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Putting love and empathy at the centre of end-of-life care: why I wrote Homeward Bound

Lesley Goodburn 10 February 2017

Lesley Goodburn talks about the importance of seeing those in end-of-life care as a ‘person who is dying’ rather than as a ‘dying person’ and why she wrote her play, Homeward Bound.

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In the NHS, it is so easy to forget that patients are people: people with goals and aspirations, people with complex relationships, people who love each other, and people who are ill but who want to contribute to the world. It is easy to forget this when we term people in palliative and end-of-life care as a dying person rather than a person who is dying.

It seems that the desire to make a person the object of the process of dying helps the nurses, doctors, consultants and people working in health to keep a professional distance; it can be a form of protection. But the healthcare professionals who have compassion and empathy create connections – human connections – that help the person who is dying and their family achieve the one chance we have to get things right. The memory of the death of a loved one lives on in the memory of those left behind and this is a forever memory, one which never diminishes or leaves but is etched in pain and heartache forever.

People are forever changed by the death of a loved one; I am one of those people. I am no longer the Lesley who was married to Seth; I am no longer the one that he called Les; I am no longer Les. I am Lesley, the woman who lost Seth her soul mate; Seth, the person who was her reason for living.

When Seth was diagnosed with terminal pancreatic cancer after being unwell for fourteen days, our world was turned upside down. Seth went from feeling unwell to being told he was dying. Our world changed overnight when we knew he had days, maybe weeks, to live.

We both wanted Seth to die at home and that was what we planned for. What we didn’t plan for was the speed at which pancreatic cancer would destroy our lives and the speed at which it would run rampant, destroying our plans for Seth’s death.  What we also did not expect was the gulf between our expectations of compassionate care and the care that we actually received, which was often a long way from the empathy and compassion that you would expect for a person who is dying.

Seth died just thirty three short and heart-breaking days after his terminal diagnosis: he was 49 years old; he had booked the trip of a lifetime to China just six weeks before to celebrate his 50th birthday, my 50th birthday and our 10th wedding anniversary. Sadly, this was a trip that he and I were never able to make.

The medical care that Seth received was of the highest quality. But the compassion, support, empathy and understanding we both received was lacking. People failed to see Seth was still a funny, vibrant, loving, kind and curious man, and they chose to see a man diagnosed with terminal pancreatic cancer with no hope, aspirations or goals.

I promised Seth that I would share our story to achieve three things: to raise awareness of the signs and symptoms of pancreatic cancer; to help healthcare professionals think about how to understand what it feels like to receive a terminal diagnosis with such a short prognosis; and to help healthcare professionals understand how it feels to receive care when you are dying, or when you are supporting a person who is dying, so that end-of-life care can be more person- and family- centred.

Homeward Bound is mine and Seth’s story of those thirty three heart-breaking days and it is Seth’s compassionate legacy shared to make end-of-life care more person-centred and empathic and to connect people, especially healthcare professionals, with the innate human compassion that we all possess. It is the essence of what makes us human.

 

Lesley’s play, Homeward Bound, will be performed at our ‘Living Well to the Very End’ celebratory event on 23 February 2017. The event will also provide the opportunity for delegates to register their interest for the next cohort of the ‘Living Well to the Very End’ programme. Find out more by clicking below.

Read more about the programme

You can follow Lesley on twitter @lgoodbu, or follow @hwb999 for updates about her play.