End of Life Care

Baroness Massey of Darwen Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Massey of Darwen (Lab)]

My Lords, I am indeed grateful to the noble Baroness, Lady Finlay of Llandaff, for raising the issue of end-of-life care and for introducing the debate in such a knowledgeable and sympathetic manner. I also thank the House of Lords Library for setting out the issues for debate in such a clear manner, following the report of the programme board’s review and the Government’s response. I come at this debate from personal experience as my brother died in a hospice last October, having been diagnosed with cancer of the tongue, followed by secondary cancers, in January.

There are many positives about end-of-life care in the UK in all settings, and the intentions expressed to improve it are to be admired. I note the recommendations on offering choice of care; on honest conversations with healthcare staff; on recording of a chosen plan of care; and on having a named responsible senior clinician in charge, and a care co-ordinator. I note the recommendation that carers for people at the end of life should have their needs for support met and that family members, carers and those important to the individual should be involved in discussions about care preferences. Joint working between palliative care specialists and other clinical staff, and between secondary and primary care staff to identify need, is highlighted, as is breaking down organisational boundaries to allow staff working in acute settings to play a role in community settings. There is a welcome reference to NHS and social care organisations working together with the voluntary sector to support hospices in response to the concept of a national framework.

Those issues ring very true when I consider my brother’s path through care in east Cheshire. The staff at all levels were superb, from diagnosis through to treatment and finally to death. The GP visited the home and was understanding and caring of the needs of both my brother and my sister-in-law, who was caring for him at home. The district nurses were wonderful, as were ancillary staff. One of them recommended a hospice respite twice as my sister-in-law, a complete star, was doing a difficult job with resilience and strength but under immense pressure. She was becoming exhausted, caring day and night for my brother. A suction pump for mucus in the mouth and throat caused him to have panic attacks. By this time, he could not speak.

I turn now to some more negative issues. One is about communication. Sometimes there was a letter indicating the next hospital appointment, sometimes there was not. There were phone numbers to contact in case of emergency. This mainly worked—but, occasionally, there was a long wait. For example, my brother collapsed twice, and twice a suction tube became blocked—once at night. Some nurses did not appear to know how to use a suction pump.

But to go back to the positive, services such as physiotherapy were automatically brought in for my brother. I was impressed by the directness of the staff whom I met; there was no dissembling about the serious and inevitable nature of the illness, which helped all of us.

I come, finally, to hospices and their funding. The East Cheshire Hospice was superb. My brother received treatment not only for the clinical aspects of his condition—he received massage, art therapy, reiki, acupuncture and other alternative therapies. He also had wi-fi. There is a centre called the Sunflower Centre attached to the hospice, where my sister-in-law could get advice and treatment if she wished. At my brother’s death, the chaplain ushered the family into the garden, brought tea and biscuits and chatted. None of our family is religious; she simply offered quiet reflection and advice on what next. She knew all the religious bodies in the area, and the humanists, and offered to contact whoever we wanted to take charge of the funeral ceremony. A nurse offered counselling sessions to my sister-in-law. All these non-medical interventions were so important and so life-enhancing in the midst of death. Often, it was little gestures that counted.

It seems that NHS funding does not follow a patient into a hospice, although it would into a nursing home. Hospices, seemingly, have to fundraise to provide their services. Could the Minister explain this situation? Just before he died, my brother wrote me a note which said, “You have to do something about hospice funding”. Well, I am doing what I can. Can the Minister help?