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Christmas reflections on patient-centred end of life care

Theresa Hegarty 20 December 2017

As many think of lost loved ones at this time of year, Theresa Hegarty, a coach on our Living Well to the Very End programme, reflects on what she has learned about patient-centred care for people at the end of life.

Topics and programmes


Hello my name is Theresa Hegarty. I have worked in the NHS since April 1977, having trained originally as an Occupational Therapist and then as a counsellor and psychotherapist. I currently work part time as a dementia coordinator, leading person centred dementia training for my local NHS acute hospital trust.

This is a reflective time of year, when we all think of the ones we love, including people who have died and are no longer with us in person.

Living Well to the Very End is an improvement programme, supported by the Health Foundation, that applies Patient and Family Centred Care (PFCC) with teams of staff in the NHS and in Care Homes. In July 2017 I began coaching two NHS teams going through the programme. I have previously participated in a PFCC programme as the lead for my trust, which had been very beneficial to patient, carer and staff experience.

As 2017 draws to a close I would like to look back at a couple of the main things I have learned from my experience of the programme during the year.

The value of patient shadowing

Shadowing is spending time beside the patient and observing their experience, as much as possible through their eyes. It is a key element of the PFCC approach, and I think it is the only real way to connect with patient experience and to enable priorities to be set for quality improvement.

The learning from shadowing produced some surprises for the teams I have worked with, showing up issues that staff would not have thought of, but that really matter to patients at the end of their lives. Through shadowing, staff discovered that the remote controls for patients’ TVs had become lost on the ward; meal portions were too big for them to eat; care at admission was not as good as when the patient was on the ward; phone calls from families to the ward were often made at the busiest times for staff; some paperwork required improvement.

Improvements have been made because of these findings: an app is being used instead of TV remote controls, so every patient on the ward can control their TV; meal portions have been reduced according to patient choice, resulting in the right sized portion and reducing wasted food; improvements have taken place to care at admission; families are advised regarding quieter times to make contact with the ward for information; paperwork is regularly audited and improvements have been made to questions asked of patients and to make it easier for staff to accurately complete forms.

The importance of good leaders

From the role of coach it is easy to see the qualities that the staff I work with bring to their teams. I notice the kindness, and empathy for patient, family and staff experience, as well as the dogged determination to drive improvements from a more person centred perspective. After every call and conversation I have with staff I am left feeling inspired by the quality and spirit of the people working in health and social care.

There are many examples of the work and achievements staff have made through engaging communication with their immediate project teams but also with people beyond the project. One team made a presentation to a trust board meeting on the patient shadowing exercise and the improvements it had made since. What was meant to take ten minutes became a 30 minute exchange as board members were so interested in the subject. The presentation also led to staff being asked to come to talk with the catering team and other colleagues about the findings from their shadowing experience.

Work and life

I remember when my brother was dying and I would visit him in his room at the hospice, how everything slowed down when I was privileged to be his companion. There is a particular pace of life around people who are coming to the end of their lives, when every moment is precious, that we can learn from. Compassion literally means to suffer with, to suffer alongside, to hold a hand, to listen and be there with them in the darkness.

In my work with the Living Well to the Very End project, I have encountered several staff who have described how they have to switch very quickly from their professional setting, working closely with patients at the end of life and their families, into the rush and excitement of their own Christmas preparations. It isn’t easy to cope with these contrasting realities.

Many staff working in health and social care understand and work with great compassion alongside patients, residents and families in challenging situations day in day out. Let’s drink a toast to them this Christmas!

Don’t miss our spring conference, ‘Making healthcare more human’ on 28 March.