A woman whose husband died from pancreatic cancer hopes a play based on the couple’s experiences will help nurses reflect on and improve the way they approach end of life care.
The Homeward Bound play tells the story of Lesley Goodburn and her husband Seth, who died just 33 days after being diagnosed.
“People do forget the little things that mean a lot to the person who is dying and their family”
It shows how care delivered by well-meaning clinicians and other staff frequently failed to meet the couple’s needs in the short time they had left together, and sometimes made their pain and distress worse.
Launched last year, the play has been already been performed live to audiences of healthcare professionals including hospital, community and specialist nurses.
The powerful piece, commissioned by the National Council for Palliative Care, has now been made into a short film so it can be used to train many more nurses and others involved in the care of dying patients.
It is based on a series of letters written by Ms Goodburn, who worked in patient experience in the NHS, in the wake of her husband’s death.
“It became obvious really quickly that the care Seth and I were getting was a million miles away from what the aspirations were,” she told Nursing Times.
“At the time my priority was spending time with Seth and not battling the system, which is why I wrote the letters six months after Seth died just to put down on paper how it felt to be us, desperately trying to spend time together,” she said.
“We knew time was short and could hear those seconds ticking away, but everything that everyone was doing seemed counter-intuitive to what we were trying to achieve,” she added.
“Often it is not the fault of one individual but how all these different parts work together, or don’t work together”
Actors play the role of Mr and Ms Goodburn in the two-handed play, which emphasises the importance of patient-centred care.
It shows how Mr Goodburn wished to die at home but died in hospital having initially been admitted for a chemotherapy assessment.
“Nobody was really looking at Seth as a person and saying ‘this man and his wife want to get home – how are we going to get them home?’” said Ms Goodburn.
The play provides examples of where care was not as compassionate as it should have been, such as the fact Mr Goodburn was given the news he was terminally ill when his wife was not with him.
Toby Scott, communications manager at the National Council for Palliative Care, said the work also highlighted how poor communication and a lack of a joined-up approach can lead to insensitive care.
Exclusive: Patient play used to train nurses on end of life care
“At one point when Seth is very close to death, someone comes round with the menu for the next day,” he said. “Often it is not the fault of one individual but how all these different parts work together, or don’t work together.
“This is not a finger-pointing exercise but asks how we – all the different people involved – can improve the systems and processes by which people are cared for as they approach the end of their life,” he said.
The play – devised by playwright Brian Daniels – was launched at the council’s national conference in March 2016 and has since been performed to over 1,000 healthcare professionals at other events.
Mr Scott said the reaction from nurses and others had been “overwhelmingly positive”. The council was keen to make the piece available to trusts and other services, and see it used as part of staff training and service improvement work, he said.
The film is due to be launched this spring alongside educational resources developed by the council with Pancreatic Cancer UK, St Giles Hospice, Leeds Teaching Hospitals Trust and NHS England.
“If it changes the practice of just one person and allows them to reflect on one small thing they can go and change, then that is all I want”
Ms Goodburn said one of the key messages for nurses was that it was often small things that meant the most to families.
“No one did anything that was unkind or deliberately malicious, but people do forget the little things that mean a lot to the person who is dying and their family,” she said. “There is something about reconnecting to what it would feel like if it was your husband or family member dying.
“I know that isn’t necessarily what nurses are taught and often it is about keeping their distance and keeping that professionalism,” she said. “But actually, it is just thinking what it would be like if your husband went to work on Monday, went to the doctor, was referred to A&E and was told the next day he was dying.”
She told Nursing Times she was “incredibly proud” of what had been achieved so far. “It is incredibly difficult to sit through the play, but I am able to do it because Seth really did want me to share our story and try and help others,” she said.
“If it changes the practice of just one person – whether that is an oncologist, porter or catering assistant – and allows them to reflect on one small thing they can go and change tomorrow, then that is all I want,” she added.
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