On being mortal: leadership and end-of-life care

While on holiday, CSP chief executive Karen Middleton read an inspirational book on the need to reform healthcare.

I think all healthcare practitioners should read by Atul Gawande’s book 'Being Mortal', which I finally got around to reading while on holiday (I did, I admit, also read some trashy novels!).
Gawande’s book touches on issues that don’t get aired enough in the curriculum or in continuing professional development. For the CSP, it reinforces our emphasis on the contribution physiotherapy can make to people’s quality of life rather than simply the length of that life.
The CSP’s Physiotherapy Works programme focused heavily on the needs of an ageing population where people don’t fit easily into the medical model and where a ‘cure’ might not be on the cards. 
Dr Gawande discusses how a lack of a cure can feel like a failure to a clinician (particularly those in the medical profession). Yet, given the demographics of our population, we really need to see a paradigm shift in our thinking and approach as this will, indeed, become the norm.
Physiotherapy staff could lead this shift but we, as all clinicians do, have to understand and appreciate what really matters. The subtitle to Dr Gawande’s book is ‘illness, medicine and what matters in the end’.
A key part of his message centres on ‘autonomy’. We might think of this as choice or self-determination but it is about a person having the most control possible about how they live their lives. This is something we all want for ourselves but because society has not turned its attention to what living longer means, that autonomy is taken away from many people. 
For example, our housing is not flexible enough for many people to remain at home, funding for support services in the community is being cut and families are dispersed around the globe. 
As CSP members, we should aim to foster an individual’s autonomy and make a major contribution to this aspect of healthcare.
As a person reaches the end of life, all of the above comes into sharp focus and the health system must be able to support their ability to make choices. We need to have difficult conversations that help us to understand what matters most to that person and what the trade-offs might be.
While I was reading 'Being Mortal' the mother of a friend of mine was reaching the end of her life. The family was distressed because the ‘system’ seemed unable to deal with the inevitable or to have the difficult conversations with them that would lead to suitable plans being made. 
My friend and his wife knew the system and could ‘pull strings’; they were articulate and assertive; English was their first language and they could share the load across the family. I am sure many of us have been in similar situations where knowing how to navigate healthcare and speak to the right person on someone’s behalf works, but wouldn’t it be fantastic if we could deliver the same for everyone?
What has this to do with leadership? For me, it is about the environment and culture that the leader establishes and models. We know that caring for staff will mean better care for patients and their families. As with delivering services to patients where the clinical skills might well be excellent, it is the totality of the professionalism that makes the difference.
In terms of leadership, the management of the service might be excellent, on target and within budget, but what makes the real difference is leadership that results in a culture where staff can’t help but deliver excellence – all the time!  fl

Contact Karen

You can email Karen at: enquiries@csp.org.uk

Karen Middleton

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