BLOG: Being there was Dr Jeff’s greatest gift

Consultant and former medical director Dr Jeff Stephenson has announced his retirement from St Luke’s after two decades with the hospice. As this important era ends, we asked him what brought him into palliative care, what kept him at St Luke’s and what the future holds.

When he arrived at St Luke’s just over 20 years ago, Dr Jeff Stephenson was stepping up to his first post as a consultant, fresh-faced and full of confidence that he was going to make things better for people who were dying.

As he prepares to say farewell to both St Luke’s and his medical career, it is with the benefit of huge and humbling experience and the knowledge that he doesn’t have all the answers, the smallest things often matter most, and that St Luke’s must keep developing to achieve its aims.

“In all my time here the most valuable thing I have been able to contribute is my presence,” said Jeff. “It’s often not so much what you do, it’s about how you make people feel that is important. The tiniest act can make people feel loved and valued and accepted. Families and patients have been amazed that you spend time and really listen.”

Jeff recalls the daughter of an elderly patient being overwhelmed when he got down on his knees by the bed to talk to her mother.

“I do that a lot, but it took her by surprise. It’s about showing people that they matter, and they are not just another patient to you. And that’s much harder to do in mainstream medicine.”

Originally from County Durham, Jeff had few experiences of people dying when he was at medical school in the late 1980s and early 1990s and there was no specific palliative medicine training at that time. It was a memorable encounter with a friend that first made him think seriously about the final part of the human journey.

“There was a girl training in the year ahead of me who I knew from church. I remember seeing her two or three months into her first job in geriatric care and she was in floods of tears. She said: ‘They just keep dying on me.’ I thought perhaps I ought to get some preparation for that.”

As part of his standard training, Jeff elected to spend several weeks at a hospice in Edinburgh where he found himself working alongside a particularly enlightened and inspirational doctor. “That was the first time I had the thought ‘I would really like to be like you’.

After qualifying, each new job and element of training took Jeff and his wife, Lois, a primary school teacher, to a different location, gradually moving further south and west. Landing in Exeter to complete his palliative medicine training, Jeff spent time working at St Luke’s and loved it. The couple were also keen to bring up their four children in beautiful Devon, settling in Ivybridge.

“There was a sense of calling to come here,” he said.

Recognising his potential, St Luke’s created a post for Jeff working alongside Dr Mary Nugent, one of the charity’s early pioneers in holistic hospice care. He grasped the challenge and never looked back, devoting his career to the collective vision of a community where no person has to die alone, in pain or in distress.

It hasn’t been an easy mission, but Jeff has been spurred on by his colleagues and the respect he has for them, as well as St Luke’s over-riding culture of compassion for all.

“I have been humbled and inspired by the people I work with and the care I see in action throughout St Luke’s, what the human potential is and how people go the extra mile for others.

“I’ve been privileged to work in an environment where you see incredible love and care being shown and that is what has kept me here.

“I have learned that people can cope with situations you would think would be unbearable and they do it with such strength and courage. No one should have to deal with some of the things my nursing colleagues are dealing with day in and day out. It’s inspiring.”

Over the decades, Jeff has seen many changes, in how services are run as well as the journeys patients take.

“As people live longer there is a lot more comorbidity now. People are living with long term conditions for far longer than they were. Ultimately all people will die, but many will now have more complex problems when end of life is approaching.

“There are so many new treatments coming online. Some of them are very expensive and offering only a few weeks or months of extra life, but people will want to be offered them. There is still a temptation to over-treat when what someone needs is a frank discussion about what is really important to them.

“One of the sadnesses is increasing bureaucracy and that we spend more and more time justifying what we are doing. It feels like we have far less time to be with people on their journey than when we started. People are coming to us later, and sicker, and there are limits to what we can do.”

Jeff has encouraged the focus of St Luke’s care to broaden out from the specialist inpatient unit at Turnchapel and into the community, with the premise that people should be able die comfortably at home surrounded by family and friends if it’s what they want and the right support is there for them. He believes volunteer power and education are vital for a sustainable future.

“We need community engagement to try and get nonprofessional sources of support for people. Going back hundreds of years, the community would gather around to support people going through dying and bereavement. There is still a lot of goodwill, talent and skill out there that could be motivated in looking after our neighbours in this difficult phase and we need to find ways of motivating volunteers.

“I think in terms of changing cultural attitudes to dying and opening up a conversation about dying, young people are the key. There is a tendency to try and hide death from children because we think they cannot cope with it. Actually, as our work in schools shows, when approached in the right way, youngsters are really well able to cope with discussions around mortality. It is the way to go over the next few years – after all, they are our future nurses, doctors and care professionals.”

There has been ongoing debate nationally about whether hospices should be entirely government or NHS funded to ensure everyone has access to the same quality of end of life care. It’s something Jeff would resist.

“Here it is all about the whole person. It is not simply the symptoms. It is all the other stuff around that. That is the advantage of being a hospice and a charity. You could argue that what we offer is essential care and it should be funded entirely by the NHS. But having charitable status gives us freedom in terms of innovation and development. Of course, we would like more funding from the NHS, but we don’t want to give up too much control. One area of development is collaborating a bit more with other hospices in our region, which we have already begun to do.

“When looked at our vision a few years ago we acknowledged that it’s no good having just a few patients getting a Rolls Royce service of excellent quality of care when others are not getting it. What can we do to make sure everyone can have an adequate level of care?

“It is not necessarily about St Luke’s providing that care, which is why education and community engagement is so important, as well as thinking outside the box about how to maintain a sustainable approach to funding. There is a limit to how much a local community can fundraise, which is why we are now looking at business ventures that are going to provide longer term income.”

Jeff did have mixed feelings about retirement, especially after the unsettling effects of the pandemic. But he says he is ready and confident that the medical team is in fine fettle to carry on the incredible work of St Luke’s without him.

“I’ve been a doctor about 30 years and working with the dying for over 20 years. I’m ready to move on, but will be sad to leave this working environment, which has been wonderful.

“The reaction of people to the fact that I’m going soon is probably the most humbling thing. I was not your typical medical director and I’m probably not your typical consultant. At times I have wondered whether I am doing a good job at all. But it’s so much about presence and obviously that has been thought to be enormously valuable by people.

“I feel lighter than a year ago at the prospect of leaving. No service is dependent on one person, but one wants to go feeling things are left in reasonable shape. It’s now looking very optimistic and hopeful.”

So, what does the future hold for Jeff after his departure at the end of April?

“Death and dying does colour your perspective and it’s now time to rediscover Jeffrey,” he said.

It’s been a year of engagements and weddings for Jeff and Lois’s children. Following the fourth wedding in 9 months in a few weeks’ time, he has a good rest planned, before embarking on his next adventure – ordination as a Church of England priest with the aim of part-time ministry. As a regular churchgoer he says he is “badging up” what he does already, swapping medical care for pastoral care.

Before that Jeff has some sincere thanks to express: “I would like to pay tribute to those I have worked with at St Luke’s, and to thank Steve Statham and George Lillie and the rest of the Senior Management Team. I have always felt enormously supported. It has been humbling and inspiring to work with everyone.”