The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)
My Lords, first, I congratulate my noble friend Lord Farmer for raising this debate. As my noble friend Lady Perry of Southwark said, the way we die is as important as the way we live. Nothing can be more important. Dying Without Dignity, which was produced by the Parliamentary and Health Service Ombudsman, shed light on a number of cases which were unacceptable and quite shocking, but we should take some comfort from the fact that we have a high degree of transparency. We are prepared to reveal things when they go wrong, and only by doing so can we learn from them and do better.
There are 350,000 expected deaths in England each year. Of this group, many people will require high-quality generalist end-of-life care, and 170,000 will require specialist palliative care. Many of these people receive good care at the end of their life. The fact that there are 12 unacceptable instances in the PHSO’s report should not lead us to believe that that is normal for most people. The most recent National Survey of Bereaved People (VOICES) report showed that three out of four people—75%—rated the overall quality of end-of-life care for their relative as outstanding, excellent or good. I accept that that 75% figure means that 25% of people did not have a good end of life.
Research by the Economist Intelligence Unit, which noble Lords have referred to in this debate, showed that the UK came out top of all 80 countries that were surveyed. Sometimes I feel that those of us who work closely with the NHS tend to beat ourselves up a bit more than we should. However, the fact is that end-of-life care is incredibly difficult. It is very difficult to manage; each case is very different. Therefore, that we come top in that world ranking is very important. One interesting part of that report is that,
“The biggest problem that persists is that our healthcare systems are designed to provide acute care when what we need is chronic care. That’s still the case almost everywhere in the world”.
The CQC has recently begun inspecting hospices. The chief inspector for the CQC said:
“I know from what my inspectors are finding”,
that,
“hospices provide amazing care and support for people at the end of their lives”.
More than 90% of hospices that it has inspected have been rated as good or outstanding.
It is quite easy to think that all deaths in hospital are bad and that somehow all deaths in hospital should be moved to a hospice or to people’s homes. It may be true that that is where most people want to go. However, I can give my experience of my mother, who died quite recently after 14 days in hospital. I can hardly imagine how someone in her state could have been treated at home. She needed constant changes of her oxygen levels, she had to be switched from dry to wet, and her pain relief—diamorphine—had to be changed constantly. You could have that care at home, but it would require 24/7 care at home from trained nurses with a doctor on call. My noble friend Lord Ribeiro referred to seven-day care, and there was seven-day care. In many of our hospitals we provide seven-day care. She had seven-day care with a senior consultant present throughout her stay, including over the two weekends she was there.
Last year, we introduced the five priorities for the care of the dying person to embed these principles in all end-of-life care settings, and we have seen widespread engagement from clinicians across the system to make those priorities a reality. This new approach replaced the use of the Liverpool care pathway, which was comprehensively phased out in July 2014. I echo the words of the noble Baroness, Lady Hollins, who said that many nurses and doctors implemented the spirit as well as the letter of the Liverpool care pathway. Of course, she is right that protocols and tick-boxes can sometimes drive the spirit out of what was originally intended. However, I know from experience that many nurses—Macmillan nurses and palliative care nurses—used the Liverpool care pathway in the way that it was originally intended to be used. On the other point that the noble Baroness raised about inequalities—she referred to people with learning difficulties—the CQC will undertake a thematic inspection that will report next year to look at inequalities and variations in the way that end-of-life care is administered, so she may wish to speak to the CQC and contribute to that.
I know that spiritual concerns, as raised by my noble friend Lord Farmer and other noble Lords, are particularly important to people at this time in their life, and the priorities reflect that importance. They rightly emphasise that care planning at the end of life must take account of the dying person’s spiritual and religious needs as well as their physical, emotional and psychological needs. If we are honest, we do not do dying well, but that is because it is extremely difficult to do well. It raises all kinds of emotions, such as guilt, as well as the sadness that is inevitable around a person’s death.
The right reverend Prelate the Bishop of Carlisle raised the incredibly important work that chaplains do in hospitals, and I agree with him wholeheartedly. Not just chaplains but the whole mass of volunteers who work with them give comfort and support not only to relatives and those who are dying, but also to the staff in hospitals who have to work closely in very distressing circumstances.
I would also like to highlight the work being done by the Dying Matters campaign, which focuses on raising awareness of issues around death and dying and encourages people to plan earlier and think about what is important to them at the end of life. I wonder how many people in this Room have realised only when someone close to them has died that there were things they wanted to say, but never said, and by then, of course, it is too late. I suspect it is part of the human condition.
We know high-quality care relies on good care co-ordination and planning tailored to individual needs and preferences. Electronic palliative care records, “e-packs”, which the noble Baroness, Lady Walmsley, referred to are a very important part of that, so that when someone has expressed a wish it is recorded and does not have to be repeated umpteen times to paramedics, A&E doctors, geriatric doctors and the like. I would like to come back to this in more detail if I can, but I am told that some 70% of CCGs have now got this programme under way.
I am also encouraged by CQC’s new approach to inspection and its welcome focus on end-of-life care. All CQC inspections of hospitals include looking at end-of-life care. Already a number of care providers have been inspected, including hospitals, hospices, care homes and GP practices. Not only has this identified areas for improvement, but it also allows CQC to highlight and celebrate excellent care where it exists. I reiterate that transparency is a very important part of the approach of this Government to all aspects of healthcare.
My noble friend also raised the important issue of guaranteeing access to a level of social care that ensures that the end of life is valued. We recognise the vital role that social care support plays for many people approaching the end of life and their families and carers. Timely access to a high-quality and responsive social care system is critical in supporting people to die in their setting of choice at the end of their life. It also helps to avoid traumatic and unnecessary admissions to hospital. Interestingly, the Economist Intelligence Unit report says,
“People have woken up to the fact that we may be able to save money overall to society by investing in dying better”.
We should perhaps not be talking about saving money. Nevertheless, it is often not only better for the individual, but can be cheaper if we provide better care outside acute hospitals. That is true, of course, in the treatment of many chronic conditions as well.
We want to give people more control over the health and care services they receive, including end-of-life care. We have been promoting greater personalisation in how services can be accessed. This means building support around individuals and providing them with more choice, control and flexibility in the way they access and receive care and support.
Once again, as I conclude, I thank my noble friend for highlighting this vital issue. I think there is a huge measure of cross-party agreement in this area and I look forward to discussing it further in the debate tomorrow with the noble Baroness, Lady Finlay, who is in the Room today. I end by saying that the Government are fully committed to improving standards across palliative and end-of-life care services.