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Experience of the moment of death at home

S. M. DONNELLY, N. MICHAEL, & C. DONNELLYMilford Care Centre, Castletroy, Limerick, Ireland

ABSTRACT The aim was to enquire qualitatively into the phenomenon of the moment of death at

home as experienced by the lay carer. Using a purposeful sampling strategy, rural and urban families

were identified in the mid-west of Ireland. Semi-structured interviews were conducted with the main

carer 2 to 21 days (average 10 days) after the death. The proximity of the interviews to the death was a

unique aspect of the study. Twenty-two families were recruited with 10 completing the interviews which

were analysed using a framework approach of grounded theory. The first of three major themes describes

the experience of the moment of death with particular reference to breathing and mystery. The second

theme of relationship encompasses the characteristics of the carer, gender, humour, and the patient’s

personality. Finally, the role of the professional as guide is explored. This is the experience of the moment

of death as recounted by 10 families. Our findings bring the deathbed scene to our clinical and

conceptual attention. The painful, mysterious, and intimate reality of dying needs to be given its place in

the curriculum of medical training. It already has its place in the community we serve.

KEYWORDS: qualitative enquiry; moment of death at home; lay carer; medical training

Introduction

As doctors working in palliative medicine we care for people who ultimately

will die yet, rarely, are we present at the moment of their death. Much published

work on the moment of death has been written by anthropologists and socio-

logists, but not by those directly involved in the care of the dying (Glaser &

Strauss, 1968; Kastenbaum & Normand, 1990; Kellehear, 1984; Seale, 1995).

Palliative Care programmes continue to demonstrate that enlightened and

dedicated care can markedly reduce the suffering of patients with advanced

cancer and their families yet Kastenbaum (1999) questions why the vast

experience acquired has not yet been translated into a vision of the moment of

death. The moment of death has become increasingly marginalized. The purpose

of this study was for a doctor as researcher to learn from witnesses about the

experience of the moment of death.

Correspondence: Sinead M. Donnelly, Palliative Medicine Department, Milford Care Centre,

Castletroy, Limerick, Ireland. Tel: 35361485846. Fax: 35361485847.

E-mail: [email protected]

Mortality, Vol. 11, No. 4, November 2006

ISSN 1357-6275 (print) ISSN 1469-9885 (online)/06/040352-16 � 2006 Taylor & Francis

DOI: 10.1080/13576270600945410

Literature review

The moment of death has been a compelling image and dominant con-

cept throughout much of history. Kastenbaum (1999) suggests that the term

has become destabilized by technological advances. Hospice has said so little

when cultural tradition says so much about the last moment of life. Although

death is a rite of passage in which we will all participate we understand

little of what is valued at the end of life (Steinhauser et al., 2000). This study

was undertaken to look at the mystique of the moment of death in what

Kastenbaum and Normand (1990) consider ‘‘a nearly vanished world.’’ They

also suggest that if we look closely at how we die, we will be challenged as to

how we live.

The moment of death had much traditional significance (Aries, 1974;

Donnelly, 1999a, b; Lysaght, 1986, 1995, 1997; Tyers, 1992; Van Gennep,

1961). This work follows a study by one of the authors on traditions of

dying and death in Ireland and Scotland (Donnelly, 1999a, b). From that

folklore collection it was clear that the moment of death was highly significant

for the carer, family, and their communities. Death was seen as a natural

extension of life and the moment of death was sacred. The next question was

whether this moment still has significance. If so, should not the doctors who

claim to serve the people at the time of their dying enquire about this

experience?

We adopted Kellehear’s (1989) ethical approach to research by emphasizing

empathy and interpersonal sensitivity as critical for this study. At such a sensitive

time, the empathy and consideration required to obtain professional and family

consent to posthumous home visits and interviewing necessitated considerable

time and effort (Rinck et al., 1997; Ross & Cornbleet, 2003).

The timing of the interview within 2 weeks of the death was a unique aspect of

this study. Since there is such variation in the interval i.e., 1 week to 24 months

(Ahmedzai, Morton, Reid, & Stevenson, 1988; Higginson, Priest, & McCarthy,

1994; Hinton, 1996; Stroebe, Stroebe, & Schut, 2003) between bereavement and

research participation adopted by previous researchers we adhered to fundamental

research principles: the bereaved person had the opportunity to refuse and

withdraw at any time; anonymity and confidentiality were scrupulously assured;

and adequate support was available to bereaved participants.

Although most people die in hospital, recent systematic reviews and national

survey on attitudes towards death found that most people want to die at home

(Gomes & Higginson, 2006; Irish Hospice Foundation, 2004). For this reason this

study focused exclusively on what actually happened at the time of death at home

and the effect of the experience on the carer.

Method

This is a qualitative enquiry (Clark, 1997) into the phenomenon of the moment of

death as experienced by lay carers in mid-west Ireland. Those eligible were family

The moment of death 353

carers of patients imminently dying referred to Palliative Care service. Using a

purposeful (Mays & Pope, 1995) sampling strategy, families were identified in the

community by the home care nurse and in the Palliative Care unit by the medical

team prior to discharge where care at the time of death was likely to be maintained

at home. As in Ewing et al., 2004, efforts made with recruitment and time required

to recruit were disproportionate to the outcome achieved. As deaths in the mid-

west of Ireland occur at home more frequently in rural areas, recruitment initially

confined to the city had to be extended (Gomes & Higginson, 2006; Jordhoy,

Kaasa, Fayers, Underland, & Ahlner-Elmavist, 1999).

We obtained ethical approval from the Mid West Ethics and Research

Committee. Interviewees were provided with bereavement support from the

home care clinical nurse specialist and the social work team. Mindful of the

sensitivity of the topic (Addington-Hall & McPherson, 2001; Stroebe, Stroebe, &

Schut, 2003) emphasis was placed on minimizing potential distress to the carers,

at all times being tactful and considerate.

With the general practitioner’s telephone permission, the researchers conducted

an initial visit to the family home to meet the carer(s) and explain the study prior

to the expected death. Meeting the carer prior to the patient’s death facilitated the

early post-bereavement visit. Written informed consent for the interview was

obtained from the prospective interviewee. Participants were informed that the

interview could be terminated at any point and that anonymity would be ensured

by changing their names. The interviewer informed the senior social worker of any

additional concerns arising from the interview process which she as a doctor had

observed.

The interviews were carried out on average 10 days (range 2 – 21 days) after

death. Open, semi-structured interviews were used (Plant, 1996). Questions

focused on the experience and description of the moment of death. The researcher

used follow-up probes for more detailed information. Field notes were maintained

following each interview to assist with interviewer debriefing and discussion with

the supervisor.

Data collection and analysis occurred concurrently. Data was sourced

through in-patient and home care notes, observational field notes, and

interviews. The interviews were recorded and transcribed verbatim by the

researcher who conducted the interview. Interviews were initially read and coded

independently by two researchers using in vivo and conceptually derived codes

(Denzin & Lincoln, 1994; Green, 1998; Strauss & Corbin, 1998). The two

researchers then worked together on each interview agreeing on codes, concepts,

and emerging themes. In this combined process, systematically reviewing each

interview, concepts gained farther supporting evidence or were reduced in

weighting and outlying or possible deviance in analysis was agreed. Thematic

categories were then derived which encompassed similar codes. All analysis

decisions were made by consensus. To validate findings and account for

potential investigator bias, transcripts were reviewed by an external consultant.

Data saturation was achieved after the analysis of 10 interviews and recruitment

ceased.

354 S. M. Donnelly et al.

Findings

Of twenty-two families recruited, 10 completed the interview. Of the other 12

families, interviews did not take place because: three patients died in the Palliative

Care unit, one family could not be contacted after the death, two families chose

not to do the interview after the death, two patients were still alive after

recruitment ended, and four general practitioners decided families would not

participate in the study. Fifteen of the 17 carers interviewed were female.

The first of three major themes describes the experience of the moment of death

with particular reference to breathing and mystery. The second theme of

relationship encompasses characteristics of the carer, gender, humour, and the

patient’s personality. Finally, the role of the professional as guide is explored.

Experience of the moment of death

The moment of death is very important to the carers. The scene of the moment of

death resembles a stage with people taking up positions around the bed. The

professionals (the night nurse, the home care nurse, or the doctor) who have been

acting as guides recede into the background and the individual who is dying and

the main carer remain centre stage.

In the Ned Murphy interview, seven women are in position around the bed

where Ned is dying: his wife, four daughters, his sister, and a home care nurse.

‘‘He looked at Mam. ‘Ned, you know its time to go, look at the light. The light will

guide you into your new life. I hope you have a great time. We love and will miss

you. Goodbye’.’’ The four daughters realize their apprehension, having not

experienced death before: ‘‘It’s going to be so monumental but when it did

happen we were building up to it slowly and it seemed so natural.’’ They

emphasize the finality of the last breath. ‘‘There was one more breath and he was

gone. The moment that he left was so obvious, he was gone. There is only one

moment of death. Because you are 100% yourself until you die. You aren’t half a

person. You aren’t any less. He wasn’t any less of who you were, apart from being

a sick person. But suddenly that was gone, he was 100% gone.’’

Brenda Baker describes practically and poignantly the moment of death of her

husband. ‘‘I kissed him on his forehead, lying down in bed beside him. Roisin had

given me a cup of tea and he was dying. I was staring at the bag, the new catheter

and nothing was coming. He checked to see was he dry. He was comfortable and

cosy Roisin just said to me ‘Dad isn’t breathing,’ there was nothing. I held his

hand.’’ John Casey, one of only two male carers in the study, describes his wife’s

dying: ‘‘And when I looked at her she was just gasping. Even though I had an air

ventilator she was kind of gasping, a dying gasp. So all I could do really was to

sponge her lips and moisten her mouth. That’s all I could do for her. So I held her

hand and stayed with her to the last.’’ His comment: ‘‘that’s all I could do for her’’

belies the enormity of what in fact he did for her. John Casey experienced many

deaths within his family. He remembers ‘‘the agony of their deaths.’’ However, in

the most recent death of his wife, he only remembers her smiling and happy.


In keeping with an Irish tradition of never leaving the dying person unattended,

Mary Harte describes her husband’s dying in the company of her two sons. For

this rural family Irish traditions are valued. ‘‘We were just standing around, just

watching him. We were talking to him, just telling him that he’d be fine, that we

were all happy. We said an act of contrition into his ear and the blessed candle was

lighting. We sprayed holy water over the bed. We had said the rosary.’’ The rosary

is a litany of separate prayers repeated in decades and refers to the earthly and

celestial life cycle of Christ. It is a prayer traditionally said daily and suited to

community participation. The number of blessed candles often was locally specific

e.g., three or five or 12. The words ‘‘o mo dhia’’ translated ‘‘oh my God’’ were

traditionally said into the ear of the dying person as was the act of contrition

(Donnelly, 1999a).

Patricia, a nurse explains the importance of being present for her sister Carmel

who was dying: ‘‘We were all in the room. It was vitally important for all of us; her

five children, my two sisters, myself and two brothers. Everybody who could be

present was present.’’ Not all are able to witness the moment of death. A sister-in-

law of Maire Hayes explains: ‘‘We had lots of rosary beads around the place and

we did have a crucifix and a candle lighting. I didn’t go into the room until some

time later. I didn’t go in when I was called. I just stayed beside the door. I just

didn’t want to go in.’’

For Ned Murphy’s daughters the experience of the moment of death at home is

‘‘the nicest way to die.’’ Describing themselves as non-religious, they are keenly

aware of the extraordinary nature of the death of their father: ‘‘We were feeling it

very strongly, detached sort of emotion almost unreal. That piercing grief we felt

when he was diagnosed with a terminal illness . . . . Now it was almost like you

knew you were in the middle of something extraordinary but slightly detached. It

was almost too big to cope with.’’ They realized ‘‘the sense of detachment, the

sense of closure, it was intimacy.’’ They were totally present to their father:

‘‘I wasn’t aware of anybody else apart from myself and Dad. For those two

minutes it was just me looking at Dad. I wasn’t looking at the candle. But just for

those two minutes, it was just something suspended. Mum put the candle in Dad’s

hand. We all instinctively put our hand out on Mam’s.’’

In all the descriptions of death, there is a paradox between grief and an ability to

see the ‘‘loveliness’’ of the dying process. Pauline McCormack mentions the word

‘‘lovely’’ four times in the description of the moment of death of her mother. She

in fact describes a lament which is resonant of the caoineadh (Lysaght, 1997) or

keening, a traditional Irish expression of grief. ‘‘I just felt a huge sob come up from

my toes. I cannot explain it. It just came up from my toes. I just started to wail, it

was no tears. It was just a wail.’’ Patricia is also aware from her nursing experience

of how the death of her sister might have been: ‘‘The day before she had a slight

furrow in her brow. But the day she died she was very serene. Her breathing—she

didn’t struggle. She died very peacefully. It could have been bad. It could have

been awful. But it wasn’t—it was just slipping away.’’

Gerry Murphy’s wife describes his moment of death: ‘‘I got my arms right

around his back. I put my head down on his chest. Jim, the youngest was trying to


get his arms around him. Barry and Sean were holding on as well. Ann was

holding onto his feet ‘Give him more oxygen, Mam. Save him. Don’t let him go’.’’

The O’Brien family speak of gathering around the bed of their father. They touch

and stroke. They observe the breathing. They speak of the paradox of dying

‘‘a feeling of joy and sadness and everything all mixed in at once.’’ They are

amazed at the coincidence of their father dying on the morning of his wedding

anniversary. ‘‘It was, my God, he was going up to her like.’’

Breathing

People observe breathing closely: ‘‘Its kind of hypnotic. His breathing overtook the

room. We were all sort of breathing with him.’’ Audible lung secretions were

distressing for Ned Murphy’s daughter: ‘‘It sounds like he’s drowning.’’ The

change in the breathing pattern alerted them to his imminent death: ‘‘Suddenly

when his breathing started to go there was a sense of ‘yes, he is . . . he’s going to

die’. Observing and listening to the breathing seems to draw the carers into a state

resembling meditation: ‘‘We were all listening to this rhythm and that was kind of

bringing us through. His breathing would get more and more shallow. So to be

there with him, to almost be breathing with him, following each breath so intently,

that by the time it came we were all happy for him to go.’’

The last breath became a symbol of death: ‘‘We felt that his last breath was no

different from the fifteen, the previous fifteen but just it wasn’t followed by another

one and when it was gone, he was gone.’’ Not only the presence of breathing drew

them in but the absence of breathing: ‘‘As soon as it stopped you don’t realize how

loud breathing can be.’’ The last breath was the signal for an outpouring of grief by

Carmel Murphy’s sister: ‘‘Kind of lost it when she was dying like, when she was

taking her last breath and cried a bit.’’

Mystery

Mystery is part of the moment of death. ‘‘There was no crying. It had been so

peaceful, so happy. There was a sense of something supernatural, something

supernatural had happened like watching a baby being born but the opposite, the

other end of it.’’ Ned’s daughters elaborate on this: ‘‘it seemed like Dad was being

born but in a different way. It was quite spiritual. It was almost like watching a

miracle. That sounds really bizarre, it was just so. To be there, to share and just to

think our Dad has been through this overwhelmingly spiritual experience.’’ They

found this event extraordinary. They describe the hypnotic suspension: ‘‘where

they are the spirit is there. We definitely had this sense of suspension. We were just

looking at him and listening and kind of hypnotic.’’ The reality of the experience is

faced but there is an absence of fear. ‘‘We were all in this strange suspended oh my

God, what’s just happened? There is such a sense of goodness. It was never scary,

never disturbing and makes me now not afraid of death.’’

Ruth McCormack’s daughter and carer had already experienced the death of

her husband David and now the death of her mother: ‘‘I had given her a message


to tell David how much I missed him, how much I loved him.’’ John Casey was

intrigued by the mystery of the candle quenching: ‘‘Funnily enough the candle

went out. This is not exaggerating you know. The candle went out and I tried to

light it several times and it wouldn’t light. So I heard a whisper ‘leave it alone.’

It was not my imagination. It was Bridget’s voice (his dead wife) but it was a

whisper. Well she was dead at the time. I was trying to light the candle just to have

it burning for her and I did hear a whisper ‘leave it alone’.’’ He refers to very old

Irish tradition: ‘‘I believe her spirit leaves her. I think the spirit hangs around a

while until after the funeral. I believe that. After the funeral the spirit disappears to

wherever she is gone.’’

Relationship

The stories of the moment of death are about relationships involving intimacy,

touch, and expressions of affection. Ned Murphy is surrounded by women

‘‘we just wanted to be so close to him . . . and in the last two minutes, Dad’s focus

was on our mother, which to us was very consoling. It was lovely to see it all

coming right back to just the two of them. For us to see this, to see the strength

that it’s all come from.’’ They unhesitatingly expressed their love: ‘‘kissing him

and saying we love you, we love you and saying goodbye. Good luck on your

journey.’’ They could not get physically close enough to their father: ‘‘We were all

on the bed . . . we just wanted to be so close to him. We weren’t scared.’’

These loving relationships were established over time culminating in this

expression at the time of death. The carers remain present. Brenda Baker ‘‘I

never left him on his own you know. He’d have some tea and I’d be having tea and

we’d talk.’’

Pauline McCormack: ‘‘I talked to her all day. I never cried. I talked to her. I

held her hand.’’ Ned Murphy’s daughter: ‘‘Siobhan was down at his feet. You had

your arms around his feet. All sitting in the extremities of the bed, everybody

moved in clutching, hugging, making this kind of circle.’’ Not only were the

daughters giving the touch to support their father who was dying but they realized:

‘‘We needed that contact . . . . We were all trying to hang on, trying to get a space.

At one stage three of us were holding on to his finger but there was no reaction,

there was no reaction at all.’’

Is this level of contact and freedom possible within a hospital or Palliative Care

unit where most people die? Realistically that depth of relationship is not present

or cannot be articulated or expressed in all family situations.

The person who is dying also attends to the needs of the carer as Pauline

McCormack describes: ‘‘Every time she vomited, she apologized, then she’d say

‘you’re very good love.’ She constantly told me that I’d have good luck for what I

was doing. I wasn’t to worry about her that she would always look after me. She’d

be watching down on me. To hear from my mother, to hear her say not once but

over and over, not once but twice, ‘I’ll be always minding you love, I’ll be looking

down on you’.’’ In the midst of grief Ned Murphy’s daughters are full of gratitude:

‘‘We were reading poetry, reading prayers, and thanking him. We were all saying


‘thank you for this, thank you for that’. Finally they summarize: ‘‘We adored him,

we adored him.’’

This ability of the dying person to transcend their physical reality and to be

aware of the needs of the living is in all interviews. If this mutuality were not

present, ongoing care would be very difficult. Although the individual who is dying

is weak and physically unable, the carer has a memory of their generous nature and

this sustains him or her. Even a smile was received by the carer as a statement of

their love: ‘‘He was just so expressive to all of us, whether he was smiling or the

squeezing of the hand, constantly squeezing.’’ Thomas explains his father’s desire

to be at home ‘‘When he was in the hospital he wanted to go home. First thing he

said to me in the door, ‘Thomas, you don’t know how much it means to me to be

at home. I want to die in my own bed’.’’

Thomas also explains the importance of the home and their parent’s

relationship. ‘‘He built the house from scratch himself. And Mam. And it is

their home . . . . This was his paradise and Mam’s paradise. The farm is attached—

it was their work and their home. It was just heaven to both of them.’’ Ruth

McCormack speaks to her daughter as she is dying of her concerns ‘‘for my

brother who is mentally retarded.’’

The reciprocity of care extends beyond the expected intimate family

environment. James Hanrahan is a single man now dying. Throughout his life

he had helped his neighbours who now return this care. Patricia clearly identifies

this mutuality in caring for Carmel. ‘‘She got a two way interaction there. You

were giving comfort to each other, a very positive experience.’’

Gerry Murphy’s wife describes the reciprocal nature of their relationship.

‘‘Gerry, me, and my children in the room. I’ll never forget that actual moment

when he died because we did it together—Gerry and me. I felt that even minding

him—doubly incontinent . . . trying to turn him. He had an air of dignity about him

always. They are just bodily functions. This is the man I spent my life with. It

never entered that I was great because Gerry would do that for me. We stayed in

the same bed, the double bed. Then I bought two small single beds. Then the

public health nurse got me the hospital bed. We came downstairs then. We made

ourselves out in that little room. I slept beside Gerry. I’d leave the side down. I’d

put the pillows then between us. I’d get my arms around him every night. So that if

he had tremors or pain I would wake up. I promised Gerry he would die in my

arms. We started together and we’d finish together.’’

Humour

Humour provides light relief. Ned Murphy’s daughter; ‘‘We were laughing, saying

we love you. We were laughing at one stage. It was like prime real estate in the

bed. We were all literally trying to get a space. At one stage three of us were

holding on to his finger.’’

When asked in the Ned Murphy interview whether any traditions such as

stopping the clock were practiced at the time of death: ‘‘no, the clock wasn’t

stopped but his car hasn’t worked for three days. We think he has something to do


with that!’’ The daughters recognized the paradox of humour at the time of death:

‘‘I thought what am I doing, how can I joke?’’ The directness and practicality of

Mary Harte brings a welcome lightness to the story: ‘‘And his (Jim’s) stomach was

out like that. He couldn’t pass urine. So the doctor came down and put in a

catheter. Then he was fine. There was no more out of him!’’ She laughs at the

function of holy water: ‘‘Tom said the act of contrition into his ear. We had said

the rosary. We had sprayed holy water over the bed. Because they say at that time

the devil is trying to take the soul . . . so . . . the devil hates holy water!’’

Characteristics of the carer

Ruth McCormack’s daughter needs to understand what to expect. The home care

nurse guides her. As a result ‘‘mentally I kept telling myself, this could come, I’ll

be fine. I’ll be good and I was fine.’’ Self-awareness, an ability to articulate

emotion, and an ability to reflect on events are evident in the carers. John Casey

recognizes that he had previous experiences of family death i.e., 11 deaths in the

previous year, but ‘‘people died differently. I was worried about her being

distressed. I was worried anything strange would happen, the unknown.’’ His faith

was important ‘‘It’s the meaning of life itself, nothing else really matters.’’

His mother’s death and the manner in which his father dealt with her death

taught him: ‘‘I kinda judged my own father when he couldn’t go into the room

with my own mother. I kinda judged him. What’s wrong with him like? You’d do

anything for your wife dying. I realized now what he was going through.

He couldn’t bear to face it. I shouldn’t have judged him anyway. Big mistake we

make about everybody.’’ His final gesture reveals sensitivity and authenticity:

‘‘I did sleep in her bed afterwards that day because I felt I wanted to be close to

her. It’s the saddest thing I ever did.’’ John Casey has no professional quali-

fications yet he demonstrates courage, honesty, and ability to learn from previous

experience.

Two sisters try to maintain their aunt roles while grieving the death of their

eldest sister Carmel Murphy: ‘‘it was an event, a big event for us because she was

the first in the family. We were kind of looking out for one another particularly the

boys.’’ They set very high standards: ‘‘My aim, my purpose was to make her end as

comfortable, to make that transition as easy as possible, by attending to her every

need, by being there for her.’’ The principal carer recognizes her own very special

relationship with Carmel: ‘‘but there is a bond there, a very strong bond and very

deeply rooted.’’

Ann Murphy struggles to understand suffering: ‘‘Because of Gerry’s suffering—

when you are growing you have the God of fear. And I was shaking my fist at this

guy saying I don’t fear you any more because you don’t exist. If it is fear you want

out of me, you’re not getting it any more. And if there is a God there let him find

me. If there is a God of love out there, let him find me.’’ Carers display an ability

to learn new skills. ‘‘And I learnt how to do things myself. I just actually went into,

if you like, Gerry’s mind. Whatever I could do and whenever I could do it, we did

it together. I learnt how to do the hoist. I learnt how to do the chair.’’


Bridget Hayes gives an excellent account of the value of a special chair;

transforming their lives. ‘‘It was very difficult to get equipment from the health

board. She wouldn’t have been as comfortable if she hadn’t the equipment that we

were able to supply ourselves. And the chair, the recliner, that was a huge help.

’Cause every single day she was able to come out and sit . . . and look out at the

fields and the beautiful sunsets and look at the birds. She could look down towards

the river . . . and if she hadn’t that chair . . . because the couch was too low . . . She

found it indispensable. It kept her independent in the midst of her whole family all

the time.’’

Gender

Fifteen of the 17 carers were female consistent with recent studies (Toscani,

Di Giulio, Brunelli, Miccinesi, & Laquintana, 2005; Visser, Kinkenberg, Broese

van Groenou, Willems, Knipscheer, & Deeg, 2004). Ned Murphy’s daughters

realize that men and women may provide care in different ways: ‘‘Ann (night

nurse) said that normally when there is a male (carer) they don’t want to touch the

person. They don’t want to have any kind of contact. We couldn’t imagine not

holding him or pulling the poor man!’’

Pauline McCormack recognizes the difficulty for her brothers ‘‘the boys’’:

‘‘there was family in there. There are three girls and three boys. The boys had been

in and out on the day but they weren’t able to sit there. So they had gone. They

hadn’t gone far. They knew it was coming. They weren’t able to sit there but it was

nice to have my sisters there with my mother for their sake.’’ In a rural community

with two sons and a wife, there is a touching description of Tom, the eldest son,

carrying his father down to the cellar to say goodbye to his carpenter tools before

he died. John Casey describes realistically the dying process of his wife with

difficult physical symptoms: ‘‘her bowels completely moved and that was for three

and a half hours and it didn’t frighten me ‘cause I knew she was going to die. But I

thought it would never stop and I didn’t know how so much could come out of a

person.’’

Patient’s personality

The patient’s personality influences whether care occurs at home. Ned Murphy’s

affectionate nature was mirrored by the affection which his daughters showed him.

‘‘Even though he was hugely affectionate towards us always, you know, but he did

like his own bit of time as well and he got it at last, his own quiet time before he

died. And he said ‘I think I’m going to have to let her go.’ He talked to Mam a

lot more about it, not to us.’’ They noticed that on their father’s face ‘‘there was

always one tear.’’

Barry Baker is described by his wife as ‘‘the life and soul.’’ The carer

remembers: ‘‘he never got depressed. Never, ever said anything, what was running

through his mind . . . but he never spoke about dying.’’ Discretion and dignity were

important to him: ‘‘he didn’t want the nurses to . . . you like to give someone their


dignity. He was kind of proud. He didn’t mind me kind of doing.’’ The mutual

giving and receiving as well as the selflessness of the patient are recounted by

Pauline McCormack: ‘‘My mother would have been my comfort, my big comfort

because she was so appreciative, she never complained. All she ever did was

thanked you.’’ John Casey admires his wife’s ability to fight for life: ‘‘She wanted

to die at home. I believe she fought very hard to hang onto life. Even being so sick,

I don’t know why she fought so hard.’’

The desire to be at home is expressed by Mary Harte: ‘‘He wanted to be at

home, he always wanted to die in his own bed.’’ This house has even more

significance as ‘‘he built this.’’ The selflessness and thoughtfulness of James

Hanrahan towards others even when dying is remembered by his niece who was

his carer: ‘‘always a smile, always put out his hand . . . he said he had no fear of

dying. He wanted to have things organized.’’ He had his grave ready since March,

7 – 8 months before his death.

Similarly Carmel Murphy who wished to die at home was organized: ‘‘She knew

exactly what was happening. She had foreseen more or less the way she wanted it.

Her desire was to die in her own bed. She knew before she became unconscious

what was happening, she was a model patient.’’ Her sister very bluntly states: ‘‘I

thought she’d be terrible trouble but she was excellent. She understood everything

and received everything, never complained’’ and paradoxically was ‘‘very happy.’’

In these interviews the dying person makes it easy for the carer. Maire Hayes

sought independence and as much control as possible: ‘‘Up to the end she used to

smile and laugh and she’d say ‘that’s the way I want it, I want to be in control’.’’

The guide

The home care or night nurse acts as a guide. Ned Murphy’s daughters were open

to the guidance provided by the home care nurse. The nurse encouraged them:

‘‘it’s a lovely quiet time now. You will all go, hold him and kiss him and say you

love him.’’ ‘‘She got us to lie him down, we were lying down beside him. We

needed that advice. To say ‘no, you can be with him, it’s ok.’ We needed that

contact.’’

The arrival of the night nurse has significance in relation to the imminence of

dying: ‘‘We were mentally counting when we got the night nurse because we had

been told that the night nurse was for seven nights.’’ The night nurse has qualities

that enable her to remain present at this intimate and emotionally turbulent time:

Ned Murphy’s daughter: ‘‘we would have trusted her. She was great with him. She

said ‘well he started his journey now.’ Then we knew it was going to be hours. She

said ‘it could be a long night’ and so we relaxed.’’ She was ‘‘answering their

questions, whispering, swabbing his mouth in a nice reassuring, lovely way.’’ The

Ned Murphy family realized ‘‘how completely valued Ann was and how we

couldn’t have done it without her. You need someone to guide you through it.’’

So in the drama and the choreography of the moment of death, the guide seems

to be in the wings giving cues: ‘‘that’s why you need somebody else there telling

you what, who can give the cue, Saying ‘its ok to do this now’. She did keep us


calm.’’ For the Harte family the nurse was teacher and guide: ‘‘Well the nurse, the

night nurse told us like you know.’’ Again in the James Hanrahan interview: ‘‘but

Ann was a nurse, she knew what to do.’’

Discussion

This is the experience of the moment of death as recounted by 10 families. Our

findings introduce the deathbed scene as a situation deserving clinical and

conceptual attention (Kastenbaum & Normand, 1990), supporting the call for a

new art of dying (Post, 1993). This study brings to light an ars moriendi for 2006

mixing old and new.

It is said that, in Western society, debate is not about death itself instead it is

mainly about law, moral rules, and medical practice (Callahan, 1993). Death has

been moved out of nature into the realm of human responsibility (Callahan,

1993). Yet death, hidden in the folds of everyday consciousness (Heidegger,

1962), is an attitude towards life, an anticipated possibility at every moment of life.

Consistent with this claim, our interviews reveal paradoxically how death fully

belongs to life.

Our aim was to maximize recall while putting in place support for the

interviewee to minimize distress by interviewing the bereaved relative within 2

weeks of the death. The effects of bereavement on memory have received little

attention. The period between the experience and the recollection is crucial to the

accuracy of the recalled information and the ease with which it is recalled. It is

obvious that the shorter the intervening period the easier it is to recall information

retrospectively and the memory literature has found that later recollections may

diverge from earlier ones (Addington-Hall & McPherson, 2001; Bradley, 1990;

Stroebe et al., 2003).

This study responds to critical commentary on the ‘‘medicalization of death’’

(Clark, 2002; Illich, 1976). Lay and professional carers respect that death is a task

that each person has to fulfil. We do not claim that the ‘‘good death’’ occurs in the

home nor is only possible in the home. We do claim that the moment of death is

very important to family carers. We suggest that, irrespective of the location of an

anticipated death, the moment of death is highly charged and needs to be handled

skilfully by the professional carer. We support Gott et al. (2004) in not demonizing

dying in hospital but rather examining how death in institutional settings can take

on a more meaningful quality.

It is sometimes claimed that in late modern society dying is hidden away and

denied as it poses insuperable problems of meaning (Seale, 1995). Yet Seale

demonstrates in his paper ‘‘Heroic Death’’ that opportunities exist to imbue the

process of dying and caring for the dying with deep meaning (Byock, 1997; Glaser

& Strauss, 1968). Seen in heroic terms, the reward for those who complete the

task of dying is the realization and enactment of intimate emotions where the

dying self’s connection with others is affirmed. The findings in our study are of

the dying striking a heroic pose (Seale, 1995) with carers in the home providing

emotional accompaniment and being heroic in their commitment and endurance.


The moment of death is intimate. ‘‘The gathering’’ is a good description of the

deathbed scene. The professional attends as an unobtrusive guide. The scene at

the time of dying is like a stage. Professionals move off-stage while the person who

is dying and the person who is caring remain centre stage.

The bed itself becomes a metaphor representing intimacy and the reality of the

physical deterioration. Proot et al. (2004) also use the metaphor of theatre but

specifically ‘‘directing’’ in discussing the needs of patients dying at home. They

refer to patients’ concern about the moment of dying. Patients wish to direct

things to make life more comfortable for their beloved ones. In this regard patients

value reciprocity and counterdependence. This would seem to be an important

ingredient in enabling care in the home until the moment of death.

It is clear that not only might there be the standard ‘‘pastoral care of the dying’’

but there is also powerful pastoral care by the dying. The dying person looks after

the living and gives hope. There is a sense of breathing into the moment of

death. The graphic detail of physical change and practical issues of caring are

remembered. The loneliness of caring so deeply is palpable.

The experience for the 10 families of caring at home was generally positive.

Singer et al. (2005) found that 90% of 76 caregivers interviewed thought that

death at home was a positive experience. This positive experience may allay future

informal carers’ anxiety and encourage greater demand for the opportunity to

provide care at home (Byock, 1997). One family commented on the difficulty in

obtaining a reclining chair from the health services, a difficulty that they resolved

by purchasing it themselves. Realizing how this simple act had improved her

quality of life they were pleased to be able to do this for Maire.

Working in the Palliative Care unit raises the thought that perhaps the relatives

are not allowed or enabled to reach that depth of loneliness and love, to actually

feel the loneliness and affection to their full intensity. Could it be that the structure

of a professional unit reduces the ambient raw intensity or perhaps the pro-

fessionalism protects the mourning relatives some of whom could not tolerate

such intensity at the time of death, an act inaccessible and never before witnessed

or experienced during life?

Gilmour suggests that formal caregivers with respect to family caregivers need to

position themselves in secondary and supporting roles (Visser et al., 2004). They

need to acknowledge the family caregiver as the primary caregiver and allow them

contribute to the care programme within the institutional setting. In this study, the

professional carer maintained such a position.

The professionals who act as unobtrusive guides, who disappear quietly from

the intimate scene of dying, enable care at home. ‘‘How she would just wait there,

how she just had that way with her’’ captures the essence of the home care nurse.

There is a risk that we can as professionals disable those who are apparently

untrained, captured in the phrase ‘‘the tyranny of specialization’’ suggesting

that the very ‘‘excellence’’ of professional palliative care can disempower.

Although this study reveals the male carer in the minority, in witnessing

many family deaths John Casey is aware of the individuality of dying and that

‘‘anything could happen.’’ In the face of that insight, he showed courage to


care for his wife at home as well as openness, sensitivity, honesty, faith, and

reflexivity.

These are stories of service, selflessness, courage, and authenticity of the carers

and of the dying patient. The stories reveal the extent in which the dying patient

needs to reciprocate or the need for generativity described by social psychologists

as one of the great emotional tasks of human development (Steinhauser et al.,

2000). Ned Murphy’s four daughters are articulate and passionate. They echo Ira

Byock (1997) ‘‘when the human dimension of dying is nurtured, for many the

transition from life can be so profound, intimate and precious as the miracle of

birth.’’ They were learning from their father not to be afraid of death.

How will the findings of this study alter medical practice or medical training?

To prepare families for the moment of death, the professionals need to know what

to expect, which can only be learned by experience. It is an experience which

professionals might be reluctant to witness. In palliative medicine, the patients die.

We, the professional carers, will also die and it is wise to be reminded of that fact.

Our ancestors of old emphasized the moment of death and the lay carers of today

honour that wisdom in the home. The painful, mysterious, and intimate reality of

dying needs to be given its place in the curriculum of palliative medicine training.

It already has its place in the community we serve.

Conclusion

A man who knew he would soon die arrived home from hospital and remarked

‘‘Thank God I’m home.’’ This sums up the carers’ experience in this study on the

moment of death at home. Reflecting on these experiences of death at home

teaches us what is most important to people. We have to acknowledge the innate

skills of carers and are alerted to the risk of disempowering them. If we aspire to

‘‘specialize’’ in palliative care or medicine, we must remember who are ‘‘special’’

to those who are dying.

It is said that care at the end of life should be an indicator of the performance of

health systems (Toscani et al., 2005). Knowledge of the significance of the

moment of death adds to the quality of that care. Ar bhruach na sıoraıochta is

an Irish phrase to describe dying; translated as ‘‘on the edge of eternity.’’

One assumes that eternity is on the other side, i.e., on the side of death. In fact this

study reveals the eternal at the bedside; in the touch, in the silence, in the

presence, in the openness, in the vulnerability, and in the courage. The eternal is

in the total real presence of these people to each other.

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Biographical Notes

Dr. Natasha Michael, MRCGP, MRCPI, is a specialist registrar in Palliative Medicine now based inOur Lady’s Hospice, Harrold’s Cross, Dublin, Ireland, who was research registrar in PalliativeMedicine in 2005, completing this study.

Dr. Cliodhna Donnelly, MB, MPH, research registrar in Palliative Medicine 2001 – 2003, whoundertook the first part of this study; experience of the moment of death within a Palliative Care unitand initiated the second part which is presented here.

Dr. Sinead Donnelly, MD, FRCPI is consultant in Palliative Medicine HSE Mid West Area,Ireland, who has published previously on qualitative research and cultural influences on theexperience of dying. In addition she has produced three documentaries exploring death and dying.


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