Engaging with grace

In the course of my clinical career, there are many things that I look back on and wish that I had done better. Conversations that went badly with patients, decisions about treatments, heated debates with colleagues are often played over and over. I think about the wins as well, though perhaps not as much. As a medical registrar, most centre around getting someone home feeling better than when they came in.

Someone that I remember well was a young Egyptian-born man with a particularly aggressive form of leukemia whose disease relapsed after treatment. Born in Cairo and living in east London since he was a teenager, he was desperate to return home to die. Two days of hurried phone calls and quickly faxed letters to hospitals, embassies and airlines and he was on a flight, three weeks later we got news that he had died.

We know the statistics; although most people express a wish to die at home, depending on where they live, anything from 20% to more than 50% of people will die in hospital. People are more likely to die in hospital if they live in regions well supplied with hospital beds. In the US one third of Medicare dollars (providing health insurance coverage for the over 65s) is spent on patients in the last two years of their lives. Behind the statistics, very real stories of unnecessary and undignified treatment at the end of lives, of long hospitals stays, unnecessary readmissions, limited hospice beds and inadequate services in the community to help support patients and their families.

Work by John Wennberg and his colleagues in the now famous Dartmouth Atlas in the US, has looked at trends in different hospital referral regions (catchment areas) in how care is provided to patients with chronic illnesses at the end of their lives. They have been able to develop a Hospital Care Intensity Index and show that high levels of spending do not result in more effective care or better outcomes for patients. This is understandable; frequent hospital appointments, doctors’ visits and tests achieve very little and can feel unbearable when you are chronically or terminally unwell.