This is the first large-scale study of its type with over 22,000 bereaved carers (defined as relatives, friends or carers) returning a questionnaire asking about their experience of a loved one’s death. Death certificates were also examined. The report is long, so I’ll mention a few points of relevance.
75% of respondents rated the quality of care their loved one received in the last three months of life as ‘outstanding’ to ‘good’. However, dignity and respect was reported as being much higher in hospices than in hospitals. The majority of patients (85%) had been involved in decisions about their care and over two-thirds of respondents reported that no decisions had been made about care which the patient would not have wanted.
There was not a question on whether the patient exercised their rights at the end of life by completing an Advance Decision (or recording their medical-treatment wishes in the event that they lose capacity in some other way). However, for those who expressed a preference, the majority preferred to die at home (71%), although the most commonly recorded place of death was a hospital (53%).
A cause for concern is that only 40% of healthcare staff had a record of where the patient would like to die. With the use of tools such as Preferred Priorities for Care being encouraged across the NHS, I’d hope to see this figure shift in the coming years.
On a more positive note there wasn’t a significant reported difference between the quality of care for those who had dementia (which made up one fifth of all deceased people in the study) and those who didn’t. It is crucial that those people with early-stage dementia are given the opportunity to record their end-of-life wishes. The National Institute for Health and Clinical Excellence (NICE) quality standards for dementia promotes this practice.
On a final note, the report indicates the need to develop better end-of-life care at home. Relief of pain (when relevant to care) was reported as being provided ‘completely, all of the time’ most frequently in hospices (62%) and least frequently among those at home (17%). This does not necessarily mean that care at home is being delivered to a poor standard, but lessons could be transferred from the hospice setting.
The results of this survey are very encouraging in the most part. The majority of patients are experiencing good care at the end of their lives, regardless of their condition. There is still a long way to go to ensure that people are dying in their preferred place of care, and that care and treatment at home is as good as care in hospital and hospice.
The other area of end of life care which needs more work and investment is the involvement of patients in the decisions made about their care, and the recording of those decisions. Many patients know what choices they would make at the end of life, and it is crucial that those wishes are recorded and respected.