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A different ending: reflections on CQC report on end of life care

At the CQC we have just published our new thematic report, A different ending: Addressing inequalities in end of life care, which examines the experiences of end of life care for different population groups in 44 clinical commissioning group areas across England.

Our studies found that people with diagnoses other than cancer and older people, who form the majority of those who die, are sometimes overlooked in a system which is designed around the needs of others. People told us that they felt they were not always able to access the right care at the right time, particularly if they had conditions other than cancer.

It is clear that identification of the end of life phase can be difficult, particularly for people who have conditions other than cancer, frailty or dementia. Talking about end of life care is challenging for everyone, including health and care staff, but people told us how important good communication is in getting care in the last phase of life right. A shift in focus away from identifying people who are clearly in the last year of life, and towards having conversations about wishes and preferences for care in the last phase of life at an earlier stage, is needed.

“My mother, who died of old age at 86 … wished to die at home in her sheltered accommodation. She was admitted to hospital two-three weeks before she died and, expressly against her repeated wishes, she was given intravenous fluids and fed. While my mother knew she was approaching end of life (and welcomed it…), the hospital consultants did not recognise that … The week before she died we were finally able to persuade the hospital to put her on the end of life register and we moved her to a palliative care bed in a local nursing home where she finally received the morphine she needed two-three days before she died.”

 “It’s incredibly difficult to identify the last year of life without cancer. When we opened the respite unit, the two first patients had advanced COPD. [If I had been] asked at the time I would have expected both to be in the last year of life, but both lived for three years. There are indications that people are at the end but it’s incredibly difficult to know when they’re in the last year…”

In many cases lack of understanding of people’s needs is still preventing people from receiving good end of life care. The needs of people from some groups, including people with a mental health condition, people from black and ethnic minorities, people with a learning disability, people who are homeless, and Gypsies and Travellers, are not always considered by services and commissioners. People from these groups are often also excluded from wider health services, which is a significant barrier to receiving good care at the end of life.

Getting end of life care right for people with conditions other than cancer and older people is imperative – the majority of people die of conditions other than cancer, and are aged over 75 when they die. Of the approximately 500,000 deaths in England and Wales in 2014, only 29% were caused by cancer.

The age at which people die is increasing as people are living longer; two thirds of people who die are now aged 75 or over. Dementia and Alzheimer’s disease are the leading cause of death for women.  1% of the population will have a predictable death in a year and GPs are encouraged to find their 1% through the Dying Matters campaign.

GPs have the unique position where they are able to identify people at end of life, as well as coordinating and overseeing of end of life care. GPs should have a palliative care register to support this.

GPs reported that they felt uncomfortable having the discussion when the person was under specialist care if the specialist had not initiated discussions. It is therefore important that the system works together to identify people who may be approaching a time to discuss plans for the later stages of their illness.

A high proportion of people living in care homes are likely to be at the end of their lives. Health professionals will visit these patients and should work closely with care home providers to identify and support this potentially hidden population at the end of their lives.

We have published an overview report and a collection of good practice case studies we found during our field work plus a collection of people’s experiences of care for the ten population groups we looked at.

Guidelines on end of life care

The General Medical Council’s definition of end of life care:

Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:

(a) advanced, progressive, incurable conditions;

(b) general frailty and co-existing conditions that mean they are expected to die within 12 months;

(c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition;

(d) life-threatening acute conditions caused by sudden catastrophic events.

National Voices and the National Council for Palliative Care use the following description of person-centred, coordinated end of life care:

I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).

Five priorities for care of the dying person

The Leadership alliance for care of dying people (a coalition of 21 national organisations including CQC) agreed five priorities for end of life care for all health and care staff to achieve. They aim to focus on the individual, with a personalised approach to improve care of the dying, their family and carers. This followed the review and phasing out of the Liverpool Care Pathway in July 2014.

These five new priorities are set out in ‘One chance to get it right’ and make the GP practice role in delivering these priorities clear.

What CQC will be doing as a result of this report:

  1. We will reflect the importance of good quality, personalised end of life care for everyone in the development of our future regulatory approach, and encourage improvement in quality of end of life care for the groups considered in this review.
  1. In services where we provide a rating for end of life care, including hospitals, community health services, and hospices, we will reflect the importance of end of life care meeting the needs of people from different groups, and strengthen our assessment of whether end of life care services are meeting the needs of these groups.
  1. In services which provide end of life care but where we do not currently provide a specific rating, including adult social care services and GPs, we will include an assessment of quality of end of life care and whether it is meeting the needs of different groups, and in GP assessments, include an assessment of whether the service is ensuring early conversations and coordinated end of life care for people from different groups.
  1. In services which provide health or social care to people who are vulnerable because of their circumstances, we will consider how the service identifies and communicates with people and, if relevant, delivers end of life care.

What else do you think we should be doing in the medical profession? Please add your comments below.

Find out more

Treatment and care towards the end of life: good practice in decision making (GMC guidance)

Dr Elizabeth Kendrick is National Professional Advisor for Older People at the Care Quality Commission, and has supported the national thematic report studying inequalities in end of life care. She is a GP in Buntingford, Hertfordshire and GP with special interest for older people in North Hertfordshire.

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