Let's Chat... Life in a hospice (with Maddy Bass & Kay Backhouse)

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Claire (00:00):
Hello there, and thanks for joining me for another
episode of Let's Chat. I'mClaire Sandys, host of The
Silent Why podcast, a podcastexploring how we can all find
hope through grief and loss. Inthese Let's Chat episodes, I
talk to a guest or in this case,two guests who have experience
or expertise in a particulararea of loss, grief, or maybe

(00:20):
even death. And in thisconversation, I'm chatting to
Maddy Bass, Director of Nursingat St. John's Hospice in
Lancashire, and Kay Backhouse.
Author and clinicaladministrator also at St.
John's.
I actually came across thistopic sort of accidentally,
because I was having a chat withKay about a future 101 Loss
episode that we're recordingwith her soon, about the complex

(00:41):
death of her brother in ahospice. And she said, 'I wish
more people knew what it wasreally like in a hospice,
because it's not the sad, scaryplace, a lot of people might
imagine', well, that got myattention. And I said, Let's do
a Let's Chat episode on thatthen, because I'd love to know
more about life behind hospicewalls. So Maddy got invited into
as the director of nursing whereKay works. And here we are.

(01:02):
Maddy has wanted to work withpeople who are dying all her
life and is passionate about herwork and providing the best
possible care. And Kay hasexperienced the death of her
brother in a hospice, not thehospice we're talking about
today, and has since thenstarted volunteering at St.
John's. So they're the perfectpair to give us an insight into
what life is like working in ahospice, but also what it's like

(01:23):
as the family members of someonewho's having end of life care.
In this chat, we talk about howit works when you need a hospice
who pays for it, what theatmosphere is, like, why they're
so important, what their role iscompared to hospitals, what
would they want people to knowabout hospices, and how working
around grief and death mightaffect their own dealings with
it personally.
Plus, Maddy offers to buy melunch if I go and visit. So I've

(01:45):
officially got that recorded andyou're all my witnesses.
And through these lectureepisodes, I always want to
capture something useful to helpothers from the conversation, a
bit like the Herman's that wecollect in our 101 loss
episodes, pop over to the homeand company.com For more on
that. So from these I'm buildinga tool shed metaphorically of
equipment to help us face andget through loss and grief. And

(02:06):
at the end of each episode, Iask our guest what sort of tool
their subject might be, then Iadd it to my shed. So far, I've
acquired a very useful range oftools, and today I get two more
that I don't already have. I'mjust constantly amazed at how
few duplicates I have in thisshed.
Now, when I recorded thisinterview, I was towards the end
of my eight week cold cough drythroat thing. So thank you,

(02:28):
Maddy and Kay for being veryprofessional and ignoring me as
requested when I had to keepmuting myself to cough or blow
my nose. But don't worry, I'veedited out all my coughs and
splutters for you that arelistening. You're welcome.
So grab a cup of tea or coffeeor maybe a hot honey and lemon
if you're also suffering withthese cold, wet grey British
spring days, and relax with me,Maddy and Kay as we chat life in

(02:49):
a hospice.

Kay Backhouse (02:54):
My name is Kay Backhouse. I'm based in
Morecambe in Lancashire. And Iam an author, author of 'Losing
You, Finding Me', I'm also aclinical administrator at St.
John's Hospital in Lancaster,and I am a grief mentor and
transformational coach. But I'malso a wife, a mom, a sister, a

(03:17):
daughter, and auntie andeverything that goes with that.

Maddy Bass (03:21):
I'm Maddy bass. I'm director of nursing here at St.
John's hospice. So I've beenhere for 10 years now. But I've
been a nurse for 32 years. And Ikind of thought I'd know
everything by now. But I thinkI'm just aware of what I don't
know. So I live inBurton-in-Kendal, which is just
outside of Kendal. We moved uphere 10 years ago, 10 and a half
years ago now, sort of careerbut lifestyle move as well, from

(03:44):
Suffolk. I'm a wife, I'm a dogmum, daughter, aunt to a lot of
surrogate children and justenjoy quite a lot of trail
running and wild water swimmingin my spare time.

Claire (03:54):
So we are here today to talk about your work and what
you do in the area of hospice,hospices? Is there a plural for
hospices?

Maddy Bass (04:01):
I think it's hospices. There's no hospi! I'm
not aware, it's or hospex oranything. I think it's hopsices.

Claire (04:07):
No, right. Okay, so yeah, why don't you both tell us
a little bit about what yourconnection is and what you're
doing in that area specifically.

So my role within the hospice is twofold, really.
So I work as a clinicaladministrator for the hospice at
home team. So that's thecommunity team. So that's where
we can help people stay in, inthe home when they were
approaching end of life andsupport the families in the home

(04:33):
as well. I also work on theinpatient unit in a similar
role, and I'm also a volunteerin the bereavement Centre, which
is called the Forget-Me-Notcentre.

Maddy Bass (04:43):
As director. I'm kind of in charge of all the
patient facing services, soWard, community de services and
bereavement. I manage themanagers. I manage the budgets
manage the policies andprocedures. I'm the lead for
control rocks. I'm the lead forsafeguarding. I'm the registered
manager with CQC, and lots ofother things that go along with

(05:06):
that senior role. So I'm a bitof an advisory support alongside
many office based in uniform.
I've been working on the wardtoday and try and do some
clinical work every month inWard and community just to keep
in touch with the staff and chatthere. Okay, it's a
psychologically demanding jobhere at the hospice. It's not
quite throughput that thehospital that the NHS has, but
it is psychologically demandingwith really complex cases in

(05:30):
community and on the ward. Andthat's where really where the
staff needs support.

Claire (05:35):
Yeah. And you mentioned the ward there. Maddy tell us a
little bit about what thatmeans, because I didn't realise
that Some hospitals have wards Iwas kind of picturing lots of
rooms. So what is the physicallayout?

Maddy Bass (05:44):
So here at St.
John's, we have 13 beds, we'vegot five side rooms, and then
the rest of the beds are inlittle bays, so two bays have to
obey of three. And that justmeans that if people feel more
comfortable with a bit ofcompany and feeling that they're
not on their own, that can oftensuit them better. It also means
if people are confused, climbingout of bed or delirious for
whatever reason, there can belots of reasons for that, that

(06:06):
we can keep an eye on them infront of the nurse's station. So
hospices are all built verydifferently. A lot of them have
got side rooms, if they're moremodern buildings, our buildings
40 years old. In fact, it's 40years tomorrow, that the first
sod was cut for the hospice. Andit opened in 1986. So we'll be
40 years in two years time, butit's quite significant time of

(06:26):
year for us this. So yeah, sothat's inpatients so we manage
that service, and we employ allof the nurses and doctors and
then community patients are intheir own homes or in care
homes. And we'll support themthere alongside their normal,
other carers family or nurses.

Claire (06:43):
So I think a lot of people think of hospices, and
it's this sort of quitedepressing people dying, lots of
deaths on a sickness, lot ofillness. That's kind of what I
think a lot of people picture intheir head a little bit scary,
probably for a lot of people. Sowhy on earth would you want to
go and work in that kind ofenvironment, and I suspect
you're going to tell me, it'snothing like that at all. But
tell me a bit about why you bothchose this particular area to

(07:05):
kind of go and work in.

Juston what you just said there about hospice
before I went to work in St.
John's hospice, I also had nothad any experience whatsoever in
a hospice environment until myown brother got unwell with
cancer. My thoughts abouthospices before my brother got
unwell, and needed one was thesame, I thought, it's just full

(07:27):
of sadness, it's full of death,but it's not a place I want to
go. It's not a place even wantto really talk about. So when we
actually got to a point of mybrother was ready to go into a
hospice for care and support. Iwent in blind, which was
actually, I would say, now moreoverwhelming than if I had have
been introduced to what ahospice was and what people do

(07:48):
in a hospice. So that's quite asignificant sort of reflection
for me just recently that I'veactually been thinking about
that. So my brother was inhospice for about eight weeks
altogether. And throughout thattime, my opinion of a hospice
completely changed. But I wouldsay it significantly changed
when I decided to volunteerinitially in a hospice, before I

(08:12):
decided to work there. And it'sabsolutely nothing like what I
thought it was going to be. It'slike, if I wanted to go
somewhere where there is like,the happiest, nicest, kindest,
most welcoming people, that'sthe place I'd want to go. And I
felt really like almost robbedof that experience before

(08:33):
because no one had everintroduced me to the idea that
that's what a hospice was, Ithink we're really lucky at St.
John's, because we have afabulous cafe. And we have
things that brings the communityin there. Even if you don't have
any of your family or friends oranyone needing support from the
hospice, you can go there andfeel that you are contributing

(08:55):
and helping something that's asignificant part of the
community. And it is just awonderful place.

Maddy Bass (09:02):
I'd always wanted to work with people who were dying,
and I've no idea why really,even from when I was a teenager,
it just felt something that Ifelt comfortable with. And I
went into palliative and end oflife care in 1996. I've worked
in quite a few hospices nowalong the way. I think they are
lovely places. I think, as I wassaying to you, Claire before

(09:24):
it's not about the throughput ofpatients like the NHS is, it's
more about the intensity of thepatient care. So we only have 13
patients on the ward, but wehave a higher level of staff to
patient ratio, so that we've gotsome really specialist skills
from our medics and very skillednurses on the ward, who were
able to attend to everybody'sneeds, whether that's quite

(09:46):
difficult symptom management orsupport for the family or both.
And the most important thing isthat you meet the needs of the
person at that time, whereverthey are, and we know that the
NHS is stretched, there are someabsolutely fine Fantastic nurses
are managers in the NHS, butthey're dealing with very
limited budgets. And there's alot of good nurses and a lot of

(10:06):
good managers there. But we areable to, we have a small number
of patients. So we're able tomake to give really intense
concentrated care on the ward.
And we're able to work alongsidethe services in the community.
So we're in an extra. And that'sreally important for people,
we've got the time to be able tobe there alongside, in probably
one of the worst times ofpeople's lives. It's really hard

(10:27):
watching someone you love diereally hard. And going back to
what you said about hospices,you know, there must be really
depressing, and people die. Andpeople are ill, there's probably
more deaths in the hospital thanthere is in the hospice. But
it's a much more concentratedarea of death. But having said
that, 50% of our patients wenthome last year or to a care
home. So it's not that everybodycomes in and everybody dies,

(10:49):
they may well die, but a lot ofpeople stabilise or improve, and
then they'd go back home, orthey're discharged to a care
home where they can get a bitmore intense care.

Yeah, and that's that's exactly what happened to
my brother. So he actually hadto two admissions into the
hospice. One was for symptommanagement, pain management, and
also to support us as a familyfrom a psychological emotional
perspective. And then the secondtime, it I think, we were pretty
aware, I think, at that point,that that would be the last

(11:21):
admission. So yeah, I agree withMaddy there that it's everybody
thinks that that's it. Once yougo to the hospice, that's it.
You never leave. It's not it'snot the case.

Maddy Bass (11:30):
Yeah, well, if I go to the hospice, I'm going to
die. Well, there's nothing thatwe do in hospices that speeds up
or slows it down. It's not whereyou are, if you're going to die,
you're gonna die. But it's aboutwhere you want to be at that
point, that's most important.

Claire (11:45):
So following on from that, what would determine
whether somebody would go into ahospice or hospital? Because if
you don't necessarily go inthere just to die, which I think
most people would think is thecase, why would you not go to a
hospital instead?

Maddy Bass (11:55):
Hospitals are great for people, if they're
palliative, if there's somethingthat might be reversible. So it
depends at what stage people arein their disease process. So
they might have a chestinfection, they might not want
to go to hospital. Or it mightbe thought that actually if you
go to hospital, you're toopoorly to respond to the
treatment. So in which case,then you'd be considering

(12:16):
hospice. A lot of people don'twant to go to hospital, a lot of
people had very bad experiencesand will say no, when they come
to us, or when they're under ourservices, we'll talk about
what's the ceiling of care, doyou want this to escalate? If
something happens, and youdeteriorate, where do you want
to go. And most people say, Idon't want to go back to the
hospital. So in which case, weknow then if there's any change,

(12:37):
and then people become moreunwell, no one's going to call
an ambulance, they're not goingto get stuck in a&e, they'll
come into us if they need tocome in, or we'll just make them
comfortable at home do as muchas we can. Our hospice at home
team can do night sets. So we'llhave a healthcare assistant can
actually sit in someone's homefrom quarter to 10 at night till
quarter, seven in the morning.
That makes a massive differencefor people. We all know what
it's like, if you don't get agood night's sleep, everything

(12:58):
is worse, where you build in allof that psychological and
emotional distress as well. Itmakes a massive difference,
having just one good night'ssleep. So doing something like
that helping with respite,supporting people helping
symptom management, if you cankeep people at home, then people
will want to be at home. But itmay be right to go to hospital,
it may not be.

Comes back to being right place of care at the
right time for the right person,depending on what's happening
with them in that stage. So mybrother said he went into the
hospice for the first admission,then they discovered there was
an acute issue with his sodiumlevels being too low. So then he
was admitted into the hospital.
And he stayed on there whilethey got sodium levels under

(13:40):
control. Then he went home. Andthen he went back to the
hospital again. So again, he wassort of in the right place at
the right time for what heneeded.

Claire (13:50):
Yeah, it's interesting, it must be quite a complex
relationship between the two,you've obviously got to learn
how to word it really beobviously got the level of
knowledge or authority, whateverit is to have people there that
are dying. It's not like youneed to rush them off to
hospital because oh, gosh, thisis near the end, and we can't do
this bit. But then obviously,you can't do everything there.
Because like you said, like lowsodium was something that has to

(14:10):
go to somewhere more specialist.
So you're constantly balancingwho needs to stay who needs to
go to the hospital?

Maddy Bass (14:17):
Yeah. And the same at home. Really, it's about
making sure when it's that's whyit's good to have the advanced
conversations with people. So wetry and do something called
advanced care planning, which iswhat it says on the tin. It's
trying to get people to decidewhere they might want to be if
they become more unwell. Who dothey want to speak for him if
they can't speak for themselves,and they don't have a lasting
power of attorney in place thoseconversations, so if that

(14:39):
situation arises, we can justcheck with him. Do you want us
to do what you said. But we havepeople here on the ward that
then go over to the hospital,they might need a chest X ray,
they might possibly get symptomsof something like a blood clot
so that might be reversible, butit needs confirming so they'll
go over for tests. They mighthave fluid on the chest that can
be drained. We can't do thathere. And again, it's very much

(15:02):
about weighing up what thepatient wants at that time. And
actually whether it's suitablesome people are just too unwell
to go across and have that done

Claire (15:09):
Kay, because you're a bit more new to this area Maddy
thing she's been in it most ofher life, you will in the
hospital with your brother, yousaw your brother die. What took
you back into a hospital becauseI'm guessing that's not what
everybody's experienced, I mustcome and work here. Because I've
been in one I've been throughsomething awful. What happened
there?

He died in 2019, I didn't actually die in the
hospice that I work in. So diedin a different hospice. If you'd
have asked me this, in the firsttwo years, I would say following
his death, I would not have saidthat I would want to work in
hospice. It sort of came duringthe whole grieving process
healing process, if you likethat, I decided I wanted to be

(15:47):
of service to other people thatwere going through the same
thing, I just had this realfeeling that there was something
that I could do that waspositive and constructive. And I
could share my experience in apositive way, I had really
complex grief, he had a verycomplex death. And that impacted
the whole family, I can onlyreally speak for myself. But my

(16:10):
grief was very, very difficultto manage in the first two or
three years. So when I feltready, I basically joined the
hospice as a volunteer. So Iwanted to just put my toe in the
water, and just see if I couldcope being in that environment.
And the very first day I walkedinto the bereavement centre, the
forget me nots centre, I wasjust like, you just have those

(16:33):
moments in life where you justgot I'm supposed to be here,
like, this is what I'm supposedto be doing. And being able to
talk to people who are goingthrough something very similar,
and to be able to help just bylistening. It's not even that
you're doing anythingnecessarily, but I just felt,
you know, just this connection,and it actually helped me heal.

(16:57):
I was very, very frightened ofdeath after my brother's death,
because it was complex. Byworking in a hospice, I've
realised that that noteverybody's experience. And that
doesn't happen to everybody.
It's not a one off, becausethere are a percentage of people
that have his experience and ourexperience, but working in the
hospital has benefited me in somany ways through through that

(17:20):
grief.

Claire (17:22):
Yeah. And we're going to record an interview with you
talking in more detail aboutthat. So we can hear about how
you've worked through that griefand what it's like to go through
a complex death with a familymember like that. What do you
think our hospital offers theperson that's dying, but also
the family in that journey andas part of that grief process?

There's a number of things and ways in which they
supported us as a family. Andthis, this happens at St. John's
and it also happened at thehospice where my brother died.
It's it's like everyone sort ofcomes together to hold the
family. So we had complementarytherapies, which I had no idea
happened within a hospicesetting. And how that helped.

(18:01):
For example, my parents hadReiki they've never had Reiki
before. And they now have Reikieven now, so it was something
that really, really helped thempsychologically, it helped them
with their emotions. During thattime. We had all of the officers
and medics with us, the nurseswith us, we could ask questions

(18:22):
with there were counsellorsavailable to help my brother's
son come to terms with the factthat his dad was gonna die,
there was a lot of complexitythere because he was 12 at the
time. And he's, I never likedsaying autistic because I'm not
a label person. But he has somecomplexity that in that he can't
necessarily process things thesame way as everybody else. So

(18:45):
there was all of that support aswell. And all of this happens in
the hospice setting where I worknow. And nap hugely helped us. I
think,

Maddy Bass (18:55):
Kay's right, when she talks about holding the
family, it's not just aboutseeing the patient or the person
on their own, you know, theperson's part of a social unit.
And that can be blood relatives,not blood relatives, it can be
friends, families, dogs, birds,it can be a multitude of things.
It can be the milkman, thehairdresser, you know, and it's
bringing in the people that areclosest to them to be included

(19:16):
in their care and to help themwith making those decisions when
they can. Every hospice offersslightly different things, but
most will offer some sort ofbeds in the building, some sort
of community support, and somesort of bereavement support. We
offer day services here as well.
So we do something calledfatigue, anxiety and
breathlessness. The Fab group aswe call it, for people with
breathing problems from diseaseand that can be a cancer or

(19:39):
COPD, chronic obstructivepulmonary disease, or heart
failure. So we offer those kindsof things as well. So we can get
involved quite early on in thejourney and encourage people to
do that advanced care planning,and we can be there right at the
end of life and going forward.
Because you would want to knowthat the family is left behind
or going to be looked after andParticularly, we see a lot of

(20:01):
older couples where the childrenlive away or the children may
have died. And you know, they'rein their 90s, they may still be
together, and you've got someonewho's left on their own after
years of being with someoneelse. And they're as vulnerable
as the children, other peoplethat we're dealing with as well.
So it's about carrying on thejourney with the rest of the
family.

Claire (20:20):
I know that there are children's hospices that are
different what is the sort ofage range that you're catering
for?

Maddy Bass (20:25):
So we're 18 plus, we will be involved with supporting
people from 16 and 17. Ifthey've not been involved with
other palliative care services.
What you're getting now more is,children's hospices care for a
lot of children with congenitaldiseases. So things that they're
born with, or they may developin early life. And that's a very
different model to what we do inadult hospices. So for those

(20:46):
know, that are living longer,the 16 to 18 year olds are
starting to come now into adulthospices, and it's a very
different model of working. Soit's difficult to help them with
that transition. We're not theredoing the respite in the way
that children's hospices are,we're not necessarily there to

(21:06):
do the play activities andsupport that they might have
been used to. So there is a lotof work now on that transition
period, when people are over 18,because they may live a lot
longer than they would have doneso. So it's a different model.
It's a different setup, buthopefully we can work with with
when they're transitioning fromthat children's to adult

(21:26):
hospices, you know, children'shospices are more about respite
and support and we're not withadult. So it's, it's quite a big
change for parents particularly.

Claire (21:37):
Do you ever get it so that a child would have to move
from a children's hospice intoan adult hospice, because
they're sort of survivinglonger, or would that not really
happen?

Maddy Bass (21:44):
They can do, you tend to find it's when they're
in their late 20s or early 30s.
Now, so depending on what whatthe problem is, and what the
needs of that person are, theymight stay with a children's
hospice for quite a bit longer.
And I know that some children'shospices still have people there
that are in their 40s. But it'snot deemed appropriate for them
to come into the adult hospicesbecause the model of care is so

(22:05):
different.

Claire (22:05):
So tell us a bit about what it is like day to day in
hospice. So someone walked innow, what would they see? Again,
you kind of picture either lotsof little rooms or a ward and
lots of people that lookdangerously sick, and lots of
people maybe crying at theirbedside. I think that's the kind
of image a lot of people have.
And I know that we want todispel that a lot today, because
I've heard Kay talking aboutworking there. And it just

(22:27):
sounds like such a happy place.
And I've heard other peopletalking about hospices in that
way as well. So what wouldsomebody see if they're
wandering in having a lookaround?

Maddy Bass (22:37):
Well, the nice thing about St. John's is when you
come into reception, we've got ashop and a cafe. That's the
first thing you say. So you seenormality. And that's really
important. I think for peoplecoming in, you then go down a
corridor, and you will come ontothe ward, you don't see people
sobbing at the bed. Some peopleare upset. But not everybody is.

(22:58):
You might see people thatpoorly. But equally, you might
see people sitting out in achair, you might see patients
walk into the toilet, fairlyindependent, but knit they're
coming in to help the sum oftheir symptoms. Last week, we
had the Salvation Army in for alady who wants to see them with
her wife. So they came in andplay to their repertoire. And
then she and a wife hadafternoon tea. The week before

(23:20):
that we have someone whose horsecame literally into the
building, stepped over thethreshold, so he could stroke
the horse's head. So there's alot of very happy things.
They're very emotional. They'revery poignant. But there are a
lot of things that the team doon the ward week by week, it's
just normal afternoon teacelebrations, we had someone who
sang got married and he wasn'twell enough to go. So we managed

(23:42):
to video link him up in thegarden room, he was able to
watch that then his son camewith his wife the next day, they
had a blessing in the summerhouse out in the garden, and a
little reception afternoon teafor nine people. So you know, we
do those, we don't ask forpeople to dip into their pockets
and do it. We'll pay for aprivate ambulance for someone to
go home or to go onto a tripthat they want to for the last
time if they're not well enoughto do that under their own

(24:03):
steam. It's about what'simportant for that person at
that time. So that makes it ahappy place. Because it's a
satisfying place to work. Itdoesn't mean it's not sad. It
doesn't mean it's not emotional.
But it's not about grey wallsand everyone in black sobbing
and you know, mourning. It'sabout celebrating the life that
people have still got left.

My experience is very much very much that I work
in their hospice at home team.
So it's a little bit differentto being on the ward. So there
is basically an office that'supstairs and that has a group of
clinical nurse specialists, andthen their senior registered
nurses, senior healthcareassistants, and coordinators,
some community management, andwe all sit up there in that what

(24:46):
I see determined as a hub, butit's basically the happiest room
to walk into. It honestly is Iwalk in every day and it is just
all of us together. And I thinkto me, the hospice is where life
and death meet. So it's notpossible to sort of have
meaningless conversations, theydon't really happen very often,

(25:08):
they're very meaningful. And tobeing part of those meaningful
conversations with families withpatients, you tend to do it with
your colleagues as well, whichcreates this really strong bond.
And this really lovely morale,where you all feel like you're
there supporting one another,all the time. So even though we
have sad moments, and Idefinitely have had phone calls

(25:31):
in the community team, frompatients and from their family
members, and it could be a callto say that somebody has died.
And the other person at theother end of the phone has
literally just sat with theirparent, their partner, their
sibling, and watch them taketheir last breaths, and I may be
the first call that that theymake, it is upsetting. But at

(25:53):
the same time, you feel reallyprivileged that they're sharing
that intimate moment with you,and you are able to hold them in
that intimate moment. And thatsomething that I feel, is just a
wonderful thing to be able todo. And we have really good
support services set up withinthe hospice to support everybody

(26:14):
with, as Maddy said, theemotional side of things. So I
have regular clinicalsupervision. So I'm able to
offload whenever I need to, if Iput the phone down, and I felt
upset about something, I canturn around to a colleague and
speak to them immediately abouthow I'm feeling. And we're all
fully supportive of that. It'skind of like the norm.

Maddy Bass (26:38):
And I think the thing that we all know, without
breaking bad news in a bad wayis that we are all going to die.
And that death is the onlycertainty that we've got in
life. And it may be early, itmay be untimely, but it still
happens. And you can argue thatpalliative care gives people
time to think about it and saygoodbye as opposed to sudden
death, which is very differentand is a different type of

(27:01):
grief. And suicide. Again, thereare all different ways. And some
people might say, oh, I want togo I just want to go and sleep
really quickly like that. Andthen I don't have to worry, but
then the family do. And otherpeople say oh no, I'd rather No,
I'd rather have a little bit ofwarning. But then you may have
symptoms and, and your familymay see you suffer. And there's
other challenges. So the onlything we can say is yes, we will

(27:24):
all die one day and get youradvanced care planning done. Now
while he can.

Claire (27:29):
It feels like, and Kay used the word that I hear quite
a lot when people are talkingabout dealing with death and
dying as part of their job on aregular basis that it's a
privilege. It's a privilege tobe with people at these big
meaningful moments and the giftsthat you can give people at that
stage like you're talking aboutbringing in the horse and having
weddings that you can be passedon, you know, they're they're
just so meaningful, sobeautiful, I can understand that

(27:51):
you live in this world of of sadbeauty all the time. And that is
a privilege. And it feels likesuch a lovely thing to be part
of. And like you said it'sinevitable for all of us. So if
you can bring a bit of that topeople at the end of their life,
then what an amazing thing to dohave you both got moments that
stand out for you as likehighlights of joy, happiness,
sadness, beauty, just momentsthat you look back on and think

(28:14):
that was a really beautifulthing.

There isn't like an individual standout situation
that I kind of got all you know,that was I think what I'd like
to say, though, about that is inthe hospice environment, what I
love to see is when familiescome together, and you witness
the support surrounding thatperson. And that's obviously

(28:38):
I've had that direct experiencewith that with my own family,
and how we were brought togetherwithin the hospice and support
and support in my brother thebest best way we could in a
situation we'd never been inbefore. That was you trying to
handle your own emotions aboutit, and you're trying to hold
that person as well. So thatthat's, that's really difficult,

(29:00):
but I just think the samefamilies where they come
together and not all familiesare the same. And dynamics are
quite challenging. And sometimesthere are patients that come in
who don't have any family andthat for me, I find that really
difficult sort of really reallytugs at my heartstrings when I
see or hear or we have patientsout there in the in the

(29:20):
community who don't have anydirect family our support, which
is where we can come in andactually fill that gap for them,
which is amazing. So I thinkit's just that it's just the
fact that you see the beauty inwhat humans can do for one
another in those moments isreally, really special. And

(29:41):
they're often very simplemoments. They're very simple
things, but they're become themost powerful things for that
person.

Maddy Bass (29:48):
I think I've got lots, I've got lots where I
might feel it was great in thefamily feel it was awful. The
family might feel it was great,and I think it was awful.
There's lots of studies aroundwhat constitutes so Good death.
So being where you want to behaving the people around you
that you want, being able tochoose what you want, and not
going to hospital, those kindsof things that are key. And we

(30:10):
know that sometimes it's not howpeople want it to be sometimes
symptoms and end of lifeagitation can be present. And
that can be quite difficult tomanage sometimes. But what we
will do is, we will keep trying,we will never give up, we will
never stop hoping that we canget people comfortable and
settled. And we will never stoptrying to do what's right for

(30:31):
that person. And I think that'swhat's different to us safe from
some other services that areavailable. So you might have
treatment, I don't know, say,for cancer, and you come to the
end of the line for thetreatment of the cancer. And we
might be involved because thetreatments not necessarily
curative, but it is treatmentthat is helping some of the
symptoms and the diseaseprogression. But we'll be there

(30:52):
in the background. And then whenthat treatment stops, we just
take over completely. So that'swhen you want to make the hope,
right really want to try and getpeople as comfortable as
possible, and to give them hopethat you're never going to stop
trying to keep them comfortable.

Claire (31:04):
Maddy mentioned hope there. How important is hope in
what you do?

Maddy Bass (31:08):
I think when people have had treatment either for a
cancer or noncancer condition,and they get to the point where
they're told to can't give youany more treatment. What they
want to know is that it's notthe end of the line for them
that you know that that's a bigchange for them. And some people
have treatment for years, youknow, some people can have an
incurable cancer for quite a lotof years. And cancer is becoming

(31:30):
more chronic really, astreatments progress. People can
have 678 Fline. chemo, well,when I started nursing and
palliative care, if you gotsecond line chemo, it was very
unusual. So there's this hopecreated every time that if this
doesn't work, there'll besomething else and something
else. And at some point, itstops. So what we want to then
be able to say to people isokay, Matt might have stopped,

(31:51):
but what we will do is work withyou to look at what's important.
Where do you want to be whenyou're ill? Where do you want to
be when you're dying? Who do youwant to be with you those whole
things are prepared, we saidwhat's good for you what's what
might good death look like, somepeople don't want to talk about
it. And that's okay. So thatwhole thing about hope is
maintaining it, according towhat the patient the family are
willing to work with you on. Andoften the family are in a

(32:14):
different place from thepatient, patient might be
further ahead and accepting thefamily aren't and it might be
the other way round the patientisn't in the family are. So
we're not there to gang upagainst the others were there to
work and try and open up thoseconversations and get people to
talk about it. And if they don'twant to, that's absolutely fine.
But what we want to do ismaintain hope. And quite often,
you know, I can rememberpatients say I will I'll go

(32:36):
skiing next year, you know, I'mbooking my holiday now and you
look at them and think there'sno way you're going to be going
anywhere even in the next month.
But for them that's important.
So you have to maintain a littlebit of not lying to them not
pulling the wool over theireyes. But just saying okay,
well, you know, let's talk aboutthat a little bit more and
explore a bit more. Butsometimes it's more about just

(32:56):
talking, they actually knowwhat's going on, but they don't
necessarily want to voice ithopes one of the most important
things.

I have a stone in my house that's got the word
'hope' written on it. I've hadit for about 10-15 years. And I
had that in front of me a lotwhen when my brother had cancer,
and at the time, his cancer hadactually reduced. It had shrunk,
it was looking like it was goingaway completely. And we had sort
of a few years there where I wasfull of hope and full of it,

(33:27):
there was just no chance he wasgonna die. Like that's how I
felt. And that's how he felttoo. So I guess I feel I had a
complicated experience withhope. Because then as he
deteriorated, which was veryunexpected to me, I started to
lose hope. And it wasn't who Iwas. So it was kind of
challenging who I was as aperson. So I did go through a

(33:49):
period where I lost her up, helost her job, and we felt very
deflated. And just kind of likewe've lost the battle of what it
was that we were battling with.
It wasn't him battling thecancer, it was never that it was
just us against the world. Andwe were going to, you know, we
were going to win. So I feelYeah, I just had a very complex

(34:09):
relationship with it. But hurtnow to me is the recovery from
the depths of grief. That'sthat's where my hope is now.

Maddy Bass (34:19):
And hope changes, doesn't it? Yeah, what you might
hope for if you're firstdiagnosed with something
changes, if that then becomeslinked curable. And then if that
then means that the treatmentstopped. It's changing all the
time. You're describing itperfectly Kay about the fact
that it was you and your brotheragainst the world. And when it
didn't work out like that yourhope was dashed. So then what we

(34:42):
would try and do is work withyou as to what a more realistic
hope might be in that situation.
It's really difficult. It's allpart of that grief process.
Everyone's grief is verydifferent. But there are key
things along the way and youwhen you're told bad news, your
hopes are dashed course theyare.

Claire (34:58):
It's a lot more complex hope, than people imagine I
think we use the word quiteflippantly. Like, I hope this
happens, but actually when youreally need it, or when you lose
it, it has a profound effect onyou. And even with with us with
childlessness, I remember havinga chat with somebody wants
another woman who's alsochildless. And she said, I don't
want to lose hope I get that,but I'm finding it so heavy,
like the idea of just carryingit that you hope something's

(35:20):
going to happen. And it's kindof not going to and, and so I
had to go through that sort oflike, I want to have it but the
moment it's what's damaging mebecause it's sort of I'm hoping
in this and that might not behealthy. And it's really
interesting Maddy that you saidyou help people to find more
realistic hopes. And sometimes Ithink that is helpful, you do
need to shift where your hope isto find something that you can
hoping again, that mightactually happen to someone

(35:40):
you're hoping in somethingthat's not necessarily going to
happen. And that just gets itjust weighs you down. And and
then you end up losing it. Soyeah, it's an interesting
concept. And it's something welike to look at within the
framework of grief and lossbecause it affects people so
differently, some people loseit, some people never really get
it back. Some people have clungto it. We know with everything
they've got for the whole time,because all that kept them
going. It's it's veryinteresting to see how people

(36:01):
how people deal with that. Ifthere was one thing about
hospices that you'd want peopleto know that maybe they didn't
know or think differently about,what would that be?

That the hospice plays a part in the whole
journey for that person in thatfamily. So having hospice
involved sooner, rather thanlater, as scary as that can be
is better in the long run.
Because what I've seen isfirsthand, now, I've seen that
people hold the hospice at halfarm's length for quite some

(36:33):
time. And then when it comes tothe point where they want them
involved, it's very, very late.
And it's very, very difficult toget exactly what that person
needs, and their families need,because they haven't talked
about those things. So it's allrushed in the end. And it all

(36:54):
feels very overwhelming and verypanicky. And it then it feels
horrible. So I, I would say thatanybody who has a cancer or non
cancer illness, that isshortening their life, don't be
afraid to have a hospiceinvolved early on, it doesn't
mean that it's going to hastenyour death.

Maddy Bass (37:15):
And I'd say exactly the same as Kay, give it a go.
Don't be frightened of it. Youknow, modern hospices are very
different to how older peoplemight have viewed hospices years
ago. So give it a go. And we'rehere to work with you. And you
don't have to come in and stayin, you don't have to come in at
all, we can help you in your ownhome. Yeah.

Claire (37:34):
Yeah, that's amazing.
Because I guess there's a levelof once I get a hospice
involved, I'm admitting thatmaybe I'm coming towards the
end. And I'm guessing that sucha big thing to get to the point
of admitting, and that justconfirms it, I can see why
people would hold it at arm'slength. But I can also see how
much that limits you and whatyou can do to help them from
what you've said. So yeah,that's really important. And how

(37:55):
important is language in whatyou do? Because we've spoken to
people who have got all kinds ofthoughts on talking about death
and dying, some of our guestsjust do not use the D word. Some
of our guests only want to usethe D word. Some don't like the
language that doesn't fullydescribe it or if you're
throwing medicine they need tosay someone has died not passed
on or something cuz we need tobe very clear. Is that something

(38:16):
that you have to consider orhave policies on? Or how do you
just guided by the patient andhow does it work?

Maddy Bass (38:24):
Mainly guided by the patient, but we will, we
wouldn't find someone that andsay, Oh, I'm really sorry, your
loved ones passed away or itbecause in that moment, it's a
really stressful phone call andpeople can misinterpret it. And
I had a relative of someone whowas staying on the hospice who
went her mum had died, had beentold she'd gone to live with the
angels. And she said it wasn'ttill she was in a 20 she

(38:46):
realised a mum had died. So youknow, it's, it's, you've got to
be clear with people. And it'sinteresting how we're so against
the D word, that four letterword, isn't it dead died death.
If we went back 150 years, itwas everyday language. We didn't
cover it in nice spongy thingsand make it soft and unicorn
like and sparkly. It's rubbish.
It's rubbish for peopleexperienced in it, and you put

(39:08):
in a different name on itdoesn't make that any less
rubbish. So I think you need tobe straight with people. You
need to be honest, when you usethe depth where people know what
you're talking about, whenyou're honest with people that
can open up very interestingconversations, very different
conversations. I mean, I cameinto nursing because I just love
people. I'm very, very nosy andmost nurses are, but I'm really

(39:29):
interested in people as well.
And I've been very privileged tobe part of some very, really
interesting, very personalconversations with people over
the years. And I would alwayssay honesty is the best policy.
But there's ways of sayingthings. It's not what you say.
It's the way you say it. That'simportant. I believe you can say
anything to anybody, as long asyou approach it properly.

Yeah. I would completely agree and I think
people talk about death. I saydeath and dying and dead a lot.
A lot more than I used to. Sohe's definitely changed the way
I talk about it, I receivedquite a lot of bereavement
training at the hospice, andthat was talked about in a lot
of detail. And especially whenyou're communicating with

(40:13):
children, and young people,there is a need for them to
fully understand the situation.
And that Dead is dead. Becausesaying things like, you've lost
someone, a child can interpretthat as well. Where are they
then when they're lost, lostwere in the supermarket. And you
know, so it's, it's veryimportant to say the words, I'll

(40:33):
say, from personal experience aswell being in the hospital with
my brother, this is why it'simportant to really understand
the person and everything to beperson centred, and around that
family, because language andcommunication is so important to
be tailored to that family. Somy brother was very pragmatic,
very practical, said it how itwas, he was very funny, but he

(40:57):
liked to just be told straight.
And the number of people thatdid try and have a very fluffy
conversation with him arounddeath, did not connect with him
at all. And it actually madethat experience for him quite
frustrating, because he justwanted to launch things at the

(41:18):
door as they left the room. Hefound that really frustrating.
He was like, what, you know, whyare they fluffing around, he
found that very frustrating. Andthat that was just one or two
people that were like that. Andall it was was they had not
taken the time to understand howSyd like to receive language,
how he liked to be communicatedwith. So I think language is

(41:40):
extremely important when we talkabout death.

Claire (41:43):
But he said it's one of those things, we don't talk
about it as much as we used to.
And we have hidden it away asmuch as possible, really, which
is why it's nice to chat topeople like you and funeral
directors and other people thatwe've spoken to who deal with it
regularly. Because it'simportant, you know that that we
bring it out a bit more if wewere living in a warzone, there
will be a different storybecause we'd be dealing with
death on a daily basis. And we'dhave to talk about it more. But

(42:03):
we're privileged, I guess, inthat we're not but at the same
time, we've tried to hide itaway. And I think that makes it
so much more scary.

Maddy Bass (42:11):
I think with when the NHS came about in 1948. I
mean, what a fantastic thing theNHS is, but it talked about from
the cradle to the grave. So Ithink that's when we started
making death quite clinical andmoving it into hospitals.
Because it was hard in people'shomes. It was you know, who
would want to be at home whenback then standards of living
weren't as good as they are now.
The community services weren'tthere, you would rather be in a

(42:34):
building, but things havechanged massively. Since then
we've got great communityservices locally, people want to
be at home standard of living alot better than they used to be.
So you know, we still get peoplethat are living in very
difficult situations that whereit is much easier to come in. We
had a gentleman last week, helived in a caravan, no water, no
heating, no electricity. That'show he'd wanted to live all his
life. But he became so unwell.

(42:57):
It just wasn't feasible for himto stay there. And he came in
front of life care died verypeacefully with us. But that was
his choice. Some people do livein very difficult situations.
But you know, we've now gotsituation where the NHS is so
overloaded. It can't be dealingwith that death and dying. So
people would want to be at home,wouldn't they? If they could,
not everybody can. But we willhelp those that we can. And when

(43:19):
they can't cope, we'll bringthem in.

On that Maddy.
And I'm sure I'm right in sayingthis, that most people are the
high percentage of people do dieat home and choose to stay at
home. Absolutely. That's what Isee in my everyday work. The
only reason my brother chose notto die at home was because he
was living with my parents andthe idea of them being able to
live in that house after hisdeath. He just couldn't bear the

(43:42):
thought for them. He said that'sawful for them, they'll need to
sell the house and I don't wantthem to do that.

Maddy Bass (43:50):
And caring for someone at home. It changes the
relationship and I'm thinkingabout your parents, Kay, caring
for said, you're no longer ason, you're a carer and some
relationships, that's the rightthing and others that isn't you
know, when you're caring for ahusband or a wife, you want to
be a husband and a wife. Youdon't want to become a full time
carer. That's not you know,that's quite difficult for

(44:11):
people. Some people want to doit, and it's the right thing.
But for some it's not right. Soyou can maintain that
relationship has husband, wife,parent, while they're in with us
on the ward? Yeah,

Claire (44:22):
Yeah, I'd imagine that it's really important that
people know there's no shame orfailure in doing that. If they
suddenly feel they can't do it.
Sometimes there's a lot of verygood reasons why that should
happen needs to happen or whysomeone selflessly chooses it.
That it's so sad, I think whenpeople have end of life stories
where there's regrets, orthere's sadness, or I failed
them, because I couldn't do thisto the end or whatever. And it's
like, well, not everyone can dothat. Not everyone should have

(44:43):
to do that.

Maddy Bass (44:45):
A lot of people do feel that, Claire, you're
absolutely right. There's thatfeeling of well, I said I'd keep
them at home and I feel I'mletting them down. But often the
patient will say if they'restill able to wish not let me
down. You've done everything youcan but it feels right to take
the pressure off you now. Andlet me go into somewhere where
they can cheer for all of us.

Claire (45:01):
And that helps the grieving, I would imagine
because you've released thatburden in inverted commas. So
no, it's not burden as such. Butwhen you've released the caring,
you can probably have meaningfultime together. In a way that's
harder to do if you're lookingafter someone physically.

Maddy Bass (45:13):
Absolutely.

That was my mom's experience in the hospice,
staying with said she didn'tleave the hospice. For those
eight weeks, she didn't even puta pair of shoes on for eight
weeks. And she was able to dothat because they supported her
knowing that she wanted to bethe carer, but she wanted to be
supported while she was caringfor him. So she slept next to

(45:37):
him for the eight weeks. And shesaid to me that even though that
is the most horrific thing you'dever think you'd have to do in
your life, it still was the timethat she had with him and the
things that they shared and theconversations they had, she
wouldn't change that. So that isso important to be able to
support and hold people in sothat they can deliver what they

(46:00):
want to do for that person thatthey love.

Claire (46:02):
How does it work with money? I know this is only going
to be for the for the UK, ormaybe only England, I don't know
how it works elsewhere. Is thissomething that is on the NHS are
their private options? Can youjust phone up and say I need to
come in what happens?

Maddy Bass (46:18):
So hospices are part NHS funded, so some get as
little as 5%. And some get asmuch as 50%. So it was local
arrangements that have been madehistorically. So at St. John's,
we get about 24%, from the NHS.
And we have to raise over 4million a year through
donations, grants trust funds,we've got 38 of us going off to

(46:39):
do a track in India, inNovember. So we're raising money
so that that will meet the costsof the trip, but also to give
some income to the hospital aswell. So last weekend, or I
think it might be this weekend,actually, we've got a colour
dash. So people run a 5k routethree mile route, and they get
paint thrown over them atdifferent points. So it's great
fun, kids love it, families loveit, all of that needs to happen

(47:02):
to raise money. So it is anuphill battle. And obviously, as
the cost of everything rises,the salaries go up. It's right
that we give our staff a payrise. You know, everyone needs
to live in cost of living hasgone up. But then we don't get
that from the NHS. Every time wegive a pay rise, we have to find
that pay rise for our staff.

(47:22):
Every time electricity goes up,we have to find that and we've
got an old building an oldbuildings costs don't know. So
we are looking to do arefurbishment. But that's not
quite in the cards to share,because that costs as well,

Claire (47:34):
Right. And then it's all free for the patients?

Maddy Bass (47:37):
It's free at the point of care for patients. So
we will always say if you ifpeople say I want to give a
donation then we won't ever sayno, please don't. We will just
say she's very welcome to give adonation, but we don't expect
it. We get a lot of donationsfrom families after people have
died saying thank you forlooking after them, which is
absolutely lovely. And a lot ofpeople then come back to
volunteer for us. So likeKatie's done because of her

(47:58):
experience. She's volunteered.
Now she's working for us andcase great. She's just brilliant
one have a great team of admincouldn't do without them. So
it's brilliant. Given that care,it comes round to help us. But
it's, yeah, it's hard work. It'shard work keeping us going.

Claire (48:14):
Is there a private sector for hospitals thing?

Maddy Bass (48:16):
No, not really. None of them are private. So we have
had people say, Well, I'll paybut actually, it's done
according to needs. So if peoplewant to come on the ward, we may
have a waiting list. We don't atthe moment, but two weeks ago,
we did have a waiting list. Andwe'll triage will look to see
who are the most importantpeople to come in. If they're in
the hospital, we know they're ina place of safety. If they're in
the community, we'll try andbuild in some extra support from

(48:39):
our community team, whetherthat's night sets or a bit of
day respite sitting with thenurses, so that they've got the
support, they need to stay athome until a bed can become
available. And sometimes theyjust say, actually, it's
alright, we're managing at home.
Now we've got that help we'llstay at home.

When Syd was first admitted to the hospice.
That was the first time I becameaware of the costs associated
because I sort of went intohospice and thought the same
thing I thought, hang on Dad, dowe have to, you know, do have to
pay for this? I don't know howthis works, because it's not a
hospital. So it's not NHS, it'snot free? Like how does this
work? So it wasn't until westarted asking the questions.

(49:16):
And I was absolutely bowled overby how much it costs to run a
hospice and how little they getfrom the government. And that
that was that was quite a shockto me. I still am astounded as
to how the hospices across thecountry continue to deliver the
level of care and service thatthey do. And the fact that that

(49:38):
is predominantly done byfundraising by the community is
just insane. I am stillvolunteering and I do still
volunteer and will continue todo so and especially now I know
that it saves the hospice abouta million pounds a year which is
just unbelievable to get yourhead around. It really is and
the people that I've met who'vebeen volunteering there for

(49:59):
20-30 years it's, it'sunbelievable. It's almost like
once you're in, you can neverleave. Because you just you, you
so it just becomes I don't know,I don't know how to explain it.
[laughs] It's not the beststrapline though is it?
No! [laughs]

Claire (50:13):
Once you're in, you never leave!

Maddy Bass (50:15):
Hotel California, you can check out, but you can
never leave. I think I think itjust, it just shows that people
are really strong supporters ofwhat we do here. And they really
believe in what we do and ascase if we can, but we couldn't
be without our volunteers.
They're absolutely amazing. Youknow, our bereavement
volunteers. They're trained tobe bereavement, you know, to do
talking therapies and listeningtherapies, I mean, to give up
your time to do that he'sabsolutely incredible. And we

(50:36):
could not be without them. AndI'll thank them all, you know,
whether they work in one of theshops, because our shops bring
in over a million pounds a year,you know, thank you to them,
whether they're working here onthe maintenance or out cutting
the grass, which is what Ineeded to shut the window, you
know, we couldn't manage withoutthem. They're absolutely
fantastic.

It's, it's this unbelievable,

Claire (50:55):
Hopefully, it'll be something that people you know,
cuz you walk past all thesecharity shops sometimes, and you
don't really look at whatthey're raising money for, you
can you can sort of refer tothem by the name almost, and not
really realise that, you know,it's a hospice, or it's this
charity or that charity. Sohopefully now when people see
hospice on the charity shop,they'll know where it's going
and support that in a in a moreencouraging way, knowing you

(51:17):
know, how important it is toraise that money? Have you found
that doing what like this hasactually helped you personally,
with your own grief and loss andhow you cope with it? Or, I
mean, you might be rubbish atdealing with it on your own
outside of this and brilliant atyour job? I don't know. But how
does it affect dealing with yourown grief and loss when you're
dealing with other people's allthe time,

I think it's massively helped me just
something that we haven't talkedabout in the way that it's
helped me is the reframing ofhow I thought about death. And
the fact that it's so close andsimilar to birth, just in
reverse. And having worked atthe hospice and being a part of
it for over well, two years nowI've been I've been part of the

(51:58):
hospice, my fear of death isvery, very low now. And that's,
that's huge. Because I thinkpeople spend their whole life
most people would say they arefearful of death. I wouldn't say
I'm not at all because it's amystery, isn't it? At the end of
the day, we don't know. But I'mfar, far less fearful than than
I was before. And the birthanalogy for me is what's what's

(52:21):
helped me a lot. And I was justsaying to Maddy the other day,
that a little fun fact for you,that the average weight of your
ashes after your death is almostthe same as the average weight
of the baby when they're born.
And that was just another nicelittle add to my little toolkit
of birth and allergies arounddeath. And I think that we

(52:42):
celebrate birth and we rejoicearound birth. And we should do
the same with death. Yes, it'ssad. Yes, we don't want that
person to leave. But there is alot to rejoice, I think that we
should celebrate that person andtheir life and what they stand
for, and not hide away. And Ithink ignore it. And we're
missing a huge opportunity tomake a difference to somebody's

(53:05):
life as they leave and enterwhatever the next chapter is for
them.

Maddy Bass (53:11):
Yeah, thanks, Kay. I think that's really, really well
put, I would say dealing withgrief as a professional is a lot
easier than dealing with itpersonally, I think it's given
me some skills to understandthat the responses you get a
normal, but it can be veryconfusing, and very, very
different for everybody. So myfather in law died. And then

(53:33):
three months later, one of mydogs died suddenly. And I'd say
probably, and don't anyone judgeme for this grieved more for my
dog than I did my father in law,because it was expected for my
father in law, I think probablyit was accumulation of grief.
But I wasn't in a good place forquite a few months. And I
couldn't get my head round. Ithought, What am I going on
about? And then I had to standback and say, Okay, if this was

(53:53):
one, if your friends or someoneyou were supporting
professionally, what would yousay? And so I've got those
skills to be able to say tomyself, right, stand back, what
do you think I had a friendwhose daughter died very
suddenly, very unexpectedly afew years ago. And I really
struggled to know how to dealwith that, because it wasn't a
professional situation. And itwasn't the situation I was used
to dealing with. So I think asyou get older, the more

(54:15):
experience I have, sometimes theeasier it's made it for me. And
the harder it's made in othersituations, just because she'd
become much more aware ofeveryone's loss being very
different. Everyone's griefbeing very different. And I'm
less likely to go in nowexpecting that I know how to
cope. I've been a nurse for 32years. You don't know what you
don't know when you start out.
But as I get older, and the moreexperienced I get, I think I

(54:36):
know a lot more about what Idon't know. And that makes me
much more cautious.

Claire (54:41):
Well, thank you so much for all of this and hopefully
it'll be really helpful becauselike I said, I don't know much
about the kind of hospice areathat's why I went and did work
experience in the film directorsbecause I don't know much about
what happens here. And a lot ofthese places are a little bit
hidden away and hospice isanother one that I have on my
list at some point I need to goand experience I think because
if you're talking to peopleabout death and dying, these

(55:01):
things come up a lot. They haveto deal with funeral directors,
they have to deal with hospices,they have to deal with
hospitals. And I just think themore I know around these areas,
I feel like the more informed myconversations can be, so it's on
my list.

Maddy Bass (55:11):
You'd be very welcome to come here, Claire. If
you're ever in this area, we'dlove to see you here. It'd be
great to meet you.

Yeah!

Claire (55:16):
That would be great.

Yeah, we'd love that.

Claire (55:19):
Brilliant. I will add that to my list.

Maddy Bass (55:20):
I'll buy you lunch.

Claire (55:21):
Oh, yes. I want the horse to be there with a horse
be there? Because I do I do likethe idea of the horse.

Maddy Bass (55:25):
I can't promise! We probably find some a dog
somewhere,

We'll get the therapy dog in.

Claire (55:28):
That would be good.
Yeah. But I love donkeys. So I'mpicturing like me in my hospice
bed with a donkey being allowedin through the window or
something.

Maddy Bass (55:35):
Absolutely!

Claire (55:36):
That would be great. But yeah, I think it's, you know,
it's important to know aboutthese areas. So I'm really
hoping this has really helpedpeople get an idea and dispel
fear as well. Because one thingabout these careers I want to
show people is you don't go intothis kind of career unless you
love doing this kind of work andhave a real heart and a passion
for people. It's just notsomething that people go into
for the money. So I want peopleto know that, you know, they

(55:56):
might look scary, it might feellike a scary concept. But the
people in there are the bestpeople because they have the
best conversations and thebiggest hearts quite often. So
I'm sure that's come across fromhow you do talk about it. And
we're talking about hospitals asa useful tool to help people
prepare in loss and grief. Sogoing into my metaphorical shed,
where I'm trying to build allthese tools to help people face
these things. If there was atool in there that represented a

(56:19):
hospice, helping towards the endof life, which the hospice as a
whole, what kind of tool wouldthat be for you?

Maddy Bass (56:25):
I'd say it's probably rope rope is very
versatile rope can hold peopletogether, it can hold them
apart, but together still intouch, but at a distance. I
think it can help people climbout of difficult situations, or
you can tie it around someone'swaist so that they might not
necessarily know that you'rethere. But you are the Latin

(56:45):
word polyene was the word thatthat formed palliative, and that
means to cloak so I thoughtabout dashi or a tarpaulin, but
it doesn't sound quite as niceas a rope. If you could get a
hug from a tool shed, that wouldbe what I'd want to give. It's
about just being there forpeople a soft touch or it's hard
touches it needs to be.

I'd say scaffolding, or hospice holds
that person and their familythrough what can be one of the
most difficult, most traumatic,most complex time of their
lives. And that scaffolding getsput up it holds that person
holds the family until such timethat we can start taking the
scaffolding down and they'reable to hold themselves.

Claire (57:26):
Rope and scaffolding.
Two things I don't already have.
And fortunately, after thearrival of the paint mixing
machine from a previous guest,I've already expanded my
metaphorical shed so I can fitit all in very easily. And I
haven't forgotten, but I haven'tgot around to it yet. I am going
to do an episode looking at allthese tools at some point, I
just need to find a shed I canrecord some good rooting around

(57:48):
audio in.
And if we do go and visit theselovely ladies, you'll definitely
be hearing an episode aboutthat. Just like when we did
funeral director experience,which you can hear in Episode
77, and my blog seeing my firstdead body.
If you want to find out moreabout today's guests and St
John's hospice, you can checkout the show notes where I'll
put links, and as always, if youwant to see their lovely faces,
pop over to our social media andyou'll see them on our episode

(58:10):
artwork.
Thank you so much for thisvaluable insight into hospice
life Maddy and Kay it reallymade me see hospices in a
different light. And I'm hopingit's done the same for you that
are listening today. And a shoutout to our newest venture at The
Silent Why - Herman. You can nowbuy and send physical Herman's
to people who are reallystruggling. These are small,
blue crocheted companions madeby yours truly and posted to you

(58:33):
or someone you love to let themknow that they're not alone.
They're actually the perfecthospice companion to so if you
know someone in a hospice arereceiving palliative care, why
not pop over towww.thehermancompany.com and
send them a Herman to show thatyou're thinking about them.
Thanks for listening to TheSilent Why podcast today. If
you've got a subject you'd likeme to chat to an expert on,
please get in touch via socialmedia or the website or via

(58:54):
email to thesilentwhy@gmail.com.
And let's chat...

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Episode Transcript

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.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}1. Stuff You Should Know

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Let's Chat... Life in a hospice (with Maddy Bass & Kay Backhouse)

1. Stuff You Should Know