End of Life Care

Baroness Finlay of Llandaff Excerpts

Tuesday 14th March 2017 Lords Chamber

Asked by

[Baroness Finlay of Llandaff]

To ask Her Majesty’s Government how they intend to ensure that Clinical Commissioners respect the undertakings made in Our Commitments to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care.

[Baroness Finlay of Llandaff (CB)]

My Lords, I thank the Government for having provided time for this important debate and declare my interests in palliative medicine, particularly as national clinical lead for Wales from 2008, chair of the National Council for Palliative Care and a vice-president of Marie Curie.

Cicely Saunders founded the modern hospice movement 50 years ago, with activity underpinned by evidence. It was she who said:

“You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die”.


That scientific evidence has shown that morphine, given regularly at the right dose at the right time, can safely get on top of pain. Sometimes, other effective interventions, ranging from expert use of modern sophisticated analgesics to nerve blocks, are needed. Acute breathlessness and acute anxiety can now be managed. Open, calm and honest conversations with patients about their illness, their needs and what lies ahead can transform their experience as death approaches.

Care of the family, including children deeply affected by a person’s death, is core to good person-centred care. It means thinking ahead, planning for “just in case” rather than simply responding. Those facing the uncertainty of life-threatening illness must not feel abandoned, must know that continuity of care at all times will meet their needs, and that unexpected crises will be responded to urgently. Disease does not respect the clock nor the calendar. Help and support must be available whenever and wherever people need them.

I have had thousands of difficult, honest conversations with patients, listened to the grief and pain of parting, to fears and to deep, unresolved guilt. I have seen how those in despair can live well again with appropriate care, often amazed at finding meaning again in their lives when they had given up all hope.

However, it is not easy. Palliative care is not like taking a course of antibiotics that either works or does not. It requires constant review, carefully helping people as they adapt to their new reality. It means “being there”, and patients knowing that help is there for them at home and not just being rushed to A&E.

Relatives who have experienced gentle dying are not usually moved to tell the world of their reassuring experience, but a small number of bad deaths make headlines. Media coverage dramatises difficult situations as “human interest” stories. They sell papers, but they also paint a misleading picture of death and dying normally. Bad care should never happen. The failures identified in the ombudsman’s 2015 report will be addressed only by adequate service provision, tasked with driving up improvements everywhere.

Palliative care has gradually become mainstreamed. In 2008, the Department of Health’s End of Life Care Strategy set England’s plan to improve end-of-life care. A similar planning group, led by Viv Sugar, set out Welsh goals for palliative care services. This created a natural experiment.

In Wales, an investment of £6 million per annum recurring allowed a funding formula to be developed that targeted services to plug gaps and ensure fair access to specialist palliative care wherever a person lived. It has provided face-to-face specialist palliative care across seven days a week and consultant advice to all health and social care professionals on a 24/7 basis. Services into hospitals are proportionate to the number of beds and, across the community, proportionate to the population size. Recent outcome evaluations in Welsh hospitals suggest that this is bearing fruit and that communication is better managed. Pain is being managed. In the last five years, more than 8,000 patient and family evaluations have shown outstanding ratings of their specialist palliative care experience overall. The average is high.

In any one year, 0.75% of the population overall will have palliative care needs. Death is ubiquitous and inevitable. In 2015, almost half a million people died in England and more than 33,000 in Wales.

Reports since 2008 include the NICE quality standards, an independent funding review and One Chance to Get It Right. Then in 2015 a collaborative of providers published six high-level goals in Ambitions for Palliative and End of Life Care. In 2015 Claire Henry, commissioned by the Government, published What’s Important to Me—A Review of Choice in End of Life Care. People have clearly stated that they want the right care, at the right time, from high-quality, well-trained staff. They want honest conversations, not unrealistic expectations. They know that disease does not respect the clock or the calendar. People want to be involved in discussions about their care; they want to make sure that staff know their wishes and that all needs—physical, emotional, social and spiritual—are addressed. People facing dying want to know that their families are supported and involved.

The Government’s response last year addressed much of the report, showing synergy with the main themes of both the choice review and the ambitions framework. However, the review called for an investment of £130 million. The Government declined, stating instead that end-of-life care was to become a core priority within the NHS transformation programmes:

“Improvements to end of life care should not occur in isolation. They should be threaded through the most effective New Models of Care that will deliver the new, transformed NHS. Sustainability and Transformation Plans (STPs) should fully take into account the contribution that sustainable, efficiently designed end of life care services can make to achieving better outcomes for dying people”.


I was unconvinced that this was happening, so in 2015 my researcher and I analysed responses from all 209 clinical commissioning groups to a freedom of information request about their specialist and other palliative care services. We found wide variations across England in the core data that they collect and a disparity in the responsibility of service provision between clinical commissioning groups, trusts and local voluntary sector hospices. The decision-making devolved down to clinical commissioning groups suggests that palliative care is not being considered as a core service in some parts of England, despite much evidence of its cost-efficacy.

Two important randomised controlled studies of specialist palliative care input have shown that patients have a higher quality of life and better moods. Not only do they live better, but they also, surprisingly, live longer with good palliative care support, at no additional overall cost. Good palliative care saves money.

The Government’s vision in 2009 created Dying Matters to empower people to talk, live and plan. A national conversation started with a focus on wills, how to get help, and how to ensure that someone can speak up for you if you cannot. Compassionate communities are growing, encouraging people to look out for each other, do what they can, and not shy away from those who are ill or bereaved.

But then came the sustainability and transformation plans. Preliminary analysis looks grim: they do not reflect the Government’s stated intention. Almost half make no mention of end-of-life care at all, or only transiently, and only six of the 44 STPs actually embed end-of-life care as a strategic priority.

Public Health England has just published guidance on Cost-effective Commissioning of End of Life Care. It is a worthy review, but it does not provide a clear template to plug gaps. The Government’s commitment of last July was that,

“every person nearing the end of their life should receive attentive, high quality, compassionate care, so that their pain is eased, their spirits lifted and their wishes for their closing weeks, days and hours are respected”.

However, gaps remain. Today’s King’s Fund report shows the impacts of financial constraints on patient care, particularly in the community. So I respectfully ask the Government whether they will now look again at a framework funding formula that works in conjunction with voluntary sector providers—who do so much—to make sure people everywhere can access the care they need rather than depend on the lottery of commissioners’ views.