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The palliative approach to caring for motor neurone disease: from diagnosis to bereavement

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Abstract

… 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 end.
European Journal for Person Centered Healthcare 2018 Vol 6 Issue 4 pp 675-684
675
ARTICLE
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
Abstract
… 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
end.
Keywords
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
death
Correspondence address
Professor Samar M. Aoun, The Perron Institute, RR Block, QE II Medical Centre, 8 Verdun St, Nedlands, WA 6009,
Australia. E-mail: samar.aoun@perron.uwa.edu.au
Accepted for publication: 6 August 2018
Introduction
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 [3] has outlined twelve principles
associated with a good death and these are set out in Box 1.
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Box 1 12 Principles associated with a good
death [3]
1. To know when death is coming and to understand what can be
expected
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
elsewhere)
6. To have access to information and expertise of whatever kind is
necessary
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
respected
11. To have time to say goodbye and control over other aspects of
timing
12. To be able to leave when it is time to go and not to have life
prolonged pointlessly
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” [4]. 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%) [5]. These non-malignant
diseases are still under-represented in palliative care ten
years on when reported by a previous study [6]. 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. [5] 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 [7]
see Box 2.
Box 2 Essential Characteristics of a Palliative
Approach [8]
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 [8] (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 [9] (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 [10] 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
[11,12].
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Figure 1 The intersection of the principles of hospice, palliative and person-centered care with
practices for people with chronic life-limiting conditions [8]
Modified from Sawatzky et al. [8]
Figure 2 A Palliative approach in MND [9]
Modified from Mitchell & Borasio [9]
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
diagnosis”
“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
been told.”
“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)
(Figure 4).
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 [13]. 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 [13]. 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 [14].
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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 [13]
Patients
N=245
EFNS Guidelines
Diagnosis by neurologist
95%
always
Delivery of diagnosis (2 or more consults)
70%
step-wise
Length of consultation (minutes)
30
45-60 mins
Private space (yes - always/frequently)
96%
always
Avoid interruptions (yes - always/frequently)
91%
always
Patient seen alone
21%
never
Referral to MND Association for information and ongoing
support
40% 73% always
MND Association publications given
24%
always
Diagnosis in writing
16%
recommended
Asked of any previous MND knowledge
43%
always
Follow-up support: Neurologist
41%
always
Follow-up support: MND Association
56%
always
Diagnosis to follow-up (median, weeks)
7
2-4 weeks
Enough information given
43%
always
Diagnosis given with warmth, care & empathy
67%
always
Sufficient time to express emotions
63%
always
Sufficient time to have emotions responded to
62%
always
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 [11]
Box 4 Comments from neurologists [13]
“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
most patients.”
“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
MND care
Continuing on with the theme of education, WHO [15]
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
agencies.
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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 [20], 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 [21] 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 [21]
Overview of a palliative approach for people with MND
Promotion of dignity and quality of life for people with
MND
Pathophysiology of MND
Management of common symptoms experienced by people
with MND
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
MND
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 [21]
“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 [15].
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 [22]. 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
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families still need to be supported physically and
psychologically until then [22].
Box 7 Comments deriving from evaluation of the
MND Advisory Service in Western Australia [22]
“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
etc.”
“The information and support they provide make all the difference.”
“They helped me with all the support and how to cope with a tragic
situation.”
Figure 5 Satisfaction with MND Advisory service
in WA by PwMND and Family Carers (2015-17)
Table 2 Value of MND Advisory service (2017)
[22]
(percent quite a bit/ a lot) PwMND (%)
N=52
Family Carer
(%)
N=43
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
your needs
85.7 92.3
The practical support 88.2 92.7
The emotional support 79.6 84.6
Family Carers: The vital partners in a
palliative approach
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) [25]. As Miles and
Asbridge [26] 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 [24]
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.
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681
Figure 6 MND Family carers expressing need for more support [24]
Reprinted with permission from CUP Aoun et al. [24]
Box 9 Comments from a family carer and a care
advisor [24]
“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
th
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 [29]. 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 [5].
Box 10 Example of an AHD
1.Treatment decision
-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
surgery.
-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
daughter.
Bereavement Support: The Poor Cousin of
Palliative Care
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
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Figure 7 Sources of bereavement support accessed by respondents whose care recipients received
or did not receive palliative care [33]
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’ [5]. 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
death [5].
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 [23], confirming the before
mentioned short involvement of the specialist palliative
care services.
So who provides bereavement support to the bereaved?
As can be seen in Figure 7, based on an Australian
bereavement survey [5], 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 [32]. 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 [34]
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
683
both formal and informal networks working in partnership
and are depicted in Figure 8 as the circles of care and
described by Abel [35] (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 [35]
Modified from Abel [35]
Box 12 Description of ‘circles of care’ according
to Abel [35]
“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.”
Conclusion
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 peoples
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
family carer(s).
Acknowledgements and Conflicts of
Interest
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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... 7 Preparation for EOL Caregivers noted the lack of contact of MND Advisors at EOL, the lack of effective and early palliative care and the need for Advisors to advocate more for palliative care particularly because, in most Australian states, specialist palliative care providers become involved at a late stage in MND care and a palliative approach to care is not well established. 36 This lack of early and effective palliative and EOL care for MND may have been triggering the calls for VAD and caregivers clearly wanted to be able to discuss euthanasia/VAD as an option at EOL, and this may be whether they have access to specialist palliative care or not. VAD is now available in three Australian states: Victoria, legislated for in Western Australia with implementation due to start in July 2021 5 and recently legislated for in Tasmania. ...
... Clear communication throughout the illness trajectory and including the development of advance care planning is central to good care and a good death. [36][37][38] Due to fears about the dying process associated with MND, integrating advance care planning conversations and palliative care can optimise quality of life by relieving symptoms; providing emotional, psychological and spiritual support prebereavement; minimising barriers to a comfortable EOL; and supporting the family postbereavement. 4,36 MND Associations can advocate for earlier and more timely involvement of palliative care services and advisors be trained to hold such conversations on planning ahead with their clients, 36,39 including VAD wishes. ...
... [36][37][38] Due to fears about the dying process associated with MND, integrating advance care planning conversations and palliative care can optimise quality of life by relieving symptoms; providing emotional, psychological and spiritual support prebereavement; minimising barriers to a comfortable EOL; and supporting the family postbereavement. 4,36 MND Associations can advocate for earlier and more timely involvement of palliative care services and advisors be trained to hold such conversations on planning ahead with their clients, 36,39 including VAD wishes. While Box and colleagues, found that UK disability organisations were ambivalent, at best, about assisted dying, similarly in Australia, MND Australia, the peak body, provided a statement that their position is neutral and follows the legal status of each state and therefore 'supports a person's rights in all things that are lawful'. ...
Article
Full-text available
Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.
... It is encouraging to know that palliative care services make the experience of patients and families considerably better in most aspects of care and also that the palliative approach to care provided by general services can be effective [26]. However, the issue remains that palliative care services select patients on the basis of the services' capacity to respond to physical symptoms most commonly found in advanced cancer patients [27], not the broader spectrum of end-of-life need found across the general population [14,28]. ...
... Non-cancer conditions would benefit from a more inclusive palliative approach based on partnerships between specialist and generalist services to ensure that expert end-of-life care is added to, but does not replace, expert care for the illness with which the person is dying [26]. Non-cancer conditions should be given specific attention in new models of integrated end-of-life care. ...
Article
Full-text available
Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.
... Collins et al. [26], however, reported that consumers' perceptions can work against early introduction of palliative care if palliative care is associated in their minds with diminished care, diminished possibility and diminished choice. Aoun [27] proposed early integration of a palliative approach in the care plans of people diagnosed with Motor Neurone Disease (MND), arguing that this 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. Knowledge and expertise need to be extended beyond the domain of specialist palliative care services to include the full scope of health and community-based services providing care, mostly at home. ...
... In cases where palliative care was provided to frail people, their relatives often rated it lower in comparison to the relatives of those with cancer, presumably because palliative care staff lacked familiarity with frailty and the less predictable trajectory of dying. The implication here, that end-of-life care needs to be provided by people familiar with the particular needs of a population, is reinforced for MND [27,34] and intellectual disability [35]. ...
Article
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This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach.
... 3 Psychological symptoms such as depression and anxiety have also been found to be more prevalent for MND caregivers. [4][5][6] Mediating factors for distress include coping styles used for managing emotional demands and carrying out the tasks involved in care, the disease progression, 7 and family functioning. 8 In general, the way caregivers adapt to illness has an impact on their help seeking behaviour and their sense of control of the circumstances they face. ...
Article
Full-text available
Background There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers ( n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.
... The median contact time between palliative care services and patients was only one month. This reinforces the need for a palliative approach to MND care where knowledge and expertise are extended beyond the domain of specialist palliative care services to include the full scope of health and community-based services providing care, mostly at home, in order to meet the extensive range of needs of PwMND and their families, from diagnosis to bereavement (38). ...
Article
Background: Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.
... When investigations are complete, and conclusions established, the sensitive communication of a confirmed diagnosis, with empathy and compassion, (which does not always characterise the breaking of bad news by practitioners [35][36][37][38]) should be followed by the early, and preferentially rapid, referral of the patient and family/carers to the nearest local branch of a national patient advocacy and support group for the LSDs. This action, person-centered by its very nature, is of pivotal clinical significance. ...
Chapter
Financial support, access to respite care, ‘in-home support’ and assistive technologies and access to specialist palliative care for MND patients vary between and within the Australian states and the age groups of patients. While care takes place mainly at home, proportions dying at home vary between 25 and 34 percent. MND multidisciplinary clinics operate in the capital city of each mainland state. Most states have statutory Advance Health Directives, but voluntary assisted dying is only available in the states of Victoria and Western Australia to date. To improve care and advance research, improvements are needed at three levels: the government, the workforce and the community. Public services need to be delivered in a more timely, efficient, integrated and equitable manner. In order to inform future planning and policies for solutions to the growing demand for family/informal care and the associated challenges encountered by family carers, it is essential to integrate family carers’ needs into service planning.
Article
Background: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group. Aim: To describe healthcare utilization at the end of life in patients who died from ALS. Design: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS. Setting: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2). Results: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home. Conclusion: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.
Article
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Background: There is a lack of interventional studies to support the psychosocial wellbeing of people with MND (PwMND) and their family carers. Moreover, their experiences with the models of care already provided by ALS/MND voluntary organisations have not been well investigated.Objectives: To report on a person-centered model of care, the MND Advisory Service, designed to support the needs of PwMND and their family carers, to explore their experiences with the service they received and to identify which aspects of this service were most needed and valued by the service users.Methods: Participants were recruited from the MND Association in Western Australia. PwMND and carers were invited to separately complete anonymous postal surveys (2015-17), using a mixed method design comprising quantitative and open-ended questions.Results: The average response rate across the 3 years was 38% (138 patients and 117 carers); 84-89% of both groups felt more supported and cared for as a result of the service and 79-82% felt they were able to make more informed decisions to manage their health and wellbeing. Ninety percent 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.Conclusions: Two unique features of this service, not provided by other services to the same extent, are the emotional benefit to both groups and the particular focus on the family carers’ needs. 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 families still need to be supported physically and psychologically until then.
Article
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Aims: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care. Design: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis. Setting and participants: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014). Results: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance. Conclusion: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.
Article
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Background Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. Objective To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. Design An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014–15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. Results More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4–10%). The support for family caregivers before and after their relative’s death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3–6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as “not personal” or “generic”, or “just standard practice”. Conclusions Timeliness and consistency of relationship is crucial to building rapport and trust in the service’s ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.
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Much of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A “palliative approach” has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity. We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to “palliative care” and “chronic life-limiting conditions” were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach. The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care. Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.
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Compassionate communities as part of the public health approach to end-of-life care (EoLC) offers the possibility of solving the inequity of the difference in provision of care for those people with incurable cancer and those with non-cancer terminal illnesses. The naturally occurring supportive network surrounding the patient is the starting point for EoLC. The network can provide both hands-on care and support to those providing hands-on care. Healthcare professionals can build much stronger partnerships with these supportive networks and transform EoLC at home. Further possibilities of support can be developed through communities, with implementation of the Compassionate City Charter.
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The diagnosis of Motor Neurone Disease (MND) is devastating for people with MND (PwMND) and their families. The objective of this study is to describe the experiences of PwMND in receiving the diagnosis in order to inform a more person-centred approach to communicating such bad news. The design was an anonymous postal survey facilitated by all MND associations across Australia (2014-15). Survey questions centred on the SPIKES protocol for communicating bad news; each question contained an area for written responses, which were thematically analysed for content. Two hundred and forty-eight responses were received from people with MND (29% response rate). Four themes emerged: challenges in being diagnosed with MND; the emotions experienced; the good and the bad; and links to further information and support. Receiving such a diagnosis requires preparation, forethought, sensitive and individualised care on the part of the neurologist, including where and how the diagnosis is given; the supports required; and timing, amounts and sources of giving information. The emotional reactions of the neurologist also caused a lasting impression on those receiving the diagnosis. This study could form the basis for best practice programs implementing a more person-centred approach to caring for PwMND right from the diagnosis stage. The focus needs to shift on the person's values, preferences, psychosocial and existential concerns in the context of the underlying disease experience and the manner clinical practice is delivered.
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Objectives This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers’ perceptions of adequacy of support, their grief and wellbeing and achievement of their preferred place of death. Method All family caregivers who participated in a stepped wedge cluster trial of the CSNAT intervention in Western Australia (2012-14) and completed the pre-bereavement study (n=322) were invited to take part in a caregiver survey by telephone 4-6 months post-bereavement (2015). The survey measured the adequacy of end of life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. Results The response rate was 66% (152, intervention; 60 control). The intervention group perceived their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d=0.43, p<0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs 63.6%, p=0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (p=0.02). Conclusions The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs pre-bereavement, reinforces the need for palliative care services to effectively support caregivers well before the patient’s death.
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Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.
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Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. Method: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. Results: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. Significance of results: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.