Life begins at 40 – St Luke’s reaches maturity

Today, one of the people at the forefront of the specialist end-of-life care St Luke’s provides, Medical Consultant Dr Jeff Stephenson, shares his reflections on two decades with our charity.

“It is said that at the age of about 40 life can become richer because one has the skills, wisdom and means to make it so. Plymouth’s own hospice charity reached middle age this week and has matured well.  I have worked as Consultant at St Luke’s for about 20 of those years, and it has been a privilege to be a part of its journey.

“While much has changed, some things haven’t: the passion, patience and professionalism of staff and volunteers across the organisation, the bedrock on which our excellence is built; and the goodwill, generosity and support of the people of Plymouth and its surrounds.  And so many of the patients and families whom we serve continue to inspire by their fortitude, resilience and grace in the face of terminal illness.

“The place has certainly changed.  The hospice building has undergone several renovations but it continues to provide an atmosphere of peace and calm that is often therapeutic in itself – the ‘hospice effect.’  And our community services recently returned to the hospice site after two relocations, with potential for more seamless working between inpatient and community teams.  Things come full circle!

“St Luke’s has become more prominent both locally and nationally, with the integration of our clinical services across Plymouth, the expansion of our hospital team and our community services, and our innovative and pioneering projects, service developments and educational initiatives.  We have changed perceptions about what we do, and are probably less thought of as simply the ‘hospice on the hill’.  However, the association of our services with a hospice building can still be persistent despite our messaging about being a ‘hospice without walls’ influencing care in whatever setting patients find themselves.

“While the care we deliver hasn’t changed much, the processes around it have become more complex and time-consuming.  The pioneering, seat-of-the-pants freedom of the early hospice movement was still evident to a degree at St Luke’s when I started.  It has since been squeezed, though not completely suffocated, by the increasing regulatory and bureaucratic frameworks of mainstream healthcare – and quite rightly so in many respects, but we seem to expend much more effort on activities to prove and validate what we do.  Sometimes, a casualty of that can be the luxury of time to spend with those whose time is running short, something that was our great strength with a focus on ‘being with’ rather than ‘doing to’ and a counter to the notion that dying is something to be fixed.  But we willingly embrace such frustrations in pursuit of our vision for better end-of-life care for all.

“And here is where St Luke’s has most obviously matured, and arguably secured its future in our community – the adoption of a coherent vision.  In my early years I can’t recall a clear vision.  We provided exemplary care to those we looked after or were involved with, and we influenced care elsewhere through education and training, and it felt good and rewarding to do so.  But it was an uncomfortable fact that while we provided a Rolls Royce service to a few who happened to be referred to us, many others weren’t getting an adequate level of support.  And despite the great progress that had been made there were still people who were dying badly.  Then about seven years ago, as we grappled with the challenges posed by changing demographics and predictions of future care needs, a vision crystallised.

“A community where no person has to die alone, in pain or in distress.  I am proud to have had a part in developing this vision.  It is an expansive one, extremely ambitious and yet eminently possible.  It looks beyond St Luke’s, recognising that we can’t provide such care to everyone that needs it, shifting the emphasis somewhat from our direct care to our role in training, teaching, equipping and supporting others, including care home staff.  It has made us more secure in our identity and given confidence about our future role in the changing healthcare environment.

“It was a driver for the decision to reduce our number of beds and focus more resource on the community.  It has validated the time and resource we have devoted to training other professionals – in my time we have had about 60 trainee GPs working for us, and hosted over a thousand medical students on placements, in addition to students in nursing and other disciplines.  And it has motivated us to seek opportunities to collaborate with external healthcare partners, such as Livewell Southwest and Marie Curie.

“We have come a long way.  But there is still a long way to go.  I had hoped that by now we would have better treatments for some of the symptoms we deal with, but most of the drugs and approaches we use haven’t really changed.  I had hoped that we would have a fairer and more effective social care system, without which our vision simply cannot be achieved.  I had hoped that we would have changed the narrative about death and dying to a much greater extent.  It seems to me that there can still be a temptation to over-treat, trying to stave off death for a little longer in a society that has largely lost any sense of there being anything more important.  Yet paradoxically, our society now appears closer than ever to opening the door to euthanasia and assisted suicide, with seismic repercussions for end-of-life care, and perhaps testament to our collective failure to capture the public imagination with what a better way can look like.

“All this presents huge challenges for St Luke’s.  But we are ready to face them.  And in many ways the pandemic has better equipped us to do so.  We have demonstrated our resilience and adaptability, and there is a greater internal cohesiveness.  We are collaborating more effectively with external services.  And we have been given the opportunity and privilege of refining who we are and what we do going forward.  Here’s to the next 40 years!”