The surgeon Dr Atul Gawande is one of our best medical writers alive today, and he is always looking for ways to share his experience in ways which inform both healthcare and other industries. For example, The Checklist Manifesto and Better both look for ways to instil a culture of high performance, sharing lessons from healthcare, aviation and civil engineering, while Complications explores how and why doctors make errors.
Gawande was invited to give the 2014 Reith Lecture series on BBC Radio 4 which I recommend as an excellent introduction to his books. Being Mortal sets out to answer a fundamental medical question: when doctors are trained to cure people, and our culture believes this is their job, how do they effectively deal with end of life care and long term illness?
End of life care
There is a massive amount of intrusive medical interventions in the last 12 months of life: on average, 30-50% of your lifetime healthcare costs are incurred in your final months. Some of these will do some good, or are worth a try. For example, over the course of 8 years, my dad tried pretty much every prostate cancer drug available, including volunteering for clinical trials, and most of them worked for a while, at least. But the truth is that some interventions just make people feel awful, such as operations or chemotherapy with minimal chance of success and high chance of complications.
This also has an effect on the family: I discovered that people who have seen their loved one die in intensive care are much more likely to experience depression as part of the grieving process than those whose loved ones died at home or in a hospice (with pain control but few tubes or other intrusions).
So how do we know when to stop? Atul Gawande proposes that we need to talk about what is most important to us. What makes life worth living for you? For one person, it might be “I don’t mind being confined to my bed if I can still talk and be at the heart of my big family”. For another, it might be about passing on skills (such as the music teacher with cancer who had no children of her own but many students, who put on special concerts for her at the end if her life) or continuing to make a contribution at your life’s work. In my dad’s case, he wanted to keep working on new cancer drugs for as long as possible, working from home with reduced hours when he was too ill to get into work and he was determined to die at home not in a hospital.
Atul illustrates his book with stories from a variety of people and places, including his own father, which makes this a deeply compassionate and personal book.
Long term social care
The second problem is long term care and the reality that most elderly people don’t have just one disability or long term condition, they have several. With an aging population, most of us are likely to spend 5 to 15 years with limited mobility and in need of support for some aspects of daily life. How do we help people who are struggling to live independently but don’t want to live in a nursing home?
Again, the secret is to understand which aspects of a person’s life are most important and maximising capacity for self care, independence and purpose in life. This is above all a community solution: living alone is much harder to manage than being surrounded by family, friends and neighbours. There are some great stories here about nursing homes where every resident has a pet to care for, or who share a building with a nursery so young and old spend their days together and care for each other.
Atul illustrates his book with stories from a variety of people and places, including his own father, which makes this a deeply compassionate and personal book, which helped me think through these difficult issues (see my intro to this series) and suggested some positive ways forward. And surprisingly life enhancing on a subject which could so easily have been depressing!
What to Read Next
- Alex Fox’s blog from social enterprise Shared Lives has plenty of good stories about how to truly put people at the centre of their own care and provide both purpose and friendship through family level care rather than institutions.
- At Least It’s Not Raining by Stephen Redman tells one family’s story from the Leeds Children’s Cancer Unit and the charity Candlelighters which serves children with life-limiting diseases.
- Surprised by Hope by NT Wright offers some pointers from a Christian perspective about how to find our purpose and live it out.