Original Article

Palliative Medicine
26(4) 368–378
Experiences of dying, death and Ó The Author(s) 2011
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bereavement in motor neurone disease: sagepub.co.uk/journalsPermissions.nav

DOI: 10.1177/0269216311410900
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A qualitative study

Bridget Whitehead Preston MND Care and Research Centre, Royal Preston Hospital, UK
Mary R O’Brien Evidence-based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, UK
Barbara A Jack Evidence-based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University, UK
Douglas Mitchell Preston MND Care and Research Centre, Royal Preston Hospital, UK

Abstract
Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in
the final stages of the disease and bereavement period.
Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18
current family carers and 10 former family carers.
Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a
need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded
as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and
distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may
exacerbate patient distress and desire for hastening death.
Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the
illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more
effectively in order to better meet their needs.

Keywords
Bereavement, end-of-life, Motor Neurone Disease, palliative care

The final days of life for people MND can be dev-

Introduction
Motor Neurone Disease (MND), also known as
Amyotrophic Lateral Sclerosis (ALS), is a neurolog-
ical condition with progressive degeneration of motor
neurones. The symptoms vary depending on which
motor neurones are affected, but all patients experi-
ence a significant loss of function. There is no cura-
tive treatment and over 50% of patients die within
three years of the onset of their first symptom.
MND affects 6 in 100,000 in the UK1 and 1 in 1000
UK death certificates record MND as the cause of
death.2
astating for both the patient and the carer.3,4 Due to the
complex nature of the disease and frequent rapid
decline, the final stages of MND often leave patients
and families unprepared and present numerous chal-
lenges for professionals endeavouring to provide sup-
port and care at this traumatic time. The need for
specialist palliative care in MND has been widely
acknowledged3,5–9 and palliative care guidelines for
MND exist.10
Relatively few studies have investigated the end-
of-life period for people with MND.10–16 A number
of issues, including limited, inconsistent provision of

Corresponding author:
Miss Bridget Whitehead, Research Assistant, Preston MND Care and Research Centre, Royal Preston Hospital, Sharoe Green Lane,
Preston PR2 9HT, UK
Email: bridget.whitehead@edgehill.ac.uk

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Whitehead et al. 369

Table 1. Characteristics of patients

ID Gender Age at diagnosis Disease duration (at interview) MND type

72 M 84 18 months PBP
32 F 74 11 months ALS limb onset
27 F 67 92 months ALS bulbar onset
94 M 58 6 months ALS limb onset
45 M 74 8 months ALS limb onset
3 F 45 15 months ALS limb onset
73 M 58 16 months ALS limb onset
99 F 60 3 months ALS limb onset
85 F 30 156 months PMA
83 F 74 18 months ALS bulbar onset
54 F 58 41 months ALS limb onset
46 F 56 11 months PLS
6 M 79 11 months ALS limb onset
77 M 25 12 months ALS limb onset
17 F 69 9 months PBP
51 F 46 28 months ALS bulbar onset
100 F 61 1 month ALS limb onset
9 M 56 11 months ALS limb onset
101 F 70 1 month PBP
86 M 52 33 months ALS limb onset
102 F 82 4 months ALS limb onset
19 F 72 18 months PLS
20 M 51 30 months ALS limb onset
103 F 57 8 months ALS bulbar onset
N/A F 63 9 months ALS bulbar onset
MND: Motor Neurone Disease, ALS: Amyotrophic Lateral Sclerosis, PBP: Progressive Bulbar Palsy, PLS: Primary Lateral Sclerosis.

palliative care services and unmet patient needs, have
emerged.10,13–15 Qualitative studies, with a focus on the
palliative phase for people with MND, remain particularly
scarce. Swedish researchers have investigated patient and
family perspectives;17,18 carer perspectives during the final
stage of the disease have been explored in Australian stud-
ies.19,20 This limited evidence base is likely to result from
the practical and ethical difficulties frequently encountered
when undertaking research with this population.21
A recent UK government document22 has high-
lighted the need for improved end-of-life care for all
patients, setting out guidelines that aim to ensure
access to appropriate care in respect of an individual’s
choices, regardless of the condition they are experienc-
ing. There is emphasis on the need for research into
end-of-life care for diseases other than cancer, with a
specific focus on the following areas: advance care plan-
ning; communication about end-of-life issues; under-
standing current care provision; support for carers
(during a patient’s illness and after bereavement); and
care in the last days of life. In light of these recommen-
dations, a study evaluating the experience of the time
leading up to and beyond the death of a person with
MND from multiple perspectives of patients, carers
and bereaved carers was considered necessary. This
article represents one part of a wider project exploring
whether health, social and palliative care services are
meeting the needs of people with MND and their
family carers throughout the entire disease trajectory.
Objectives
Using a qualitative approach we explore the experi-
ences of people with MND, as well as current and
bereaved family carers, of the final stages of the disease.
Participants
A sample of 24 people with MND and 18 current and
10 bereaved family carers were recruited through a
MND Care and Research Centre in Northwest
England that serves a population of 1.8 million (see
Tables 1, 2 and 3). Specialist nurses informed patients
and carers of the study and if they showed an interest in

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370 Palliative Medicine 26(4)

Table 2. Characteristics of current carers Table 3. Characteristics of bereaved carers

ID Carer gender Corresponding patient ID ID Gender Time since bereavement

201 M 27 301 F 10 months

202 F 45 302 F 6 months
203 M 83 303 M 1 year
204 M 73 304 F 2 months
205 F 94 305 M 2 years
206 M 99 306 F 2 years
207 M 54 307 M 5 years
208 F 6 308 F 5 years
209 M 17 309 F 7 years
210 F 9 310 F 2 years
211 M 101
212 F 86
213 M 19 on participants. Confidentiality and anonymity was
214 F 20 ensured through restricted access to data, deletion of
215 M n/a digital files following transcription and removal of any
216 M 103 identifying features.
217 F 3
218 M 46 Data collection
As the aim of the study was to gain a greater under-
standing of the experiences of living with MND, a qual-
taking part, they were subsequently approached by the itative, phenomenological approach was deemed the
research team. Other recruitment strategies included most appropriate method. Narrative interviews have
the placement of notices in relevant newsletters and been utilized in the field of health25 and have previously
the distribution of information sheets by allied health been adopted in studies with people with MND,26,27
professionals who were in regular contact with patients. allowing participants greater control over the telling
Maximum purposive sampling allowed for the inclu- of their story. Interviews ranged from 45 minutes to
sion of a broad range of participants, incorporating a two hours. A list of subjects was developed in the
range of experiences (type of illness, illness duration, event that participants required a prompt. To incorpo-
severity and the Primary Care Trust provider). rate the narratives of patients with severe speech diffi-
culties, interviews were also conducted by email. The
option to complete a personal diary (handwritten, com-
Ethical approval
puter typed, tape recorded or series of face-to-face
National Health Service (NHS) ethical approval interviews) was offered to patients and current carers
was obtained and appropriate NHS Research and so that their experiences of services could be docu-
Development approval was also obtained. Due to the mented for a period of up to one year to provide
vulnerable nature of the participants, great care and insight into how these experiences may have altered
attention was made to meet with the requirements out- over time.
lined in the NHS Research Governance guidelines.23
Participants were fully briefed regarding the study
Analysis
requirements prior to agreeing to take part. Process
consent was obtained, enabling the renegotiation of Thematic analysis was considered the most suitable
consent at different stages of the interview and study approach for organizing the data as a result of its
duration, ensuring sensitivity to participants’ needs.24 highly sensitive and flexible nature.28,29 Transcription
Interviews were conducted in participants’ own homes of the data was carried out and identifying information
or care homes to ensure privacy and access to treatment was removed. QSR Nvivo 8, a computerized data anal-
if necessary. All recruited participants were given assur- ysis tool, was used to assist the analytic process.
ances of their entitlement to withdraw at any stage Transcripts were read through a number of times; ini-
without affecting their care. Emotional support was tial codes were identified, reviewed and revised. From
available through the MND Care and Research these codes, overarching themes were then constructed
Centre, should taking part have a detrimental effect that were considered to capture the ‘richness of the

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Whitehead et al. 371

Table 4. Anxieties

Fears for the future

(1) ‘It’s the not knowing, that’s the most frightening bit, if they could say right you’ve got two years that’s it, I’d think well that’s fair enough, I can
work towards that but it’s the not knowing’ (ID85)(female patient, diagnosed for 156 months)
(2) ‘I suppose the next thing I’m frightened about is that I’m now able to transfer and then that will go and I will be in a hoist and then obviously
you worry about speech and swallowing, and that is massive, and the guy that I am emailing has lost his speech and he’s had to be PEG fed
and that’s really worrying’ (ID46)(female patient, diagnosed for 11 months)
(3) ‘She was frightened of them giving her too strong a patch because she didn’t want to, in her words she didn’t want to go woozy, she wanted
to be aware’ (ID305)(male former carer, 2 years post bereavement)
(4) ‘I mean I know there has been a vast deterioration in the last three months and I keep thinking what’s it going to be like in the next three
months and the three months after that, I don’t know how I will cope, I will cope but I don’t know how I will cope, and I am worried’
(ID218)(male carer of wife diagnosed for 11 months)
(5) ‘I don’t know how it is going to affect me when something happens, you can’t lose somebody after thirty years and not feel it, I don’t quite
know how badly I am going to feel it yet, I know that’s in the future’ (ID215) (male carer of wife diagnosed for 9 months)
(6) ‘My son is quite ok, he seems to be on a level, he’s decided he’s going to live with my brother [. . ..] I think my daughter’s a bit unsure, I think
she’s a bit frightened about where she’s going to go’ (ID3) (female patient, diagnosed for 15 months)
Anxiety of dying
(7) ‘We both knew we couldn’t stop it and we knew what the final outcome was going to be. She said ‘‘I’m not afraid of dying I’m just afraid of
how I’m going to die’’’ (ID305)(male former carer, 2 years post bereavement)

phenomenon.’30 To increase rigour, the initial three
transcripts were analysed first, discussed by three mem-
bers of the research team and a coding frame was created
that was then used to aid the formulation of themes in
the remaining interviews and diary extracts. In order to
ensure that the themes provided an authentic account of
the individuals’ narratives, verification was obtained
from some of the participants; due to the terminal and
debilitating nature of the disease it was not possible to do
this for all involved in the study.
Results
A number of themes relating to experiences of the final
stages of the disease and end-of-life care were identified
and listed as super-ordinate or subthemes. Selected,
anonymized quotations are used to support the identi-
fied themes.
Anxieties
Patients and carers experienced a wide range of fears
and anxieties regarding the final stages of the disease.
The uncertainty of how much time they had left and the
variability in prognoses was anxiety provoking for
many people (Table 4, quote 1). Experiencing ongoing
deterioration and continual loss of abilities was difficult
for patients, leading to a fear of what the future might
hold for them (Table 4, quote 2). There was concern
that as the disease progressed, the loss of physical abil-
ities and communication capabilities would result in
loss of personal control and with it the ability to have
a say in decision making (Table 4, quote 3). Carers also
often voiced worries and fears for the future. These
focused on feelings of uncertainty about what was to
come and whether they would be able to cope as the
disease advanced (Table 4, quote 4). Even though the
death of the patient was anticipated, carers were uncer-
tain how they would respond to bereavement (Table 4,
quote 5). There was concern about how children would
cope with the loss of a parent (Table 4, quote 6), which
also applied to adult children. Participants frequently
expressed fears and anxiety about the actual circum-
stances of death, that is, how it would occur, which
played on their minds throughout the latter stages of
the disease (Table 4, quote 7).
End-of-life decision-making and advance care planning
Some participants felt there was a need for additional
information to help them make decisions regarding
end-of-life care (Table 5, quote 1). One participant
who was on non-invasive ventilation felt she was not
being given enough information regarding her options.
She did not feel that she was being included in decisions
and this was having a detrimental effect on her self-
worth (Table 5, quote 2).
Outlining individuals’ thoughts regarding their pref-
erences for future care was invaluable in giving voice to
people’s wishes, whether this involved the use of recog-
nized advance care planning tools, such as the Preferred
Priorities for Care (PPC) documentation, or simply a
discussion with health care professionals (Table 5,
quote 3, quote 4). Alternatively, decisions regarding pos-
sible interventions were specified so that all involved
were aware of the patient’s preference (Table 5, quote 5).
Advance care planning tools can help to clarify a
patient’s choices and make others aware of them; how-
ever, one participant was not convinced of how useful it
would be to have one (Table 5, quote 6). In addition,

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372 Palliative Medicine 26(4)

Table 5. End-of-life decision making and advance care directives

Care & interventions

(1) ‘And I would like to know how it will be managed and what my choices are’ (ID99) (female patient, diagnosed for 3 months)
(2) ‘I asked about a possible trache and ventilator for the future. He said a definite ‘NO’, he wouldn’t advise it and neither would the other
consultant there. The main reason was expense of care package. But what about what I want!!!! That didn’t seem to matter. He said to
make a longer appointment next time to discuss it further, but that is not for another 6 months. Maybe he hopes by then I won’t be well
enough to discuss it. I feel useless and as if my life isn’t even worth talking about’ (ID85) (female patient, diagnosed for 156 months)
Death
(3) ‘We went to see the GP and because he wants to die at home, he doesn’t want any intervention or anything and the GP was very
supportive, he was, which I must admit that was a big weight off my shoulders’(ID214) (female carer of husband diagnosed for
30 months)
(4) ‘No he [husband] is not going anywhere. He has a preferred place of care [PCC], there is no resuscitation or anything, If he gets
pneumonia or anything, just let it take its course, because I cannot see the point of bringing anybody back to suffer more, this is enough,
this is enough, no more’ (ID210) (female carer of husband diagnosed for 11 months)
(5) ‘What I don’t want, and I have never wanted and certainly up to now is just to be kept alive for no reason so I don’t want that, once I get to
the point where I need to be kept alive artificially, I don’t want that, no point, so I made that clear, with the GP and specialist nurse’ (ID20)
(male patient diagnosed for 30 months)
(6) ‘I was going to write a living will but I’ve decided with my GP now that there’s no point really, if I wrote a living will now you might want to
change your mind, cause this guy decided he wasn’t going to be PEG fed and then his family have put pressure on him to have a PEG put in’
(ID46)(female patient, diagnosed for 11 months)
(7) ‘When I went in the ambulance to (local hospital) I took this [PPC] with me because that’s what Specialist nurse had told me to do, take
that with you [. . .] so when I see the A and E doctor . . .I said, ‘look , can I show you?’ he said ‘Well, what is this, what are you talking
about?’, ‘Well this is what my husband wants to happen’ and I showed him the part where it says in the event of serious collapse, the
patient does not want to resuscitated, but the A and E doctor said ‘‘well its not worth the paper its written on, what are you talking about?’’’
(ID304) (female former carer, 2 months post bereavement)

there were concerns that patient preferences were not
always honoured. One bereaved carer described the
complete disregard of her husband’s PPC by health
professionals when he was admitted to the local hospi-
tal in an emergency (Table 5, quote 7).
Services at the end-of-life stage
Many participants stressed their wish to die at home
(Table 6, quote 1). Numerous carers voiced the view
that admission to hospital at this time was to be
avoided, if at all possible (Table 6, quote 2). Reflect-
ing on the final weeks of their partner’s life, many
bereaved carers reported that the time had been difficult
for all concerned (Table 6, quote 3). A number of
people felt that they had to cope with very little support
from services (Table 6, quote 4). Limited general prac-
titioner (GP) involvement and lack of continuity of care
were frequently cited difficulties at this stage (Table 6,
quote 5). Accessing supportive care was described as
being extremely difficult, and for some people, it was
provided at a very late stage in the disease trajectory
(Table 6, quote 6).
There was criticism of the standard of the service
provided by paid-for home care; staff often appeared
unskilled in the care of the dying. Having experienced
nurses to see to the patient’s needs took some of the
burden from family carers (Table 6, quote 7). Bereaved
carers reported that the burden and strain on them at
this point was excessive. However, the process of orga-
nizing support could be protracted. One bereaved carer
had been offered nursing care in the very final stages of
his wife’s illness. Leaving it to such a late stage to
implement care led to difficulties, as the care staff strug-
gled to become accustomed to the patient’s needs and
the carer found it difficult to become used to a new care
set up (Table 6, quote 8). There was a distinct feeling
amongst bereaved carers that being able to access
more nursing support would have made a real differ-
ence to the end-of-life care and have been of immense
benefit; one bereaved carer believed it could have
enabled her husband’s wish to stay at home to die
(Table 6, quote 9). Another bereaved carer felt that
the intervention of Marie Curie nurses enabled her hus-
band to have a ‘peaceful death’ (Table 6, quote 10).
Impact on carers
There was a view expressed by a number of participants
that, because living with the illness could be so consum-
ing for all involved, death would bring release for
both the patient and their family (Table 7, quote 1).
Some bereaved carers described their thoughts about
the death of their loved one tinged with a sense of
relief that death had occurred before the disease had
progressed to the point of severe disability (Table 7,
quote 2). One participant reflected on her concern
about how she would have cared for her husband had

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Whitehead et al. 373

Table 6. Services at the end-of-life stage

(1) ‘I really do not want to die in hospital and unless it is absolutely necessary’(ID99)(female patient, diagnosed for 3 months)
(2) ‘Then again at the end, and the doctor said ‘shall we get him into hospital?’And I said ‘no’, and (patient) is going (shakes head), I couldn’t let
him go into hospital, knowing how much he hated it and how he was poorly cared for’ (ID306)(female former carer, 2 years post
bereavement)
(3) ‘. . . it was quite traumatic. . . I’d say the last week was awful with the kids and everything’ (ID301)(female former carer, 10 months
post bereavement)
(4) ‘Then right at the end we had the district nurse and she was very good, but, other than that, you are left to your own devices, completely’
(ID306)(female former carer, 2 years post bereavement)
(5) ‘I think the only down side was my own doctor’s surgery, their palliative care is rubbish, because (patient) had this chest infection, and three
different doctors came to him, my daughter is the manager of a big medical practice so she knows, and she said they should always ensure that
the same doctor goes, unless the doctor is off sick or something, so that with palliative, they have got a friend really’ (ID310)(female former
carer, 2 years post bereavement)
(6) ‘And right at the very end of his life, I mean this letter is dated at end of July, well he died beginning of August, they decided that he might
qualify for care which would be free. They had to take it to a hearing, the district nurse had to go to a hearing, and they did a tremendous
amount of work between them to get it set up. . . anyway he got it but he didn’t live long enough to get anything from it, really it should
have been brought out six months before, probably more care at an earlier stage and for longer than that,. . . the continuing care came in
too late’(ID306)(female former carer, 2 years post bereavement)
(7) ‘The district nurses were, they were very good, and perhaps I shouldn’t say, but more professional than the carers because they knew how
to turn him and do things and experienced [. . .] and I could just ring them up and ask them to come if I was bothered. The Marie Curie
nurse was wonderful as well. She was able to do all this, but apparently carers aren’t allowed to touch the oxygen and aren’t familiar with
the feeds. But I suppose they aren’t nurses at the end of the day’ (ID309)(female former carer, 7 years post bereavement)
(8) ‘The night before the Macmillan nurse came to stop, they decided, [. . .] it was going to be three nights a week, one of these ladies would
come and stop through the night so I could get a nights sleep you see cause I was up two or three times a night. . .She came to stop the
night before, but it didn’t work really, . . .she got me up anyway [. . .], I don’t know if it was more than she expected . . ., but it didn’t go
according to plan, I suppose it was new for both of us’ (ID303)( male former carer, 1 year post bereavement)
(9) ‘If there’d have been more people that could have come along and helped me, that knew the illness, I wouldn’t have had to part with him.
But there wasn’t. I think (specialist nurse) checked on that. That would have been lovely. Ideally, if somebody had said, look, we know its
getting towards the end, and somebody will move in with you for part of the day or something because it was imminent. It would have been
so much kinder for him to die in his own surroundings.’ (ID302)(female former carer, 6 months post bereavement)
(10) ‘[Name of husband] did have a peaceful end. The Marie Curie nurse came and stayed for two nights so I could get some rest. She was
allowed to give him the oxygen. And he just died peacefully with all his family, which was wonderful’ (ID308)(female former carer,5 years
post bereavement)

he lived longer (Table 7, quote 3). She was under
immense strain in her attempts to find a suitable place
for him to be cared for and she remarked she had actu-
ally been grateful that he died before it was needed.
One bereaved carer remarked that, towards the final
days, he no longer hoped that his wife’s condition
would stabilize (Table 7, quote 4). Unwilling to watch
his wife if she were to die a protracted or painful
death, another bereaved carer reported having consid-
ered carrying out assisted suicide if it had been required
(Table 7, quote 5).
Following bereavement, many bereaved carers’ stor-
ies hinted at self-criticism and guilt that they might
have let the patient down (Table 7, quote 6).
Thinking back to the care he had provided for his
dying wife, one participant was not convinced that he
had done everything possible for her, until a friend had
put him straight (Table 7, quote 7). Another carer, who
due to exhaustion had failed to wake immediately when
her husband had fallen out of bed, continually worried
about whether she had contributed to his death. This
one event had almost obliterated from her mind all the
excellent care she had provided for him during his ill-
ness (Table 7, quote 8).
Evidently carers experienced complex emotions and
distress during this period (Table 7, quotes 9 and 10).
It is clear, however, that few participants benefitted
from bereavement support (Table 7, quote 10). Not
being provided with support in the early days following
her husband’s death was exceptionally distressing for
one bereaved carer. She stressed the importance of a
sense of closure following the death, particularly
because the withdrawal of services and ending of con-
tacts came across as a stark administrative process
(Table 7, quote 11). One participant made comparisons
to cancer care and the organized support available
through the local hospice for the family of patients
who had died there (Table 7, quote 12).
Euthanasia
One patient described how death would represent a
reprieve for him (Table 8, quote 1). For some, although
euthanasia went against their principles, the thought of

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Table 7. Impact on carers

Release
(1) ‘I’m not being callous because when (wife) died it was a release for her and it was a release for the family’ (ID305) (male former carer, 2
years post bereavement)
(2) ‘I was very thankful that she went as quickly as she did.[. . .] had she deteriorated further and lost all of her abilities and had total nursing
care, all her privacy and dignity would have gone and I was very thankful that that didn’t happen. Not to her’ (ID307) (male former
carer, 5 years post bereavement)
(3) ‘It was worrying me towards the end, because I knew he wasn’t safe and he knew he wasn’t safe and where could he have gone? Ordinary
nursing homes, no way! And so, where could he have gone, if he had gone on for another six months, deteriorating, deteriorating, all the
time and I was feeling then that he wasn’t safe where could he have gone to be looked after properly?’ (ID304) (female former carer, 2
months post bereavement)
(4) ‘Every day you hope there’s a plateau, that things are going to even out and then the last six weeks you begin to hope there isn’t a plateau’
(ID305) (male former carer, 2 years post bereavement)
(5) ‘If it had been necessary as she deteriorated I would have taken her life and I would have gone to prison if necessary, but I would have
ended it for her. Let’s put it that way. Yes, I was very thankful she went when she did’ (ID307) (male former carer, 5 years post
bereavement)
Bereavement
(6) ‘I dropped him off [at the hospice] and I stayed with him all day, and I showed the nurse what I fed and how often I fed him and then
Tuesday morning we caught the train [..] to London, and I think we were probably about two hours, two and half hours into our journey,
and I got the telephone call to say that he had died, so I always think, did it, was it because I had left him there?’ (ID309) (female former
carer, 7 years post bereavement)
(7) ‘Hindsight is wonderful isn’t it? . . .for six months I thought of what I could have done and I’ve got a friend who was a doctor who said ‘‘well
that’s hindsight, at the time did you do everything you could?’’ and I said yes, but thinking back I could have done. . ...but you know that’s
pointless because you can’t go back and do it’ (ID305) (male former carer, 2 years post bereavement)
(8) ‘But. . . I can’t stop thinking about him. . . being on the floor. But you don’t think about what you did. It’s the one thing you didn’t do [that
you think about]. It was awful’ (ID302)(female former carer, 6 months since bereavement)
Need for Support
(9) ‘I have to get over my own problems first, it is still raw’ (ID304)(female former carer, 2 months post bereavement)
(10) ‘. . .it is just over two years, the first eighteen months, two years, they are very hard’ (ID310) (female former carer, 2 years post
bereavement)
(11) ‘When (patient) died (Specialist nurse) never got in touch with me [. . .] I was absolutely devastated about that, I couldn’t get over it,
couldn’t get over it. . .You are just cut off then [after the death], it goes in a drawer, the notes go in a drawer.’ (ID301) (female former
carer, 10 months post bereavement)
(12) ‘But then afterwards you see, there’s not like. . . (hospice) have like an organisation whereby when they’ve died there or, its cancer there
mainly, they have kind of a group. But there’s nothing. It’s just finished, you know,. . .’ (ID302) (female former carer, 6 months post
bereavement)

having an active brain within a dysfunctional body was
disturbing (Table 8, quote 2). One participant felt she
was coping with current levels of disability but hoped
that the disease would not progress too quickly as it
would be too difficult to cope with rapid changes in
functional ability. Her preference was for a quick
death, but from another cause (Table 8, quote 3).
There appeared to be a limit to the amount of deterio-
ration considered bearable. One patient considered if
that limit was reached then euthanasia might be an
acceptable way out (Table 8, quote 4).
Feelings of being a burden to others within the
family could lead to euthanasia appearing like a
viable option. One participant revealed, in a diary,
how her guilt at being reliant on her family had accu-
mulated to the extent of considering desperate action
(Table 8, quote 5). For another, the thought of long-
term survival was terrifying as prolonged living with
the disease was viewed as adding to others’ burdens
(Table 8, quote 6). When asked if there was anything
that could be done to help his condition, the response
was assisted suicide (Table 8, quote 7).
Discussion
A number of the issues regarding care and treatment
received by people and their families approaching the
end of their lives have recently been emphasized by the
UK Department of Health22 and strategies for reform
of end-of-life services have been recommended.23 In an
attempt to remedy the shortage of qualitative studies
investigating end-of-life issues in MND, this study has
recorded the personal perceptions of patients, carers
and bereaved carers during the final stages of the
MND trajectory and explored their experiences of
health, social and palliative care services.
Our findings demonstrate that many people with
MND, and their carers, experience a great deal of

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Whitehead et al. 375

Table 8. Euthanasia
(1) ‘I have said for ages, that if I could go to bed tonight, and not wake up, I’d be happy, I’d take that [. . .] I can feel every second of the day,
the end will be a big relief, even though there is no pain, no physical pain, there is mental pain, and I’m not saying I am looking forward to
the end but when it comes it will be a relief, won’t it?’ (ID20) (male patient, diagnosed for 30 months)
(2) ‘We don’t allow euthanasia and my husband is horrified by the thought of anything like that and quite frankly it’s against my sort of
principle and thinking. But on the other hand you think to yourself, my goodness, you don’t want to just be there like a thing with a well
ticking brain’ (ID32) (female patient, diagnosed for 11 months)
(3) ‘I just hope that well things won’t move on too fast, I can cope with what’s going on and with a bit of luck I’ll have a heart attack and it will
finish me off quickly’ (ID32) (female patient, diagnosed for 11 months)
(4) ‘I dread not being able to communicate. That’s the worst bit I think. I can. . . cope with people looking after my bodily things . . . but I need to be
able to communicate and if I can’t communicate then I’m not quite sure about whether I’d rather or not have some sort of euthanasia by then,
I don’t know’ (ID99) (female patient, diagnosed for 3 months)
(5) ‘Last night I felt suicidal. Realisation of the situation seems to have hit home. I felt that as I was going to die, that I might as well get it over
with and save everyone the hassle and anguish of the next months to come’ (ID99) (female patient, diagnosed for 3 months)
(6) ‘The most frightening aspect of MND is the thought of it like going on for years, like some people do, and I just don’t want to do that, I’d
prefer to just get it over with, let everybody else get on with their life without having me as a burden,. . . so if I can quietly shuttle off this
mortal coil that will do for me. Just quietly drift off’ (ID73) (male patient, diagnosed for 16 months)
(7) ‘Yeah, somebody just give me a load of tablets, yeah’ (ID73) (male patient, diagnosed for 16 months)

anxiety approaching the final stages of the disease.
These anxieties are quite varied and mainly result
from uncertainties surrounding the disease itself (e.g.
length of prognosis). Other sources of anxiety are
common to any terminal disease, including fears of
not having wishes taken into account or worries of
what will happen to the family. It has been suggested
that increased discussion with professionals could
relieve people’s anxieties at this stage.31
The use of advance care planning tools, such as the
PPC documentation, have been widely recognized as a
useful means of enabling people to outline their wishes
regarding end-of-life care and death.32–36 This study
illustrates that such a document is perceived by patients
and carers as an aid in planning for the future and
thereby reducing their anxiety. However, it is evident
that a lack of awareness of the documentation amongst
health care professionals sometimes resulted in difficul-
ties in its implementation, with consequent disregard of
the patient’s wishes. This supports previous findings
demonstrating complications in its use.37
To ensure that people with MND receive optimal
care at the terminal stages of the disease, the need to
introduce palliative care services early in the disease
trajectory has been emphasized.38,39 It appears from
the data, however, that for some people, supportive
services were not introduced until very late on, fre-
quently exacerbating the trauma of caring for a loved
one dying of MND. The wish to remain at home to die
was cited by both patients and carers during the study.
The findings suggest that more needs to be done to
support carers to do this; the application process for
continuing care was regarded as complicated and
lengthy, particularly when the disease has such a
rapid rate of decline. In addition, carers were often reli-
ant on support provided by care agencies, whose staff
were regarded as having limited knowledge and skills in
caring for people with MND. Although nurse-led care
provided by specialist palliative care nurses was deemed
as extremely beneficial in providing the complex nurs-
ing support required at the later stages, access to these
services was not universal, endorsing previous find-
ings.10 Close liaison with the GP and community
health and hospice teams during the palliative phase
has also been advocated;39 however, our findings sug-
gest this does not always take place and indicates a need
for earlier and greater involvement in patient care from
district nurses and GPs.
A number of bereaved carers described the final
stages of the disease as harrowing and revealed that
the experience of caring for someone with MND had
a lasting impact. Watching the suffering of the patient
without being able to alleviate it and the high degree of
strain and pressure they were under led to some carers
perceiving a hastening of death of their loved one as
a release for all involved. Understandably, therefore,
following bereavement, carers were left with mixed
emotions including grief, anger and guilt. There
remains a need to implement bereavement support for
this client group.40–42
Factors associated with a patients’ wish for eutha-
nasia and assisted suicide have included a sense of
hopelessness and perception of burden on family mem-
bers.3,43,44 The study findings suggest that patients do
contemplate assisted suicide as a realistic possibility for
the above reasons. Excessive burden and fatigue were
voiced by many carers and previous research has shown
that patients are very perceptive of this.45,46 As this
study has highlighted a number of gaps in the provision
of palliative care and support for carers at the end of
life, it is likely that carer distress and patient-perceived
burden are exacerbated during this period.

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376
Implications
A framework for end-of-life care has recently outlined
the way in which services can operate more effectively
for people with neurological conditions in the final
stages of their lives.46 The importance of this document
is evidenced by this study, as it is apparent that the
needs of people with MND and their carers during
this period are not currently being adequately met.
Our findings suggest that earlier implementation and
increased, co-ordinated support from palliative, health
and social care services would relieve excessive strain
and fatigue amongst carers of people with MND. More
support from staff trained in palliative care is particu-
larly required. By easing carer strain, such an interven-
tion would perhaps, in turn, decrease patients’
perceived sense of burden and distress and the desire
for assisted suicide expressed by some patients.
Furthermore, our findings support the use of advance
care planning tools in order to reduce levels of anxiety
and enable future planning; the need to raise awareness
of the documentation in all relevant health departments
is also indicated. A lack of guidance for the psycholog-
ical treatment of patients with MND and a need for
these aspects to be incorporated into their physical care
has been previously highlighted.47 Psychological thera-
pies have been advocated as a useful means to enable
patients with other diseases to find meaning and
thereby decrease the sense of hopelessness they may
experience;47–49 from this study it appears that such
an approach might also be beneficial in alleviating the
anxiety and distress experienced by MND patients and
their carers and it should also be incorporated into
bereavement support for carers.
Limitations of the study
These findings cannot claim to be representative of all
people living with MND and are limited to those who
participated in the study, as is the nature with all qual-
itative research. The study was carried out in one geo-
graphical area and the sample was obtained from one
care centre, which further limits the generalizability of
the findings. Furthermore, those who have had negative
experiences of services may have been more motivated
to take part in the study, in order to tell their story,
which could have impacted on the data. Conducting
interviews with patients and carers separately was not
always possible due to participants’ needs or wishes; by
meeting these needs it is possible that some quality in
the data may have been lost.50 As with previous studies
with this client group,20 although home visits or tele-
phone interviews were provided as options, recruiting
current carers remained difficult.
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Palliative Medicine 26(4)
Conclusion
This study has identified a number of issues people with
MND and their carers face in the final stages of MND
and has indicated some ways in which the health, social
and palliative care services could be improved or co-
operate more effectively in order to better meet their
needs.
Acknowledgement
The authors appreciate greatly the contribution of the
patients and carers who took part in this study.
Since this paper was submitted, tragically, Douglas
Mitchell died following a short illness with cancer. He had
a particular interest in MND and his contribution to care and
research in this area will be sadly missed.
Funding
This paper presents independent research commissioned by
the National Institute for Health Research (NIHR) under
its Research for Patient Benefit (RfPB) Programme (Grant
Reference Number PB-PG-0706-10369). The views expressed
are those of the author and not necessarily those of the NHS,
the NIHR or the Department of Health.
Conflict of interest statement
The authors declare that there is no conflict of interest.
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