End of life care - getting it right

Clinical Adviser

In light of today's parliamentary hearing into our Dying without dignity report, clinical adviser, Charles Turton at the Parliamentary and Health Service Ombudsman discusses the importance of making sure people get the right care at the end of their lives.

It's been four months since we published Dying without dignity, our report into NHS end of life care. It highlighted harrowing cases where people's suffering could have been avoided or lessened with the right care and treatment. Today, 15 September, the Public Administration and Constitutional Affairs Committee (PACAC) is holding a hearing prompted by the issues raised in our report. They'll be speaking to Ben Gummer MP, the minister responsible for end of life care. This is a milestone for those of us who worked on the report, namely because it was one of our aims to contribute to the wider debate on end of life care, and to share what was learned from our own work.

Our earlier publication, Care and compassion, alerted us to the need for a report that looked in detail at poor palliative care. Published in 2011 Care and compassion highlighted appalling examples of care given to older people as they approached the end of their lives. Following its publication, we continued to see terrible experiences of end of life care in our casework. It was clear that it was a subject of wide importance and interest and this led us to producing Dying without dignity.

There are two key themes that come up time and time again in many end of life care reports. First, there is the need for strengthening community support to allow people to die where they choose to, which would let them be comfortable and feel dignified in the face of death. And secondly, the need to develop specialist palliative care services so that people who are dying can use them at any time. Having worked very closely on the report, I hope that as a result of the PACAC hearing, it will be possible for the NHS and social services to work together on these two themes that will make a massive difference to the care people receive at the end of their lives.

 If a loved one is dying, talking with them about their care makes it much more likely that their wishes, and what is important to them, are met.'

The National Palliative and End of Life Care Partnership (the Partnership) recently released its 'ambitions' statement which included six key aspirations for end of life care. These were for:

  • people to be treated as individuals
  • all to have fair access to care
  • people to feel comfortable and free from distress
  • care to be co-ordinated
  • all staff to be prepared to care
  • communities to be involved.

We welcome these ambitions, which pick up all of the key concerns identified in our report. Decision making in the NHS is decentralised, so the Partnership can only make clear what it feels should happen. It's now down to PACAC to hold health and social care providers and commissioners to account, to make sure these ambitions are acted on.

For the public, the key issue I want people to take from the report is communication. I am a retired clinician, and I have seen first-hand how clear and open conversations about how someone's end of life care is going to be managed, can make a huge difference. If a loved one is dying, talking with them about their care makes it much more likely that their wishes, and what is important to them, are met. This will also allow those who are left behind to better come to terms with their loss, because they are not left thinking more could have been done to improve the last few days of their loved one's life.

I also think it's important for people to understand another damaging impact of poor communication when it comes to end of life care; one of the key themes identified in Dying without dignity. This covers poor communication between professionals and the patient, professionals and relatives or carers and professionals and their teams. Being aware of this allows families and carers to ask themselves 'does everyone who needs to know about my loved one's care, really know?'

We are all going to die; getting it right for those close to us will help us when our time comes. And the more people who can get end of life care right, the more people there will be in our communities who will understand and support those who are struggling to cope right now.