A university without walls: How St Gemma’s Hospice and the University of Leeds joined forces to transform end of life care.

In this World changers episode, Vice-Chancellor Simone Buitendijk speaks to Dr Lucy Ziegler.

Lucy Ziegler’s research in oncology took on a very personal significance when her own mother died of breast cancer. Her personal loss and passion for her research made her determined to improve the way we care for those nearing the end of their lives.

Her research contributed to a landmark breakthrough when St Gemma’s became the world’s first University Teaching Hospice. Now its work not only serves the local Leeds community but also helps reduce inequalities in palliative care across the world.

Research that changes lives.

Four simple words, inspiring researchers at the University

of Leeds to reshape the world.

I am professor Simone Buitendijk, since arriving at the University

in 2020 as Vice-Chancellor.

I've been amazed by the passion, creativity and ingenuity of the

research community to make a difference.

Having the opportunity to exercise choice is really key to palliative care

and that individualised care that supports the person in the last few months of life.

To learn from the mistakes that we've made and we

need to learn from the instances where prevention atrocities work.

I think the COVID-19 pandemic actually forced us to become a

little bit more digitally literate.

Although I do think we still have some room to kind of, continue growing.

One of my priorities has been to learn more about the sheer

range of research carried out by early career researchers at Leeds.

They are the new generation of world changers people working tirelessly

with communities and academics around the world on finding solutions to

seemingly intractable problems.

Over the course of this podcast series, I will be in conversation

with those researchers.

Join me as our World Changers described new discoveries and

approaches that will make the world a better and more equitable place

to live.

It's about research that changes lives.

Welcome to this first edition of the World Changers podcast

from the University of Leeds.

I am Professor Simone Buitendijk and I am in conversation with Dr.

Lucy Siegler to hear about her research and to palliative care.

She has played a key role in establishing what could be the world's first

University teaching hospice at St.

Gemma's in Leeds, but like many of us, she has experienced the impact of

terminal illness in your own family.

Lucy, thank you for being with us.

Thank you.

It's a pleasure.

Let me start with a question maybe to set the scene and gets

our listeners focused on what we're going to be talking about.

Maybe you can explain to me.

What palliative care is?

And then maybe also how well you think we do palliative care in the UK?

Yeah, of course.

So palliative care is an area of healthcare, which is focused on improving

quality of life and maximizing quality of life and managing symptoms rather

than prolonging life or treating disease.

So it's very much about not extending life, but making sure people live as well

as possible for as long as possible when they've got life limiting conditions and

in terms of how well we do it in the UK, I think we do it absolutely brilliantly.

A specialist palliative care services in the UK are among the best in the world.

The problem is that it isn't available for everyone and there's huge

inequities in terms of access to it.

And how do you think we can change that?

And can you say a little bit more about the inequities?

Does it mean that a fraction of people who need it can get it, or it's only certain

groups who have more access than others?

Yeah so, for example, cancer patients, patients with

advanced cancer and most likely to receive palliative care.

But other groups of patients that have perhaps longer term conditions or multi

morbidities, older patients, particularly male patients are all less likely to

receive access to palliative care.

And then there were certain groups within society for example, people

who are homeless very rarely have had access to palliative care in the past.

And these are all parts of the research that were doing to try

and improve and address these, these inequalities in access.

Sounds really important.

And then you're a psychologist by background that what drew you to,

and the study of palliative care?

So I was working in psycho-oncology, which is supporting

patients with cancer to cope with their disease and their prognosis.

I was really enjoying that I was working in a cancer hospital in

Leeds, in a research team, a very well-established research team.

And when we were doing some really impactful research, but I think what led

me to change direction was my own mum was diagnosed with metastatic breast cancer,

a type of cancer that can't be cured.

And.

I think visiting her in hospital and seeing how she and the patients around

in the hospital were being treated quite aggressively despite approaching

the end of their lives and not having the option to consider palliative care.

For example, my mum received chemotherapy literally days before she died.

She died in hospital and palliative care was never really discussed and

she was treatment pathway might until the end of her life, although really

there was actually no benefit in terms of controlling the disease or

extending a life from that treatment.

So that started to get me thinking really about how palliative care could

be integrated alongside oncology care for those patients that weren't going

to be cured and actually 50% of patients diagnosed with cancer die of the disease.

So these aren't the minority it's half of them.

And could palliative care be integrated and patients sort of have a double track

of care where they could transfer on to care at the point at which treatment

became futile or the side effects from the treatment became intolerable

or detrimental to quality of life.

Yeah, do you have any idea of why that happened?

And I'm sure that you can tell me that it's still happening, that people get

treated up until the end of life with something that may not be helpful,

not even in prolonging their life.

What'd you think is behind that?

Why do these situations occur?

I think when a patient's diagnosed with cancer at that point,

the patient, their family, and the oncologist are usually united in, in,

in the aim, in a goal of, of trying to sustain life for as long as possible.

And that almost always leads to some anti-cancer treatment, whether that be

surgery, chemotherapy, or radiotherapy.

And then the point at which you step off that treatment pathway is very difficult

to decide when to stop because prognosis, making a prognosis is quite difficult and

it's becoming increasingly difficult as the number of treatment options expands

as it is doing exponentially for some cancers, the prognosis is increasingly

difficult and the options are increasing.

So it's almost in some situations, there's always something else that can be tried.

And I think having the conversation is very difficult.

We've done some research studies with oncologists about exactly

about that, about the conversation, about stopping treatment.

And they tell us that they find it difficult.

They feel as though they're failing patients, they letting them down.

They don't know how to initiate the conversation.

They don't know how to start it sometime.

I think interestingly, the longer a doctor has known the patient, the more

likely they are to overestimate survival.

So a large research study that was conducted some years ago, demonstrated

that if you'd known your doctor for many years, they would be likely to

overestimate your survival considerably.

There's something about that human relationship.

That's influencing judgment.

Do you think it's fair to say that it makes you be more difficult

for the average medic than it may be for the patient and their family?

Or do you think it's more difficult for the patient and the doctor,

sort of, follows and doesn't bring it up because they don't dare

upset the patient and the family.

I sometimes feel like it's also in the medical profession that

we're so not used to talking about death or so I'm an MD myself.

We've been trained to save lives in having to say, I can no longer

save yours may just be something that doctors find really difficult.

I think they do.

And I'll research.

It is demonstrating that and it's not seen, having those

conversations isn't seen as a medical.

Procedure that requires training and skill in the same way that some of the medical

sort of interactions or procedures are.

So it isn't given the same weight.

It's the highly complex and challenging interaction that requires training and

support around it for the doctor as well said there's real challenges on

the side of the medical profession.

But on the side of the patient and the family that this equally complex

challenges, for example, the role of hope, hope is an incredibly effective

coping strategy for many patients.

So even when the reality is that the treatment isn't going to cure you,

patients, aren't always receptive to that because it challenges their

main coping strategy, which is to hope that one day they will be cured.

So this is where palliative care can be really helpful and effective in, in

helping to adjust to the, the new reality.

That is a shorter life than perhaps they'd anticipated and to support the

family as well, to make that adjustment.

So the whole referral to palliative care for particularly with patients with cancer

is interwoven with these decisions about stopping treatment and perhaps losing

hope and adjusting to the understanding that life is going to be shorter.

And so I think the word hope is so incredibly interesting

here, and it's so important I think

because it almost feels like doctors should never take away hope as if

it's a bad thing to say to a person that your hope that you're going to

be cured actually it's not right.

It's not the fact because I think hope can be a useful coping skill, but it can

also be in the way of accepting a life as it is, and death as it's approaching and

allowing for those intimate conversations to happen, because I've actually seen

it in my own environment, I had a good friend a few years ago, who died at the

age of 60 of metastatic lung cancer.

And it was really difficult for her children to give up hope, but because it

was really clear that there was no cure.

I think they were able as a family to enter into that accepting and having those

really intimate conversations that were so incredibly valuable and beautiful.

And I'm sure are helping her children right now to cope.

And instead of, yeah, if you just focus on hope, I think there are lots of

opportunities you miss of doing things that in the long run can be really

important also for the survivors.

How do you feel about that?

I completely agree.

And without an accurate understanding and acceptance of prognosis and it

doesn't have to be an an accurate prognosis in terms of months or weeks,

it's just an appreciation that life is going to be shorter than you'd hoped.

People aren't able to engage in the planning about their end of life.

That is exactly as you said, that they can't shape how those last weeks

and months are going to be spent.

And it, I think it's really important that people get the opportunity

to do that and, and we know that people's priorities in the last weeks

and months are very individual in how they want to spend that time.

And having the opportunity to exercise choice is really, you know,

key to palliative care and that individualized care that supports

the family, the individual family, and person to achieve those goals

in the last few months of life.

So for example, if somebody wanted to go to their daughter's wedding or something,

all those sorts of things treatment is organised to accommodate that.

Or we've had weddings at the hospice and people's pets come to the hospice, or I

quite often tell her, tell a story about a patient who was one of our participants

in a study about opioids who I explained that, although his pain was pretty bad and

he took opiod pain relief for some time.

He actually stopped taking it because he preferred to be able

to see his grandchildren and the medication meant he couldn't drive.

So sometimes unless we understand people really well and not just understand

their symptoms, we need to understand

important to them.

And in that scenario, it was far more important to him to be

able to visit his family than have his pain fully controlled.

So you can't have these conversations or understand people's wishes unless

they have an accurate understanding of where they are in their disease really.

And and would you say that's probably the biggest difference between

palliative care and the average clinical care that is more of a sense of listening

and knowing what the person who's dying wants and being able to accommodate

their wishes instead of getting into protocols that are aimed at treatment

at keeping up hope at almost of medical profession, being in cahoots and thinking

are we're going to pretend that there's still the possibility, even though

they know there isn't but because they're afraid of saying it's out loud.

Yeah, I think palliative care does, it creates that space

to step away from treating a disease, to supporting a person.

And it is a specialism intensive to specialist, symptom management,

and there's a lot of expertise within palliative care, but I do

think very strongly that actually palliative care is everybody's

business in healthcare and medicines.

And I think things will move very much in that direction where our medical

students and doctors throughout their careers are much more aware of the

role of palliative care and moving from not just treating disease, but

to treating people holistically and knowing when to stop the aggressive

treatments that aren't proving beneficial.

It's really great your saying that in it's a very elegant bridge to

my next question, which is would you agree that there's a lot that we're

learning in palliative care that is applicable to all of healthcare and may

be all of life because it's fascinating.

You mentioned too that sometimes it's very difficult to know when people are going to

die in the prognosis is often really vague and you almost have to draw the conclusion

that we are all on the path to death.

Only for some people it's coming earlier than they had hoped at some previous

point in their lives, but where really is the difference between being on

palliative care and living and without knowing when you're going to die?

And how many of the lessons that we learned from giving people

good palliative care and providing them with an opportunity to have

a really beautiful end life.

Can we actually apply to other people's lives?

It was death may not be so imminent, but otherwise aren't all that different

from people on pallative care.

Yeah, I think that's right.

And as the population ages and people are living so much longer with multiple

morbidities, there's people living for many years in a sort of health

state, which previously, perhaps 20, 30 years ago would have been considered

a palliative state health in terms of we'd have died more quickly, we would

have had less medical interventions.

So I think this concept of palliative care becoming more part

of medicine and more generally.

One of the things that I think will have to happen is that generalist settings.

So GPS even care homes and social carers are going to have to deliver palliative

care, whether that is specialist palliative care or whether that is

embedding the principles as you suggest palliative care into those settings.

That's the only way that we're going to reach the sort of population that

have got the potential to benefit, because otherwise the provision as it

stands of specialist, palliative care in the UK is in pockets of expertise

within hospices and within hospitals.

And it's not accessible to the majority of people who are dying in the community.

And I think through the pandemic, the number of people that die at home

rather than in hospital increased by 40% and that trend has come out at

the pandemic and people could have gone into hospital has continued.

So there's been a real shift that is likely to be sustained where

people are now dying at home.

So how we provide palliative care to those is, is the next big challenge.

I think.

Yeah, it's a beautiful challenge though.

I would say.

And I'm wondering because the University of Leeds of course has a very vibrant

medical school and we're training medical students, but also allied

health professionals or we're training psychologists and nurses and midwives.

So we have a quite holistic approach also to the, the curriculum.

How do you think we should embed your research findings and everything

you're learning from good quality palliative care into the curriculum?

Both medical curriculum and the other side just mentioned, cause I think there's

lots of room for improvement still.

I think there is a huge amount and I think it needs to

start fairly early on because it's almost a shift in understanding

what medicine is about perhaps.

So as you explained, it's typically been very much about curing disease, treating

people, active treatment, doing some things, you know, medics don't do nothing.

And actually palliative care, isn't doing nothing, but it

isn't trying to fix something.

I think for palliative care to find a place in a medical model of

education, it needs to be there right at the beginning so that it starts to

challenge those preconceptions, that's where it's all about fixing things.

And actually a paramedic approached me a few weeks ago to ask if I would be a

supervisor on a project in palliative care and she has got so disillusioned

by taking patients that are dying into hospital, that she wants to do a PhD to

explore how paramedics can have a role in keeping patients at home and supporting

them and their families to stay at home when they are approaching the end of

life, rather than taking people who subsequently might die in A&E surrounded

by unfamiliar people in acute hospital.

So it's not just researchers that are looking in thinking this is what's

needed the people on the ground and paramedics, if anybody was going

to be characterised as a profession that have to do something they're,

they're perhaps at the top, they're beginning to think differently as well.

And think it's a really exciting time for palliative care.

Welcome to this first edition of the World Changers

podcast from the University of Leeds.

I am Professor Simone Buitendijk and I am in conversation with Dr.

Lucy Siegler to hear about her research into palliative care.

My own background is in, in public health and especially maternity care.

So when I was still an active researcher, I researched childbirth

and pregnancy and also how women feel when they're giving birth and when

they're pregnant and what care they need, it would care they don't need.

And I was constantly bumping up against that medical paradigm that we need to

do something it's very difficult for the average doctor to keep their hands

behind their back and not intervene.

Sometimes it's actually really important to have a cesarean section

no in instrumental delivery or do something to save the baby.

But I think in general, medics and obstetricians, they're far too keen

to intervene thinking that the more you intervene, the better almost to

say it really simplistically, and there's very little awareness of what

that means for women and how they feel about their birth experience.

And there's actually quite compelling research that shows that very

interventionist, which are often the most traumatic types of childbirths

and make women prone to postpartum depression, which of course has

huge influence on the babies.

But in palliative care course, he can't use the excuse that you're

doing it to save someone's life.

But the behaviors are so similar.

Do you agree that there seemed to be parallels?

The parallels are very clear and the issue around doing

you're not actually doing nothing.

I mean, it must feel like you're doing nothing, but you're not

doing anything detrimental.

I think with the treatment so that if you think about the cancer treatment,

actually that comes at a huge cost.

So when it's not proving to be beneficial in terms of either

controlling disease or managing symptoms, you're making the patient feel less

well because they've got the side effects of the treatment to manage.

So in that sense, doing something is detrimental.

And I think that's the point that you're making here as well.

That actually we intervene and make worse and it might not be apparent immediately

that you've made things worse, but once they're out of the hospital and there's

longer term consequences, I think that that's the same, that it's hard to

quantify the impact of these things.

For research.

It's hard to quantify that somebody was on treatment for too long and they

could have squeezed in another holiday because that's not an outcome that's

on the radar of a medic or that one of the outcomes from the birth, isn't how,

well, three months down the road, the mother in childhood bonded, and whether

she suffered from postnatal depression.

So it's about thinking of some outcomes that aren't just related

to very medicalised interventions.

Yeah.

That's absolutely exactly what I think it is all about and that was my

research, looking at how women felt and, and also studying right outcomes

because if we never ask ourselves those questions we won't know.

We also won't be able to tell in your case, dying patients, in my

case, expected mothers and what the kind of choices are they have.

So I think what you're doing very clearly also related to this whole line of

research around shared decision-making between healthcare providers and

patients, people, and I think you're right, we need to have different kinds of

conversations and that kind of research needs to be seen as just as important as

referred to on the prevention of deaths with certain interventions or how long

patients will live after chemo A or B.

So isn't it to also about asking the right research questions and

listening more and doing longer term research, thinking more about the

psychology, not just the physiology.

Yeah.

So what is your research contributing to getting the person's voice in there?

The people's voice?

Cause I think doctors are inclined to say, this is what patients want.

And then patients will say, well, this is what the doctor told me.

And I think that's also the case in beginning of life, because that's what

all the obstetricians always said.

This is what the woman wants.

She wants me to do with this area.

And she wants me to do this intervention, but I think often the women aren't really

told exactly what the options are and I'm sure it it's the same, with dying patients

who may not always know they have options.

No and I think what we're trying to do to address the challenge of the

conversation, which is only one of the challenges, but the consultation between

the oncologist and the patient where we've identified opportunities to refer patients

to palliative care that isn't happening.

So we explored the barriers to those conversations and part of the barrier

was that patients have misperceptions about what palliative care was.

So most or many thought it was just about the last few days of life, so they

thought you could only be eligible for palliative care if you were really on

the last sort of stage of your life, and you would perhaps go to a hospice

and die there and they didn't understand that hospices and palliative care teams

can be involved for many, many months.

They can come and visit you at home.

There's activities you can do during the day, you can access

complimentary therapies and so part of our intervention was about trying

to address that misperception and prime patients for the consultation.

So give them the opportunity to write down some things that they wanted

to discuss at the consultation.

So they've empowered because I think over the years, many of these patients

have been on cancer treatments sometimes for 10 years or more on and off.

And the consultation takes on a bit of a sort of routine pattern

where you discuss scan results and you discuss side effects and then

you onto the next treatment regime.

So it was about recalibrating the consultation and saying, I'm coming

along with my agenda this time.

And then we did some training with oncologists about how to

structure the conversation.

So both parties were primed about what the consultation was about, and then

even the oncologist who had very long careers in have been working for sort

of 30, 40 years in the specialist areas found that beneficial and useful and felt

it helped them start the conversation.

It helped weave in what the patient wanted and it resulted in

well palliative care referrals.

So actually when you empower the patient to take the leads, it can really

change the dynamic of the consultation and bring in different options other

than continuing with treatment.

I'm sure it also makes doctors happier and it probably also teaches

them some really valuable life lessons.

Yeah, I think it does, part of what sent Gemma's University Hospice does a

large part of their education portfolio is around communication skills, advanced

communication skills and I think is a huge part of the medical curriculum that

perhaps needs to be revisited in some ways, because I think the way doctors

and patients communicate has changed immensely over the last couple of decades

and patients are much more informed, much better informed, then often much ready to

take an active role in decision-making.

So this sort of giving bad news format of a communication training, it's much more

interactive, I think, or patients want it to be a much more interactive process.

In the past historically, the doctor gave the information, you

absorbed it, and it was about how that information was relayed.

And there wasn't, I don't think the same emphasis on trying to draw out the

patient's preferences and, and involve them in the shared decision making,

which is, I think a much more typical of communication with patients today.

Yeah and would you say that's the core of what the University and St.

Gemma's are doing together?

And I think it's brilliant.

We have the first University teaching hospice.

I think it's such a wonderful concept.

And is this core you think or are there other areas that you

feel the collaboration gives us?

We worked with St.

Gemma's very closely on education and research and there's almost too

many exciting projects to talk about really but I think one of them that

captures what we're about really is the projects to try and address the

issue of people who are homeless, not getting access to palliative care.

So, this is a really fantastic innovative project, which has resulted in people

who are working in homeless hostels being supported and skilled up by community

palliative care nurses to support homeless people, to die in the hostel

rather than in hospices or in hospital.

So I think there's only been one or two occasions when a person that was

homeless had been in the hospice and it didn't fit with what they wanted at all.

It didn't enable them to see the community really, that they are part

of people couldn't travel to see them and it wasn't the right model at all.

So this project has really turned that on its head and the hospice has

gone to the hostel and supported.

You know the staff in the hostels were very concerned.

As you can imagine about the prospect of allowing somebody to die supported

there, but rather than as they would have done in the past, sort of taken

them to hospital or call it an ambulance.

But that model is working now and continuing to sort of

evaluate it and take it further.

That's a really brilliant example and how absolutely wonderful.

And she know of the people who are enabled to die in the hostel,

who are the caregivers around them, apart from the hostel staff?

Is it other people living in the hostel, is it their families are a combination

thereof do you have any data on that?

Sadly, we learned a lot of people that are homeless or are

estranged from their families.

But one of the people that died in this way was actually supported by the

community nursing team to make contact with their family before they died.

So that was a real positive aspect of it that otherwise wouldn't have happened.

So although their family weren't directly caring for them and they died

in the hospice, they reestablished that contact and that was something that

was important to them to try and do.

So it's addressing inequalities in a way that a few years ago, I don't

think we could have imagined we would have found a way to achieve.

What an absolutely wonderful, inspiring example, and also what

a gift to the family members who were able to be there even though

they'd previously been estranged.

That's really brilliant thank you so much.

I'm wondering towards the end of our interview, Lucy

is one of our World Changers.

Would you be able to share with me what your hopes are for the way palliative

care willing to fill up in the future?

I think what would really be fantastic is if palliative care became

available to everybody, who's got the potential to derive benefit from it.

So that might be a bit of an unrealistic ambition, one mechanism to try and

start achieving that is as we've already discussed to start for palliative

care, not to just be provided by these pockets of expertise across the UK

in hospices of specialist palliative care, but by disseminating that

expertise into the generalist setting.

And as I said before, making it everybody's business, so everybody

feels equipped and confident to support their patients at the end of

life, to make choices, to make plans.

And of course, specialist as palliative care is there for specialist symptom

management and those things, but there's an ethos to palliative care

that can easily be adopted as we've seen into settings, which haven't

necessarily even got a medical training such as a hostile staff.

And it's perhaps that ethos that is most important about recognising what's

happening, supporting people to plan, supporting people, to make choices and,

yeah, I think that would be incredibly beneficial and start to help us see

how we can, help us address how to meet the needs of the growing population

who are going to need palliative care.

Yeah, I think it, it's not unrealistic to think that we all need

that kind of care towards the end of her lives and to strive for being

able to provide that to everybody.

I think it's actually a really beautiful way to end this interview

and the University will help you with your research here.

One of our rising stars, I think this topic is so incredibly important for

all of us and I think I, we should hang on to that idea that this is something

that should actually be available to everybody who wants it and needs it.

So let's stick with that vision and work together to make it happen.

So thank you, Lucy

for this incredibly inspiring interview and for sharing your ideas and

especially for being such a wonderful researcher and part of our community.

It's really great to have you with our University of Leeds community.

Thank you so much for today.

Thank you very much, indeed.

It's an absolute pleasure and it's a delight to be able to talk about it.

Thanks Lucy.

Thank you for listening to this podcast from the University of Leeds, to find out

more about the work of our early career researchers and to read essays written by

World Changer researchers, please go to the World Changers page on the University

website, details can be found in the information that accompanies this podcast.