Palliative Care

Lord Farmer Excerpts

Thursday 22nd October 2015 Grand Committee

Asked by

[Lord Farmer]

To ask Her Majesty’s Government, in the light of the Parliamentary and Health Service Ombudsman’s report Dying Without Dignity, what steps they are taking to ensure that everyone who needs it has access to good palliative care and a level of social care that ensures the end of life is valued.

[Lord Farmer (Con)]

My Lords, I am sincerely grateful for the interest you have shown in this issue. To be honest, this is not least because it is the first Question for Short Debate which I have asked in your Lordships’ House, and one is always slightly nervous that it might end up being just oneself and the Minister. I am also appreciative because many of you will be here again tomorrow to discuss the Private Member’s Bill of the noble Baroness, Lady Finlay, on the same deeply important subject.

I hope that our debates will be complementary and not duplicate each other, because I want to range somewhat away from a legislative approach and focus more on the cultural and social aspects of palliative care. Indeed, I am particularly pleased that we have been joined by the right reverend Prelates the Bishop of Rochester and the Bishop of Carlisle because I hope they will touch on the area of spiritual care and comfort, which is sorely neglected in many policy discussions. After all, Jesus spoke more of eternal life than anyone else in the Bible.

This is not a fringe issue but very much at the heart of what it means to be sensitive to the needs of the patient and their family as death draws near. Let us be clear from the outset about the profundity of what we are dealing with here, as individuals approach the moment when they are coming to the end of their human existence in this universe. We might be surprised by how many want this to be acknowledged and are grateful when they are offered spiritual help. “Do you want me to pray for you?” is a question that recognises the fears many are feeling about what is happening.

In my preparation for this debate, I talked at length to palliative care clinicians who have been with many at the end of their lives. One said, counterintuitively, that it is not those who have an active faith who appear most in need of spiritual comfort. The last words of one woman who died a very painful and prolonged death from cancer but who was a fervent Christian were, “God is good, all the time”. It is the people who have a nominal faith, who suspect there’s something out there but have never quite nailed what it is, who often seem to feel confused, anxious and abandoned. Having someone there who can help them make peace with their maker—if that is what they are seeking and, obviously, nothing should ever be imposed— can be incredibly beneficial. In our secular society it is all too easy to brush over this, perhaps especially for clinicians who have so many other aspects of patient care on their minds. The World Health Organization’s definition of palliative care refers to the need for,

“impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.

Earlier this month, the Economist Intelligence Unit placed the UK at the top of its international league table for palliative care, and I do not want to gloss over the very good work that many are doing across the country. However, this Question for Short Debate highlights the Dying Without Dignity report, which summarises investigations by the Parliamentary and Health Service Ombudsman into complaints about end-of-life care. It identifies important themes that I will touch on here.

The number one priority for improvement, because it is the prime mover of palliative care, concerns the lack of recognition that people are dying and the poor response to their needs. For many people that will mean changing the way they are cared for to focus wholly on relieving pain, but also making sure that they have a real choice about where they are going to die, and about how and with whom they would want to spend their time if they had the foreknowledge that death was close. It would enable families to prioritise and mean that symptom control could become the top priority, with care being better planned and co-ordinated. This, perhaps most importantly, can mean that the wish of many patients to die at home can be respected.

Hospice UK believes that the number of people dying in hospital could be cut by 20%. Can the Government do more to help make it possible for more people to die at home, which is the first choice for so many? Sometimes there is only a very short window of time, but being at home for even the last 24 hours can make all the difference.

In one area in the north-east, a clinical commissioning group is contracting with a hospice to support community teams so that district nurses and GPs can ask them to assess patients within two hours. These hospices are acting as one-stop shops in the community—and, if noble Lords will forgive the phrase, “death hubs”. They do not just help those who come through their doors—and only 5% of people in this country die in hospices—but they take their expertise out to people in the area so that people’s closeness to death can be established and proper care can be given.

This approach has kept people out of hospital—always the most expensive place to be—and could be the answer to inadequate out-of-hours services. Even in hospitals, palliative care teams may not come on duty until 9 am, so extremely ill and dying people may be forced to see out the dark watches of the night while suffering in severe pain, with profound nausea and in an agitated state.

I cannot overemphasise the importance of attentive care, not least because basic nursing care can, in some cases, lead to recovery. The inappropriately applied Liverpool care pathway—or lack-of-care pathway—meant that there were many desperately sad cases where people did not receive this. Earlier this year, the Royal College of Nursing and Macmillan Cancer Support reported that some hospitals had not changed their practices, despite the Liverpool care pathway being officially phased out. A distinguished neurologist who first sounded the alarm about the LCP said only a couple of months ago that he regularly hears from relatives who are desperately trying to obtain “active” care for very ill relatives who have been denied it because they are deemed to be dying.

A compassionate approach asks what will make a dying patient make the most of the life remaining to them and how clinicians can work with family and friends to ensure that that happens. Good-quality and honest conversations between GPs and their elderly and sicker patients are essential. Many clinicians who routinely work with very ill patients are reluctant to commit themselves, either to relatives or patients, as to how long someone probably has left, even though this would enable them and their families to make plans. Surely this has a lot to do with our cultural aversion to talking about death.

Your Lordships may have heard of the Dying Matters Coalition’s community initiatives to help people,

“talk more openly about dying, death and bereavement”,

and to make these issues,

“accepted as the natural part of everybody’s life cycle”.

Until I prepared for this debate I had never heard of these, yet the role of the community is incredibly important. When communities, volunteers and families take on more responsibility for care, the costs associated with hospital stays and emergency admissions can be significantly reduced. I therefore have a specific question for the Minister. What, if anything, is the Department of Health doing to create the incentives and support systems needed to encourage more community involvement?

When a dear friend of mine died recently, his loved ones were able to say that he had a comfortable death. I think that that is what all of us would want for those who are close to us, and obviously even for ourselves. I look forward to hearing from the many other speakers in this debate and from the Minister about how we can get this right as often as possible so that a badly handled death becomes almost like a “never event”—incredibly rare because it defies belief that it should happen in a modern and compassionate healthcare system.