with a meaningful, fulfilling life until it is truly time for them to go. Thank you Karen. I will be telling others about this book, and may it lead the way for a new kind of aged care. This book meant a lot to me and resonated very deeply... It is one of many reasons why I am very seriously considering a career in public health, as a matter of fact.

[Curious Reeds · Rating 5 out of 5]

There is some déjà vu if you're a regular reader of Karen Hitchcock's column in The Monthly, but that's not really a bad thing. A powerful and important essay.

[Matt John · Rating 3 out of 5]

"The provision of health care in Australia remains mostly reactive: responding to a crisis, intervening too late, patching a patient up and shipping them off." p.31

[Mahnoor Asif · Rating 4 out of 5]

So the writer, Karen Hitchcock discusses the dark reality of our society that how we consider our elders as burdens. How we used to infantilize and patronized our elders. She discusses the concept of ageism, that is something prevailing in every aspect of our society. How our restrictions on older people affecting, sudden retirement, limitation to many things affect their physical and mental health. She penned down how no one wants to be posted in the elderly area. Plus she opposes the concept of euthanasia and discusses how we keep dreaming that death will be of “Hollywood type” where one closes the eye and die without any suffering. With the vivid case examples, she explains how over medication and lack of love and care affecting our elderly population and clarifies that just a simple turn of approaches and understanding can change the whole scenario. She tries to explain that we have to remove the deep-rooted ageism to make things better for our parents and grandparents.

“𝘞𝘦 𝘭𝘦𝘢𝘷𝘦 𝘵𝘩𝘦 𝘸𝘰𝘳𝘭𝘥 𝘢𝘴 𝘸𝘦 𝘦𝘯𝘵𝘦𝘳𝘦𝘥 𝘪𝘵- 𝘳𝘦𝘲𝘶𝘪𝘳𝘪𝘯𝘨 𝘢𝘴𝘴𝘪𝘴𝘵𝘢𝘯𝘤𝘦.”

[Kate Littlejohn · Rating 5 out of 5]

There is so much to think about in this important piece of writing. It’s challenging and confronting, and encourages you to rethink your definition of ‘quality of life’, what constitutes a ‘good life’ and what makes you ‘old’? Is it a number? Your physicality? Your ability? Mentality? Whatever it is, it’s not black and white. And as a society, as medical professionals and caregivers to our family members, it is imperative to remember that we are all individuals, we have lived varied lives, and who you are doesn’t suddenly change once you become ‘old’. Thank you Karen for doing what you do. For seeing your patients for who they are, and perhaps, most importantly, for *valuing* them as people.

[Annie · Rating 3 out of 5]

The invisible generation

[Elinor Hurst · Rating 4 out of 5]

I found this essay very moving and quite timely. I have felt uneasy for some time about the ageism in our society, particularly since going through the experience of my own parents dying protracted deaths in their old age, and my own creeping mortality. This essay articulates brilliantly why the economic rationalist approach to ageing and death is so troubling.

Old people have much to offer, and the fact that our social norms seem to deny this says much about our increasingly materialist, instrumentalist approach to life and humanity. We will all become old (if we're lucky), and that is something to celebrate, not bemoan. Karen Hitchcock's exoerience as a GP working with the elderly gives her many stories to tell, of old people she has loved (her grandmother), some who have feared death and wanted to fight against it, some who have been treated dismissively by doctors but by fortuitous humane intervention have gone on to live happily for years longer, and some who have felt useless and wanted to die due to social pressures. She sees beyond the wrinkly skin, chronic illnesses and frailties to the person beneath, and I love her for it.

We need to start treating the elderly with the respect they deserve; recognising that they have things to teach us and valued roles to play in society, and doing everything we can to facilitate that via integrated medical and community care which enables them to stay at home and out of nursing homes and hospitals as long as possible. And when they do end up in nursing homes and hospitals, to make sure that their special needs are met and they are treated with human dignity. Will this be more expensive for the public purse? Maybe, maybe not, but this sort of expenditure is far more valuable for society than massive funding of defence, tools of war and a bloated and counter-productive "war on terrorism".

[Astrid Edwards · Rating 4 out of 5]

Few Quarterly Essays will bring you to tears, but Quarterly Essay 57 Dear Life: On Caring for the Elderly might. It did for me.
Karen Hitchcock is clear on her goal: 'to strike a note of caution and to make explicit something that often remains unsaid and yet can be heard quite clearly: that the elderly are burdensome, bankrupting, non-productive. That old age is not worth living.'
The essay outlines exactly how we, as a society, approach ageing and the elderly. It is not a pretty sight. And then reminds us that we too will one day be the elderly.

[Ronnie · Rating 5 out of 5]

Hitchcock is a fabulous writer. I'm a great admirer of her column in the Monthly, and Dear Life is a rigorous and compelling essay.

I love this line, in the penultimate paragraph:
"The young rule the world; we stomp around doling out mean rations to the old, the machinery of our secure, quiet bodies purring to us the myth that we will be young forever."

[Olwen · Rating 3 out of 5]

I enjoyed this examination of the issues around health care for the elderly, written from a medical doctor's perspective. It will make you think more about your own demise too, and how to manage it better.

[Mikael · Rating 4 out of 5]

An essay which points out many of the problems which plague our view and treatment of the elderly and how they are often seen as a burden on hospital resources and on the economy, rather than a complex individual in need, who may still enjoy and lead a fulfilling life despite their old age and maladies. It sadly shows how our grandparents are all too often poorly treated and overlooked in our hospitals and by our health care system and in many cases shunted away into some neglected dark corner as a result of our doctors and nurses being overworked and overextended; due to the current pervasive negative view and stigma of the elderly within society and our health care system; and the system itself, relegating the care of the elderly to one of the least important health care roles.

It seems unlike in countries such as Japan, we haven't as yet spent the necessary time and effort attempting to answer many of the difficult and important questions that surround the final years of our lives, nor have decided to invest the necessary time, money, and resources needed to ensure a meaningful old age and one free of isolation for our most fragile. Instead, we either choose to palliate the problem, or pass it on to someone else (usually a nursing home).

It's really quite sad, and I hope things have changed since this essay was written, but in light of recent experiences, it appears there's still some way to go. It seems clear that one of the simplest first steps that can be made in order to improve the current treatment of the elderly, is to proceed based on the recent history, wishes, and ailments of the patient, rather than immediately opting for palliation out of convenience to the hospital or simply as a matter of habit. Seems obvious, but after having read this essay, clearly it's a step which is still often ignored.

An informative essay, which will surely be a worthwhile read for those coming face to face with the decline or advancing years of a loved one.

[Andrew McMillen · Rating 5 out of 5]

A brisk read about the heaviest topic of all, 'Dear Life' is written with passion and compassion in equal measure. Its author, Karen Hitchcock, is a physician in acute and general medicine at a Melbourne public hospital. Moreover, she is a sharp writer, as readers of her regular column in The Monthly will attest. For years in that space she has enlightened, amused and moved us with short stories from inside the medical profession, a cloistered community for whom strong communication with outsiders is rarely a virtue.

It is to Hitchcock’s credit that she bridges that difficult gap between specialists and laypeople with a style and grace that is redolent of renowned medical communicators Oliver Sacks and Atul Gawande. With 'Dear Life', Hitchcock shows how comfortable she is with the long-form essay by writing a com­pelling account of how this country treats its elderly and dying, and how we may better ­perform this task. It is a masterful, timely achievement that will prompt much soul-searching in its readers and conversations among their friends and family, for this is one topic that cannot be avoided. One day death will claim us all, and it is important we prepare ourselves and our loved ones for this, emotionally, spiritually and physically.

My grandfather was in the final stages of ­terminal cancer as I read 'Dear Life', and at times it became hard to see the pages through tears. He died in hospital on Sunday, March 15, aged 82. His health had declined considerably since I last saw him at the beginning of the year, in a different hospital. As Hitchcock writes, his case is typical of end-of-life care: while surveys state that the overwhelming majority of Australians wish to die at home, only 14 per cent of the population achieve that wish. The reality is most elderly people require constant medical attention in their final weeks and hospitals ­provide the best locale for such care.

The author is no stranger to this reality, ­having watched her father and grandmother die in hospital and hospice, respectively, and having felt the terrible burden of having to make ­decisions about their treatment as the sole medically trained member of a non-medical family. “A good death — an ideal death — is pre-planned, perfectly timed, excretion-free, speedy, neat and controlled,” she writes. “Birth is not like this. Life is not like this. And yet we think we have a right to ask it of death.”

The narrative of 'Dear Life' is split into short chapters that are peppered with references to research papers and contemporary articles in publications such as The New Yorker, The ­Atlantic and The Age. At no point does the ­author become bogged down in technical ­jargon or statistical minutiae. Her tone remains measured and warm throughout; perhaps she imagined writing it for her non-medical family. It is a wise stylistic decision, as there is much more to be gained from speaking plainly about this matter than by muddling the message with too much science, as it were.

Still, Hitchcock frequently impresses with her precise turns of phrase: “It is difficult for us to think about our own death, except as a kind of puppet show, with ourselves watching as a spectator,” she writes early on. Later, when recalling how her grandmother stopped breathing in her arms, she concludes the anecdote with this quietly devastating sentence: “And then I can’t tell you how still she became.”

'Dear Life' flits between wider societal ex­aminations of attitudes towards death, medical perspectives on treating the elderly and Hitchcock’s anecdotes from the field, caring for her patients and occasionally going beyond the call of duty by following up with the frail and lonely once they have left her workplace. These vivid vignettes are among the essay’s standout moments, particularly the case of Fred, an 84-year-old man who arrived in Hitchcock’s hospital soon after the death of his wife and dog, utterly miserable, essentially requesting euthanasia. Through her kind words, her persistence and optimism, the doctor turned her patient around; two weeks after his discharge, he sounded exuberant on the phone, having taken a retired show dog into his care under the proviso that it would be returned to the breeder should anything happen to Fred.

Hitchcock’s doubt, pain and empathy are all on display throughout 'Dear Life'. One gets the impression that the author has an impeccable bedside manner and that she is just the type of physician you’d wish to care for you at any stage of your life, but especially near the end, where the gap between palliative care and a few extra years of life can be as small as a written instruction by a rushed, dismissive doctor who sees all treatment of the elderly as inherently futile.

Yet Hitchcock is not prescriptive in this text. She acknowledges the essay does not offer ­simple solutions. “My chief aim,’’ she writes, “is to strike a note of caution and to make explicit something that often remains unsaid and yet can be heard quite clearly: that the elderly are burdensome, bankrupting, non-productive. That old age is not worth living.” This duality of opposing professional views — empathy and despair for the plight of the aged — is the essay’s central driving force, and it is not wrestled with lightly. Towards the end, Hitchcock writes:

"The young rule the world; we stomp around doling out mean rations to the old, the machinery of our secure, quiet bodies purring to us the myth that we will be young forever. And, one by one, my patients retreat to small nursing-home rooms and then slip away. Soon they will all be gone. And then it will be your turn and mine to sit in cells and drink the weak tea they hand out at eleven and two, hoarding biscuits in our fridges. Not dead, yet."

In 'Dear Life', Hitchcock has laid out her most important work to date in the type of clear, rational, respectful prose that the topic demands. As much as our natural instinct may be to avert our gaze from death, to push it from our minds at every opportunity, this essay is inspirational and aspirational in its scope. It is highly recommended to all those who hold life dear, and especially to those whose professional lives are devoted to helping us through illness and death with dignity.

(This review was originally published in The Weekend Australian on 21 March 2015: http://www.theaustralian.com.au/arts/...)

[Naomi · Rating 5 out of 5]

In response to Hitchcock’s essay: I think this a timely and thorough approach to the subjects of aged healthcare, dignified dying, personal autonomy, social responsibility and ageism. It is a sector in dire need of large reform. I highly recommend we all read this essay start discussing what can be done.

[Tony Balfour · Rating 5 out of 5]

A brilliant little book on aging, illness and death. It'd much more positive than that might sound. Made me think very differently about what it means to be old, get old, and live a full life. Written with common sense, warmth and a willingness to have an uncommon opinion.

Everyone should read it.

[Dominique McConnachie · Rating 4 out of 5]

Interesting and thought-provoking. A well written, reflective and honest piece addressing an important topic that should be discussed more. 'Even if - for now - we believe that we would rather be dead than demented, rather be dead than dependent; rather be dead than grow old.'

[Mathilde Wurm · Rating 5 out of 5]

Superb in every sense. Thoughtful and insightful and I think we should all read this (really we are all already living it), most especially anyone working in healthcare. I feel grateful for the insights Hitchcock offers, especially as I prepare to occupy a role within the system myself.

[Diane · Rating 5 out of 5]

This was such an uplifting and enlightening book. Essential reading for anyone who cares for elderly people, a relative or patient.

[Kangelani · Rating 5 out of 5]

My copy is going to the Minister for Ageing in the mail tomorrow.
Says it all.
We all get to the end of life, but some politicians don't believe they will.

[Jodie Jones · Rating 5 out of 5]

Brilliant. Thought provoking.

[standingontheshouldersofgiants]

A different perspective to those I've read in the past; worthwhile.

[MargCal · Rating 5 out of 5]

I'd give this 10 stars if I could!
This essay is essential reading for the 'older' person, and all who aspire to be elderly one day!
Also essential reading for those who care for older people, be that care given by family, friends or paid helpers and clinicians, at home, in hospital or nursing home.

I was inspired (definitely the right word!) to read this after hearing Dr Hitchcock speak on radio about this essay, her life and experiences, medical and non-medical. She was so alive, caring, amazing, inspiring. I want a doctor just like her when I am seriously ill and/or nearing the end of my life.
She argues so strongly that older people are "not" a burden, that they need age and health appropriate care - as everyone does.
She is very persuasive that very often patient choices are not choices at all, that we are 'guided' down a "least cost" path to see ourselves as burdensome so that we convince ourselves, against or preferred wishes, that we should take the death-hastening path.
She gives very limited support to advance care directives / written treatment plans. If we have them they should be reviewed regularly (she suggests monthly!) because what we think now might not be what we want later. It is like "plac[ing] bets before we even know what kind of race we're betting on". (p.50)

It has made me revise my thoughts about writing down what I want sometime in the future in unknown circumstances. Instead, I have bought copies of this essay for my daughters who might have to make choices when I'm not able to. It sets out principles that can be used in any health care situation.

Although this is written in an Australian context, we are influenced by practices in the US, UK and Canada so this is essential reading for people from those places too .... compare and contrast, if you like.

I simply can't recommend this highly enough!

[Jennifer · Rating 5 out of 5]

An excellent article. A lot of what she described I saw/experienced while I was an ambulance officer. It is one of the saddest things ever to listen to a person who has lived a full, caring and nurturing life, who has always there for others saying that the last thing they want is to be burden to others. When did caring for them move from being our privilege to a burden? A person may have only 6 months of bedridden life left, but who is to say that won't be one of the most fulfilling and important 6 months for that person and their friends and family in terms of the final stage of these relationships? When I become old and infirm, will I hold onto my independence so tenaciously that I am prepared to forsake every other good thing about my life? It makes you ask questions about your life, what you can give, how you give it and more importantly what and how you take from others.

[Dylan · Rating 5 out of 5]

As ever Karen Hitchcock delivers a thoughtful and thought provoking insight into care for the elderly, end of life care and dying, things we must all face ourselves professionally and personally. The intimacy of death means it can never be reduced to a few variables on an app to decide who should receive what sort of medical treatment and an ageing population requires society to change if the old are to be treated with dignity and society enriched by their contribution instead of shamed by the manner of their passing. I lost my mother about a year ago after a long period of illness and reading this was sometimes a tearful experience as well as an instructive one.

[Sue · Rating 5 out of 5]

A most excellent book, and one every person should read preferrably before middle age. The author has genuine compassion for people, and sees that respect and dignity should be accorded to the aged members of our world.
The important thing all of us need to remember is that we won't be young forever, and that old person you see, will be you in only a number of years.

Karen Hitchcock, in this book, writes: "A good death - an ideal death - is pre-planned, perfectly timed, excretion-free, speedy, heat and controlled. Birth is not like this. Life is not like this. And yet we think we have a right to ask it of death."

[Kate · Rating 4 out of 5]

As I expected - a sobering topic, witten with a compassionate voice and with a clear vision for the way our wider society needs change to accommodate the elderly, especially those who are ill. Karen Hitchcock writes persuasively the personal and professional experience of a staff doctor in a city public hospital.

[Maureen Helen · Rating 5 out of 5]

This is an essay on ageing and illness; treatment of the elderly in hospitals; and end-of-life decisions. Karen Hitchcock is a physician and an award-winning writer. She writes with compassion and warmth. For a full review, see my post at http://maureenhelen.com/karen-hitchco...

[Rich · Rating 5 out of 5]

Didn't think I had any interest in this topic, but this is compelling, original and well argued.

[Trish · Rating 5 out of 5]

Essential reading for anyone who may experience ageing and/or death.