Uncoordinated
Complaints
NHS equality award
Trust wide, centralised service

Background

Views of staff
Views of bereaved relatives
Views of community groups / religious leaders
Review of literature

Hospice / palliative care settings
Terminally ill / cancer patients

Majority of deaths in acute hospitals
From deaths other than cancer
Multi faith Multi cultural perspectives

Parkes, Laungani (1997), Neuberger (1994)
Golsworthy (2005), Gatrad, (2002), Katz (1996)…

No. of deaths per religion within the hospital

Aims of Study:

1.To explore the Abrahamic faith (Christian, Jewish and Islamic) perspectives of dying and death to gain an understanding of end of life requirements and their significance within the bereavement experience.

2.To uncover the ‘lived experience’ of bereavement following the death of a person in an acute hospital setting from the perspective of :

the bereaved,
doctors,
nurses
and religious leaders.

What are the Abrahamic faiths?

	Christianity Judaism Islam

Phenomenology

... (an attempt to) understand life as humans live it; to find meaning in it as we struggle to understand things that can seem to be beyond human comprehension.
Lawler 1998

Time
Space
Body
Relationships

'to weave one’s phenomenological description against the existential themes of temporality (lived time), Spatiality (lived space), corporeality (lived body) and communality (lived relationship to others)’

(van Manen 1984)

Design

Bereaved relatives:

Jewish = 6 (3 male 3 female)
Muslim = 6 ( 4 male 2 female)
Christian = 6 (2 male 4 female)

Participants

Doctors = 6 (4 male 2 female)
Nurses = 8 (8 female)

Non faith specific

Participants

Religious leaders:
Jewish = 2 (2 male)
Muslim = 2 (1 male 1 female)
Christian 5 ( 5 male)

Interviews

Semi structured interviews

Variety of settings
Relatives ‘flowed’
Staff – ‘direction’

Qualitative content analysis

Time

A time to live: the person as an individual:

‘She was so extrovert, she loved like dancing’(J4)

‘She was a very orthodox lady; she’d been a member of this one, synagogue ever since she got married and came to Birmingham – bout 70 years or so?’(J1)

‘…... my mom was um, a very strong person, she didn’t give in easily’ (C5)

Time

A time to die: ‘right time’,

I'm a great believer, in when you are born you are given a date. You are born on that date, and when you die you are also given a date, and you die on that date.(C1)

... you know, when your number’s up your number’s up, basically she’d just reached ‘the’ time’ (J3)

Time

'I remember when he finally did pass away, and it was devastating for his young son, but he sort of said well it was God’s decision and it’s in his hands and it was his time.’ (D6)

... extreme cases where when actually health care can help them and they sometimes just say “they are old, it is God’s will” when actually they could do something about it’. (D1)

Time

Exact time of death:

To me she was still breathing and I said to him she is still breathing and he said no it’s only the ventilator, but she was still breathing…by switching the ventilator off…yes, just by switching it off you have said okay I have killed her basically, I have stopped that life and you cannot do that…. (M6)

... you can’t say brainstem death equals natural death, these are our ways of allowing us to do transplants, we make up these definitions. You know, three hundred years ago when they couldn’t feel your breath wasn’t it that you were dead, then it was no heart sounds, now we are into brainstem, I say they are more for our protection…Or vindicates what we are going to do’ (RL2c)

Time

Time for goodbyes v race against time:

‘The nurse said ‘take your time, in your own time, you don’t have to leave yet’, and that was so important’ (C5)

the person died fairly early in the morning and the funeral took place at seven o’clock that evening, so that was really quick’ (J3)

‘…we’ve had cases with people passing away in the morning and if it is a straightforward death and there are no complications we have a funeral done in the evening or afternoon’. (M5)

Space

Safe v unsafe:

"what's it like in the morgue   "are they going to be warm enough”  "they didn’t like the cold” (N2) 

Somebody died in hospital. They want to remove the body as quickly as possible to an Islamic environment ..in a mosque, every second somebody is reading Qu’ran, saying Qu’ran, spiritually it feels good…..yes good angels always around there*…..if you left it in a mortuary, there’s nobody reading’. (RL4)

Space

Place of death: Home v hospital:

C had passed away on the Wednesday as I had taken him home on the Monday, and he knew he was home so he let go in effect’, (C4)

…..the doctor said you can go home – but she said “no – I’d rather be here….. I think she didn’t want to leave a memory of her being dead in that house (N2)

Space

Privacy and dignity

‘….that was very important to me that I could actually be somewhere private with my mom um, for the time that she had left…… (C5)

I really liked it (being given a side room) …. because some people are crying although we know that we should’nt do it – you know the other patient(s) they have, you know, disturb (that their crying may disturb others)’. (M2)

Body

Privacy and dignity:

'And the body has got to be handled very carefully because, at the end of the day, it is a body, you know, its ‘somebody’ (M1)

‘ The fear factor sets in you and I think that’s really, really sad (because you are) frightened of doing the wrong thing religiously for them’ (N2)

Body

Presence:

... I was holding her hand, stroking her hand and just talking very quietly to her and very soothingly you know, and saying ‘It’s alright, you don’t need to worry about anything at all (C5)

"See if you don’t read the Shahada on dying then there is no room for you in Heaven…, the people around them – if they can actually say it (Shahada) loud so the person who is dying can actually hear it – and try to say it with them – then that’s a good thing’ .(M2)

Body: Islamic perspective

Last care: Last offices:

'When a Muslim person dies …. we have to have the body facing towards Mecca ….. the body has got to be cleaned, ….the body has to be buried as soon as possible…there are various stages to this which have got to be followed very strictly’. (M1)

The Prophet, says three things must be done as quickly as possible. First of all praying the Zana Zat prayer and the organising the funeral is one of this…. finish his funeral arrangements as quickly as possible is one of the sayings of our prophet (M4)

Body: Islamic perspective

'(burial) shouldn’t be more than twenty four hours, … your soul is still … apprehensive about the questioning it is like being tested and you don’t know when the exam is, and you want to get on with it….., putting in the fridge in three or four days this is something which is not acceptable. (D5)

‘….at the time of death the soul does leave the body,. When you bury the body the soul comes back and that’s when it’s questioned.. ‘Who is your God, what religion are you, who is your Prophet?’ those three questions are asked by two angels’ (M6)

'I know Muslims are not supposed to overtly express their grief for more than 72 hours, 3 days, I don’t know if you knew that, but that’s a fact. (D2M)

'Because I think we have this sort of 40 day thing whereby all the community members come along most of the days until 40 days’ (M 4)

Body: Jewish perspective

Last care: Last offices:

…they took the body into a private room … and left it there undisturbed which was good. They merely covered the body with a sheet, Chevra Keddisha, the burial society came to take it away’ (J6)

'the Chevra Kaddisha come in because they are involved with the preparation of the body, um, for …Family are not allowed to be part of that.. (RL8)

Body: Jewish perspective

... we know that you must bury the body as soon as possible, that’s from where it says in the Torah the criminal is put to death, you do not leave the body overnight, the criminal is done that way so God says it should be done for everybody else’(RL9)

but in the Holy land temperatures can rise to forty degrees and it ain’t nice having dead bodies hanging around’ (J6)

bereavement is taken very seriously in the Jewish religion…..we have the process of shiver which is sitting for seven days at which time, during which time, um, it’s effectively open house, it’s not a wake, it’s not a party (J6)


... all the mirrors …had to be covered so you don’t think about yourself. Somebody comes and cuts …(laughing) you usually wear something old. They cut it, on the left side ( (J1)

'30 days for if you lose a partner – a husband or a wife cos you can re marry; but if you lose a parent … you can’t replace a parent* so it’s a years mourning’. (J1)

Body : nurse’s perspective

Last care: Last offices: :

I’ll say “I’m just going to roll you” and some people will go “what are you doing”, but to me it’s for my sake and their respect and their dignity (N2)

'I always remember working with her (a colleague) and we’d laid a body out and she opened a window and …said ‘because you have to let the soul go’ ….and that’s what she believes in, what a nice way to think about things’. (N5)

Body: Nurse’s perspective

‘you just feel it and you haven’t had time to say your goodbyes because usually……. we say our goodbyes, that‘s taken away from you as a Nurse which is very – (distressing). It’s like closing the door dead quick and washing their hands of them, and to me that’s more for the family than the deceased because if they were like that in life, surely you want to give that care’ (N2)

"I only had two days bereavement leave. and it’s not long enough. I had the day after she died and the day off for the funeral and in between I went to work. And to get the day off after her funeral I had to take it out of my holiday…I had no immediate extended family, I’m divorced I don’t have a husband or a partner, I have no brothers or sisters, I’m an only child, I really could have done with a bit longer (C5)

Relationships

Continuing bonds: A general sense of the deceased:

"We went to a pantomime a couple of weeks ago, now that’s something Mom always organised, …and our babby said ‘We better move up and leave Nan a seat’ (C2)

"(I) talk to him when things are going wrong’ (C4)

Relationships

Mental interaction:

' ... and I talk to her as well…especially having E (baby daughter) coz obviously she didn’t see E So, ..(getting upset) that’s hard’. (C2).

(I) talk to him when things are going wrong’ (C4)

Relationships

Symbolic representation:

‘I try to do things that I think C would have wanted me to do. Rightly or wrongly I know he is motivating me….. you see so somewhere I am still wanting to please him’ .(C4)

Relationships

Prayers: Islamic perspective

It is mentioned in our Islamic traditions. That once somebody passed away anybody pray for them would get to them’ (RL4)

"But people can pray for others who have passed away …… it can be … it’s like light comes into their grave, like a relief for them (M4)

Relationships

Prayers: Jewish perspective

'One of the reasons why we say the kaddish prayer, is that kaddish guards, the soul of the deceased from any of the more negative ways of being cleansed (in purgatory), for an hour and a half. And that’s why there are sixteen kaddish prayers said a day … which gives you twenty four hour protection. so, the family down here are still helping the soul on its journey …’ (RL8)

Relationships

Prayers: Christian perspective:

' a life in which I think um they are aware of us on earth so there is still a linkage I say you pray for each other, the one who is living, the one who has died’. (RL3)

And there is that theology that we see ourselves linked with the dead, sort of …at a communion with the dead…That the dead pray for us and we pray for them’ (RL6)

Relationships

Impact: Doctors and Nurses

'I've been reduced to tears ––I don’t think it’s anything bad in showing an emotion like that’. (N5)

as a medic, you do tend to disassociate your emotion from the patients otherwise you just would not be able to do the job’ (D1)

you get to know somebody and then you are there in the middle of the night trying to keep them breathing and then they die. Its awful, but you sort of toughen up a bit’ (D6)

Relationships:

Community/religious Support: Jewish :

Jews have no fear of talking to people who have suffered a loss … whereas non-Jews quite often, I’ve heard it said that non-Jews will avoid seeing people who have had a bereavement because they don’t know how to deal with it’ (J6)

'When my father died I thought ‘God, the thought of having people round, coming in and looking at you and talking to you. But by golly its fantastic. I never believed it could be so powerful it sort of sort of brings you back to normality’ (J1)

Relationships

Community / religious support: Muslim perspective

'the community members are expected to embrace family and say some words of condolences, kind words to them and try and get them to get to terms with the loss’ (M1)

'In the community they all rush to your house, to give you support and comfort. So as soon as that happened in the morning we had a whole houseful basically, of people trying to support us,…..it’s a good thing and a bad thing as well. It’s a good thing, yes you have got the community to help you and everything, but again you haven’t got that breathing space for you to breathe in peace. You have got everybody surrounding you’(M6)

Relationships

Community / religious support: Christian perspective

'Oh no, they kept away, the neighbours were brilliant up until about a week after the funeral. I don’t see many of them these days …I think they are frightened of upsetting me, I don’t know why’ (C1).

'C had passed away on the Wednesday as I had taken him home on the Monday, but the community nurse came in on the Friday to see how I felt. …Well, at that stage how did I know how I felt, less than forty eight hours? If she had come three weeks down the line then I would have appreciated that’(C4)

Relationships: formal support / counselling

... perhaps one in a hundred may actually need counselling. But all of the rest of them need support’ (RL1)

see we have realised that there is a need for something like that (counselling)…. …there was nothing about cultural awareness or language (M6)

Considerations

Time
Space
Body
Relationships

‘How people die remains in the memory of those who live on’

Dame Cicely Saunders

Considerations

DH ‘When a Patient Dies’
Darzi review
End of life care strategy
Gold standard framework
LCP / SCP

Thank you for your time