Mortality, Vol. 11, No.

4, November 2006

Experience of the moment of death at home

S. M. DONNELLY, N. MICHAEL, & C. DONNELLY
Milford 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 patients
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 sociologists, 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: dr.donnelly@milfordcarecentre.ie
ISSN 1357-6275 (print) ISSN 1469-9885 (online)/06/040352-16 2006 Taylor & Francis
DOI: 10.1080/13576270600945410

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Literature review
The moment of death has been a compelling image and dominant concept 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 Kellehears (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

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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 midwest 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 practitioners 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 patients 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.

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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
patients 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: Its 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 arent half a
person. You arent any less. He wasnt 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 isnt breathing, there was nothing. I held his
hand. John Casey, one of only two male carers in the study, describes his wifes
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. Thats all I could do for her. So I held her
hand and stayed with her to the last. His comment: thats 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.

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In keeping with an Irish tradition of never leaving the dying person unattended,
Mary Harte describes her husbands 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 hed 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-inlaw of Maire Hayes explains: We had lots of rosary beads around the place and
we did have a crucifix and a candle lighting. I didnt go into the room until some
time later. I didnt go in when I was called. I just stayed beside the door. I just
didnt want to go in.
For Ned Murphys 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 wasnt aware of anybody else apart from myself and Dad. For those two
minutes it was just me looking at Dad. I wasnt looking at the candle. But just for
those two minutes, it was just something suspended. Mum put the candle in Dads
hand. We all instinctively put our hand out on Mams.
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 breathingshe
didnt struggle. She died very peacefully. It could have been bad. It could have
been awful. But it wasntit was just slipping away.
Gerry Murphys 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

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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. Dont let him go.
The OBrien 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 Murphys daughter: It sounds like hes 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 . . . hes 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 wasnt 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 dont realize how
loud breathing can be. The last breath was the signal for an outpouring of grief by
Carmel Murphys 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. Neds 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, whats just happened? There is such a sense of goodness. It was never scary,
never disturbing and makes me now not afraid of death.
Ruth McCormacks 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

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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 wouldnt light. So I heard a whisper leave it alone.
It was not my imagination. It was Bridgets 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, Dads 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 its 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 werent 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. Hed have some tea and Id be having tea and
wed talk.
Pauline McCormack: I talked to her all day. I never cried. I talked to her. I
held her hand. Ned Murphys 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 shed say
youre very good love. She constantly told me that Id have good luck for what I
was doing. I wasnt to worry about her that she would always look after me. Shed
be watching down on me. To hear from my mother, to hear her say not once but
over and over, not once but twice, Ill be always minding you love, Ill be looking
down on you. In the midst of grief Ned Murphys daughters are full of gratitude:
We were reading poetry, reading prayers, and thanking him. We were all saying

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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 fathers 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 dont 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 parents
relationship. He built the house from scratch himself. And Mam. And it is
their home . . . . This was his paradise and Mams 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 Murphys wife describes the reciprocal nature of their relationship.
Gerry, me, and my children in the room. Ill never forget that actual moment
when he died because we did it togetherGerry and me. I felt that even minding
himdoubly 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. Id leave the side down. Id
put the pillows then between us. Id 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 wed finish together.
Humour
Humour provides light relief. Ned Murphys 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 wasnt
stopped but his car hasnt worked for three days. We think he has something to do

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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 (Jims) stomach was
out like that. He couldnt 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 McCormacks daughter needs to understand what to expect. The home care
nurse guides her. As a result mentally I kept telling myself, this could come, Ill
be fine. Ill 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 Its the meaning of life itself, nothing else really matters.
His mothers death and the manner in which his father dealt with her death
taught him: I kinda judged my own father when he couldnt go into the room
with my own mother. I kinda judged him. Whats wrong with him like? Youd do
anything for your wife dying. I realized now what he was going through.
He couldnt bear to face it. I shouldnt 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. Its the saddest thing I ever did. John Casey has no professional qualifications 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 Gerrys suffering
when you are growing you have the God of fear. And I was shaking my fist at this
guy saying I dont fear you any more because you dont exist. If it is fear you want
out of me, youre 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, Gerrys 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.

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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 wouldnt have been as comfortable if she hadnt 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 hadnt 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 Murphys 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 dont want to touch the
person. They dont want to have any kind of contact. We couldnt 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 werent able to sit there. So they had gone. They
hadnt gone far. They knew it was coming. They werent 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 didnt frighten me cause I knew she was going to die. But I
thought it would never stop and I didnt know how so much could come out of a
person.
Patients personality
The patients personality influences whether care occurs at home. Ned Murphys
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 Im going to have to let her go. He talked to Mam a
lot more about it, not to us. They noticed that on their fathers 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 didnt want the nurses to . . . you like to give someone their

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dignity. He was kind of proud. He didnt 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 wifes 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 dont 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 shed 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 shed say thats the way I want it, I want to be in control.
The guide
The home care or night nurse acts as a guide. Ned Murphys daughters were open
to the guidance provided by the home care nurse. The nurse encouraged them:
its 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, its 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 Murphys 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
couldnt 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: thats 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

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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 selfs 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.

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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 professionalism 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

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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 Murphys 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 Im 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 soraochta 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 in
Our Ladys Hospice, Harrolds Cross, Dublin, Ireland, who was research registrar in Palliative
Medicine in 2005, completing this study.
Dr. Cliodhna Donnelly, MB, MPH, research registrar in Palliative Medicine 2001 2003, who
undertook the first part of this study; experience of the moment of death within a Palliative Care unit
and 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 the
experience of dying. In addition she has produced three documentaries exploring death and dying.