A Good Life to the End: Taking Control of Our Inevitable Journey Through Ageing and Death

by Ken Hillman

Overview

A huge majority of people at the end of their lives want to die at home, but only a small number manage to do this. This vital book asks why. Many of us have experienced an elderly loved one coming to the end of their life in a hospital—over-treated, infantilized, and, worst of all, facing a death without dignity. Families are being herded into making decisions that are not to the benefit of the patient. Professor Ken Hillman has worked in intensive care since its inception. But he is appalled by the way the ICU has become a place where the frail, soon-to-die, and dying are given unnecessary operations and life-prolonging treatments without their wishes being taken into account. A Good Life to the End will embolden and equip us to ask about the options that doctors in hospital should offer us but mostly don't. It lets us know that there are other, gentler options for patients and their loved ones that can be much more sympathetic to the final wishes of most people facing the end of their lives. An invaluable support for the elderly as well as their families, and a rallying cry for anyone who's had to witness the unnecessary suffering of a loved one, A Good Life to the End will spark debate, challenge the status quo, and change lives.

Product Details

ISBN-13:	9781760294816
Publisher:	Allen & Unwin
Publication date:	10/01/2019
Pages:	304
Product dimensions:	6.00(w) x 9.25(h) x 0.90(d)

About the Author

Ken Hillman is an intensive care specialist who is a Professor of Intensive Care at the University of New South Wales, the Foundation Director of The Simpson Centre for Health Services Research, and a member of the Ingham Institute of Applied Medical Research. He is a pioneer in the introduction of the Medical Emergency Team. He is the author of Vital Signs.

Read an Excerpt

CHAPTER 1

The last six months of my mother's life

Dr Novak was a Jewish refugee imprisoned in Auschwitz during the Second World War. He looked after my grandfather in the last years of his life, visiting often when my grandfather was ill and finally explaining to his wife, Nellie, and his daughter, my mother Margaret, that he was dying. As a result, my grandfather died peacefully at home in 1959.

There didn't appear to be any fuss and, as far as I could ascertain, my grandfather didn't suffer. My little brother and I were told that our grandfather was dead and was lying in his bed. I don't remember ever hearing about death before. People were sad and my brother and I thought it was all a bit creepy and kept right away from his room. In those days, children didn't go to funerals, but I remember at the wake afterwards the brave faces and funny stories about his life.

Most kids' grandfathers died at home back then. What the family doctor carried in his bag was not much less than what was offered in hospitals. The diagnostic tools, such as stethoscopes, percussion hammers, thermometers, blood pressure machines, otoscopes for looking in ears and ophthalmoscopes for examining eyes were the mainstay of equipment for both the family doctor and for use in the hospital. Hospitals could conduct basic pathology tests and X-rays but the family doctors also had access to these.

The range of drugs was limited — antibiotics, sedatives and pain relief — and, again, these were available in both settings. Only a few surgical procedures were available in hospitals. Anaesthesia could be dangerous and was usually delivered by nurses or junior doctors. Limited surgery was also carried out by the family doctor. I had my tonsils removed under ether on a table in the family doctor's surgery.

Things began to change in the 1960s. The body was divided up by specialists into various '–ologies', such as neurology, cardiology and gastroenterology. Similarly, surgeons began to specialise. The days when the one surgeon performed abdominal surgery, thoracic surgery and a bit of orthopaedic surgery all in the one morning were drawing to a close. Anaesthesia became a separate specialty with the same rigid training requirements as surgical training. This enabled prolonged complex surgical procedures to be undertaken with a previously unknown level of safety. Intensive care units gradually developed in hospitals, facilitating the prolonged and specialised recovery after complex surgery. Other specialties also developed, such as immunology, oncology, geriatrics, palliative care and invasive radiology. Sophisticated imaging and other investigations enabled us to investigate abnormalities with greater accuracy.

It all happened in hospitals, and soon there was a huge gap between what a family practitioner could offer compared to an acute hospital. Hospitals were no longer places where you went to rest while you got better or didn't. They became the self-proclaimed flagships of health care. This was reflected in films at the time. When someone was struck down with an illness or injury in the street, a bystander would shout, 'Quick, call a doctor!' This was soon to be replaced by, 'Quick, call an ambulance!'

My career as an intensive care specialist started a decade or two after the explosion in hospital technology began. Even so, these were early days for the specialty. I was one of the first directors of intensive care to be appointed in London. Those were heady days. I thought the possibilities for prolonging life were infinite. I had life support machines and powerful drugs. My specialty was essential for the complex surgery that was being undertaken. These patients were too ill in the postoperative period to return to the general wards. I could also keep other patients alive while they made themselves better or until our treatment took effect.

In those days, I had six intensive care beds. I now work in a unit with forty beds at a cost of at least AUD$4000 per patient per day. But, it's not just the number of intensive care beds that has changed; it's the nature of the patients we treat. Most of them are over the age of sixty years. Many are in their eighties or nineties. And many of those are in the last few days or weeks of their lives.

My mother, Margaret Hillman, was admitted to a nursing home at the age of eighty-three years, after fracturing her hip. She tried unsuccessfully for one day and night to live independently in her own home but this was not possible. Accommodation was arranged in an aged care institution. She knew this was her only option but was never comfortable living there, despite the excellent care provided by all the staff.

Margaret was cognitively alert until a few days before her death. She had little patience with the other elderly people and thought that if it wasn't for her body physically giving out, she could live a 'normal' life and do 'normal' things.

During the last six months of her life she was admitted twenty-two times to different hospitals for different conditions. She had a urinary catheter inserted at the time of her hip operation and, unfortunately, she could never cope without it. Thus, many of the admissions were for infections of her bladder. Plastic is foreign to the body and when inserted into the bladder or veins, for example, it bypasses the body's first line of defence and makes people prone to infection. The older you are, the more vulnerable you become to infections.

These sorts of infections are easy to treat. For a twenty-year-old with a urinary tract infection it would mean antibiotics and a day off work and then they'd be back on their feet. For an elderly person it is potentially fatal, requiring not only antibiotics but often intravenous fluids and sometimes powerful drugs to support the blood pressure and perhaps admission to an ICU.

Margaret also developed many other problems, including small fractures in her vertebrae, requiring regular narcotics to control the pain. She required a pacemaker and an increasing number of tablets to control blood pressure, reduce cholesterol and to limit her palpitations.

She did not have the same dignified and comfortable death as her father. She suffered despite the pain relief, her mobility declined until she couldn't make her own way to the dining room. She was lonely and sad and she did not want to be continually taken to the hospital.

During this time, I played the role of the son, not a doctor. I didn't want to interfere in any way. Eventually one of the many specialists who had cared for her during her hospital admissions came to see us on her last admission to hospital and explained that she was dying and that to continue to treat her was cruel and to little avail. He said it was time to let her go.

My daughter, Emily, saw her that night and I visited the next morning. Margaret was drowsy with pain relief but still cognitively intact. She died peacefully the next day.

What did my mother die of? Old age. But you are no longer allowed to write that on a death certificate. You need to randomly allocate one of the many conditions my mother had as the cause of death and, similarly, allocate all the other conditions that may have contributed to her death. Because the heart stops when you die, it is common to put the primary cause of death as cardiovascular failure. Hence, it is the most common cause of death in the elderly. When you are elderly and frail you just fade away and your heart stops as part of that fading.

* * *

'What is wrong with me, Ken?' my mother would constantly ask of me in the last six months of her life.

Medicine is based on 'the diagnosis', the elusive concept that we spend our undergraduate years learning about. This is relevant if you are dealing with a younger person who has one thing wrong with them. Similarly, hospitals are the perfect place if you have a single diagnosis which can be attended to by a specialist in the offending organ. Unfortunately, this rarely happens — especially in the elderly, like my mother: people who are naturally and normally approaching the end of life and which all the specialists, interventions and tablets cannot cure. This is not to say that we shouldn't care. There are many ways we can support people who are ageing. First, and most importantly, we could begin to be honest about the limitations of modern medicine. Then we could provide things that really matter, such as facilitating the network of friends and family to act as carers; providing real assistance to them; ensuring their house is clean; that they are washed and assisted to mobilise; and that food is provided. These are not medical matters.

It may be better to look at the elderly near the end of life from the patient's perspective rather than dividing up the body into its various organs and giving each age-related deterioration a medical name. The word frailty is becoming useful when describing the sum of all these aged-related conditions. There are many different frailty scores but they all describe in different ways the way age impacts on the body, concentrating on obvious features such as gait speed, the ability to freely move about and look after yourself without help. The concept of frailty is discussed in more detail in chapter 11.

Dying in the elderly has become hijacked by doctors, despite the fact that modern medicine has little to offer. Doctors are programmed to make you better, not to recognise the inevitability of ageing and dying. They rarely feel comfortable talking to you honestly about your prognosis, nor do they empower you to make choices about how you would like to spend the last few months of your life. And even if they did, the funding for community-based care, if that was the wish of the patient, is grossly inadequate. Funding for health is increasingly used to support the sophisticated technology and infrastructure in hospitals — technology that can perform miracles but is often used in a futile way to prolong life in elderly people.

Society needs to demand a different way of doing things and medicine needs to engage society, not only in discussing what it can do but also what it can't do.

CHAPTER 2

Ageing is not for the weak

The truth is the older I get, the more I like my defects.

Isabelle Allende, The Japanese Lover

You officially become elderly or an older person at the age of sixty or sixty-five, according to different definitions published by the World Health Organization. This figure is arbitrary, not scientifically based.

What is this ageing business all about? While its external signs might be disguised with creams, diets and surgery, behind these, the clock still ticks. The signs of ageing are part of a biologically programmed process which signals that time is drawing to a close for the networks that run our bodies, such as the nervous, endocrine and immune systems. Minor DNA transcription errors accumulate as we age. These occur as small changes in many genes over a lifetime, not large changes in a few genes over a short time. The process is genetically determined and highly variable. The word 'variable' gives us all hope — more hope than anti-ageing creams and Botox. Some people wrinkle, become stiff and go grey early. In others, the ageing process is delayed and they age well. You can't cheat this destiny but you can ensure that you don't shorten your ultimate destiny through environmental abuse such as drugs, a bad diet and lack of exercise.

During your lifetime, you first undergo growth, then reach maturity and finally drift into senescence, or ageing. Senescence doesn't make biological sense. You were born to reach maturity, breed, pass on your genes and then die before you became a liability to your family and tribe. Ageing is a fundamental biological process as a result of apoptosis, or programmed cell death. We'll come to that in chapter 5.

As part of senescence, cells undergo a permanent and irreversible arrest of growth. They change in appearance, accompanied by changes in their DNA and chromosomes. Telomeres are bits of DNA at the end of chromosomes that protect the replicative process and prevent mutations occurring. They are disposable buffers. Some protection for these bits is offered by an enzyme — telomere reverse transcriptase, or TERT. As you age you lose these protective telomeres and your chromosomes gradually shrink. This is sometimes referred to as replicative senescence. The more cellular divisions that occur as you age, the more protective DNA you lose. This is a finite process. As it occurs the telomeres shorten and this largely defines ageing. The cells wear out and cease to be able to replicate effectively. As a result, your appearance and function deteriorate.

The skin is a good place to start when studying ageing. Clive James, the Australian television columnist, translator of Dante and great observer of life, suggests that the first sign of ageing is wrinkling of the skin at the back of the elbow.

Skin holds you together. It also helps to control your temperature; helps fluid and electrolyte balance; and contains nerves to detect temperature, pain, pressure and pleasure. It consists of three layers: the epidermis, made up of skin cells and pigment; the dermis, containing blood vessels, nerves, hair follicles and oil glands; and the third and deepest layer: the subcutaneous layer which contains sweat glands, blood vessels and fat. Each layer also has connective tissue, with collagen to give support and elastin fibres to give elasticity.

The epidermis thins with age; the number of melanocytes or pigment cells decreases in number but increases in size. Thus you become paler and more translucent. Large pigment spots, called 'liver' or 'age' spots, become common. The first sign of my own ageing was the appearance of a small, pigmented area on the inside of my foot behind the ankle bone when I was twenty-five. I was horrified!

The connective tissue in every layer decreases as we age, reducing elasticity and strength, a process known as elastosis. In people exposed to the sun over a lifetime, such as farmers, the elastosis produces a leathery appearance.

Blood vessels become fragile, which can lead to bruising. There are fewer oil-producing glands, resulting in the skin drying out. The subcutaneous fat decreases, making you susceptible to cold, while the loss of sweat glands makes you more susceptible to heat. All sorts of other blemishes, such as skin tags and warts, become more common. The appearance of your skin is also related to your body water content. The body consists of 80 per cent water when you are born, about 60 per cent in your thirties and 40 per cent in your eighties. You dry out as you become older. Granny's skin is different from a newborn's in obvious ways. Because you comprise less water as you age, you don't need to drink as much. One of the few advantages of ageing is that, compared to babies, you are less prone to dehydration.

Skin wrinkling — often considered the first sign of ageing — is a natural result of decreased elastin and collagen as you age. Wrinkling can be hastened by repeated muscle activity, such as around the eyes, as well as by smoking, sun damage, poor hydration and weight loss. Botox works by paralysing the muscles that can make wrinkles less prominent. Avoidance of smoking and direct sunlight might decrease the onset of wrinkles. Surgery may temporarily stretch old skin, but it will not influence the inevitable ageing of skin. Nor do creams stop the ageing process of skin. Chemicals are rarely absorbed through the skin, especially large and complex molecules such as collagen and serums. They just sit on the skin and eventually are washed off. That's money down the drain.

Let's turn to your hair ... Remember, hair is dead — thus, it doesn't require nutrients. Ignore ads for products that promise to make your hair more alive. No matter what chemicals you put on it to make it shine or give it bounce, it is still dead. With ageing, the pigment called melanin, responsible for hair colour and produced by hair follicles, decreases. Greying often begins in the thirties. This is genetically determined and nothing, apart from dye, will decrease its rate.

Each hair will last about two to six years and this is also genetically determined. As you age, the rate of growth does not keep up with hair loss. Hair strands become thinner and have less pigment. Many hair follicles stop making hair. This is biologically logical, as you don't need to remain attractive because your breeding role diminishes as you age. You will also lose facial and body hair, and the hairs that remain become coarser, especially around the chin and lips in women and around the eyebrows, ears and nose in men.

Your nails grow more slowly as you age and they become duller and more brittle. They may even become yellow and opaque.

(Continues…)

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Excerpted from "A Good Life to the End"
by .
Copyright © 2017 Ken Hillman.
Excerpted by permission of Allen & Unwin.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Introduction 1 
1 The last six months of my mother’s life 9 
2 Ageing is not for the weak 19 
3 Because we can, we do 47 
4 Falls at the end of life 57 
5 Apoptosis 75 
6 Groundhog Day 83 
7 Cognitive decline 91 
8 Denise’s manifesto 107 
9 Intensive care sans frontières 123
10 Diagnostic dilemmas 131
11 Frailty 153
12 It is hard to die
13 The living will 175
14 Giving up the ghost 201
15 Futility 221
16 Intensive care: the beginning of the end 231
17 Knockin’ on heaven’s door 245
18 How to choose a good doctor and a good hospital 253
19 The medicalisation of grieving 267
20 The taboos of ageing, death and dying 279
21 Where to next? 289
Acknowledgements 296