“Talking about dying doesn’t make it happen” – A conversation with the Waiting Room Revolution

In November 2021, Pilgrims Hospices took part in a virtual event with Canada-based podcast the Waiting Room Revolution. Dr. Andrew Thorns, Consultant in Palliative Care and former Medical Director, and Justine Robinson, Therapies and Wellbeing Manager, spoke with Dr. Hsien Seow and Dr. Samantha Winemaker about death, dying and end-of-life care in the UK and Canada.

An audio recording and a full transcript of the event are available below.

 

Please note: This virtual event took place in November 2021, and the information included was accurate at the time of recording.

Welcome and introductions

Dr. Hsien Seow: Welcome back to the Waiting Room Revolution. We are excited to be collaborating with the UK’s Pilgrims Hospices and have friends from across the pond on the show today. Pilgrims Hospices has been providing palliative and end-of-life care for over 38 years to the people of east Kent, which is about an hour or two east of London. It’s one of the largest hospice charities in the UK.

Today, we are thrilled to have on the show:

Dr. Andrew Thorns, who is the Medical Director for Pilgrims Hospices since 2015, and has been a palliative care consultant for over 20 years in east Kent.

Justine Robinson, who is the Therapies and Wellbeing Manager. She has been an occupational therapist for 23 years, joining Pilgrims Hospices in 2011.

Welcome both to the show today.

Andrew and Justine, maybe you could tell us a little bit about your roles and what you love about your jobs?

Dr. Andrew Thorns: Thank you, Hsien. Thank you so much for the invitation; I felt honoured to follow in the footsteps of some very distinguished people on your podcasts, which I think are excellent.

I work across Pilgrims Hospices, which is a charitable organisation that provides in-patient specialist palliative care beds and community work. I’m also a consultant at the local hospitals; we have three hospitals in the area, so I provide input into there as well, alongside five other consultant colleagues.

My need to try and save life all the time – I began to realise that wasn’t just the way to go forward. It’s much better to try and enable people to die comfortably, peacefully, at peace with themselves.

Dr. Andrew Thorns

As you go on through medicine, you realise that not everyone is going to survive. Unfortunately, we all are going to die at some point, and if you can make that last bit of people’s lives that little bit better, that little bit easier, then there’s a huge satisfaction in that. My need to try and save life all the time – I began to realise that wasn’t just the way to go forward. It’s much better to try and enable people to die comfortably, peacefully, at peace with themselves. When we achieve that, I think that’s a huge success, and I’m really pleased.

I particularly like my job when I can see people in all the different environments they find themselves in. It’s just so lovely to see people where they need to be, where they should be, managing their symptoms, their issues, supporting their families in their homes when we can. But equally, having access to our beds so that if they need to come in they can do so. Or, should they end up in one of the local hospitals, then we can catch up with them there as well and try to either get them out of hospital if that’s what we need to do, or make sure they’re being treated appropriately there. I love that breadth of service we can offer.

And of course, you get to work as a team. Working as a multidisciplinary team is probably the most enjoyable part of this type of work. We’ve got excellent colleagues around who we can work alongside, sharing ideas and perspectives, and you can see life from different points of view.

What do I love most about my job? … it’s the multidisciplinary working, being able to work alongside so many skilled colleagues who are enthusiastic and dedicated to what we do. The honour of walking alongside someone in that last year of life, being able to see them in their own home, really feeling like we make a difference, and work holistically.

Justine Robinson

Justine Robinson: I manage the occupational therapy team, the physiotherapy team, and what we call our wellbeing team, which are our wellbeing practitioners who run most of the groups within our Therapy Centres, which is where patients come in for the day and attend groups that are suitable for them.

What do I love most about my job? I’m probably going to echo a lot of what Andrew has already said; it’s the multidisciplinary working, being able to work alongside so many skilled colleagues who are enthusiastic and dedicated to what we do. The honour of walking alongside someone in that last year of life, being able to see them in their own home, really feeling like we make a difference, and work holistically. Often, in England, in the NHS, occupational therapists get separated into mental health or physical; in hospice care, you’re working holistically across all of those areas to get the best possible outcome for the patients, which is something very special.

What are we waiting for? – Hospice care timelines in the UK and North America

Dr. Samantha Winemaker: At what point in a person’s illness journey do you begin to interface with them?

AT: A very good question, and one of much debate in the UK. On average, I think it’s about 40-41 days before people die, if you look at the national work on this. We’re probably slightly better than the average, but around that figure, which isn’t really a lot of time to try and identify all of the troubles and difficulties that have built up over someone’s lifetime, or for their family to get on board, to get people adjusted to where they are and make plans for the future. It’s a very short period of time; however, you will also ask me, “When is the ideal time?”, and that’s always tricky to know as well. The old adage is, “Would you be surprised if this person dies in the next year?”, which is what the Gold Standards Framework started off with. I think this is a good thing to consider.

HS: In the US and in Canada, the average amount of time that people get palliative care is about 18 days before death. A systematic review from a group in Belgium, led by Dr. Luc Deliens, showed 18 days, too, internationally. It is very late.

I wonder if the early palliative care approach needs to be defined by time, when it’s really about the diagnosis and the needs. How do you manage those two pieces – the, “Would you be surprised… ?” question that triggers all these other things, but also realising that maybe people have more complex needs early on in their diagnosis and this awareness that there will be a progression.

AT: Completely; it should be based on needs, not time. There is a time element to it, because people have to recognise they’re coming towards the end of their lives, but it shouldn’t be based on the time. The Royal Marsden Hospital did some work where they screened their palliative outpatients; they found that some with the highest needs still had very good performance status. They weren’t the ones who would traditionally be referred on to palliative care, but when they asked them, their needs were great – and a lot weren’t necessarily physical, but more existential, psychological or social needs.

To me, one of the most important things we do is to get people over this hump, this recognition that they’re dying, so they can still live on the other side.

Dr. Andrew Thorns

There’s also something about the person’s place on that journey. To me, one of the most important things we do is to get people over this hump, this recognition that they’re dying, so they can still live on the other side. For some people, that’s a really difficult mountain to climb, to get over this idea that they’re dying and work out how to adjust to that. For others, it’s very straightforward and simple, but if you can identify those people who struggle early on, perhaps those who are going to have a difficult time at some point in the future, they’re the ones it would be nice to get involved with early, because then we can start to work with them.

JR: Definitely. Pilgrims has tried to address this by offering some wellbeing groups that accept early referrals, so they don’t necessarily have to be a full service user. They can come in and get the information and education they might need about managing breathlessness, or fatigue, or building resilience around their diagnosis and coming to terms with that. They can get what they need, then be discharged back to their primary caregivers in the community. We’re looking at how we can do that, and how patients can weave their journey in and out with the hospice. That might help people feel comfortable with coming to the hospice at an earlier stage.

Walking through those doors takes a lot of bravery. It’s not just about getting practitioners to refer early, it’s about making it a place where people feel comfortable to come early.

Encouraging clear, honest conversations by taking a palliative approach to care

SW: I can appreciate how complicated it is for people to understand what palliative care is, who provides it, how they can access it, when they need it and how they can voice that they don’t want it. People are so confused by the term.

Here in Canada, we’re spending a lot of time trying to separate the idea of palliative care speciality services, and the philosophy of and approach to palliative care. We’re trying to infuse a palliative philosophy alongside any kind of disease management treatments, ebbing and flowing from the time of diagnosis of a non-curable illness, so that philosophy is woven in by all nurses and doctors. So it’s never labelling anyone ‘palliative’ at a point in time, it’s just the natural dance we do across these management styles. A palliative care team or speciality group would come in at intervals from the time of diagnosis until death, when needed. So many people think that palliative care is reserved for the last year or days, or only provided by specialists. What do you guys think about that, this idea that it should be a philosophy or approach to care for any of these illnesses that we know are not curable?

AT: You speak very powerfully about this and I think you’re quite right. Dame Cicely Saunders, when she started all this off in the UK, felt that hospices wouldn’t exist after a period of time – there wouldn’t be a need for them, because you’d just instil that way of working, that approach as you describe it, and therefore you wouldn’t need these other people to do the work for you. It would just be integrated and part of general healthcare. I still really hope that’s something we might do, because good palliative care is just good clinical care. Although there’s still that need for those slightly more complex situations, so I don’t think we’ll completely get rid of the need for the expert side of things.

SW: When I first trained and graduated, I thought I was going to be a pain and symptom specialist doing this most incredible, innovative stuff to improve peoples’ symptoms. But to be honest, 99% of the time, what people are missing is information, and I help them connect the dots – what’s happened to them, where they’re at now, and where they’re going. There is so much more information sharing than dabbling in peoples’ symptoms.

Do you often have people who, by the time you meet them, are really feeling in the dark?

AT and JR: Yes.

The minute someone is full of fear, they shut down listening, they can’t take in any more information. Sometimes, they just need to get stuff out before they can take anything else in. That’s a big part of what we do. We give people space to be able to explore that and come to terms with what’s happened to them, where they are, and be able to really hear, in a more clear language, what is possibly coming next.

Justine Robinson

AT: I agree. In that very famous study by Temel, where they looked at lung cancer patients, a lot of the work they ended up doing was about information, listening and helping people to make decisions. I think we do a lot of that, especially at the hospital. You see people in hospital beds and they’re fearful, frightened, and no one’s taken that time; they’ve been talked at so much, but no one has actually stopped to listen to their concerns, their ideas.

JR: We still see people who, because of the language we use, don’t have an understanding of what’s happening to them. Kathryn Mannix talks beautifully about using “the D words”, but even before that, I’ve met patients who’ve gone, “I’m not sure if I do have cancer, love” because they’ve been told they have a ‘node’ or a ‘nodule’. We really need to be careful of our language at all stages so that patients have a very clear understanding and feel they’ve been listened to. The minute someone is full of fear, they shut down listening, they can’t take in any more information. Sometimes, they just need to get stuff out before they can take anything else in. That’s a big part of what we do. We give people space to be able to explore that and come to terms with what’s happened to them, where they are, and be able to really hear, in a more clear language, what is possibly coming next.

SW: I just came from a home visit this morning. This gentleman has a pancreatic cancer and he is going to start chemotherapy. He has no idea about why he’s having chemotherapy, what the goal of it is. He has very little understanding of what stage his pancreatic cancer is at. I’m smiling and being very kind, trying to be helpful, and in my mind I’m thinking, “That’s not informed consent.” People can argue that maybe he was told but he was overwhelmed so he just forgets. But I’ve been in clinics, and often people are discussing treatment options without helping people understand what the goal of the treatment is, and in the context of where they’re at in their illness journey. I leave every home scratching my head.

JR: One of the most important things we can open with is saying, “Tell me what you understand about your illness.”

I do also wonder if there’s an innate fear of death that we all have. Patients have that so they don’t want to go near there, but if some of the professionals have that too, they’re not prepared to start going down that side of the road. It’s never going to move on from there if neither of us are going to start talking about it.

Dr. Andrew Thorns

AT: If you can get people over that adjustment to the fact they are going to die from this, but they can carry on living (and we can show them how to), that’s achievable.

We have an Advanced Communication Skills course here at the hospice. A couple of times, oncologists have come on and said, “What I’d like to do is, in a 10-minute slot, get someone come in expecting chemotherapy and leave comfortable with the thought that they shouldn’t have chemotherapy.” We go through the techniques, the approaches, the Silverman, Kurtz and Draper model, which a lot of medical schools are using now. Both times, they’ve achieved this; so in 10 minutes, a patient comes in expecting chemotherapy and leaves confident and satisfied that they shouldn’t have chemotherapy, it’s not the right thing for them to do. I think there is a skills issue, and if we could spread those communication skills a bit further, I suspect that would help.

I do also wonder if there’s an innate fear of death that we all have. Patients have that so they don’t want to go near there, but if some of the professionals have that too, they’re not prepared to start going down that side of the road. It’s never going to move on from there if neither of us are going to start talking about it. That dance is going in the wrong direction.

A communication toolkit for healthcare professionals, patients and families

HS: I love the idea of training for advanced communication skills. It’s been happening in different ways in Canada and in other parts of the world with mixed success, I think. Part of The Waiting Room Revolution was to take the ideas behind that clinician training, but make it more public-facing. What do you think about that, the idea that we can coach clinicians to guide people through these conversations – do you think we can also coach patients and families to initiate and walk through these more gentle conversations as well?

AT: That’s a very good point. Absolutely.

Just to go back to my oncology colleagues. They weren’t trying to be dictatorial about this; these were patients they suspected probably wouldn’t (or didn’t) want chemotherapy treatment, so how do they explore that rather than it just becoming a routine? And certainly, the skills we taught them were about getting the patient to talk and seeing where they were.

Your point about developing patient skills, yeah. You see it, don’t you? We come across the patient who has just been suddenly referred to us, it’s a new diagnosis and they don’t know what’s going on or how to deal with these situations. And then you get the other patients who’ve been in the system for some years and they know how it works – they know how to get hold of the consultant secretary, and that they can demand or ask for this or that to happen. They become almost like professionals because they know how to work the system, how to ask the right questions.

I don’t know about you, Justine, but talking to a number of patients who’ve got an appointment coming up, I say, “Well, why don’t you ask these questions? Let’s think about the questions you want to ask. If you ask it this way, or maybe I can send an email and just start that discussion, then when you’re there the consultant is ready, knowing what you want to talk about.”

But I quite agree. I’ve never run a session for patients or relatives about how to manage their side of the consultation, but I love the idea of it.

HS: Justine, do you see that when you’re doing your training? That idea of wellbeing, palliative care must always be just underneath the surface of wellbeing, I would think.

JR: Yes, absolutely. From my own communication point of view, I’ve done the advanced communication skills course, and the most important skill you’re taught on that is to listen, ask a question, and then sit back. What comes out of that is a shorter, more focused session because you’re allowing the person to focus you on what’s important to them.

It’s a really bold idea; I like it, the idea of us perhaps training families and patients in how to do that. I think we probably do, on an individual level. When we’re talking to people as a therapist or in the Therapy Centres, we will often have those conversations and say, “Have you thought about this?”, “Maybe if you ask…” or “Have you thought of suggesting… ?” Sometimes it’s about the patient knowing that they’re at the point of wanting to stop treatment, they don’t want the chemo or the radiotherapy anymore. Often it’s about helping to manage those conversations with their families and their medical teams, and saying, “Have you thought about discussing it like this?”

So yeah, I think we probably do that one-to-one quite often.

Empowering patients and the public to advocate for themselves

SW: This is how we ended up doing the podcast series. We were doing all these one-to-one-type interventions, arming people with the types of questions that they could go to the healthcare system with and perhaps leach out more information than they had before they asked the questions. But they don’t all get to see a palliative care specialist in their home. We know we only really see the tip of the iceberg of the people who could benefit from our skills.

We got really frustrated with how slowly things were going training healthcare providers as the middle people, so that patients and families were able to get the information they need. We decided: we’re going rogue. We are going to be public-facing. We are going to share this one on one stuff we’re doing, the types of conversations we’re all very comfortable with, but we’re going to deliver it right to the people so that they never, ever have to worry about someone identifying them as needing palliative care. So that naturally, if they do this well, they will automatically get it from the healthcare system just by being a different kind of patient and family – more activated, more empowered, more armed with the right stuff.

JR: I think there’s something to recognise there about privilege as well. In east Kent, we serve very different socioeconomic groups. When I’ve had to navigate the system on behalf of someone very close to me – one, I have a healthcare background, but also I’m white and educated and fairly confident about speaking my mind. But we also see lots of families who aren’t. I don’t know if you have the term ‘white coat syndrome’? When they see a doctor, they become very passive because they feel, “Well I don’t have an education. This is the person who knows everything.” It’s those people I’m really interested in how we empower as well, and how we make sure their voices are heard in the system, because we know with healthcare outcomes that they’re the people who perhaps aren’t getting the same service.

We decided: we’re going rogue. We are going to be public-facing. We are going to share this one on one stuff we’re doing, the types of conversations we’re all very comfortable with, but we’re going to deliver it right to the people so that they never, ever have to worry about someone identifying them as needing palliative care. So that naturally, if they do this well, they will automatically get it from the healthcare system just by being a different kind of patient and family – more activated, more empowered

Dr. Samantha Winemaker

SW: It’s so true what you say. In our city, we have a mixture of socioeconomic statuses. But I will say that I assumed that people who had higher education, more money, would maybe fare better when facing a progressive, life-limiting illness, but it hasn’t always been my experience. There are other ingredients that seem to bubble to the top, that almost predict whether or not people are going to fare well or not.

I appreciate totally what you’re saying, Justine, but I do find that the darnedest people have someone in their life who’s that go-getter, the organiser or the manager. They’re like a dog with a bone, they’re just that kind of assertive person. When I find people like that in the person’s environment, I think, “Oh, OK, this is going to go better than a bunch of people who are just going to let the healthcare system blow them wherever they go.” Someone who’s assertive makes a huge difference, or just someone who naturally has that style, a curiosity or they ask a lot of questions, they won’t stop until they understand something. Even if their education level is lower, there’s something about different personalities that fare better than others as well.

We meet so many different people, don’t we? I don’t think it’s a one size fits all, that’s for sure. I think what you’re saying is, we have to appreciate that there is such diversity, and empowering people is going to look different depending on who you’re trying to activate.

HS: I know some people don’t like the word ‘empower’, but every person should have an understanding of what their illness is, where they are in their illness, what might the future look like, what the intent of the treatment is, what the options are. I would imagine medical professionals are trying to answer those questions, but these are very important cornerstones of what is happening, and if people get lost in that, they lose their control and the ability to make choices that are good for them. That’s irrespective of finances etc.

Encouraging curiosity to create bespoke care

SW: Just a point of clarification. When we talk about moving these types of conversations upstream, it’s not really about talking about death and dying when someone’s first diagnosed with an illness that might have a life expectancy of 10 or 15 years, like dementia. Or five years, like amyotrophic lateral sclerosis (ALS). It’s not sitting people down and saying, “Look, you have to know, this is going to end in death.”

I just wanted to clarify that. It’s really about us sharing, with patients and families, that every one of these illnesses is uniquely felt by the person, but it is not the first time we’ve seen this illness. People have a right to know that this illness has a pattern to it, right from the get-go, if they want it; that is has these milestones, these bus stops, these major decision points along the way.

… the people that ask more questions feel more grounded and more prepared. Infusing an early palliative approach is not about talking about death and dying (unless the person wants to) right from diagnosis – it’s about helping them know that there is a roadmap.

Dr. Samantha Winemaker

I welcome you to ask us more about that, because the people that ask more questions feel more grounded and more prepared. Infusing an early palliative approach is not about talking about death and dying (unless the person wants to) right from diagnosis – it’s about helping them know that there is a roadmap.

AT: One of the keys is about customising your order, as you put it. Tailoring your care plan to your preferences. I think that’s the thing, isn’t it? Some people like to know every single bit of detail right there and then – “Plan the rest of my life for me.” For other people, it’s a much more gentle journey, step by step. Or maybe not wanting to know at all. So it’s customising, as you put it so beautifully, to that person’s needs.

JR: And introducing the idea of advance care planning at that early stage, and it not being necessarily about just a death plan. But actually, being able to prepare for those changes in advance, knowing the broad strokes of what your illness is possibly going to do for you, and having those plans in place. So the next step might be you’re not going to be able to do your stairs at home, so what are the plans going to be? Would you like to get those in place now so that we’re not hitting crisis?

AT: Sammy, if I was to disagree with you slightly – although everyone experiences individually, there are certain patterns that emerge, aren’t there? There are certain things that tend to happen to certain groups of people in certain ways. So we have that knowledge, and somehow we have to use that just to start to plan ahead. I think that’s important.

But quite right, it’s not just about the medical need, although sometimes that seems to take a prominence in those situations.

SW: It’s very rare when I ask someone if they’re interested in more information about their situation that they say, “No, we’re not interested.” In fact, rarely has someone said no. Sometimes they get a little bit sheepish and worry what I’m going to say, like tell them that they’re going to burst into flames at the end. They have all these ideas that they’re worried you’re going to confirm for them. But aside from that I’ve rarely, rarely, rarely ever met someone who has said, “No, we don’t want to know.” If they do say it, usually it’s because they’re scared of something; then you unpack that a little bit, then they realise there’s some course correcting we can do to make them feel better.

JR: I know I’ve been guilty of this in the past, particularly when I started in palliative care, with going too fast. We’re maybe taking them five steps down the road, and actually this person can only do the first two, or one, or even half a step. It’s about working with that person and walking alongside them at the pace they can do that.

SW: I love that. So not just inviting people, but actually assessing or asking them the degree to which they want information, and how they want it.

The importance of effective communication and the future of end-of-life care

AT: Sammy, do you think that’s something to do with you in your communication skills, though? Do you think people choose the people they want to ask these questions to? If you’ve got someone who you get on with, you have a bond or a trusting relationship with, you feel safe with, then they’re the person with whom you’re going to think, “Yeah, I want to explore this.”

Whereas to somebody else, you perhaps don’t quite hit it off, or you’re not quite confident about them, then you’re less likely to go into those more sensitive areas.

SW: I think so, for sure. I think that because I’m in their home, they probably feel even more comfortable – aside from who I am, just being in their own environment, they can be themselves. So definitely, I think the right person at the right time at the right place makes a lot of sense for these conversations.

I’ve had medical students and nurses say, “You just took an hour to do all of this. How can you expect other people, in their busy clinics, to take so much time?” Time is everyone’s concern.

What I usually say to people is that the reason why it’s taking me an hour is because I’m meeting this person at this stage of their illness. I’ve never met them before. There’s been lots and lots of doctors and nurses involved, who have perhaps been busy doing other things or uncomfortable having these conversations, so it’s requiring an hour of my time right now.

I’d like to think, if we do this well, in 20 years let’s say, that people will have bits and pieces of this conversation along the entire journey so that no one person is responsible for the one-hour discussion at the end. There will always be the one-hour discussions, but you know what I mean; it shouldn’t be the first time they’re invited into an honest, open discussion about their illness when they meet me in their home when they have, on average, a couple of months to live.

AT: Yes, I quite agree. It takes me back to Dame Cicely Saunders and her idea that we would do ourselves out of business, which maybe we still might. Your work on the podcast, the communication skills stuff, maybe that might just change that culture in due course, by the time we retire.

SW: I think there’ll always be a role for us. Kathryn Mannix set me straight, too, because I was trying to convince her that we shouldn’t exist. I think there’s always going to be a role for us for complex situations, complex discussions. But I would say that 99% of what I do could be done by any well-intended and well-skilled doctor or nurse. There are some complex things we do, but for the most part, I think that it wouldn’t be a far stretch to teach all OTs, physiotherapists, nurses, doctors, social workers, to learn a palliative approach.

What’s next for Pilgrims Hospices?

HS: It would be remiss if I didn’t talk a little bit about some of the fundraising challenges that exist – in Canada, but I would suspect in the UK as well. I think I read somewhere that the National Health Service (NHS) covers 20% of Pilgrims Hospices’ budget, so 80% of your operating budget, which is almost £11 million in a year, is fundraised each year by local residents? On some level, that’s a testament to the impact you have on the community because they’re so behind you year after year. But it must be a challenge. How do you think about that as you’re programming and planning ahead and trying to get staff and do all your services?

AT: There’s 750,000 people who live in east Kent and they raise the £11 million every year, so we are hugely indebted to them. You’re quite right, it demonstrates the importance people place on this type of care, which is great. It does raise that question, where does the hospice charity fit? We are a community provider, how do we influence the community around us?

We were talking earlier about when should people start talking or thinking about these issues, so  how much do we start bringing that work into the community? How much is it about us providing or doing to the community? How much is it about us enabling the community to do it themselves, to take on that responsibility themselves? There are huge discussions and debates about that, quite rightly, because hospices originally were a protest movement; they originated because good care wasn’t there for people, and it was an alternative.

We’re absolutely indebted to the people of east Kent, they’re just outstanding in their creativity, how they raise money for us each year. I remember being told once that around 1 in 7 people know someone who’s been directly cared for by Pilgrims Hospices in east Kent, so that’s the kind of personal feeling that the people of east Kent have about our services and what we do.

Justine Robinson

So what are we doing as a social movement now? How are we trying to engage with our community?

We’re starting up a THINK project. We’re just starting to identify people who are perhaps early-ish on in their journey, just getting them to start thinking about it – not about death and dying, but just to start thinking about the future. What is important to them? What do they need to do? What do they need to think about going forward? Are they engaged with their families about what’s happening? What do we need to put in place? It maybe just starts that journey, starts that discussion.

It’s one way that we can start to empower the community; and perhaps not just those people who are poorly, but taking that out to businesses, to corporate organisations, and get them thinking about it as well. Because as we know, talking about dying doesn’t make it happen, but if you haven’t had that conversation, haven’t started engaging in that process and that journey, then of course it ends up being very difficult at certain times.

I suppose an advantage to us being a charity is that we can then do the things that we think are important. We’re not under government control to meet targets or to do things in a certain way. So we quite like a certain amount of flexibility, but a little bit more cash from our health service would be very helpful. What do you think, Justine?

JR: Yes, I agree. We’re absolutely indebted to the people of east Kent, they’re just outstanding in their creativity, how they raise money for us each year. I remember being told once that around 1 in 7 people know someone who’s been directly cared for by Pilgrims Hospices in east Kent, so that’s the kind of personal feeling that the people of east Kent have about our services and what we do.

With THINK, we’re piloting it in 2022. To start with it will be staff running the THINK sessions, but the hope is that it will become expert volunteers. So eventually, it will be the community running these sessions for the community; we will offer the training. It’s that idea of advance care planning at an earlier stage, it not necessarily being about just your death plan, but actually all the other things you can think about along the way as part of your advance care plan. That’s why we’ve called it THINK; we just want to drop those seeds in and hopefully something will take root and we’ll just help people start having those conversations.

… as we know, talking about dying doesn’t make it happen, but if you haven’t had that conversation, haven’t started engaging in that process and that journey, then of course it ends up being very difficult at certain times.

Dr. Andrew Thorns

SW: That’s amazing. How can we support your work? Donate, right?

JR: Yeah! Obviously, you know, sharing everything we do when you see us on social media, supporting us that way is always really helpful too. We’re very lucky in the way that people donate and get involved. And volunteer – volunteers are the lifeblood of the hospice, we wouldn’t be able to run without them. Certainly, over COVID when we couldn’t have volunteers in the building because we needed to stop footfall, we really felt the lack of them because they’re such a joy to have around.

AT: And collaborate I’d throw into that as well, Sammy. You’ve got some great ideas from what you’ve developed here, we’ve got good ideas. The fact that we can come together internationally and share those good ideas, that all helps. If the service can get better, that really helps. So if we evaluate the THINK project and it works and it changes the way people approach things, and we share that with other people, then that’s good.

HS: Justine and Andrew, I really want to thank you both for joining us today and being on our podcast. It was such a pleasure to connect and I hope that we can continue to collaborate and contribute to your amazing work.

SW: We can’t wait to learn from you guys. It seems like you’re always at least ten steps ahead of us, so do share.

AT: I’m sure you’ll catch us up very quickly, Sammy, if that’s the case. It’s been an absolute pleasure.

JR: Thank you. It’s been great to be here today.

References

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