Professor Bee Wee is National Clinical Director for End of Life Care at NHS England and NHS Improvement.
In this role, she provides strategic leadership for improving palliative and end of life care across England.
In 2015, she co-led the development of the Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020 in conjunction with 27 partners across health, social care and the voluntary sector. She was awarded the Presidential Medal by the European Society for Person Centered Healthcare for her academic, policy and clinical contributions to person centred healthcare in 2017. She received an Honorary Doctorate of Science from Oxford Brookes University in 2018. She was awarded CBE in the Queen’s New Year’s Honours 2020 for services to palliative and end of life care, and later in 2020, was nominated Women of the Year.
Originally from Malaysia, she trained in medicine, then general practice, in Ireland and worked in Hong Kong, then became Consultant/Senior Lecturer in Palliative Medicine, and later, Deputy Director of the Medical School, Southampton University. She moved to Oxford in 2003 as Consultant in Palliative Medicine at Sir Michael Sobell House, Fellow of Harris Manchester College and Associate Director of Clinical Studies at Oxford University, and Head of the Oxford WHO Collaborating Centre for Palliative Care. She is a Past President of the Association for Palliative Medicine of Great Britain and Ireland.
Her clinical and academic base remains in Oxford, where she is also Clinical Lead for the palliative care services provided by Sobell House, which includes specialist inpatient beds, day services and outreach teams into the community and the Oxford hospitals. She is Associate Professor at Oxford University, Visiting Professor at University of Worcester, Honorary Professor at Sichuan University, China, Trustee of the Faculty of Medical Leadership and Management, and a Governor at Christ Hospital. In her spare time, she enjoys cooking, eating and allotment gardening with her husband, Richard.
Presentation (Dr. Bee Wee, was speaking to us from her home in Cambridge, UK.)
Developing guidelines for palliative and end-of-life care is an incredibly tough task, one that Professor Bee Wee has bravely taken on in her role as the National Clinical Director for End of Life Care at The National Health Service in England. Palliative care is highly complicated by nature, lacks the necessary resources, and is highly stigmatized. However, it needs to be talked about.
Every one of us will be affected by palliative care, whether it’s for ourselves down the line or for someone we care about. There is a lack of resources when it comes to palliative and end-of-life care. Globally, the population is growing and ageing. As healthcare has been improving, people are living longer in general, and with diseases. For example, someone with cystic fibrosis who once was only likely to live into their 20s can now live well into their 40s. In conjunction with this, we also have an ageing and reduced workforce with the Boomer generation’s retirement. Additionally, there is a lack of national data on the subject of palliative and end-of-life care. It is incredibly difficult and often costly to collect meaningful measurements. For example, while it is much easier to collect information on when and where someone died, it is much harder to collect data on the quality of death and care, and whether or not that person received care in their preferred location (hospital vs home). People do not like to talk about death, and neither do politicians. This stigma has led to a lack of funding being earmarked for palliative and end-of-life care. Because we don’t talk about it enough, we also do not have a proper understanding of the true economics of palliative care and how its value is reflected in our societies.
End-of-life care is also highly individual and, therefore, highly complex. It is not bound by condition, time, or age. While it primarily affects older folks, people of all ages suffer from life threatening illnesses. A person’s expectations of palliative care are based on their personal perceptions, experiences, values and attitudes. Unlike treatment for something like a surgical procedure, palliative care is hard to categorize. It requires a holistic wrap-around approach that looks at physical, psychological, and spiritual support. People are now living with more mul-morbidities and multiple life-altering conditions. Finally, the issue of worldwide and national equity gaps also needs to be considered. Studies show that folks with the lowest socioeconomic status have more multi-morbidities ten years earlier than those that are in the highest socioeconomic class. Age compounded with other inequalities such as socioeconomic disadvantages, BAME (Black, Asian and minority ethnic), LGBTQ2IA+, homelessness, imprisonment, individuals living alone or far away from family, and those suffering from dementia and learning disabilities are all more at risk of receiving poor palliative care.
The health care system in England recently restructured from a command and control approach to a localism approach. Both methods have their pros and cons. It is very difficult to provide personalized care from a large centralized perspective so patients are more likely to receive a more blunt approach. However, using a localism approach means that where you live affects the services and the quality of services you receive, which results in a postal code lottery and exacerbated inequities. So, how can we scale up and reduce variation safely and effectively while still providing a very personalized approach to end of life and palliative care that addresses everyone’s unique needs? Many organizations decided to take on the challenge from different angles and at various scales, each developing their own set of recommendations. Overall there were hundreds of overlapping and confusing recommendations on the topic of palliative care. In 2015, Professor Bee Wee took on the task of co-leading the development of a national framework for local action. Over 35 partners across health, social care, and the voluntary sector were all brought together to condense all of the recommendations from all of the different reports into a framework that everyone could agree on. This framework would eventually be known as the Ambitions for Palliative and End of Life Care. Their relationship building was the most critical piece, given that everyone was coming from different experiences and values. The team worked together and developed a vision written in the first person, “I can make the last stage of my life as good as possible because everyone works together confidently, honestly, and consistently to help me and the people who are important to me, including my carer(s).” By writing in the first person, the statement felt personal and could ensure that everyone was on the same page. Whenever there were disagreements, the team could return to this statement to connect them.
To bring about this vision, they developed six simple accompanying ambitions:
1 Each person is seen as an individual
2 Each person gets fair access to care
3 Maximising comfort and well-being
4 Care is coordinated
5 All staff are prepared to care
6 Each community is prepared to care
Each ambition is also expanded upon on their website in the form of an “I” statement and comes with a set of building blocks to help achieve the goals. There is also a set of cross-cutting foundations developed to help meet the ambitions, with leadership and co-design being the most important. The framework is now in its 5th year. Fortunately, colleagues in the field are very pleased with their progress using the system and want to continue this route. They have asked, “Please, no more changes.”
Terminology:
Palliative care : The care given to people with advanced diseases that are progressing and cause life-limiting conditions.
End of life care : The care given during the estimated last year of life.
Dying Phase : Someone’s last days or hours.
Questions and Answers:
Question: What is the difference between Social Care and Private Care where the patient pays the full cost, either themselves or through an insurance plan?
Answer: So in England, we have very few insurance plans at the moment. So, for example, if you’re in a care home or you’re needing social care support, if you’re means-tested so, in other words, your assets are below a certain level, then you will get free social care or the local authority will pay the care homes for your social care. The problem with that of course is that quite a lot of older people may have assets, but they may not be liquid assets. So, therefore paying for social care can be quite expensive. So, that’s the difference and people who are above the means-tested level they have to pay for private care themselves if they wish to have care whether it’s at home or in a care home.
Question: What are your comments on assisted suicide?
Answer: Assisted suicide is unlawful in the UK so, it’s not something I have personal experience of, and what I’m about to say is a personal view, not a view in relation to any of my organizations. I think as things stand, the few times that a bill has been brought forward about assisted dying/assisted suicide, I have not yet been convinced that the safeguards have been adequate. I understand the arguments on both sides and unfortunately, I think the arguments have become very polarized on both sides which makes it difficult to have a reasoned discussion about what I think is a really difficult topic. Of my understanding, and again, this is an understanding that’s theoretical rather than based on personal experience, is that the people who have opted for assisted suicide in countries where this has been lawful have often been people who have wanted to be able to have the control and that sense of being able to control their destiny and their time. That for me, in terms of turning that into law, has to be balanced against how do we protect people who might feel vulnerable or who might feel that they had to go for that option in order to protect other people or to stop being a burden and all of those things? So, I think that it’s much more complex than just a straightforward kind of yes or no. So, I think that’s kind of where I will leave that discussion for now, but very happy to engage in more if got more questions or thoughts on this.
Question (asked verbally): Right now in Canada there have been laws passed which allow it, but they were challenged in court and the court said that we had to be more lenient I guess, and they gave a court-imposed deadline and it’s coming up now December 18th that they have to pass legislation, which is for MAID (medical assistance in dying) and there’s certainly a lot of interest in that in Canada at this point in time. I’m not sure if there’s anything more you can really add related to that or if you have much knowledge on that.
Answer: Not really. I guess a question that’s quite interesting in our country, whenever it’s come up, is in terms of medically assisted, is that groups of doctors, I suppose I’ll break them out into certain groups, so quite a lot of doctors who think it should be made legal would not want to do it themselves. So, that kind of comes down to a bit of a practical issue around, if I think it’s you know, I’d like it to be lawful, but I actually don’t want to be the person carrying it out. That’s a discussion that kind of still needs to happen, certainly here.
Question: Is there ever a time for family to force a family member into care?
Answer: I think the answer is no. I would like to think, however, there also may be situations where if somebody doesn’t have mental capacity and is unsafe to be at home, I think families are faced with an intolerable decision about what do they do? How do they keep somebody safe? I think if somebody has got the mental capacity to be at home, even if you don’t think they’re particularly well looked after at home, that’s their choice and we should be respecting that, but I think is when they’re not capable of making that decision that it’s really hard. The workforce is quite emotive. I’m not sure what I think of that, but I think it is a really hard thing to do.
Question: How do you assist people who can’t speak for themselves?
Answer: Several things there. One is, I think as doctors we always have to act in the person’s best interest. That’s kind of just what we do. However, how we choose to act in somebody’s best interest or how well informed by somebody’s best interest if we don’t know them, is that we need to be informed by those they do know and those whose opinion they trust and respect as best we can. It’s always more of a disadvantage of course if it’s somebody you don’t know at all, but a lot of family doctors will have some impression of that. The other thing we try and do is to say to people if you anticipate that there might be a time when you can’t speak for yourself then tell your family. If you’ve got any strong feelings, write down your care preferences and so on. That’s what we call advanced care planning here. Which is that you write down what your future care wishes might be in anticipation of a time when you might lose mental capacity. And we would often say that, for example, to people who’ve been diagnosed with early dementia. Do write it down. You can always change your mind, but do write it down because then that helps to guide care.
Question: Some have suggested dying at home is preferable. Do you find that is the case or not? Is it related at all to cultural backgrounds?
Answer: Yes, I think preferences may well be related to cultural backgrounds, but in my experience, it’s often related to practical issues too. About, you know, can you manage care at home? How is it? So there are the physical, practical issues around having somebody to care for you, having the space to have a hospital bed or have a commode at home that allows you to have that care safely and reasonably comfortably at home. If you live in a cramped single-room flat that becomes really difficult. However, I also do think that it’s not just about physical comfort and safety. Some people feel very insecure at home or their families feel very insecure providing that care at home. So, I think we have to be really careful that we don’t impose on somebody an impression or an ideology about how care should be, but actually, work with where they are at and what their views are and recognize also that they may change their mind. As things change, people change their minds.
Question: Cost is also always a question at the national level; has your organization got a perspective as to what is the most cost-effective method of delivering services is, in general?
Answer: So we are very lucky because we have a general taxation approach to the National Health Service (NHS). So in terms of cost, that is probably the most efficient way of funding health care in general. Now one of the tricky things that I mentioned about measurement is that it’s actually much easier to measure the cost of care when somebody is in hospital. It’s much harder to measure what the cost of care really means to somebody at home. So, we can measure how much it costs per bed per night and treatments, and therefore we come to the conclusion that hospital care is necessarily more expensive. Actually, if somebody’s at home, and you don’t have the hospital’s mass of carers and so on, the cost of care can be much higher and it can be much higher to the person who’s looking after them, the family member who maybe can’t continue being employed. So it is a much more nuanced thing I think working out the cost of care than analysts might have it. We did a really interesting piece of work not that long ago that we published, on somebody with Parkinson’s disease. We took the natural history of somebody from diagnosis through to after they died and we speculated what care would be like normally. So, with all its kind of, you know, strengths and weaknesses sort of standard care, what that would be like. We then rewrote that story with a more ideal care. So starting palliative care intervening much earlier having a much longer involvement in care etc… And then we costed every element of that, including the unpaid element. What was amazing was that if you do it well and do it properly, even if you’re involved earlier on, it actually cost 30% less than if you came in late and try to do everything not so well. So, those were kind of important things for us to think about.
Question: I have heard from realtors that some buyers insist that the seller confirm that no person has died in the home. Have you encountered this view and seen it affect a decision to stay at home?
Answer: I haven’t encountered this in the UK, but I did when I worked in Hong Kong. I worked in Hong Kong for about three years and because of the Chinese superstition around death and dying that was one of the reasons why families really, really did not want the person to die at home because it did affect the price of the home subsequently. I don’t know what it would be like in Canada.
Question: My step-brother in England needed prostate surgery recently and would have had to wait about a year to get it done on the NHS but was able to get it within a week or so by “going private”. Yes, he did have the insurance to cover it. Is this a common situation?
Answer: Sadly, it is becoming a bit more common, and it’s one of the things that we do have to do as a National Health Service is you look at sustainability and the costing and so on, and some people do choose to go private.
Question: Do you provide support services for families and for how long after a loved one passes?
Answer: We would consider supporting families as part of that holistic package of supporting the patient. So, we don’t separate out the two. So for us, supporting families all the way through is really important and clearly for after they have died too. How long depends on how long they need that support for. It’s also really important that we don’t medicalize bereavement which is a normal human process. So, we’re there to support very gently in the background, recognizing that there are people who need much more medical support, but for the vast majority of people, support by their family and friends is really what they want and really what benefits them more than anybody else.
Question: Do you recommend paying (at some level) family caregivers?
Answer: That’s an interesting question? In principle, I would say yes, but actually in practice that’s quite hard to do, or at least offering the payment, because don’t forget not everybody would want the payment. But if it means that somebody can stay at home then they get it. Now, our welfare system does allow for that so, if looking after somebody at home, you can get an attendance allowance. It’s not a huge amount, but it does mean that somebody who’s no longer able to go to work because they’re caring for somebody can have that and if somebody is in a terminal phase of illness, then they can get a higher level of attendance allowance and that does help enormously for that.
Question: Is there a system of hospice houses in Britain?
Answer: Yes there is. Hospices are a very big part of the provision of palliative care in the UK, but it’s slightly different. I don’t know the system in Canada. But for example, I do know that in the USA that you can only go to hospices if you are not having any treatment at all, so there’s much more of a divide and there’s much more of a timeline between that. There isn’t in the UK. So hospice provision can come alongside people having palliative treatments. But what you can no longer do, which you could do in the past, was almost pack your bags and go and live in a hospice. The pace of and demand on hospice beds means that we can no longer do that. So the average length of stay in a hospice is about two weeks. But we can make a difference to particularly things like pain control and so on before somebody going out.
Question: How is care different if the patient has dementia or not?
Answer: I don’t think it is that different. It’s just that the person’s involvement in their care may be more limited. I think actually if anything we should be providing more care for people with dementia, and there is quite a big dementia program in this country.
Question: Regarding emergency palliative admissions – as a recently retired home care nurse I have seen that it is important for a lot of education for family physicians and home care nurses so that patients can be comfortable at home and that early intervention for issues can be addressed. Can you comment on this? Thank you.
Answer: Absolutely. Education and training for non-specialists in palliative care is kind of core to what we do as specialists. That would be just a standard piece of work. So we do things around direct care, we do things around indirect care, and we do things around education and training because firstly, there is no way we can provide all that care, but secondly, for people who already have very strong relationships with their own family physicians and their own home care nurses, it’s important that we support them to provide the care rather than take over.
Question: When is the best time for the family to start a dialogue about this subject? Thank you.
Answer: Anytime would be the answer, and in fact, the sooner the better. It is easier to have a conversation if you’re not in crisis. It’s easier to have a conversation when you’re feeling relaxed. There’s no need to have a kind of sit down and have a deep heartfelt conversation. They can be quite light conversations. It can be conversations that are in passing. They can be family conversations. But what that does do is that it brings it out into the open and your family has a sense of what your views and preferences are.
Question: In the UK, are there significant differences in this area among England, Scotland, Wales, and Northern Ireland?
Answer: Not significant, but some differences because healthcare is something that is devolved to the different governments. So, there is a separate health care system for England and Scotland definitely. Sometimes some of the things we do in England are for England and Wales, but the department of health that I work for is actually for England only. So, my work as National Clinical Director is for England only, but I do have regular conversations with my counterparts in Scotland, Wales, and Northern Ireland because really the background isn’t that different, and we can learn and share a lot with each other.