Once in a while a book comes along that has a profound effect on the reader. Being Mortal is a book I know I will revisit, and one that I would recommend everyone reads, especially those of us working with people who are older, have health and care needs or are at the end of their life.
The uncomfortable subject of mortality
Gawande describes the modern idea of mortality, the realities of how we age and how scientific advances have turned the process of ageing and dying into medical experiences. A doctor himself, Gawande discusses how clinicians are trained to save lives, not to tend to people as they die; to treat, not to comfort. His ethos is that the job of any doctor is to support quality of life, and this relies upon giving as much freedom from the effects of disease as possible, but also the retention of enough function for active engagement in the world. This can result in finding a difficult balance towards the end of our lives, when treatment options may be able to prolong our time, but not give us the lives we once had, and tough decisions have to be made about whether ‘doing everything we can’ is the right thing to do.
It’s an uncomfortable subject for most people, as we tend to forget that death is normal, and that conversations about how we want to spend our time if our health worsens, or who we want to make decisions if we cannot, may be difficult but will be necessary for most of us. Gawande writes “Our reverence of independence takes no account of the reality of what happens in life: sooner or later independence becomes impossible.”
With this in mind, Gawande takes an interesting journey through the development of care homes. In the mid part of the 20th century sick people were on the whole treated by doctors in their own home. As medicine became more effective, hospitals were built, and quickly became full of people who were too frail, ill or senile to take care of themselves. The nursing home was then invented to clear out the hospitals, and old age became treated as a medical problem. Since that time, both in the US and the UK, the traditional model of institutional care has evolved and continues to do so, and Gawande tells us the story of how Bill Thomas pioneered a different way of thinking about residential care.
A new approach to care homes
Thomas was a medical director in a care home in the 1990s and took a radical approach. His view was that care was being confused with treatment, and one of the main ailments of residents was boredom and loneliness. He introduced plants, pets and children to the home environment and the effects were astonishing. A two year study comparing the home with another similar, nearby care home found that prescriptions fell to half that of the other home. Psychotropic drug use fell, overall drug use fell to 38% of that of the comparator home, and deaths fell 15%. The residents had come to life. People who had previously not spoken started talking, interacting and engaging. Residents with limited mobility became motivated to walk more and their health improved. This illustrates that as much as most of us want independence and autonomy, we also need to feel needed and part of something. It also demonstrates that true caring is not just a physical job, but an emotional vocation.
Homes like Thomas’s that define ‘care’ more widely than the accepted convention remain rare, and most people have a dread of entering residential care. One of the reasons for this is the fear of loss of control and freedom; it simply doesn’t feel like home. Residents are often denied the choice to take risks, even if the pleasure gained by taking them would have a hugely positive effect. As Gawande writes, we want autonomy for ourselves and safety for those we love, and therefore many of our care homes are designed to appeal to the children of the people who live in them, rather than taking full account of the way residents would like to live their lives.
So much of the culture of residential care is based on managing risks. There are metrics in place to measure targets such as maintaining a healthy weight, preventing bed sores and medication compliance. There are no KPIs in place for happiness. No system to assess how much people are able to “sustain the connections and joys that matter most”.
What frightens people most is the thought of losing the life they enjoy. Yet because we don’t like to think about it, we don’t prepare for it. As we age or become ill we don’t consider how we want to spend our remaining time, and what trade offs we are willing to make. In many cases doctors are at a loss to find a fix for some of the common symptoms of aging; falls, confusion, failing eyesight, multiple conditions and medications. Care staff find it easier to dress people rather than help them dress themselves, and to run life in residential homes on a schedule. There is no one to sit down with people and work out what might make life better.
Medicine can fight against the natural processes of ageing and death, but we must recognise that this has its limits. This being the case, how do we help people to live well towards the end of their lives?
As Gawande writes “We are not ageless. Our goal is not a good death, but a good life to the end.”
“A vision for care fit for the twenty-first century”, read the Demos Commission on Residential Care (CORC) report.