End of Life Care

Philippa Whitford Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

As has been mentioned by several Members, we all share one thing in common: we are all mortal. Although some people think they are not, we will all die. In this House, we make decisions about provision for things that might happen, but this is something that absolutely will happen to all of us and so we all have a vested interest in making sure those services are as good as possible. Three quarters of people who die do so expectedly, which means they die of an ongoing illness they already have. About a third of those are cancer patients, and the palliative care system has focused on them since its inception in the 1960s. As has been said, we should rightly be proud of the fact that the UK is listed as No. 1, but that is largely to do with inputs and resources; it is not always to do with outcomes, because we cannot always measure those. A lot of that top position we owe to the hospice movement. We owe it to people such as Dame Cicely Saunders at St Christopher’s hospice. Everyone here knows my background, but even when I was a medical student this was my interest. My fourth year dissertation, “On Death and Dying—Home, Hospice, Hospital”, was written at a time when we had hardly any hospices and this was a new-fangled specialty.

The problem is that that is not the choice people are getting, as we have heard from Members from across the House. In Scotland, we did an audit in 2010 and again in 2013 which involved every single person in hospital on one day and following them up for a year. That showed that a third of people in hospital—it was exactly the same both years—will die within a year. That backs up a well-known fact that the majority of healthcare is spent on people in the last year of their lives. Some 10% of those people actually died on that admission, and the average stay of someone who dies in hospital is about two weeks. Some of those will be deaths we did not expect—they will be things that went wrong. However, a lot of them—three quarters—will be people with an expected illness. It is not just wasteful and it is not just futile, but for the family and the patient it is distressing.

We have heard about how people get stuck in hospital when they would like to be somewhere else. The question is: why? The No. 1 reason is that we do not talk about it; the family have not talked to the patient and the patient has not talked to the doctor—nobody has broached the subject. As someone who has been a cancer surgeon for 30 years, I know that it is difficult. I have often had to help families and patients open that conversation. There are people who say, “I won’t tell my mother”, or, “I won’t tell the children.” The family needs to be front and centre with this. One of the advantages of being at home is that people are in their own intimate space together. They have one luxury: the opportunity to say goodbye. People may have a row, go out the door, slam it and never come back. That is the worst loss. People need a chance to prepare. They need to make sure that they are at peace, that everything is organised, that they are not worrying and fretting, and that their families have the chance to say that they love each other. There is also the need to reconcile. Perhaps that person who went off in a huff 20 years ago comes back. That last bit of time is very precious.

In 2010, Scotland conducted a review of the “do not resuscitate” policy. We moved to what was described as best practice. That answers some of the issues raised by the hon. Member for Faversham and Mid Kent (Helen Whately)—people being scooped up by the ambulance and taken somewhere else. This was not just a tick box that the nurse or the doctor went through; it was a discussion that was shared with everyone.

The core person in all this is the GP. The GP provides the continuity. In Scotland, the summary care record is used for out-of-hours care. The GP must register a patient on the palliative care register, and that is automatically shared. If, at the weekend, someone is called in, they know what the aim is, which is that that person wants to die at home. If someone has been kept at home for months with lots of support, there is then nothing worse than if, in the last 24 hours, the family panics—“Mum’s got worse. What do I do? Dial 999”—and the person ends up in an ambulance and then in hospital. That is just a disaster.

As the hon. Member for Totnes (Dr Wollaston) said, we need to tackle training. We need to train our students, our doctors, our nurses and our carers in all the settings, because people will die in all the settings. People will still die in hospital. That is unavoidable, as was said by the hon. Member for Strangford (Jim Shannon), who is no longer in his place, but it is not an excuse for poor care or poor communication.

Ayr hospice in my constituency provides the liaison services to the hospital in which I worked, so we had palliative care consultants, liaison nurses and training for other staff. We also have a beautiful hospice that provides outreach and home care, and is trying to educate the whole community.

In Scotland, the funding of hospices is 50:50, whereas here, as we have heard, the average is a third, so it is very variable. Hospices now talk about the increased complexity of commissioning. Many of them deal with multiple clinical commissioning groups—the average is four—and they feel that they are having to jump through many hoops in exchange for whatever bit of finance they get. Hospices need to be put on a safe financial basis, and they also need to be able to plan their funding for the future.

We must not forget the care home. By 2030, a quarter of us will die in a care home, and that is the thing that many of us are most frightened of. That is because we have a sense of it as a place that we are tidied away to, and we fear that. We need to improve the quality of care homes and to individualise the care. We also need to introduce this end of life and palliative care philosophy to those homes.

Of course, the prize is dying at home. That is what 80% of people choose. In Scotland, we are lucky because we already have free personal care. Patients who are under 65 and have had a DS1500, which defines them as within six months of death, get free social care. We do not have the barrier that there is in England of either the difficulty of paying or the sheer time it takes to go through means-testing to get care organised. None the less, we have our challenges. The social care has to be in place. We know that all local authorities are struggling to balance their budgets. As has been mentioned by Macmillan, Marie Curie, Nuffield and the palliative care review five years ago, this would save money in the long term. However, the money cannot just be taken from the hospital and given to social care or to palliative care, because the hospital would fall over. We have to double-invest initially because, as with a Rubik’s cube, we need that little bit of space to move the first piece before anything else will happen.

This has been going around since 2011, and we are calling on the Minister to grasp the nettle and rise to the challenge. We need to follow the patient and support them through the whole journey and, as was mentioned, to support people after that journey through bereavement, to ensure that they have access to support and are not left struggling after the loss of a loved one.

It is well known that people will cope with bereavement better if their loved one has had a good journey. As was mentioned, in the assisted dying debate we threw down the challenge that if we voted against that, we had to provide high quality palliative care, to allow people to end their journey not in fear, not in pain and not feeling a burden. I call on the Minister and the Government to rise to that challenge.