“A good send-off?” Patients’ and Family's experiences of End of Life Care

End of life care was not a dignified and well-arranged experience for many. The sensitivity and dignity of individual care planning that we would expect was not always provided. Our recommendations have been accepted in full by the NHS with a pledge to improve the care pathway and correct the elements of personal insensitivity and absence of coordinated planning that we found.

Healthwatch Key Findings: 

• Patients had been ‘stranded’ in hospital and regularly readmitted.
• Patients fared better when they had support from specialist services for their End of Life Care such as the Hospital Discharge Team, the hospital Palliative Care Team and Martlets Hospice.
• Consideration needs to be made around the appropriateness of terminally ill patients having the same pathway as other patients in ED.
• Questions were raised around how NHS staff, patients and families understand the role of a hospice.
• There was confusion for families about what services were available in the community and how they could be accessed.
• Interviews with families and patients demonstrated the need for improvement in how they are informed and involved in treatment choices and care at end of their life.
• More routine information is needed to access the support that is available.
• Quality standards and agreed policies and practices need to be in place to support ‘a good death’.

Healthwatch have made 10 recommendations to improve End of Life care:

• Greater focus on patients at the end of their life to improve their experience and hospital performance. 
• Increased or improved use of specialist support teams both on End of Life Care and Discharge Planning and a recognition that most discharges of people with terminal care are complex for the patient and family. 
• Better information and active early involvement of patients in planning their care and routine inclusion of their families. Implementation of the NHS ‘Let's Get You Home Policy’ and practice.
• Reconsideration of the quality of care that can be given in the Discharge Lounge for patients who are terminally ill and will not be dis-charged in a short time.
• A review of the practice of readmitting patients through the Emergency Department within days of hospital discharge and a consideration of a patient fast track continuity plan (rather than the admission being regarded as a new episode of care) to avoid this if their condition deteriorates. 
• Involving patients and families in training programs on End of Life.
• Open and sensitive discussion of End of Life Care planning and a consideration of revisiting the agenda that would have been addressed in Dying Matters week which was postponed because of COVID-19.
• Proactive involvement of GPs, and other primary care and community health services and a review of the communications systems between hospital and general practice.
• Improved coordination of the services that already exist including those in the voluntary and charitable sectors and chaplaincies.          
• Rapid provision of resources and care where there are gaps to assure ‘A Good Send-off’.