What to Say to Someone Who is Dying – a New Perspective from the Founder of Death Cafe

hi everyone

this is Margaret Manning the 16 May this

is the place for women over 60 come to

be inspired my guest today is John

Underwood John is an entrepreneur a

businessman who lives in London UK and

he has started a movement that I found

most fascinating and want to share with

you a few years ago John found is

something called deaf cafes and these

deaf cafes are events where you can meet

with other people to talk about death

and dying and there's a lot of

interesting conversations that come up

in those meetings and highlight one of

the challenges in our society about the

taboo around talking about death

so welcome John hi it's great to have

you here thank you John I really had a

great time talking with you we recorded

some other videos today about death cafe

what they are how to join the movement

how to participate but as I said I think

it's kind of you what you're doing is

wonderful thank you thank you and I

think that was wonderful too is the way

it's come it's brought the conversation

about dying into the open and and I

think a lot of people who have are going

through the experience of an elderly

parent or someone in their family who is

not well and you know how to talk to

those people about dying how to be

constructive in the conversation so I'd

love to get your thoughts on this I mean

what would be your advice to someone who

is going through a situation with a

family member or a friend yeah I think

it's very difficult and you know this is

something that a lot of us have had to

deal with and you know we're not really

set up to deal with it because death is

kind of hidden away a hidden phenomenon

and you know there's a lot of fear

associated with it so you know that that

makes it challenging in a lot of cases

to kind of be with someone who's dying

especially someone's close that's close

to us and I've I think the the number

one thing is to

is just about presents you know just

allowing your self to be there and to be

with them not coming with a very sort of

strong agenda of needing them to say

something or needing them to be a

certain way but to be open to the

situation as much as possible

which can be extremely difficult if it's

exceptionally painful just but as much

as possible bringing in oneself and

being open to this situation and just

being willing to sit there with that

person who's dying and and I think in my

experience dying people can could have

sense that openness and there's now and

and they can open up themselves young

sorry look know is this gonna say that I

think it actually starts with the

medical profession because years ago I

think I mentioned I work with Elisabeth

kubler-ross who is an author of a book

on on death and dying and she I remember

her telling me that you know when she

went into the hospitals to talk to dying

patients for her book the doctor said no

we have no dying patients here and you

know that nurses and doctors became her

primary audience for trying to get them

to talk to their patients openly do you

find that's true no absolutely I do and

you know we thanks to the work of

Elisabeth kubler-ross and assisted lead

Saunders and certain others we've got

palliative care now the modern hospice

movement which you know it's more

accepting around death and dying but the

interface between kind of mainstream

curative medicine and palliative

medicine is extremely poor in a lot of

phases and sixty percent of us in the UK

died in hospital is not where we want to

die but that is where we die and the

doctors who are treating us don't

necessarily make the switch between

working to keep us alive and helping us

die very well yes and so that can create

a very

challenging context to kind of have

these conversations and if if it can

lead to the person who's dying not

knowing that they're dying not ever

being told and sort of make it more

difficult for them to be open about

their own feelings for risk of upsetting

people for all sorts of other reasons so

that kind of context is very challenging

yeah I think doctors and family are

always trying to be a bit heroic you

know they want to try to keep everyone

alive till the very last minute and do

everything they possibly can and keep

doing the treatments and it doesn't give

a dying patient the opportunity to come

to grips and another thing that

Elizabeth used to talk about a lot was

this concept of unfinished business that

dying with awareness you know gives you

the chance to actually finish business

make that phone call you know send that

email write that note yeah no absolutely

I mean and being with someone who's

dying we can play a sort of crucial role

in facilitating that you know if if if

we're aware that the person who's dying

wants to do something then we can be

really crucial in kind of helping them

to achieve their wishes but sometimes

that can be clouded by our own feelings

especially if you know the person who's

dying someone who we've had a difficult

relationship with in the past and if the

things that they're wanting to do in

terms of unfinished business aren't the

things that we think they should be

doing in terms of unfinished business so

I mean if someone's dying who's close to

you you need to kind of prepare for your

own stuff to come up your own things

about that relationship to come up and

those things not necessarily to be taken

care of by in the company by the same

process by the person who's dying so you

kind of need to arrange some self care

you know people you can talk to who are

safe in terms of being outside the

situation who will just listen to you

and support you and

recognize that emotional toll that this

will take on oneself and you know engage

in practices or self-love and chewing

and remembering your value because all

of these things can be eroded by being

present with someone who's dying it's

it's really a yoke you said it's very

very challenging though because I mean

the relationships are complex in life

but when you get pro qing death you've

got this um magnifies it's like a

magnifying glass on on everything I know

that with children one thing that has

been used as drawings yeah you know

where and using other ways to sort of

get a person to talk about their

vulnerability or their fear of death and

you know and then so come out come in

other words come at it kind of at an

angle like don't just say well are you

aware that you're dying and you know

just to say you know how are you feeling

today can you draw me a picture tell me

how you're feeling and then you'll see

the little kid holding a stop sign you

know saying stop yeah and then you know

there's a you know story there yeah no

absolutely it's about giving the

opportunity for people to say things

that they might need to say but you

can't really be attached to it because

some people they don't want to and they

never want to admit they're dying and

you know death happens anyway it's not a

prerequisite and we can't afford to make

it so we can't and well if we go into a

situation like this with a lot of

expectations and wishes our needs then

we're kind of setting ourselves up for


um really I think you know even if the

person you're dying who's dying is very

close to one it's important to remember

that ultimately is it's their show you

know it's it's it's it's down to them

it's about them and we need to kind of

be there and an unpleasant unsupportive

for that as much as we can I mean

obviously there are certain situations

which are very difficult indeed and we

need to kind of even absent ourselves

from them in turn to look after

ourselves but otherwise we kind of need

to be there and and roll with the

program is going to require

depths of your resources all your

flexibility all your presence all your

love all your care and you know even

though Asante sad that someone's dying

there can be incredible upsides in terms

of great healing great beauty enormous

transformation and ironically and the

death of someone can be one of the most

beautiful transcendent experiences in in

life yes and I think that if you know if

you're honest with the person at the

very beginning when they've got some

clarity you then don't have to lie so

for example the common thing to say is

it's okay you know you're gonna be

you're gonna be better like in six weeks

we're gonna go and holiday we'll take

that vacation and you know it's never

going to happen you know instead saying

something like oh my gosh do you

remember that amazing trip that we took

to you know wherever to Italy together

and have a look at in nostalgia you know

being the source of energy and power

yeah yeah no absolutely creativity and

open some flexibility they're all

essential qualities and you know so many

people have these qualities in spades

you know they can really apply them and

and you just need to kind of bring your

a-game be very flexible roll with the

program and look after yourself through

the process as well don't give

everything and neglect to look after

yourself because that can be I can lead

to a lot of problems well I think this

is really great advice I mean I I know

that some people may have mixed feelings

about about how to deal with a loss like

this and the death care phase I presume

are for people who have maybe lost

someone and you know want to talk about

something that they regret doing or they

wish they had done and maybe that comes

up a lot in your death cafe

conversations ya know certainly it does

I mean it's really aimed at people who

are going through an intense bereavement

process or who aren't kind of dealing

with raw reality of death because it's a

discussion format and it's kind of

two-hour session or sometimes even less

and if you've got if there's a lot going

on around death for you then maybe you

need something

a bit more individual and a bit more

ongoing but death copy can help unless

and potentially that's what it's there


do you want to talk about that if you

want to hear other perspectives if you

want to air stuff out then that's a

great place to go and also on your

website I know that there's lots of

information and you have a you have a

blog don't you as well yeah there's a

blog on there lots of resources there's

art videos write-ups of deaf cafes and

listings of death cafes as well I think

the whole thing from my understanding a

little you know that I've reached today

talking to you is that it's a place

where death is being demystified where

you just get to be real and human with

others that are wanting to be there too

and to hold you up together hold each

other up yeah that's great well I really

wish you all the success I know that you

have a campaign going on right now in

London you try to open a real cafe a

physical shop and do you want to tell us

a bit about it's a Kickstarter

self-funded yeah that's right it's so we

think you know deaf cafes I've shown

there's an awful lot of people who want

to talk about deaf at some point and

there's an awful lot of good work around

death both deaf cafes as they stand but

also around arts films music poetry more

practical things filling in wills

advance decisions more philosophical

things and the Deaf Cafe London would be

a place to host all this kind of work

you'd be a coffee shop open to the

general public but specifically to

facilitate engagement with death and

we're trying to fund it by the sale of

community shares so it'd be a

not-for-profit venture it be owned and

run by the community but the cost of

getting something off the grounds like

this in London is extremely high so

maybe it's gonna take us a good while to

get there but this is what we're focused


well benefactors out there who are

looking for a great cause to support

this is one for sure

thank you John I really appreciate it

we'll put the details by the way in the

article that will accompany this video

so that people can follow up if they

like and they can just go to your

website to death cafe comm and get all

them all the details it's all that yeah

thank you so much John for being here

today really appreciate it thank you