What is healthcare for?

Review of Humanising Healthcare by Margaret Hannah

“Who and what is the healthcare for?” is a deceptively simple question, and it’s one which Margaret Hannah has tackled with courage and compassion. At its heart is a conception of health that is based on positive relationships, itself a radical conception in the face of a post-war consensus of individual rights and individual autonomy. She describes the origins of the Pioneer Health Centre in Peckham,

Back in the 1920s a pair of doctors in South London broke ranks with their peers in deciding to discover the enabling conditions that might lead to health rather than the patterns of disease. They found that the key to good health was family and friendship: it was impossible to be healthy alone.

The importance of relationships runs like a golden thread through this book, and with the challenge of an ageing population who fear becoming lonely and a burden more than death itself, this is a message that will resonate strongly.

In his third, and strongest Reith lecture, US surgeon/ writer Atul Gawande turned to the theme of his latest book, Being Mortal. He interviewed over 200 people and families for whom the end of life seemed pressing as well as people specialising in end-of-life care and distilled their wisdom down to two important themes. The first was that we need something outside of ourselves to live for. He gave examples of nursing/ residential homes that introduced pets and plants for the residents to take care of. Being the carer – and not just the cared-for gave them a new lease of life. As Hannah puts it,

We all need something to get out of bed for in the morning. In a metaphorical sense, meaning and purpose are like vitamins and their lack curtails life and flourishing. Meaning and purpose cannot be achieved alone but are built with the hope and belief of others.

Gawande’s second insight was that healthcare professionals need to ask patients about their goals and what really matters to them, and then tailor our medicine to help them achieve that.  This is an aspect of what Professor of General Practice Ed Piele calls Values Based Practice. A serious clinical consultation isn’t just an exchange of facts, but a mutual exploration of values which are frequently messy and contradictory – a world away from clear-cut, simplistic clinical guidelines. Psychiatrist and ethnographer, Arthur Kleinmann highlights the problem,

As patient and primary caregiver for a wife who is in the terrible terminality of Alzheimer’s disease, practitioners and even family members are better prepared by our culture and our health-care systems to express and respond to lists of stereotypes and clear-cut rules than they are ready to deal with divided emotions and hidden values.

Kleinmann argues that we need to teach healthcare professionals skills at critical self-reflection on the complexity and irony of what really matters. Gawande says that we need to ask patients what they understand, what matters and what sacrifices they are, or are not willing to make. This isn’t as easy as it sounds. In one study Gawande quotes, less than 30% of patients and families expected to die within four months had these conversations about what matters with their medical teams. Patients and physicians will recognise that awkward moment in a consultation, when it’s clear the treatment isn’t going well and values are hanging in the air, aching to be pulled down and spread out, but instead of dealing with them, the doctor turns to the computer and says, “I’ll just check the guideline…” Hannah gives an example of a doctor who has changed his practice to put values at the centre of care, describing the tendency to revert to his old disease-centred ways, he confesses, “I am a recovering physician” 

In Humanising Healthcare, Hannah says that we urgently need to ask what we understand, what matters and what we’re willing to do, not just with our patients but with our healthcare system. We need, as the other authors also argue, to get our values on the table. There will be consensus and dissensus, it won’t be easy, but we cannot go on as we are. It’s not just that we’re unlikely ever to be governed by politicians who will raise taxes to spend ever more on healthcare, but there are more fundamental problems with a healthcare system designed around diseases rather than people.

Prof. Trish Greenhalgh reckons that multi-morbidy will be Evidence Based Medicine’s nemesis, like weather forecasting, every new diagnosis and changing social context is a complexity multiplier. Now we live for years with heart, brain, lung, neurological etc. diseases that once would have killed us. Evidence based on single diseases becomes ever-less certain in the face of multi-morbidity. Multiple specialists, clinics and medications add up to an intolerable burden of care. We need specialists in people and relationship-based care, now more than ever.

Hannah explains how a system of healthcare based on shared values and meaningful relationships can be created by describing the development of the South Central Foundation (SCF) healthcare system in Alaska,

Realising that nothing short of a radical reform would both improve services and control costs, SCF … undertook a two-year community listening process to find out what the people really wanted from their health service and how they wanted to be treated. Then they delivered it.  

Few places in the world have the opportunity to start afresh, but evolving ourselves out of the mess we’re in is likely to result in more fire-fighting just to survive until the next financial year. Hannah describes a three horizons model of change. The first horizon is where we are at present and the third is where we would like to be. The second horizon is where these competing visions collide, a zone of numerous initiatives and innovations. Like conversations about values with patients, these collisions will be difficult, but we have to get our values on the table in order to have a vision about what kind of healthcare we want. And if it is healthy relationships and compassionate care that we want, then continuity of care, minimally disruptive medicine, values based practice, resisted medicalisation and patient involvement are a few of the things happening right now that we can carry forward.

Humanising Healthcare is a book that makes us think, ‘what does it mean to be healthy and what do we want from healthcare?’ It reminds us that medicine is only one of the ways to good health. What she thinks, and I agree, is that we need a healthcare system that supports healthy living and healthy relationships, one that calls on medicine only when it’s needed.