European Journal for Person Centered Healthcare 2018 Vol 6 Issue 4 pp 675-684
The palliative approach to caring for motor neurone disease:
from diagnosis to bereavement
Samar Aoun BSc (Hons) MPH PhD
Professor of Palliative Care, Palliative Care Unit, School of Psychology and Public Health, La Trobe University,
Melbourne, Victoria & The Perron Institute for Neurological and Translational Science, Perth, Western Australia, Australia
… I would like to discuss my longevity as my fear of life is greater than death … quote from a person with MND.
With no known cure and no effective treatment yet available for Motor Neurone Disease (MND), this article focusses on
quality of life, quality of care and quality of death, the three outcomes of a palliative approach to caring for people with
MND (PwMND) and their family carers. A palliative approach emphasizes the need for a patient and family-centred care
that focuses on the person and not only on the illness, the importance of therapeutic interactions between care providers and
the patient and family, a clear communication all through the illness trajectory and it stresses in particular, the importance of
goals of care and advance care plans.
A palliative approach needs to be integrated into the care plan for PwMND from the time of diagnosis, aiming to
optimise their quality of life by relieving symptoms, providing emotional, psychological and spiritual support pre-
bereavement, minimising barriers to a good death and supporting the family post-bereavement. However, these outcomes
cannot be achieved without the following cornerstones of a palliative approach to MND care which starts with an
empathetic delivery of the diagnosis, the vital support of family carers, the involvement of MND Associations, the
education and training of general health and community care practitioners and the connection between the informal caring
networks with the formal networks, as exemplified by Compassionate Communities policies and practices.
The present article describes a number of evidence-based initiatives from diagnosis to bereavement that need to be
implemented in standard practice in order to improve the health and social care of PwMND and their family carers. The
drive to find a cure should not detract from the fact that PwMND and their families still need to be supported physically and
psychologically until then, by all service providers using a palliative approach, through the continuum of care from start to
Bereavement support, compassionate communities, family carer support, family-centred care, MND/ALS Associations,
MND/ALS care, palliative approach, patient-centered care, person-centered healthcare, public health approach, quality of
Professor Samar M. Aoun, The Perron Institute, RR Block, QE II Medical Centre, 8 Verdun St, Nedlands, WA 6009,
Australia. E-mail: firstname.lastname@example.org
Accepted for publication: 6 August 2018
Motor Neurone Disease (MND), or Amyotrophic Lateral
Sclerosis (ALS), is the name given to a group of diseases
in which the neurons, controlling the muscles that enable
us to move, speak, breathe and swallow, undergo
degeneration and die. These include the muscles of the
arms, legs, back and neck and of speech, swallowing and
breathing. With no nerves to activate them, muscles
gradually weaken and waste and paralysis ensues. The
prevalence rate is 7 per 100,000 and average life
expectancy is about 2.5 years, with no known cure and no
effective treatment currently available [1,2].
Until there is a cure for MND, the focus needs to be on
the quality of life, the quality of care and the quality of
death. Beginning with the end in mind, what are the
elements of a good death that we should strive to achieve?
In this context, Smith  has outlined twelve principles
associated with a good death and these are set out in Box 1.
Caring for MND
Box 1 12 Principles associated with a good
1. To know when death is coming and to understand what can be
2. To be able to retain control of what happens
3. To be afforded dignity and privacy
4. To have control over symptom management
5. To have choice and control over where death occurs (at home or
6. To have access to information and expertise of whatever kind is
7. To have access to any spiritual or emotional support required
8. To have access to hospice care in any location, not only in hospital
9. To have control over who is present and who shares the end of life
10. To be able to issue advance directives which ensure wishes are
11. To have time to say goodbye and control over other aspects of
12. To be able to leave when it is time to go and not to have life
Palliative care and the palliative
approach to care
Palliative care is about achieving a good death through “an
approach that improves the quality of life of patients and
their families facing problems associated with life-
threatening illness, through the prevention and relief of
suffering, early identification and impeccable assessment
and treatment of pain and other problems, physical,
psychosocial and spiritual” . Its key elements are about
providing relief from pain and other distressing symptoms,
affirming life and to regard dying as a normal process,
intending neither to hasten or postpone death and
integrating the psychological and spiritual aspects of
existence into patient care.
We need, however, to take a look at who and how
many people who need palliative care are receiving it. In a
recent Australian bereavement survey, more people with
cancer (64%) had received palliative care in comparison to
non-malignant illnesses (4-10%) . These non-malignant
diseases are still under-represented in palliative care ten
years on when reported by a previous study . In terms of
when people are admitted to specialist palliative care in
Western Australia, for example, MND patients are usually
accepted into specialist palliative care only in the last 3
months of life if they need ongoing treatment for
significant unrelieved symptoms such as breathlessness,
secretion management, pain or non-invasive ventilation.
They are discharged from palliative care if they have
improved or are stable. This is comparable to the short
length of stay with a palliative care service (median of one
month as reported by Aoun et al.  which is not
conducive to building rapport with the family in order to
prepare them for the imminent death of their loved one.
In the developed world, palliative care has become
synonymous with service provision, rather than with its
original purpose, as an ethos and approach to care. Under
this ethos, palliative care begins at the time of the
diagnosis; however in practice, care has tended to be
provided only in the last months and weeks of life, due to
limited resources. However, a palliative approach does not
connect narrowly the provision of care with the diagnosis.
More so, it supports early conversations with patients and
their family carers about their needs and preferences, their
wellbeing and goals of care and anticipatory planning 
see Box 2.
Box 2 Essential Characteristics of a Palliative
• Upstream orientation to care: early on in the illness
trajectory, even as soon as the time of diagnosis.
• Emphasis on anticipatory planning and open conversations
about goals of care
• Adaptation of palliative care knowledge and expertise by
primary care professionals
• Operationalization of a palliative approach through
integration and contextualization within healthcare systems
• Promotion of better service planning, better care and better
outcomes for patients and their family members.
We find, therefore, that a palliative approach is at the
intersection of many principles related to palliative care,
supportive care, end of life care and person-centered care
and practices relating to terminal illnesses  (Figure 1).
In MND, a palliative approach, incorporating these
principles, needs to be manifested in all aspects of disease
progression and care requirements, from diagnosis to
bereavement  (Figure 2).
We may ask, therefore, ‘What are the cornerstones of a
palliative approach in MND starting with imparting the
diagnosis and ending with bereavement support?’
The cornerstones of a palliative
approach to MND care
Receiving the diagnosis
As Doyle and O’Connell  stated: “The way the patient
is told the diagnosis is now recognized to be the first and
one of the most delicate steps in palliative care”. However,
over twenty years later, researchers are still reporting on
the negative experiences of how patients and carers
received this bad news, such as those in Box 3 from a
recent Australian survey of patients and their family carers
European Journal for Person Centered Healthcare 2019 Volume 7 Issue
Figure 1 The intersection of the principles of hospice, palliative and person-centered care with
practices for people with chronic life-limiting conditions 
Modified from Sawatzky et al. 
Figure 2 A Palliative approach in MND 
Modified from Mitchell & Borasio 
Box 3 Patients’ and family carers’ comments on
receiving the diagnosis [11,12]
“Neurologist was clinically thorough but uncaring when providing
diagnosis of MND. Gave brochure for information. Told me I had 3
years left to live. Was left alone in city 2hrs from home after
“I was told very bluntly about my situation and how it would
basically progress. He said if I had any plans do them now”
“I felt the neurologist was very insensitive. Especially saying it is
"terminal" I didn't have enough time to comprehend what I had just
“This diagnosis is (almost) as bad for the partner - I was hardly
considered at all - little or no empathy at all. The neurologists and
other doctors just don't understand the needs of the patient's partner
in order that he (or she) is better able to cope and provide support!!”
In this Australian survey, 36% of patients and family
carers were dissatisfied with the delivery of the diagnosis
and gave low ratings on the ability/skills of their
neurologists to deliver the diagnosis. It was evident that the
longer the patients spent with their neurologists during the
breaking of such bad news, the more they were satisfied
and the higher they rated the neurologists’ ability/skills
(Figure 3). The largest significant differences between
neurologists rated as having high or low skills in delivering
the diagnosis were in four SPIKES domains (a protocol for
breaking bad news): Emotion (responding empathically to
the feelings of patient/family), Knowledge (sharing the
information and suggesting realistic goals), Invitation
(exploring what patient/family are expecting or hoping for
and Strategy (making a plan and following through)
But how well are we doing against international
standards? The comparison between the neurologists'
experiences and those of patients and international
guidelines point to areas in need of improvement (Table 1),
such as longer length of consultation, more referral to
MND Associations, shorter timeframe for follow-up
support from diagnosis, less patients seen alone, diagnosis
given with more care and empathy and with more time for
patient/family to express emotions . Two-thirds of
responding neurologists reported feelings of stress and
anxiety associated with delivering the diagnosis and two-
thirds were interested in further training in responding to
patients' emotions and development of best practice
standards. Box 4 presents a comment reflecting the stress
some neurologists experienced breaking bad news and
another comment reflecting a differing view on empathy
education and training . The important point here is the
need for peak bodies to instigate educational programs and
develop standards and protocols that reflect a more person-
centered approach to MND care at this critical first step of
a traumatic disease journey .
Caring for MND
Table 1 Neurologists' reported practice in delivering the diagnosis compared to the experience of
people with MND from the parallel survey and the EFNS Guidelines 
Diagnosis by neurologist
Delivery of diagnosis (2 or more consults)
Length of consultation (minutes)
Private space (yes - always/frequently)
Avoid interruptions (yes - always/frequently)
Patient seen alone
Referral to MND Association for information and ongoing
40% 73% always
MND Association publications given
Diagnosis in writing
Asked of any previous MND knowledge
Follow-up support: Neurologist
Follow-up support: MND Association
Diagnosis to follow-up (median, weeks)
Enough information given
Diagnosis given with warmth, care & empathy
Sufficient time to express emotions
Sufficient time to have emotions responded to
EFNS= European Federation of Neurological Societies
Figure 3 Ratings of neurologists’ ability/skills
and consultation duration [11,12]
Figure 4 People living with Motor Neurone
Disease ratings of neurologists’ abilities/skills
grouped under the 6 SPIKES domains (11)
Modified from Aoun 
Box 4 Comments from neurologists 
“Having had a migraine after each MND clinic, feeling stressed and
anxious about having so little to offer, I have gradually accepted the
limitations of my skills, and some confidence that assisting the patients
honestly and empathetically, and not ‘abandoning’ them is of value to
“Diagnosing MND is always unpleasant for both patient and physician
… I think many physicians don't deliver the news well but I don't
believe it is something that can be taught … Perhaps we should be
selecting junior doctors to enter physician training on the basis of their
communication skills? The science is easily learned. Trying to teach
empathy, sincerity, and understanding is impossible. Selecting for those
qualities is easy.”
Education in the palliative approach to
Continuing on with the theme of education, WHO 
called for a palliative care approach be adopted by all, not
just specialist healthcare professionals and that “general
palliative care” be provided by primary care professionals
who have a good basic understanding of palliative care
principles. Therefore, palliative care needs to be adopted
by all, not just by professionals specializing in palliative
care, especially considering that the MND patient and
family come into contact with about 22 different medical,
nursing and allied health disciplines, including neurology,
general practice, palliative care, pastoral care,
rehabilitation, gastroenterology, respiratory medicine,
psychiatry, physiotherapy, occupational therapy, speech
pathology, dietitian, complementary therapy and
community support services such as the MND
Associations and other government and non-government
European Journal for Person Centered Healthcare 2019 Volume 7 Issue
Guidelines recommend that clinical care is delivered
through specialised multi-disciplinary clinics (MDC) to
ensure care is well co-ordinated between all these
healthcare disciplines and support organisations. These
specialised MDCs have been shown to provide effective
care that can prolong patients’ survival time and there is
increasing evidence that palliative care integrated into
MDC care leads to improved symptoms and quality of life
of people with MND and their families [16-19].
Education in the palliative approach is especially
pertinent when the cost of the illness is taken into
consideration in addition. Although MND is relatively
uncommon, the associated direct costs (e.g., healthcare,
expensive equipment) and indirect costs (lost productivity
and income) and intangible losses (e.g., independence,
quality of life) contribute to the high cost of this illness to
Society. According to an Australian report , the total
cost of MND was estimated to be $1.13 million per person
with MND in 2015 and the per-person costs of MND are
substantially higher than a number of other diseases.
An educational program to improve the knowledge of
health professionals on a palliative approach in MND care
has been developed, evaluated  and is implemented
annually by the MND Association in Western Australia.
The contents of this program are listed in Box 5.
Box 5 A Palliative Approach to Caring for People
with MND 
• Overview of a palliative approach for people with MND
• Promotion of dignity and quality of life for people with
• Pathophysiology of MND
• Management of common symptoms experienced by people
• Communication and people with MND
• Psychosocial care of people with MND
• Issues for families and caregivers
• Culturally appropriate care for people with MND
• Ethical issues associated with caring for someone with
• The role of health professionals in providing care for
people with MND and their families
The evaluation of the program (n=78) showed that it
increased the knowledge of health professionals regarding
MND, increased their confidence in providing MND care
and promoted more flexible approaches to MND care as
described by these health professionals in Box 6.
Box 6 Comments of health professionals
derived from program evaluation 
“Whilst recently attending a client with end-stage motor neurone I
took extra special care in the way I communicated with her. I gave
extra time to enable a more effective two-way conversation. I think
she really appreciated that.”
“It created a positive framework for change at our workplace and a lot
of in-house learning.”
Therefore, a palliative approach integrated into the care
plan for people with MND from the time of diagnosis can
optimise their quality of life by relieving symptoms,
providing emotional, psychological and spiritual support
pre-bereavement, minimising barriers to a good death and
supporting the family post-bereavement. These outcomes
are only attainable if the skills and knowledge in palliative
care are expanded beyond the realm of specialist palliative
care services to benefit the extensive range of health and
community-based services providing care, mostly at home,
as reiterated by WHO .
The role of MND Associations: Until there
is a cure, there is care
In Australia (and in some other countries), MND advisory
services in every state provide a range of services to
People with MND (PwMND) and family carers, including
information and education for PwMND, family carers and
health professionals, equipment provision, fundraising,
support and advocacy. MND Advisors visit PwMND in
their homes to assess their current needs and to assist their
connection with healthcare services. Experiences of people
with PwMND and their families accessing such case
management-based care from MND advisory services,
have not, to date, been well investigated. However, over
three years (2015-17), The MND Advisory Service in
Western Australia (WA) was evaluated to identify which
aspects of this service were in most need and of value to
the service users, in order to improve the delivery of these
services . Figure 5 shows a consistent high satisfaction,
at about 80%, in informational and supportive services,
with comments from patients and service users reflecting
these satisfaction rates (Box 7).
Table 2 highlights what was most valued by PwMND
and their family carers. Approximately 90% of both groups
found the MND Advisory Service of high value practically
and emotionally, especially the personal contact and time
dedicated to the visit, with 86-88% stating that the service
had met their expectations. Two unique features of this
service, not provided by other services to the same extent,
were the emotional benefit to both groups and the
particular focus on the family carers’ needs. Therefore,
until such person-centered models of care are properly
investigated through the experiences of their users, erratic
changes in care funding will pose a threat to their effective
operation and even viability. The drive to find a cure
should not detract from the fact that PwMND and their
Caring for MND
families still need to be supported physically and
psychologically until then .
Box 7 Comments deriving from evaluation of the
MND Advisory Service in Western Australia 
“I was poorly supported until I contacted MND Assoc; the ‘MND team
took over and have been brilliant.”
“Immediate referral to the MND Association should occur at diagnosis.”
“Prior to their contact I was ‘in the dark’ as to what do; who to contact
“The information and support they provide make all the difference.”
“They helped me with all the support and how to cope with a tragic
Figure 5 Satisfaction with MND Advisory service
in WA by PwMND and Family Carers (2015-17)
Table 2 Value of MND Advisory service (2017)
(percent quite a bit/ a lot) PwMND (%)
Being visited at home 89.3 90
The personal contact 90.2 95.1
The time dedicated to the visit 91.7 95.1
The proactive approach anticipating
The practical support 88.2 92.7
The emotional support 79.6 84.6
Family Carers: The vital partners in a
With most of the care and support occurring at home,
family carers of PwMND endure adverse effects on their
physical, emotional and social wellbeing and they often
describe their caring experiences as unrelenting due to the
progressive nature of the disease and the relative
hopelessness with respect to recovery [23,24] (Box 8).
Box 8 Experiences of MND family carers [23,24]
“I think you’re traumatised, quite frankly. All the symptoms of trauma -
numb[ness] and shock and all of those things.”
“I turned around and I said, ‘Give me a kiss’ and I thought at the time he
was denying me a kiss, but I realise now he had no muscles in his face
to kiss me with. I backed off and thought, it’s not that you’ve lost
feelings for me; it’s just that you can’t.”
“They should bring in euthanasia - you wouldn't put a dog through what
MND does - I find it very difficult. It really rips you apart.”
“[having] ability to discuss fears and especially a lengthy dying process
with psychological support. The devastating impact on my husband and
how he would cope. I would like to discuss my longevity as my fear of
life is greater than death.”
“[After the death] You go from having a whole army of people; then it
is just you; You’re just left alone.”
To ameliorate some of the negative effects of
caregiving, family carers need support in their dual role:
support to enable them to care for the patient (their ‘co-
worker’ role) and also direct support for their own health
and wellbeing (their ‘client’ role) . As Miles and
Asbridge  described family carers, they are vital
partners in increasing the person-centeredness of health
and social care systems.
To support carers in their dual role, a person-centered
validated tool, the Carer Support Needs Assessment Tool
(CSNAT), opens the opportunity for systematically
holding conversations about the practical, psychological,
spiritual and existential needs of carers in supporting their
care recipients and helping themselves. An intervention
using the CSNAT was trialled in Western Australia 
and the highest support priorities reported by MND carers
were: knowing what to expect in the future, knowing who
to contact if concerned, equipment to help care and dealing
with feelings and worries (Figure 6). For example, for the
first highest priority “knowing what to expect in the
future”, discussions with service providers were around
end-of-life issues, advance health directives, future care
and the role of palliative care. Such a seemingly difficult
topic to broach can be facilitated by the CSNAT process of
regular conversations. This, and other benefits from the
family carer and service provider perspective, are
presented in Box 9.
In general, the CSNAT had significant benefits before
and after bereavement. It significantly reduced family carer
strain and distress during the caregiving period and had a
positive impact on perceived adequacy of support of
bereaved family carers and achievement of preferred place
of death according to carers [27,28]. The benefits gained
by carers in being engaged in early and direct assessment
of their support needs before bereavement re-inforce the
need for palliative care services to effectively support
carers well before the patient’s death.
European Journal for Person Centered Healthcare 2019 Volume 7 Issue
Figure 6 MND Family carers expressing need for more support 
Reprinted with permission from CUP Aoun et al. 
Box 9 Comments from a family carer and a care
“One of the hardest issues to discuss is EOL issues. It, the form,
focussed my mind on the need to discuss this and I ended up talking
to people - I spoke to a counsellor about EOL as a direct result of
going through the survey.” (MND family carer)
“I think it is interesting to see how carer needs change over time and
at their needs don’t always follow the same trajectory as the person
with MND … sometimes what I perceive as a very stressful time for
the carer they seem to sail through, whereas something minor (for
me) at another time can unleash a great emotional tide for the carer.”
(MND Care advisor)
End of Life Care: Anticipatory Planning
One of the essential characteristics of a palliative approach
is an emphasis on anticipatory planning and open
conversations about goals of care and advance care plans.
Decisions for end-of-life care, including the use, and
withdrawal, of ventilation and nutrition, need to be
discussed with the patient and family proactively, in
advance of deterioration . Around the end of life, it is
common to have people with MND refuse life-sustaining
treatment such as non-invasive ventilation, PEG
gastrostomy feeding, medication, insulin or turning off
pacemakers and implanted defibrillators. Therefore, it is
important that PwMND and their family determine their
preferences and record their decisions in documents such
as an Advance Health Directive (AHD) or Advance Care
Plan (ACP). An AHD example is presented in Box 10.
Unfortunately, the uptake of such documents is still low
worldwide, 10-25%, although those who received
palliative care were 2-3 times more likely to have an ACP
or AHD in place .
Box 10 Example of an AHD
-In the following circumstances:
In the event of a cardiac arrest, stroke or respiratory arrest, or I
require artificial feeding through a naso gastric tube.
-I consent/ refuse consent to the following treatment (cross out and
initial one of these options):
Any form of active intervention this being CPR, anticoagulant
therapy, artificial feeding, IV fluids or a tracheostomy.
2. Treatment decision
-in the following circumstances:
At this time in my disease if I have a chest infection, pneumonia or
aspiration pneumonia or I require a PEG feeding tube, emergency
-I consent/ refuse consent to the following treatment (cross out and
initial one of these options):
To a hospital admission for aggressive antibiotic treatment, and
PEG insertion only if I’m not in the palliative or end of life stage of
my disease. Emergency surgery only in consultation with my
Bereavement Support: The Poor Cousin of
The last cornerstone of a palliative approach is
bereavement support. Nevertheless, one of the modern
public health paradoxes is the neglect of the bereaved
(though bereavement is a universal experience). Palliative
care standards propose that bereavement support should
Caring for MND
Figure 7 Sources of bereavement support accessed by respondents whose care recipients received
or did not receive palliative care 
be matched to risk and need [30,31]. However, studies in
many countries demonstrate that palliative care services
continue to adopt a generic approach in offering support
to bereaved families and therefore support is not tailored
to their needs. In an Australian survey, only half of the
bereaved reported they had a follow up contact from the
palliative care service at 3-6 weeks and a quarter had a
follow-up at 6 months. The feedback underlined the
limited helpfulness of the blanket approach to
bereavement support, which was often described as ‘not
personal’ or ‘just standard practice’ . Therefore, this
support is seldom as intentional or targeted as it should
be, particularly when the bereavement care phase is
separated from the care and support provided prior to the
An Australian study of MND family carers reported
that half of participants did not recall receiving offers of
bereavement support and over one-third of the sample met
criteria for prolonged grief disorder, a much higher
proportion than the general population estimate of 10%.
On average, palliative care services were received less than
2 months before patient death , confirming the before
mentioned short involvement of the specialist palliative
So who provides bereavement support to the bereaved?
As can be seen in Figure 7, based on an Australian
bereavement survey , the vast majority of the bereaved
accessed support from family and friends, followed by
funeral providers and general practitioners, whether the
care recipients used or did not use palliative care services.
Therefore, much of this support is provided in informal
and other community settings by a range of people already
involved in the everyday lives of those recently bereaved.
A public health approach to bereavement care is needed to
support ‘everyday assets’ in the community who care for
the majority of the bereaved, without the over-reach from
professional services . The data from this survey
provided empirical evidence for building a community’s
capacity to provide the type of social and practical support
advocated by the Compassionate Communities approach
which relies on identifying and developing local caring
networks around the dying person and their family [33,34].
Box 11 Compassionate Communities 
Publicly encourage, facilitate, support and celebrates care for one
another during life’s most testing moments and experiences, especially
those pertaining to life-threatening and life-limiting illness, chronic
disability, frail ageing and dementia, death in childhood, grief and
bereavement and the trials and burdens of long term care.
It is a way of thinking about how care is provided to people who are
dying. It relies on the identification and development of caring
networks, around the person and their carer, extending the concept of
person-centred care to network focused care.
It is a natural part of life. It is about acknowledging that care for one
another at times of crisis and loss is not only a task for health and social
services but is everyone’s responsibility.
Box 11 provides more detail on the ethos of the
Compassionate Communities approach to end-of-life care
and bereavement support. The caring networks consist of
European Journal for Person Centered Healthcare 2019 Volume 7 Issue
both formal and informal networks working in partnership
and are depicted in Figure 8 as the circles of care and
described by Abel  (Box 11).
Such caring networks are the backbone of care outside
the hospital setting, where most of the MND care takes
place, in the community.
Figure 8 Circles of Care 
Modified from Abel 
Box 12 Description of ‘circles of care’ according
to Abel 
“Circles of care is a way of viewing the overall networks that
focuses not just on the patient, but on the main carer and the caring
network. Failure to engage with and trust the caring network not
only misses an important opportunity for enriching life for patient
and carers, it may actually cause significant harm which can
exacerbate bereavement reactions.”
While much discourse has tended to focus on specialist
palliative care, there is a limit to the resources available for
providing specialist palliative care to all life-limiting
illnesses. Hence, it is important to advocate for a more
realistic palliative approach to care that is more achievable
from diagnosis to bereavement, through better education of
all service providers, improved support for family carers,
better resourcing of MND Associations and consistent
anticipatory planning and bereavement support. The way
forward for best practice is about implementing a more
person-centered approach to caring for PwMND from the
start to the end of the disease trajectory as exemplified by
the palliative approach. The focus needs to shift on the
patients’ and carers’ values, preferences, psychosocial and
existential concerns in the context of the underlying
disease experience and the manner clinical practice is
delivered. This person-centered approach is even more
vital in a disease such as MND, where there is at present
no hope for a cure yet and where looking after people’s
personhood, in supporting and comforting rather than just
treating, is what matters most in the relatively short span of
this fatal disease. Extending the concept of person-centered
care to network-focused care is vital for the identification
and development of sustainable caring networks before and
after bereavement, around the person with MND and their
Acknowledgements and Conflicts of
This paper is based on a lecture delivered by the author at
the Cicely Saunders Institute of Palliative Care, Policy and
Rehabilitation, King’s College London, on 30 May 2018.
The author declares no conflicts of interest.
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