End-of-life care: why we need to talk about dying

Key:

• RR:    Ruth Robertson

• LG:    Lesley Goodburn

• JP:    John Powell, MBE

• AA:    Angie Arnold

• BW:    Bee Wee, CBE

RR:    It’s something that affects us all yet talking about or planning for end of life care, either for ourselves or our loved ones, is something that many of us find incredibly difficult.  The death of Her Majesty the Queen earlier this month and that of journalist and campaigner, Dame Deborah James, back in June have in many ways opened up national conversations about death, dying and grief like never before.  That makes it all the more pertinent perhaps that end of life care is the subject of this episode.

Welcome to The King’s Fund podcast where we explore the big issues and ideas in health and care.  I’m Ruth Robertson, a Senior Fellow at the King’s Fund. In this episode I’ll be exploring end of life care, what makes a good death and what needs to happen to ensure that everyone has access to the care and support they need as they approach the end of their lives.

To start, I wanted to find out more about end of life care and how this is experienced by people facing the end of their lives and their loved ones’.  I spoke to Lesley Good Goodburn, an Experience of Care Lead, who works in the NHS, but it’s not other people’s experiences that I’m talking to her about today, it’s her own.  Lesley’s husband, Seth, passed away in 2014.  Seth was diagnosed with late stage pancreatic cancer at the age of only 49.  He died 33 short and heart-breaking days after receiving the diagnosis.

LG:    He was a funny, kind, consideration, loving man.  He had an amazing sense of humour, was always playing practical jokes and tricks, had a very dry sarcastic sense of humour.  He was the most wonderful person in the world, but I would say that of course because I’m biased. 
    
We’d kind of had jokey conversations about what might happen if either of us were diagnosed with a terminal illness so we’d talked about funerals, we’d talked about what we wanted for each other, so when Seth got this terminal diagnosis it wasn’t easy to continue that conversation but it was much easier than if we’d not had it.  It was very much around Seth wanted to be at home to die, he didn’t want to be in the hospital.  He wanted to be treated as normally as he could be, he wanted to kind of continue to live until he died, and it was really important to him that he had choice, that he could make decisions, that he felt like people were listening to what his choices were, and he wanted to be as independent as he could be and to not have medical interventions. He was a real pragmatist, he knew that pancreatic cancer had a really poor survival rate.  He was a little bit of a fatalist too.  So those were the things that were important, those things around dignity, respect, being at home, having choice and feeling like people were continuing to treat him as Seth, not as a person with a terminal illness.

Because Seth was at work on a Monday at four-thirty feeling unwell, went to the GP’s, was referred to A&E, admitted overnight and then by four-thirty on Tuesday was given the news that he’d got late stage pancreatic cancer.  I think at that point in time, you know, even the diagnosis was given to him when he was alone.  So I left visiting time at four p.m. and returned at six p.m. and in those intervening two hours he was told that he’d got terminal pancreatic cancer.  There was no one with him.  And when I got there no person from a medical or nursing point of view spoke to me; Seth told me that news.  And I had to leave him at eight o’clock that night with the whole of our world completely turned upside down.

The disease sort of creates fluid on the abdomen.  Although Seth was discharged home, when he went back for a palliative chemo assessment he was then admitted because they needed to drain the fluid from his abdomen and then once he was in the hospital it felt like it was almost impossible to get him out.  So we needed something called a PleurX catheter that automatically drains the fluid - the hospital said no.  I checked NICE guidance, I knew that it was a possibility, and I spent sort of seven days of the last two weeks of Seth’s life arguing with people about the need for a PleurX catheter and the system just saying no.  And then eventually when they did say yes they then said that there were no community nurses trained.  I asked them if they could train me but by the time that happened Seth was actively dying, it was too late to get a catheter.  So I think people just didn’t really understand that Seth went from being a person with his life in front of him feeling unwell to suddenly being this person who was dying and no one helped us through that transition.  Along the way there were lots and lots of people who were kind, who were compassionate, who had empathy and who did support us but overall the kind of experience was that it felt like there was a bit of nihilism because of the pancreatic cancer diagnosis and just a lack of support in terms of medical decisions, psychosocial support and support for me and the family.

RR:    And what message would you give to anyone in the health and care system who might be supporting or working with people at the end of their lives and their loves ones?

LG:    There’s something about having brave, gentle, compassionate conversations and not communication.  So it’s not a communication skills session, it’s about recognising people and just having that conversation.  I think there’s something about healthcare professionals really hearing the message that people live until they do die.  People are kind of labelled with a terminal diagnosis and not necessarily seen as a person who’s got hopes, dreams and aspirations even though time is shrinking away.  The little things because the big things at end of life because your world shrinks.  So Seth’s world shrunk to a room in a hospital and his dream and hope and aspiration was to be able to still get up and use the bathroom and we needed people to help him do that for his dignity and respect, but actually that wasn’t really on the agenda because it was someone who was dying.

RR:    Having spoken to Lesley, I wanted to find out more about end of life care at a local and national level and what needs to happen to ensure people like Seth and Lesley can get the appropriate care and support they need at what is an incredibly difficult time.  To help me do this I sat down with three expert guests, Professor Bee Wee, National Clinical Director of End of Life Care at NHS England, John Powell, an ex-Director of Adult Social Services with a long career in the social care sector and his own experience of supporting someone at the end of life, and Angie Arnold, a senior nurse in the NHS who for the past 13 years has been the Chief Executive of the GSK Impact Award-winning charity, the Shakespeare Hospice.

We just heard Lesley talk about what was important to her and Seth at the end of his life and I think everybody hopes to have a good death but that means different things to different people.  John, perhaps I could come to you first and ask what a good death means to you.

JP:    I think a good death for me, both there in Seth’s case and my dad’s case, that actually they should have been engaged and involved in preparing and thinking about what was going to be the best way for them to get through those last few days, weeks or even months, and yet sometimes there’s lots of difficulties around that because in my case my father had dementia so there were particular difficulties there.  But I do think it’s about making sure that the person is at the centre of the discussions, the plans, the thinking and the engagement really with the extended family as well as my father in that case to have some ideas and thoughts.  My father had said before many times that he didn’t want to die in hospital and, thankfully, we were able to achieve that but it wasn’t without some difficulty.

RR:    Thank you so much.  Angie, can I ask you the same question?

AA:    Yes, I think it’s about a lack of distress for that person, whatever that may mean, whether it’s physical or mental, and also for the carers and those they care about around them.  And I think, absolutely, totally, the honesty and the integrity of conversations towards the end of life is so important because, although it’s very distressing and it is very hard to have these conversations as health professionals with patients and their families, it’s actually being able to give them a gift in a way that they can, you know, have those conversations with you, explore some of the difficulties that they may be experiencing.  Because it is different for everybody, it is about individual person-centred care, and I think to give the time to that person is so very important because sometimes in the NHS – and I’ve been there myself – you don’t have that time.  In the hospice world we hope that we can give that time and so there’s a bit of a difference there.

RR:    We know that not everyone has access to a good death.  Bee, I wonder if I could ask you a bit about what inequalities there are in end of life care and how are these experienced.  How can we think about inequalities in relation to end of life care?

BW:    So I think the first thing is obviously there being services available to people and that needs to be wherever they are.  And the nature and the way in which these services are offered will be very different if somebody lives in the middle of a city as opposed to living in a rural area, etc, so we can’t say one model fits everybody.  So that’s the first thing.  But just because the services are there if people don’t know how to access them or don’t know how to get to them, then it’s a bit pointless.  From their perspective that’s an inequality.  So I think that is about access and it’s about their understanding what is on offer.  So I think some of the inequalities come about not because they’re not on offer, not because they’re not there, but because people don’t necessarily know what it means and how they can benefit from it.  There’s often a lot of fear and myths and misassumptions about what it has to offer.

RR:    And how do we make sure people have that information, how do we make sure they know what questions to ask?

BW:    So I think there’s two sides to come at it.  One is in terms of public awareness and, you know, really reaching people through library services, through Citizens Advice Bureaus and, you know, all kinds of ways, and food banks and places that people are in.  I think that’s one way of raising awareness about it.  But of course that means the people who deliver those or mount those services need to also understand what it’s about and what’s available.  So that’s one thing.  I think from the health and social care providers’ point of view it’s also back to the asking the questions, it’s what is it that people need to know, what are the assumptions, what is it that stops people coming forward or, you know, stops people looking for these services.  I think unless we ask those questions rather than assume we know why people don’t come forward then we’re never going to be able to address that.

RR:    Thank you.  And, Angie, you’re delivering hospice services locally within a local community, at the Shakespeare Hospice how have you been looking to meet the needs of your local community?

AA:    Well because we’re a community hospice we’re out in the vicinity all the time, whether it’s through fundraising, through our volunteers.  And our volunteers are the lifeblood of the organisation and have an ear to the ground in the community and quite often I think we could potentially use volunteers as communicators about the care and the services we offer.   We have spoken to our primary care teams, we’ve spoken to our social care teams and also been very acute at listening to what’s going on out there.  Because we also deliver services for young people we’re in the schools as well and we can often pick up where there might be some inequality or the hard to reach groups.  So we have made some efforts in reaching those hard to reach groups but we can always do more.

RR:    We’re talking about care provided to people in the community at the end of life and I know social care is such an important part of that.  John, can you tell our listeners a bit about the role social care plays at the end of life and its importance?

JP:    Yeah, of course.  One of the key factors that people tend to think around when you’re talking about death and dying is the NHS, that’s the first thing that comes to mind, and actually when we’re talking about communities that are difficult to reach and not served in the best way they should be local government has a significant part to play.  And obviously social care sits within the local government remit and it has a vast majority of different types of services, so there’s not just the assessment side done by the social care social work side but also the provision side and I think there’s a lot that actual local government can offer in relation to providing services in the community.  My father’s own experience was one that was through Extra Care Housing and actually one of the difficulties we had there was that when my dad was admitted to hospital they didn’t know what that meant and they kept referring to him going back to the home, and actually it wasn’t a home, he was independent, he had his own flat but there was a care team on site.  So actually the sorts of services that the local authority can offer blend very well in partnership and collaboration with the NHS and the voluntary sector.

And the other aspect that’s important to mention is Public Health because Public Health has a lot of information and research that can help develop new services, and one of the things local government is good at doing is developing new services. So I do think the key to a lot of this is about the collaboration, the partnership working, working with the voluntary sector, working with the NHS and working with local government services in doing the assessment of need, having taken into account the needs of that individual.

RR:    And it does feel like end of life care is this example, almost a microcosm of integration.  You know, we talk at The King’s Fund a lot about integration, how do you get that working, how do you get different sectors and different providers working together, and if that is happening you feel like you should really see it in end of life care because we’ve got so many different people involved in supporting not just the patient but, I’m struck from this conversation, also the carer and their family.  I wonder what your opinion is on what’s needed to ensure there’s effective collaboration across social care, local government, voluntary sector, bringing Public Health, the NHS.

JP:    So the first thing that strikes me is that actually legislation isn’t the answer, legislation is just the tool in which to get people together to start to think in a different way.  My experience of any development around partnership is through the individual leaders.  It’s critical that people who actually have a passion and a desire to improve services for people come together to do that.

BW:    It requires relationships and the leadership of course creates the conditions on which those relationships can thrive, isn’t it, but also the partnership…  You know, so it’s that co-design work, isn’t it, working out with the people in that locality of what and how these services can best be provided, because what works in one area doesn’t necessarily work everywhere.   And I think that’s why the move towards integrated care systems, if we make it really work in terms of that integration and that whole idea of neighbourhood teams working together, health, social care, voluntary sector, the people of that area, I think we’re really on the brink of something quite significant.

RR:    And, Angie, how does it feel from where you are in the voluntary sector working locally, how do you connect in with those other services and sectors and create that integrated care?

AA:    Well I totally agree that integrated care is the way forward but I can’t say too highly how much it’s about the leadership within those localities and the passion to make this happen because we can achieve so much more working together than isolated organisations, and to be honest, the funding isn’t there for us all to work independently and cross over and duplicate this, that and the other.  We have to work collaboratively, that is the way forward, but not to underestimate how difficult that can feel at times.

BW:    I think that one of the things we need to acknowledge and celebrate is that integrated care often works for many patients because of the people, the care team around them, and their families and everybody pulling out all the stops to make it work. We tend to hear examples where it hasn’t worked but there are lots of really good examples.  What the three of us have been talking about is, if you like, the ‘infrastructure’ that allows that to happen more consistently.  That’s the difference, I think, is that you can still make it work for individuals, however difficult it is, but we need to make it easier to make it work for everybody, that’s really the key, isn’t it?

RR:    Yeah, really well said.  It leads on nicely actually to my next question.  During the pandemic services really had to start working together in different ways to deliver end of life care, what can we learn from that experience?

AA:    For us at our hospice we have a very robust hospice at home service and the pandemic made sure that we worked with every health and social care professional within our locality because we had to, and as a result of that obviously we’ve had some learnings but as a result of that we have a really, really good relationship with our local Foundation Trust and primary care and the community nurses but also social care, and we probably didn’t have that before, if I’m honest, as much as we do now.  And as a result of that we’ve been able to tweak our model slightly so that we are now operating outside of our traditional boundaries which is reaching more patients and families.

JP:    Can I just add a word of warning though in the sense that actually, as being involved in the past many times with major incidents - the pandemic was a major incident - the danger is that you get people working very closely together but then as the pressure of everyday life and living continues those people, although willing and wanting to continue that relationship, sometimes struggle.  And so I think we just need to be a bit cautious about making sure we provide opportunities for people that have gained those experiences over the pandemic to continue with that relationship, because the danger is you’ll get drawn into the everyday and then that would be a terrible scenario if people lose that connection.  And I just think that actually the way that happens is by those local people continuing to have forums, continuing to invite the public to have a say, to actually make the professionals accountability, as it were, to actually continue and not to actually pull back into their comfort zones and going back to what were old times.

RR:    And just to build on this conversation we’re having about coming out of the pandemic and how we ensure the system’s able to harness some of that learning and those connections that have been made, you know, at the moment the health and care system is in crisis really, we’ve got financial pressures, we’ve got growing waiting lists, we’ve got an overstretched workforce, what does that mean for end of life care?  Bee, could I come to you on that question?  (Laughs)

BW:    Yeah, I think that means we keep our eyes firmly focused on palliative and end of life care.  I think we recognise there is only, as the phrase goes, one change to get it right.  So one of the things I think in this difficult period, as it were, is that if managers and employers appreciate that staff need to be given time and encouragement and support to be able to deliver that listening, that respectful, that responsive care, then I think that not only will the patients and their families benefit but so will staff, and if staff are in a good place their patients will benefit.  So the whole thing is a bit of a cycle.

RR:    We need to get into that virtuous cycle.

BW:    We do.

RR:    Angie, how does it feel from where you are?

AA:    We’re beginning to feel the crisis in terms of recruiting workforce and we know that we’ve had a number of people who’ve been hugely skilled for many years leave the profession, and not just the clinical profession but also some of the supporting personnel at the hospice, and it is proving difficult to recruit to those positions.  I do think staff feeling valued is really, really important in terms of retaining staff, you know, investing in their continued training and development and looking at other opportunities for their development outside of what would be the traditional sphere.  I also come back again to volunteers, particularly within our hospice organisations, and how we must invest in them too, which may help with some of the workforce issues going forward.  So I think we’ve got to think creatively about how we support our staff, retain them, but also look at different models of care delivery so that it is sustainable.

RR:    We’re talking about end of life care today in our professional roles but it’s also something that touches everybody in their personal lives as well and talking about end of life care can be really difficult.  People listening to the podcast might be starting to think about conversations they want to have with some of their loved ones.  John, how do you get people to start thinking about and planning for their own end of life care?

JP:    You have to just install in people that it’s okay to talk about death and dying; for a lot of people it’s a very difficult topic.  And I think really do just start to keep things simple about thinking about what they’d like to actually happen to their belongings even, how do they want them to be remembered and passed on to people that will look after them, who they’d want to know if they were at the point of being unwell, who would they want contacted to be told that maybe they’re not so well now and it could be close to death – some very simple things.  And actually just having conversations over a cup of coffee and a chat just…  It’s just picking up on the key things but not make it too heavy.  Include who they want to include, you know, don’t be restrictive, it’s not just the family, it might be the neighbour next door, it might be someone that they’ve been down the pub drinking with over years.  So you have to really be flexible.

RR:    Angie, is there anything you wanted to add on that?

AA:    The key to it is listening very carefully and picking up on cues that people may drop from time to time.  It’s about communication, communication skills, really listening, then having an open discussion if you can but, as you say, not forcing it.  Sometimes you have to go back and pick it up again at different times.  It’s a hard thing to discuss but it can also be something very beautiful to discuss as well.  Of course there is sadness and there is grief but it can also be very beautiful.

RR:    Finally, I want to move on to ask all of you what you think our listeners, people working in health and care and beyond, should take from the discussion today, what should they be doing to ensure their services support people who are facing the end of their life and their loves ones’?

BW:    So I think the first thing is for them to remember that actually death is the one thing that will happen to all of us, therefore in the people they are looking after that’s going to happen to the people they look after and I think one of their responsibilities is to be open to that fact.  It’s to look out for people who maybe have a limited life expectancy, if not necessarily dying imminently but with a limited life expectancy, thinking about those conversations exactly as what we were saying, just opening that up.  Perhaps encouraging people to think about “Well what matters to me?  How much do I care about having choice and control interesting the future?”  And this will be very personal so some people will be very happy for others to make decisions for them, other people will want to make decisions for themselves. That’s part of the listening and that’s part of the responding so I think that’s the starting point.  And then the final thing that I think I would say is to recognise that “As a health or care professional I have a responsibility and I have a contribution to make in the way I am and in the way I look after somebody, in the way I react and respond to that person so it’s not somebody else’s job, it is my job and my responsibility every time.”

JP:    I also think really that actually it’s important to think about those that are left behind.  Bereavement services are something that I believe we need to enhance, we need to do more for.  It’s an area that actually people take for granted and yet actually it’s in need of more support.  But it’s important after the person’s died to make sure that those people you’ve been working with as a professional in this field that you actually ensure they get the right connections as well to be able to continue to have conversations with people through bereavement services.

RR:    Yeah, and that’s where the information comes in as well, isn’t it?  Because I know from the conversation I had with Lesley that just knowing to look for those bereavement services was something that she had to go on a journey to get the information and be able to search for them.

AA:    Complications in bereavement can arise from somebody possibly who’s not had a good death.  We need to ensure that we’re doing all we can for somebody to have a good death but then also not to forget those people who are left behind, and I do agree that bereavement services need further investment.  But I think to remember that everyone is an individual and you’re in a privileged position to be able to speak to somebody who’s dying and just keep it simple and make it their agenda.

RR:    Thank you so much to Angie, Bee and John for joining me today, it’s been brilliant to have this conversation.  Thank you also to Lesley for generously sharing her and her husband Seth’s experiences with us as well.

If you’ve been affected by any of the issues raised in this podcast we’ve included information about organisations who can offer advice, information and support in the show notes for the episodes.  You can find these and the show notes for all of our previous episodes at www.kingsfund.org.uk/kfpodcast.  This episode was edited by Bespoken Media.  Thank you also to our podcast team for this episode, (s.l. Narim Chakwira), Luca Tiratelli, Alex Baylis, Sarah Murphy and Jen Thorley.  Don’t forget to subscribe, share, rate and review this episode wherever you get your podcasts.  You can also get in touch with us via Twitter.  Our account is @thekingsfund.  And of course thank you to you for listening, we hope you can join us next time.

If you've been affected by any of the issues raised in this episode, there are a number of organisations that can offer help and support.

• Cruse Bereavement Support - runs a helpline offering emotional support to anyone affected by grief. You can reach them by telephone on 0808 808 1677. They can also put you in touch with expert grief counsellors.

• Marie Curie - have a helpline that can be reached by telephone on 0800 090 2309. They also have resources for people caring for someone with a terminal illness, and provide general information and resources for coping with grief. They offer a directory of organisations that can help with specific aspects of dealing with grief and caring for people at the end of life - for example financial issues and support for parents - and have specialised resources for dealing with bereavement at work.