End of life care in Suffolk and North East Essex

Healthwatch Suffolk undertook research into end of life care due to the increase in the number of deaths as a result of the Covid-19 pandemic and the unique challenges of providing end of life care in these circumstances.  They spoke to 151 people.

The process of preparing for the end of life can be complex. The need for clear and honest communication, between everyone concerned (e.g. the individual, their family, their health professionals and their carers) at every step, is vital to avoid misunderstanding and unnecessary distress.

Whatever the circumstances, people appreciate having the chance to discuss treatment and care options to help them to prepare for death. Through these discussions, patients, family members, and health and care professionals can develop a plan that reflects what is important to them.

Whilst survey respondents were generally positive about the way in which they and their relative had been given an end of life prognosis, around 10% of respondents were not satisfied. The main concerns, for those who were not happy, were:

• That information was not communicated clearly enough
• That the information was not given in a sensitive and caring manner
• That the patient was not offered support when being given the news

People viewed the concept of planning for end of life in different ways. Only six of the 14 interview respondents were aware that their relative had created a ‘formal’ plan in a format that could be shared with others. Those who died in hospital were least likely to have discussed their end of life care preferences with someone else. Everyone involved in the provision of care and support needs to understand what is important to the patient.

Families felt there was a lack of information about what to expect at the end of life. Respondents felt they would have been better prepared to deal with the practical and emotional aspects of seeing their loved one die if they had been better informed.

People were generally quite positive about the quality of the care their relative had received, both in the last few months of life and in the last few days or hours of life. Respondents were more likely to say the practical or visible aspects of care (such as pain medication and being made comfortable) occurred ‘all of the time’, compared to the more subjective or emotive issues (such as being provided with enough emotional support).

Respondents had variable experiences of care within care homes. Some had found the care to be good, particularly in the last few hours or days of life when staff would go the extra mile to ensure the resident was made as comfortable as possible and relatives were accommodated and supported. There were, however, examples where care was less than satisfactory and one case where a safeguarding concern had been raised due to issues of neglect.

Comments about the care provided by the hospices, both within the hospice itself and in the community, were highly complimentary. For those caring for a relative in the community, the hospice was often seen as a catalyst to unlock access to much needed support.

The predominant message arising from the feedback from those who were caring for a relative at home, was that people felt they had fought constant battles to get the help or support they needed. Accessing hospice services within the community often resulted in the unlocking of support that families desperately required.

Whilst respondents’ experiences of care in hospitals was variable, most people expressed dissatisfaction about how their relative had been looked after, with some people expressing the view that poor standards had actually shortened their relative’s life.

The report contains 17 recommendations to improve end of life care for patients and their families.