1. What is your understanding of the situation and its potential outcomes?
2. What are your hopes and what are your fears?
3. What are the trade-offs you are willing to make and not willing to make?
4. What is the course of action that best serves this understanding?
With these questions Dr Atul Gawande describes in his book Being Mortal how doctors and families can help patients and loved ones in their decision making and help to achieve realistic and wanted goals. Not only in illness but also in the often underestimated process of growing old and planning elderly care.
Being Mortal struck me instantly on many notes. It struck me firstly as being a book that I could have written myself. Because it speaks so many truths that I have seen in my day to day medical life. It struck me because Gawande is a surgeon, and surgeons are supposed to be arrogant, drive fancy cars, flirt with nurses and be far less interested in what happens to their patients outside of the operating theatre. And it struck me because with the 4 questions above, it seems like a clearer text may be possible in many of the difficult situations and decisions that patients routinely face.
Gawande uses not only examples from his medical career, but also personal examples of his own father and his wife’s grandmother. Thus, it is far from just a doctor preaching about his insights into the world. It is just as much the story of a son and of a husband dealing with the issues which at some point will touch every family.
Not long ago, a nurse on our ward stated that she felt that we were not making any of our patients better, and for that reason, she found it harder and harder to work there. This initially sounded more than a little esoteric to me. Sure, we deal with a lot of chronic lung diseases, which are at times sadly and frustratingly incurable and progressive. In many cases, this comes with an extremely poor prognosis and inevitably a death caused by the disease.
But on the ward, we were making lung cancers smaller (even if only for a limited period) with our treatment, treating episodes of infection and making breathlessness manageable enough to enable a discharge home. Didn’t that count as making people better?
Quite often, yes. But in many of the more gruelling cases, I wonder retrospectively if our patients achieved their goals and realised the price they were paying for it.
Hospitals are however taking steps to acknowledge this. In my current hospital, we are lucky enough to work closely with a clinical psychologist, because we realise just what an impact physical illness (particularly chronic disease) has on metal health. Social workers are equally crucial in the team.
In my previous hospital, we tried out a so-called ‚Wegbegleiter‘ or sort of a hospital companion: a doctor who was there most afternoons to spend time talking to patients and their families, accompanying them through their hospital stay, discussing their hopes and fears, liaising with the nursing and medical team, without being in any way responsible for their medical treatment. A ‚medical middle-man‘ who has the time to explore issues which are invariably not part of the daily ward round. It was a huge success. It improved patient satisfaction and it made the life of the physician in charge notably easier.
As Gawande point out, medicine in many parts of the world has gone beyond simply the prolongation of life. It is just as much about maintaining a quality of life which is deemed to be acceptable. When I get back to work, I will definitely keep in mind the 4 questions above and be better prepared to tackle the difficult but crucial conversations that doctors and patients sometimes fail to have.