Feature image: Ken Hillman with his mother Margret
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 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 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 post-operative 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 40 beds at a cost of at least $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 60. Many are in their 80s or 90s. 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 83 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 22 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 22-year-old with a urinary tract infection it would mean antibiotics and a day off work. 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.
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.
Story originally published as: The last six months of my mother's life