IN PARTNERSHIP WITH
83 unanswered research
questions in palliative
and end of life care
Palliative and end of life care
Priority Setting Partnership (PeolcPSP)
The PeolcPSP identied the research priorities that are
most important to the end users of palliative and end of life
care research, receiving responses from carers, health care
professionals in both palliative and social care and patients.
Communication
1
What are the best ways for
healthcare professionals to tell
patients, carers and families that
a patient’s illness is terminal and
also explain the dying process
compassionately and honestly? Can
literature, including leaets, be helpful?
Who is the best person to provide this
information and communication?
2
How can carers and families
of people at the end of life be
supported to communicate better with
each other and their loved one?
3
What are the benets of
Advance Care Planning and
other approaches to listening to and
incorporating patients’ preferences?
Who should implement this and when?
Managing symptoms and
medications
4
What are the best approaches to
giving medicines, such as morphine,
in a patient’s home, for example using
dierent cannulas such as BD-saf-
T-intimaTM? What are the pros and
cons of training carers, families and
non-palliative professionals, such as
healthcare assistants, to give these
medicines?
5
What is the best way to give
palliative care to patients with
dementia and their carers and families?
This includes communicating about
their diagnosis when they are being
cared for at home or elsewhere?
6
What are the best approaches to
providing pain relief for people
who have communication diculties,
perhaps as a result of their disease,
such as motor neurone disease (MND),
dementia, brain tumour (including
glioblastoma) or head and neck cancer?
7
What are the best ways to manage
the problems associated with
diculty in swallowing, including for
patients with Parkinson’s disease,
motor neurone disease (MND) and
dementia who are at the end of
their life?
8
What are the best ways to manage
drooling and excessive salivation
in patients with diseases such as
motor neurone disease (MND) who are
approaching the end of their life?
9
What are the best ways to manage
respiratory secretions (death rattle)
in patients at the end of life?
10
What are the best ways to assess
and treat pain and discomfort in
people at the end of life with advanced
dementia, Parkinson’s disease and
other diseases that aect cognition
and communication?
11
What are the best ways to make
sure that palliative care patients
receive adequate pain and symptom
relief and which drugs for pain
management are best in terms of side-
eects, such as drowsiness?
12
What are the best ways to
manage acute and/or chronic
breathlessness in patients with cancer
and non-cancer terminal illnesses?
13
What are the pros and cons of
withdrawing MST (morphine
sulphate) in people at the end of life?
14
Which sedative drugs (such as
midazolam, haloperidol and
levomepromazine) are most benecial
for managing agitation at the end of
life and which are best in terms of side-
eects? Do these drugs have an eect
on other symptoms?
15
What are the best ways to
diagnose and treat delirium,
agitation, distress, and restlessness in
people at the end of life?
16
How can distress that is not
related to pain be best assessed
and managed in palliative patients
with dementia, Parkinson’s disease
and other diseases that aect
communication?
17
What are the benets and
limitations (physical, social,
psychological) of providing articial
hydration and nutrition (for example,
a drip) to patients at the end of
life, including those with bowel
obstruction? When should this be
done?
18
What are the best ways of
managing cachexia (weight loss)
in palliative care patients, including
people with cancer or motor neurone
disease (MND)?
19
Is it ever necessary to withdraw
food and water (non-articial
hydration/nutrition)?
20
Is there an appropriate time to
withdraw articial hydration
and nutrition (for example, a drip) and
how can this be done sensitively and
consensually? What is the best way
to communicate with the carers and
family about this process?
21
What is the best diet for
palliative care patients? For
example can maintaining a healthy
weight and eating fatty or protein-rich
foods have an impact on their disease
progression?
22
When should patients be
(deeply) sedated? What are the
benets and limitations of sedation and
what are the best ways of consulting
patients, carers and families?
23
What are the best treatments
for nausea and vomiting
(including for people with bowel
obstruction and those having palliative
chemotherapy)?
24
How is incontinence best
managed in people who are
approaching the end of life (including
those with Parkinson’s disease)?
25
What are the best treatments
for uid retention in patients
approaching the end of life?
26
What are the best ways to
prevent blood clots, deep vein
thrombosis and pulmonary embolism
for patients at the end of life? What
is the role of low molecular weight
heparin (LMWH)?
27
How are steroids best used in
palliative care (dose, duration,
etc) for patients with dierent
conditions, including those with brain
tumours?
28
What are the benets and
limitations of chemotherapy and
radiotherapy for patients approaching
the end of life, including those with
brain tumours? How can health care
professionals best communicate this?
29
What are best ways of managing
constipation, including when
caused by medication, such as opioids?
30
What are the benets and
limitations (physical, social,
psychological) of blood transfusions at
the end of life?
31
What are the best ways to
recognise and treat depression,
anxiety and low mood in people who
are dying? What are the pros and
cons of dierent psychotherapeutic
interventions, including drug therapies,
and when is the best time to provide
them?
32
What are the best ways to treat
dry mouth in patients at the
end of life, including medications and
foods, such as pineapple?
33
What are the best ways to
ensure that people with motor
neurone disease (MND) receive
essential care promptly on diagnosis,
when is the best stage to transition to
palliative care and when should a “just
in case kit” be considered?
34
What are the best models of
palliative care for people who
have learning diculties?
35
What are the best models of
palliative care for people who
have mental health issues?
Support: Carers and
families
36
Does respite for people caring
for a family member or friend
who is dying benet the patient’s care
and the quality of life for both the
patient and carer? What is the best way
to provide respite?
37
How can carers and families be
encouraged to seek support for
themselves at the right time?
38
What information and training
do carers and families need to
provide the best care for their loved
one who is dying?
39
Do people who are dying
and their carers and families
fare better if domestic support with
shopping, washing up, laundry, etc, is
provided?
40
What are the benets, and best
ways, of ensuring patients,
carers, families and friends are given
privacy and not restricted in visiting
hours when palliative care is given in a
hospital, care home or hospice?
41
What are the benets of, and
best approaches to, providing
palliative care in care homes, including
symptom relief, emotional and spiritual
support for patients, carers and
families?
42
Does practical advice for
concerns about housing, nance
and transport, etc, reduce anxiety for
carers and families and increase their
wellbeing?
43
What are the best approaches
to support carers and families
of people at the end of life where there
are substance and/or alcohol addiction
and/or domestic violence issues?
44
What are the best ways to
support children and young
people when someone close to them
is dying or has died? This includes
communicating with them about the
diagnosis and dying process, enabling
them to talk about their experience and
providing bereavement support.
45
What are the best ways and
times to meet the emotional
support needs of patients, carers
and families, including one-on-one
peer support, support groups and
professional counselling?
46
How can patients, carers and
families be supported when the
patient does not want their carers and
families to know their prognosis?
Bereavement
47
Should bereavement support be
made available to all bereaved
people and, if so, how? Should
GPs or other professionals provide
bereavement visits?
48
How can the risk of intense
and long-lasting grief best be
assessed and treated? Can this be
prevented through early bereavement
support?
49
What are the benets of
bereavement support, including
preventing depression and other
illness?
50
When is the best time to
introduce bereavement support,
and for how long? Should it be oered
before the death of a loved one?
How can this support be catered to
individual needs, including access to
24-hour support?
Training and sta support
51
What are the benets of setting
up universal training courses
for volunteers, carers, families and
complementary therapists who have
regular contact with palliative care
patients?
52
Are hospices, hospitals and care
homes providing adequate sta
training to deliver specialist palliative
care, and to what extent does funding
aect this? How can high quality
trained sta be ensured no matter
where the care is being delivered?
53
What are the benets of all
health and social care sta
having training in bereavement
awareness and support? Is this
possible?
Service use: care
coordination
54
What are the best ways to
facilitate communication across
services and between healthcare
professionals, including eective IT
systems, team meetings and remote
technology?
55
Since patients are often seen by
a variety of professionals and
services, would care improve if patients
carried their own medical notes?
56
What are the benets of
increasing the numbers
of palliative clinical nurses/nurse
specialists in hospitals, GP surgeries,
nursing homes and other settings?
57
Who should be part of the
care team (such as chaplains,
occupational therapists, GPs, etc)?
58
When is it appropriate to receive
care virtually (such as via Skype
or video-phone calls)? What are the
benets and potential harms for
patients, carers and families?
59
What are the best ways to
make sure there is continuity
for patients at the end of life, in terms
of the sta that they have contact
with, and does this improve quality
of palliative care? Would having a
designated case-coordinator improve
this process?
60
What are the best care packages
for patients, carers, family
and sta which combine health care
and social care and take individual
prognosis into consideration?
61
Much palliative and end of life
care is provided by charities.
What are the benets and risks of this
and is it sustainable and ecient?
62
Is there evidence that some
volunteer services that provide
support for patients, carers and
families reduce the need for paid
trained sta?
63
Do people at the end of life who
receive support from volunteers,
carers, family or friends, have better
end of life experiences than those who
do not?
Service use: accessing
services
64
How can patients, carers and
families easily access care
services, equipment and statutory
welfare benets? How can people learn
what resources are available and limit
the time it takes to access these?
65
How can palliative care
information and services be
made more accessible to people whose
rst language is not English?
66
How can access to palliative
care services be improved for
everyone regardless of where they are
in the UK?
67
What are the best ways of
providing palliative care outside
of ‘working hours’ to avoid crises and
help patients to stay in their place
of choice? This includes symptom
management, counselling and advice,
GP visits and 24-hour support, for
patients, carers and families?
68
Are outcomes (for example,
symptom control and incidental
prolonging of life) better for terminally
ill patients the sooner palliative care is
introduced and services are accessed?
69
How can people who live alone
and do not have friends or family
nearby receive adequate palliative care,
particularly if they wish to stay in their
homes?
Place and type of care
70
What are the best ways to begin
to deliver palliative care for
patients with non-cancer diseases
(such as chronic obstructive pulmonary
disease (COPD), heart failure, motor
neurone disease (MND), AIDs, multiple
sclerosis, Crohn’s disease and stroke)?
71
Does earlier palliative
intervention for patients with
chronic obstructive pulmonary disease
(COPD) improve quality of life? When is
the right time to intervene to improve
understanding of prognosis, exercise
tolerance, overall progression and
access to pulmonary rehabilitation?
72
What are the core palliative
care services that should be
provided no matter what the patients’
diagnosis is?
73
What are the benets for
patients, carers and families
of day hospices and day therapies
such as complementary therapies,
rehabilitation and physical exercise?
Do they help people stay more
independent? When are the best times
to refer palliative patients to these
services and who benets most?
74
What are the benets, and best
ways, of providing care in the
patient’s home and how can home
care be maintained as long as possible?
Does good co-ordination of services
aect this?
B385c
75
What are the pros and cons
of receiving palliative care in
dierent environments, including at
home, in a hospice, hospital or care
home? Are there certain people and
conditions that each are best for?
76
What are the best models
of palliative care in an acute
setting, such as a hospital?
77
How can the spiritual support
needs of palliative care patients
and their carers and families best be
met in a way that is appropriate for
people of dierent religions and people
who are not religious?
78
Are some palliative care
approaches better than others
(e.g. holistic support, co-ordinated
care, nurse-led care, early intervention)
and for whom?
79
What are the benets of
occupational, beauty, diversion
therapies (such as mindfulness,
meditation, art, dance and gardening)
for palliative care patients? How and
where are these best provided?
80
What are the benets of
alternative therapies (such
as homeopathy) or complementary
therapies (such as acupuncture) for
palliative care patients? How and where
are these best provided?
Understanding dying
81
How can we best determine a
person’s palliative care needs,
particularly for patients with non-
cancer diseases such as motor neurone
disease (MND), Parkinson’s disease,
dementia and heart failure?
82
Do people with various types of
terminal cancer have dierent
palliative care needs? If so, what are
the best ways of managing their
symptoms?
83
What are the signs that a person
will die in the next few days and
how can detection of these signs be
improved? How can families be made
aware?
For more information visit
www.palliativecarepsp.org.uk
@PeolcPSP
