End-of-life care - when there is only one chance to get it right

Honest conversations about dying need to begin with a broader understanding of what ‘end-of-life’ actually means, and practical steps to enable the conversations to take place, writes Bev Fitzsimons from the Point of Care Foundation

The wide-ranging Royal College of Physicians ‘our future health’ work programme makes a valuable contribution to the discussion about what lies ahead for end of life care. Despite the plethora of guidelines and guidance, it is clear for a variety of reasons that health systems and individuals within them find it challenging to put ideas about good practice in end of life care into practice. 

This is no doubt in part due to a lack of documentation: in our work with end-of-life care teams we have heard from patients who have had repeat admissions to hospital in the last year of life, and who describe having these sorts of conversations repeatedly. But it is also due to the lack of discussions and conversations about the end of life in many cases. 

There is no getting away from the fact that delivering this care, and having these conversations, is hard – and even harder in a busy, hard pressed ward, with staff under pressure and patients with significant needs. 

There is no getting away from the fact that delivering this care, and having these conversations, is hard – and even harder in a busy, hard pressed ward, with staff under pressure and patients with significant needs. 

Bev Fitzsimons, head of improvement, Point of Care Foundation

But difficult though these conversations may be, not having them impacts on patients and staff alike. For patients, it denies them the chance to put things in order and have their preferences recognised. For families (and I include myself in this group), the coded language which is sometimes used to soften the blow, leaves loved ones in the dark, with the shock all the greater when the patient dies. And the impact of moral distress of staff who are not able to deliver the quality of care they aspire to, is well documented. 

So how are we to help the system and the staff working within it to do the right thing in end-of-life care? 

The ‘surprise’ question

In the past, policy has been confused, with definitions about what constitutes the end of life muddied and lack of clarity about what good care is like. There are real difficulties in practice in identifying whether someone is in the final phase of an illness. But it is clear that a narrow definition of end of life, focused only on the last days or hours of life, does patients, families and staff a disservice. The teams that we have worked with have resolved this pragmatically by using the so-called ‘surprise’ question – would it be a surprise if the patient died within the next 12 months? If the answer is no then it makes sense to think in terms of end-of-life care for that patient.

This pragmatic definition takes account of the fact that end-of-life conversations need to be incremental, taking place over longer periods of time, and can profoundly affect the choices patients and families make in the last years of life. 

The first thing to recognise is that patients and their families often welcome these conversations, and indeed initiate them. It can be a relief to have the unspoken, spoken. 

The second thing is to acknowledge the barriers to good end of life conversations. Part of this means addressing the broader sense in our culture that it is taboo to mention death and dying. We can all make a contribution to addressing this, led by healthcare professionals. 

Part of this means addressing the broader sense in our culture that it is taboo to mention death and dying. We can all make a contribution to addressing this, led by healthcare professionals. 

Bev Fitzsimons, head of improvement, Point of Care Foundation

The third is to equip staff with the skills to be confident in gently leading these sorts of incremental conversations. 

Finally, there need to practical arrangements in place to ensure that these conversations can take place. This is not always easy on a busy ward during a busy shift. 

The Conversation project

We were delighted to see the Royal United Hospital’s conversation project cited in the RCP report as a case study of how one trust has taken these challenges on. The team at RUH worked with the Point of Care Foundation as a participant in a collaborative on patient-centred end-of-life care – part of our ‘Sweeney’ programme. Since then the Foundation has worked with a further 25 teams who are providing end of life care to people in generalist (non-palliative care) settings.

This programme has helped staff to see end of life care through the patients’ and families’ eyes, and participants have told us that it has re-connected them with their drive to provide excellent care at the end of patients’ lives, when there is only one chance to get it right. In the words of Cicely Saunders, “how people die remains in the memory of those who live on”. 

The Point of Care Foundation is continuing its work to support staff to provide patient and family centred end of life care, with a further collaborative. This is a programme in which multi-disciplinary teams – doctors, nurses, managers, therapists – from a number of NHS organisations come together in a series of learning events, to learn patient-centred improvement methods that help them see care through the eyes of patients and families. Previous participants have told us of the value of spending time together as a team, linking up with teams from elsewhere around the country to share practice, and re-connecting with their own motivations to provide the best patient-centred care they can. 

Bev Fitzsimons is the head of improvement at the Point of Care Foundation, where she is responsible for development, design and oversight of patient-centred quality improvement initiatives.​