The strap line for Homeward Bound is a play about love, relationships, empathy and compassion.
Everything I have done since Seth died has been about sharing our story, via Homeward Bound in its three forms the play, the film and the educational package. Our story has been shared to improve compassionate care at end of life; care for patients and their families.
Compassion is a concept that we associate predominantly with healthcare but compassion is relevant to all areas of life. Empathy is another concept that is relevant to everyday life, but this is probably less exclusively associated with healthcare and is a more generally understood term.
So what’s the difference between the two?
Compassion is recognising someone’s suffering and taking action to relieve it whereas empathy is where we feel someone else’s distress and pain; we suffer with them.
Empathy can be draining, it can cause burnout whereas compassion can be rewarding, can fulfil intrinsic motivations, it is much more of a practice than just a philosophical perspective.
Compassion in healthcare is not a luxury, it’s the essential connection to what makes us all human and more than that it’s a leadership skill, it’s a world view.
At recent performance of Homeward Bound I was asked if with all the current pressures within the NHS if it was possible for nurses to be compassionate given that they are under pressure, under resourced and burned out … my answer was yes.
Everyone involved in care in the NHS or via social care through all of the roles and organisations have one skill that they all possess, one that isn’t about hierarchy, position or pay. It is a leadership skill; it is that fundamental connection to the humanity that we all possess, the need to alleviate suffering one half of compassion.
I think that people who work in the NHS and social care just need a little time to reflect on their ability to recognise suffering, so that they can act to alleviate it. I fear that many staff feel the suffering of others they empathise with them and that is not sustainable; eventually staff are paralysed by the stifling pressure of suffering.
We have to find a way of seeing shared imperfection, we have to be people who help people, we have to lose the roles, the hierarchy, the perceived and real power. At the end of a person’s life, there is no part for relative power; the power that we need to focus on, the power we need to harness, is the power of human connection, the power that comes from compassion.
The people who work to support people who are dying have to see themselves differently, to practice compassion they have to create a team where the person who is dying is at the centre. A team that is contributing to the complicated and imperfect process of connecting to humanity and the complicated and imperfect leadership skill of compassion.
Compassion is simple who wouldn’t want to do something that would alleviate suffering, but it’s also complicated. Suffering can be invisible, it maybe psychological, it may be very personal, it may need trust and it may not be obvious.
In health and social care I think we have staff who understand the difference between compassion and empathy. However, they work in a system that is empathic; this leads to experiences of suffering which results in burn out and burnt out staff that are disconnected from themselves cannot deliver compassionate care.
In the 33 days from diagnosis to Seth’s death I experienced the most phenomenal compassion, there were many selfless and heart wrenching acts which helped me with my suffering, these all came from Seth. The only and most compassionate person in my journey was Seth ….. the most wonderful man who had the innate dignity and a deep unwavering love for me that transcended his own suffering and focussed on mine. I hope that despite the concerted and overwhelming efforts of a system that lacked strategic compassion, I was able to reciprocate my compassion to and for Seth so that I was able to alleviate his suffering with my pure and undying love.
My love for Seth and my promise to him, made me want to share our story in his memory to improve compassionate care at end of-life care for patients and families. That is what I have been striving to do but I also know that to achieve that compassionate focus there needs to be a shift in the way that all staff are educated, supported, and mentored.
For this to happen in health and social care we have to tip the balance from organisational empathy to compassionate leadership within organisations. In the future as we collaborate across organisations in integrated care systems we must create compassionate integrated care systems with a real and meaningful involvement of with accountability to the people who experience care.
We need to recognise the imperfections, improve them and work within the complexity of compassion.