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A Hospice Nurse on the Dying Process (The Mary Hanson Show)

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hello and welcome we're going to be

talking tonight about what you might

call a heavy topic we're going to be

talking about death and dying

but more specifically about how family

members and loved ones can communicate

more lovingly and more effectively with

the person who is dying with me is

Sheila duddy and she has come to me with

high recommendation as someone who

understands this process she is a

hospice nurse educator with Elena she's

worked there 10 years you told me and

you've worked there in several

capacities but as an educator the last

few years yes I started off as a mix of

a casual nurse going out to seeing

families and the patients and and in

addition and teaching education during

orientation then I just did for a couple

years hospice admissions and now I'm

doing hospice education um interested me

enough she has also worked her first

part of her career with children and

babies and and pregnant mothers and so

she says she's working or has worked

from womb to tomb it's a catchy catchy

wait to remember that well a lot of

people who I bet you me this is a guess

but I bet they say well isn't it

depressing working with people who are

dying what do you say to that well I say

it's a truly an honor and a privilege to

be able to work with patients and

families at this stage of life I felt

the same way when I was working

obstetric s-- welcoming people into the

world and in this stage it's about

family it's about transition and we're

saying goodbye to somebody in

world and in one of your your written

correspondence to me um you said

something about helping people live well

and die well mm-hmm and I kind of stuck

by that because there are times when

people don't die well right there there

are times when people don't die well

with with I think the help of hospice

people can certainly do much

reconciliation with their lives and when

it comes to those final stages being

able to say I love you being able to ask

for forgiveness and to forgive to have

found gratitude in life and a legacy

well well lived and then to be able to

say goodbye and and let go of this world

that leads to an acceptance and a

passing that can be quite peaceful so in

hospice we consider this living well you

can't be alive and dead at the same time

so so so we're looking at quality of

life and comfort and given the

circumstances where people are very sick

it's still possible to have that and

those are the things that we strive for

when you say reconciliation that's a big

word and and wondering have you seen a

lot of people who are in the dying

process be able to have that experience

with a loved one or someone that they've

been in relationship with yeah and that

takes process and time and I think one

of the things that is more difficult I

would say in our cultures that we don't

necessarily accept death and if we don't

accept it or we're denying that this is

happening then you don't get to

reconcile why would you need to

reconcile if nothing's going on

so that's one of those things that that

happens sometimes at the very end when

people really are are pulled into the

whole experience and recognize that

there is not tomorrow there's not going

to be another time to do this right and

and you live with this for the rest of

your life knowing that you were able to

tell that person that you loved them and

that you were grateful and that you've

you found forgiveness as a hospice nurse

maybe not as an educator because you're

not maybe working as directly with the

families but as a nurse would you help

facilitate that kind of big discussion

well the yes and as part of a beautiful

multidisciplinary team therein lies the

beauty of hospice that Hospice isn't

just about a nurse and a doctor but it's

also about spiritual the spiritual care

so we have spiritual support

some are chaplains we try to represent

to all denominations and no

denominations so everybody is equal at

the table we have music and massage for

for patients volunteers come in to to do

so we're looking at a whole person and

each person engages with that patient

and family in a different way and pulls

out different stories of what's

important to them and when we find out

what's really important to them then we

try to find that reconciliation I

thought maybe the chaplain that would

find that out it might be volunteer

right might be the music therapist a

home health aide

so so each one of us is trained in terms

of really listening I think the greatest

gift that we can provide is truly to

listen to what that person is saying and

what their needs are not necessarily

imposing our stuff on them but maybe

there's a daughter that has been

disenfranchised from the family and

there there can be some reconciliation

at the end we get people out of prison

to come see grandma before she passes

we've brought soldiers back from

Afghanistan to see their mom these are

these are really important times and

even the hospice I'm sorry jumping in

here but can the hospice staff make that

happen make it more likely to happen or

does it have to start with the family

making all the arrangements that's safe

for a prison someone in prison to be

released to say goodbye or a soldier we

all work together so with the fight with

the family support where we have the

free time we have the time that we can

go and start to work the system which is

kind of what what you have to do so with

the family support knowing what's going

on then we do our very best so this is

where our social workers and whatever

power we need to use to make this happen

I think when you say to some to the army

or whatever this is the last chance

they're going to do everything that they

can to bring you found that to be true

oh yeah that's good to hear yeah you

know we do hear some stories on the news

about things like that but not real

often yes I didn't know you know perhaps

it's going on way more than I realized

yes I don't have any numbers per se on

that but whatever we can do to to to

make that person happy you know you know

so I think a lot of people look at

this is being very sad and depressing

that's how you started with your

question and I always say I love it it's

an honor I have these are my teachers

mmm I have learned so much I can bring

some things to the table but I have

learned so much more from these patients

and and families about what is important

in life and living our lives to the

fullest and not assuming do you feel

like you accept your personal leaving of

this earth more because of this work I

do I think I do and so maybe I haven't

gotten any diagnosis yet so you know

there's always that but all my life I've

been preparing for this my best friend

in second grade died of a brain tumor

and that was very very devastating to me

I used to go ride my bicycle 11-year old

girls yeah why my bicycle to to her

house during the summer what I would say

was very fortunate for me and I you know

in in second grade I was at Catholic

school the nuns walked us through the

whole what death was and of course in a

religious context but they took us over

the funeral parlor was across the street

she was in her confirmation gown or

First Communion gown and so they had us

participate in that it wasn't that they

pushed us away that didn't happen or we

didn't talk about it so that is a great

lesson I think that took me through all

of my my life in terms of what is this

death and how do I live my life knowing

that at some point I will pass I just

want to go back to your statement that

in our country we are perhaps to nine

death more than and here's my question

more than most countries more than

some countries what would you say Shira

well can you just package Western

civilization perhaps in that and so I

can only really speak for for this

country but yes we have focused a lot on

youth and we don't like to see things

that don't are broken as it were it's

it's I I guess what I just want to sort

of simply say is we we don't see the

full lifecycle we're kind of pushing the

death piece away and in that we don't

see very many older people I think out

in the community as much as you used to

everybody seems to be in assisted

livings or nursing homes I grew up in a

small town there were elderly people all

over the place I used to go to the

farmers market they were downtown so

here in our world we don't necessarily

see how people age and and pass do you

feel she led that when people have some

time before they died knowing they're

going to die maybe a terminal

you know diagnosis do they start

accepting dying more as time goes on oh

boy

well you know everyone's an individual

and I think to the point where a person

comes to an acceptance it's a lot based

on the kind of work or thoughts they've

done before either in a religious

context in terms of their church

teachings and things like that and and I

think once somebody gets close and

usually somebody doesn't even look like

they're dying until about three weeks or

so before they actually pass I've not

come across too many statistics in terms

of like the percentage of people that

ultimately do accept

the the meaning of death meaning of life

and and come to that I think when a

person so we've had people in hospice

the eligibility is six months but so you

know if you continue to decline then you

get another six months so we've had

people in hospice for a couple of years

and and for those people I think they

get to know there there is a gradual

acceptance they're supported by a whole

as I we talked about before a

multidisciplinary team so you have lots

of different ways that that that were

approaching that and we're listening and

and supporting the family and I think

given that supportive contexts and

acceptance by a group of people then it

makes it easier for that person in that

family to come to that acceptance

because they have the support they have

somebody they can talk to there's that's

the beauty of the the the end of the

journey support I read in the papers

sometimes she died or he died a peaceful

death and when we were thinking about

doing this interview I started thinking

now what does that mean what does it

mean to you because it's really stated

quite often yeah and I I guess I I'm not

sure what that would mean for a person

yeah a peaceful death is a death where

one the whatever medical the pain and

symptoms are managed they're managed so

that the person can then engage with the

experience and then do the

reconciliation that we talked about

before when the family feels that

they're able to express their fears

their worries and their concerns and

that they have a place that they can

express that where they can learn to

ultimately let go in with a supportive

group then that does lead to a more

peaceful now you're seeing when they do

you mean the person

and the family or yeah oh so those are

the key elements or but it can sometimes

just be the person dying accepts that he

or she is dying the family maybe doesn't

right that can be that's that can be

very true or if you have a large family

some do some are on all extremes and and

actually can lead to some family discord

after that person finally does die

because then there's blame or before

they die too late well there's that you

know that - yeah someone doesn't think

mother needs to go to a nursing home or

a hospital right someone else in the

family you know does etc right and so so

I love family conferences I love for the

whole and nowadays you can bring in

Skype and you can we have smartphones so

there's not the disenfranchised child

left out of things everybody can can

hear but it's the person that has the

disease that gets to call the shots as

long as they can call the shots but it's

important for them to let their family

know what is important to them what's

really important to me now what are my

values one of my beliefs and how do I

need to be supportive where do I want to

die in the hospital in a hospice setting

in my own apartment

etc right right and most people want to

die in their home you know your sir your

home you create your whole lifetime and

pictures of your vacation and all the

little tchotchkes that you've collected

the memories or surroundings you're

there so as much as we can

even if somebody's seriously ill in the

hospital and but they do want to go home

we're going to try everything that we

can

what's happening nowadays a lot of

families are you know working and so

it's hard to to be at home you still

need a caregiver with hospice you know

we come in but we don't move in to the

house you're come

so coming for a visit were supplementing

we're training were supporting were

guiding so the family might need home

health aide or nurse there all the time

if they can be some some families would

have to supplement with that and there

are organizations like in kindergarten

we work with everybody we like to get

along with everybody and and what is

most important in this experience is

that person and their family to make

sure that they have what it is that they

need

I remember once talking with up a man I

didn't know him well but he said to me

marry my family just does not want to

talk with me at all about my dying but

he said I know I am and he said it

really makes me feel lonely and isolated

and I thought that was so interesting

that he said it out loud and so helpful

in a way to know that that he was

feeling that way but is that common that

the person dying is ahead in the process

of acceptance yeah ahead of the family

yeah when you read the writings of Dame

Cicely Saunders or I should call her

Dame doctor Cicely Saunders she's the

founder of Hospice she put the whole

system she learned from the dying

because she sat and listened to

thousands and thousands of people talk

about what it was that they needed

kubler-ross did the same thing primarily

with children but both of them all said

the person that was dying knew they were

dying about six months before they

actually passed but they didn't want to

upset the family they didn't want to you

know they were going to wait until the

doctor said something or you know but

they all kind of had this underlying

feeling that this this was this was the

time what do you think it is that's

telling them that I I don't know I try I

did this with my my mom

she and I had a I was the youngest of

five and she was 83 and I you know we

would talk about these kind of things

and so when I would talk to her I'm like

is it time just no no no no no no so

I'll never forget it I was at the State

Fair and my sister called me and said

you know mom's at home and she hadn't

been eating and and not doing very well

that they were gonna have to take her

and I'm like put her on the phone and I

said mom is this it and she said yeah

and she died three months later so she

knew though she knew yeah so I just what

I always looked about birth and death

there's a mystery and I I'm humbled or I

think we're all humble before it and why

people I think fear death so much is

that there's this loss of control and I

think one of the things that fears the

unknown oh the fear of the unknown going

back to this abandonment and isolation

and loneliness and when you don't talk

to somebody or you try to - oh I don't

want to upset I just want to go there

and you're pretending that everything's

okay but you're really taking away

something that is so unique for them

something that they need to be able to

talk and so maybe all you need to do is

listen but don't if you shut them down I

think that's that's a terrible tragedy

so listen even if you don't agree with

the person and don't believe them

perhaps just still let them talk well

it's sort of like being learning to be

comfortable with being uncomfortable

that's a good way to so sometimes you

don't know what to say and sometimes

there's not much to say but you know

there-there's a skill in terms of being

able to listen to somebody and

and just your presence says a whole lot

there's a lot of country showing up yeah

a lot of the friends go who he thought

were all your connections are starting

to just slowly disappear I think the the

two people that I always think about

that I think did fairly well John McCain

he brought everybody in and and it was

all about telling stories and being with

him and saying goodbye and all of those

things i think steve job just kind of

did the same thing towards he at the end

to some models for us yes that that you

need to be able to have these

connections and reconnections at the end

what was my life how did i influence you

how did you influence me i want to be

able to say thank you to people too yes

so it's wonderful

so sometimes we think like death and

dying is is so very negative and tragic

and and yes that's a terrible great loss

but in that experience in that last tail

end of this journey is a richness that

you're not going to get anywhere and and

not to pass that up you don't have the

time I don't have tomorrow so that's

part of a good death and as yes some of

the things to look for that are perhaps

more physical at the very end I know you

speak about delirium and about seeing

sometimes seen other people who have

died in your family right I'm Brian you

speak a little bit about those kind of

experiences yes so I actually did a

presentation for the state for this

deathbed visions and dreams and so the

important piece is to know that towards

the end there is elements of delirium

which is which needs to be dealt with

and needs to be identified but that's

very different than seeing your mother

or seeing your husband or your favorite

pet before you go

so it's

Mystikal II only about 10% of people are

actually conscious towards the end in

those last moments but of those 10% 60

up to 60 percent of them are having

visions and dreams of experiences and

people and what it is is those people on

the other side say I'm okay so that

would be like reassuring crowded the

dying person right um and do you really

believe she led that it's not just

wishful thinking do you believe that

they really are in communication in some

way I do I do

now they are doing research in this up

in in Buffalo doctor I think his name is

Christopher Kerr keer are and what

they're saying is that they've looked or

they're working with the nurses and the

families and and actually listening to

the patients again asking are you having

any dreams or visions and what they're

finding is that and say the last 30 days

the more frequent that they start to

have the dreams and visions 89% of those

people that have those visions and

dreams go on to have what's identified

by everyone a very peaceful and

beautiful down because it comes to

accept and it's because so they relax

into it kind of well if I saw my mom on

the other side to I go and she's okay

I'm like okay because I got a sick body

on this end this is the body is what I

have to let go of but somewhere there's

the spirit and there's something else

that that seems to go on but that's

that's encouraging isn't that

encouraging um we've just got a minute

left or so but just in a tight sentence

can you tell me how do you define

delirium then you said it's very

different and what you're talking about

now the delirium is a more acute abrupt

agitated state they are confused they

are not useful this is not a peaceful

state this is very upsetting to the

person and for anybody watching that

and that's a common as far as numbers go

it's there and and people sometimes will

have just our general restlessness or

picking they'll pick it and throw covers

off and things like that sometimes if

there's a restlessness and a disturbance

there might be a spiritual peace or

something that's left undone which is

why I always go back to how the

conversations when you can have the

conversations and and so sometimes you

know there there's we bring in spiritual

care towards towards the very end to see

if that is not it with the dreams and

visions I can stop you know in the midst

and return to you and let you know that

my mother's there and everything's fine

and I'm not upset well this is

fascinating and we should more time

quickly can you give us your website for

Elena hospice center and also the best

phone number

okay reach reach you or someone in the

department so Elena health.org and then

you put in the search engine hospice and

that will bring you up and you can see

all the wonderful services that we have

the phone number is six five one six

three five nine one seven three and you

can talk to somebody about a referral

thank you so much Sheila this has been

important good information and we don't

talk enough about this in general do we

thank you for sticking with us and that

you've been interested like I have been

learning from Sheila have a good week

and I will see you hopefully next week

bye bye

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