Respecting people’s end of life wishes

Having a difficult conversation with someone who might be nearing the end of their life and talking with their family may not be easy – but it’s important, to make sure dying wishes are respected.

This was at the heart of a quality improvement (QI) project led by consultant nurse for end of life care, Lisa Dennis, from Kent Community Health NHS Foundation Trust (KCHFT). Lisa worked with the Kent and Medway Clinical Commissioning Group (CCG) on the ReSPECT project, as it was important for there to be a joint approach across the county.

She also worked with three local hospice organisations, on the end of life education element of the project: Pilgrims Hospices, Heart of Kent Hospice and Ellenor.

ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. The project aimed to improve recognition of those who might be at the end of their lives, have sensitive conversations around their emergency care and treatment and to document this, using the ReSPECT process.

The project identified inconsistencies across Kent and Medway when it came to end of life care and that adopting a ReSPECT approach would lead to improvements. It aimed to improve the patient experience, reduce unnecessary patient trips to hospital and to standardise patient records across the health and social care system.

Lisa is the chair for the Kent and Medway ReSPECT steering group and leads on ReSPECT at KCHFT.

She said: “I did this project because there are gaps and inconsistencies across Kent and Medway in people being recognised as end of life and being afforded the opportunity to have conversations about their current and future care and treatment. Advance care planning is important in identifying early palliative care needs and recognising the end of life. Other benefits include less aggressive medical care and an improved quality of life near death. It also helps families prepare for the death of a loved one, resolve family conflict and cope with bereavement.

“The work carried out resulted in an improvement in people being identified as end of life, improved sensitive conversations about their preferences for care and treatment now and in the future and much improved shared care and collaboration across Kent and Medway, using the ReSPECT process and the Kent and Medway Care Record*.

“Next I hope to fully implement ReSPECT across KCHFT and focus on measuring the quality of conversations and outcomes for patients, to be able to continue bringing about improvements and make sure the project has been sustained.”

A QI approach and QI tools were used, including a driver diagram, process mapping, plan do study act (PDSA), stakeholder mapping and the five whys. Data was recorded from the start and measured and analysed throughout. To improve things the steering group set out to:

  • Make end of life care training more available across Kent and Medway for all health and social care colleagues
  • Encourage adoption of the ReSPECT process, with the aim of improving quality of care and more consistency for patients in Kent and Medway
  • Develop a ReSPECT electronic form
  • To establish a system wide policy
  • To set up a ReSPECT integrated care steering group, to include colleagues from health and social care
  • Develop an Electronic Palliative Care Coordination System, to record and share an individual’s care preferences and key details about their care at the end of life. This allows those involved in the delivery of palliative care services to view important information about the patient, helping to improve communication between the different healthcare professionals to make sure the patient receives coordinated care which reflects their wishes. This is being developed through the Kent and Medway Care Record – which is a health and social care shared health records initiative.

The project was a success because it resulted in a system wide education program starting. ReSPECT has been adopted by many organisations across Kent and Medway and all of the organisations Lisa worked with now follow the same procedures and policies and work much closer together.

In June 2022, Lisa presented her project at a Palliative and End of Life Care Network event.