Symptom Management, Nutrition and Hydration at End-of-Life: A Qualitative Exploration of Patients’, Carers’ and Health Professionals’ Experiences and Further Research Questions

This study explores the experiences of patients, carers and health professionals on symptom management, nutrition and hydration at end-of-life. Thematic analysis was used to identify five themes and further research questions. The study was conducted in the UK and primary data was collected through an online survey. The study highlights the need for better care, communication and the establishment of the most appropriate treatment in palliative care.

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Research 1
Reference details
Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A., & Nelson, A. (2018).
Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of
patients’, carers’ and health professionals’ experiences and further research
questions. BMC palliative care, 17(1), 60. Retrieved from
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0314-4
Title & Abstract
Is the title appropriate? Yes. The title is appropriate because it indicates the problem
being studied. Additionally, the population and methodology
are clearly indicated in the title
Is there a structured abstract? Yes. There is a structured abstract which describes the key
elements of the research such as background, methods,
results, and conclusion.
The Study
Study Type Qualitative
Study Design Qualitative: Phenomenology
Was this Primary or Secondary
research?
Primary research: empirical study
Study Objective or Aims To provide a report on an additional analysis exploring the
experiences and question of the Palliative and end-of-life
care Priority Setting Partnership (PeolcPSP) survey
participants about symptoms, hydration and nutrition.
Setting in which the study was
conducted
The study was conducted in the UK. The PeolcPSP survey
gathered data from respondents across the UK using the
Survey Monkey link.
Inclusion / Exclusion Criteria Inclusion criteria: all residents in the UK willing to

Research 2
participate in the Monkey Survey
How was data collected? Survey
What data was collected? Primary data
How was the data analysed? Thematic analysis
What ethical considerations are
associated with the research?
Anonymity and confidentiality
Findings/Results
Sample size – How many
participants were included in the
research?
1403 respondents
Was the sample size justified? The sample size is not justified neither is there any logical
explanation for the size
Key Findings Five themes were recognized namely pain, breathing
difficulties, terminal anxiety, nutrition and hydration. 190
responses, representing 14% after coding were associated
with symptoms, nutrition and hydration. The respondents
were categorised into patients, current carer, bereaved carer,
professional, volunteer, and member of the public. The
subthemes for pain as perceived by the respondents include
evaluation, control and location of care; the complication in
breathing had control and respiratory secretions as the
subthemes. Additionally, hydration was viewed from the
perspectives of dehydration, threat, artificial hydration and
Liverpool Care Pathway; nutrition as ascertaining the need
and enteral feeding were developed as subthemes.
Discussion & Conclusion
What key points are raised in the
discussion?
A supplementary analysis of the PeolcPSP data obtained

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from the respondents namely patients, carers and medical
professionals were summarised into symptom management
based on evidence, location of care, and expert palliative
care. Under symptom management based on evidence the
bereaved carers were alarmed that pain was not adequately
explored in unconscious patients even those with dementia.
Surprisingly, the analysis shows that some carers are
convinced that health care experts do not examine the pain in
patients diagnosed with dementia or those who are
unconscious, and if pain assessment is done, then it is not
conveyed to the carers. It was also highlighted by some
respondents that an under-prescription of analgesia by some
medical practitioners increased pain in some patients and
that the uncertainty of doctors to administer analgesia to
patients under pain was worrying. Cases of food and drinks
being denied to patients in the last moments of their lives
were also raised by carers.
With regard to the place of care, the participants were
anxious about the best place to manage symptoms of pain,
whether in hospital or at home. The supplementary analysis
indicated that most of the carers were not contented with
pain alleviation at home and at hospital. The respondents
were dissatisfied with services provided by non-specialist
palliative care offered by health care professional in

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symptom management. The need for palliative care is not
often identified in patients of need, hence, the reason why
some of the patients are not referred to specialist palliative
care experts.
What conclusions did the
researchers make?
In-depth research examining the most appropriate
interventions and medications to control symptoms will help
in minimizing stress for both patients and families, and
possibly minimize the harms caused by the current treatment
methods. There should be equality in different places
regarding symptom management so that patients can meet
their death at their place of preference.

Research 5
Appraisal
What are the strengths of the
research?
The paper assesses first-hand experience of healthcare
professionals, carers and patients thus making the
findings original and basis of further research. The
internal validity of the study is proved in three ways
making the findings more reliable.
What are the limitations of the
research?
The researchers just relied on the reports from anonymous
respondents and couldn’t illicit additional information as
is usually expected in a qualitative interview.
How do the study findings
inform clinical practice?
Palliative care is a responsibility of everyone and there is
need for urgent investigation to improve patient care.
Summary – Write your summary of the research (make sure to include all relevant
information and write in your own words)
Symptom management is important in last days of life care, but it is not always managed
effectively causing pain to the patient and distress to the carer. Too much focus on symptom
management at the end of life at the expense of research in palliative care prompted this
research. The study aimed at conducting a supplementary analysis on symptom assessment,
diet and hydration at the life care in last days of life using the experiences of healthcare
experts, patients and carers. The (PeolcPSP) data was used for supplementary analysis. A
total of 1403 respondents were included in the online Monkey Survey with 109 responses
being associated with symptoms, nutrition and hydration after coding. Through a thematic
analysis of the data applying Braun and Clarke’s approach, five themes were ascertained
namely pain, breathing difficulty, anxiety, diet and hydration with most of the feedbacks
being associated with symptoms. The several themes were clustered into three groups for
easy analysis and discussion. These groupings included management of symptoms based on

Research 6
evidence, location of care, and expert palliative care. In the category of evidence-based
symptom management, carers were worried on how pain was managed and assessed in
patients that were not able to talk or patients diagnosed with dementia. Cases of extreme pain
experiences among the dead relatives prior to their death made most of the carers to be
convinced that doctors did not assess the pain in patients with dementia or those not able to
communicate. Others concluded that if at all pain assessment was done to their deceased
relatives at end-of-life, then it was not communicated to the carers. The study also found out
that some carers complained of their patients being denied food and drinks towards their end-
of-life. This issue was strongly condemned by the relatives of the patients because of how
different cultures resonate with food. Further research is needed on hydration, nutrition and
symptom assessment and management.
The supplementary analysis highlighted the place of care due to the weight that was placed
on it by the carers in relation to the end-of-life of patients. Pain alleviation at home or at
hospital made no difference to the carers who were not satisfied with the manner in which
pain was relieved by the non-palliative care. The supplementary analysis could not identify
the exact association between place of care and symptom management due to conflicting
findings of studies on the same.
There is need for better care, communication and the establishment of the most appropriate
treatment in palliative care
Reference details
Beernaert, K., Smets, T., Cohen, J., Verhofstede, R., Costantini, M., Eecloo, K., ... & Deliens,

Research 7
L. (2017). Improving comfort around dying in elderly people: a cluster randomised
controlled trial. The Lancet, 390(10090), 125-134. Retrieved from
https://www.researchgate.net/profile/Kim_Beernaert/publication/317027615_Improving_
comfort_around_dying_in_elderly_people_A_cluster_randomised_controlled_trial/links/
59d24db7a6fdcc181ad60b94/Improving-comfort-around-dying-in-elderly-people-A-
cluster-randomised-controlled-trial.pdf
Title & Abstract
Is the title appropriate? Yes. The title mentions the problem under study, the
population being assessed and the methodology
Is there a structured abstract? Yes. There is a structured abstract that provides details of
the major parts of the study such as background, methods,
findings and interpretation.
The Study
Study Type Quantitative
Study Design Quantitative: Experimental
Was this Primary or Secondary
research?
Primary: empirical study
Study Objective or Aims To examine the usefulness of the Care Programme for the
Last Days of Life (CAREFuL) in enhancing comfort and
quality of care in the last days of death in the old people.
Setting in which the study was
conducted
Flemish Region, Belgium
Inclusion / Exclusion Criteria Inclusion criteria: it was mandatory for hospitals to have a
chronic geriatric ward at a minimum. Approval from each
head of medical and nursing from each ward. Consent of
all patients to be included in the study.
How was data collected? Questionnaire

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What data was collected? Primary data
How was the data analysed? Descriptive statistics
What ethical considerations are
associated with the research?
Confidentiality and beneficence
Findings/Results
Sample size – How many
participants were included in the
research?
10 hospitals clusters
Was the sample size justified? Yes. A sample size of 10 clusters was required to attain
80% power to ascertain an appropriate clinical variation
of 3.2 between the experimental and control group. A
double-sided α = 0.05 was used.
Key Findings/ Results The CAREFuL group recorded an improved CAD-EOLD
than individuals in the non-experimental group
(p<0.0001, 95%CI 2.07 to 6.53). Individual analysis of
items showed a positive progress in the experimental
group for uneasiness, pain, agitation, respiratory
problems, peace and tranquillity (p<0.05), except for
babbling, worry, and crying. There was statistical
insignificant impact for the analysis by patient’s relative
of comfort around dying (CAD-EOLD) (P=0.82, 95%CI -
0.67 to 4.82). Furthermore, symptom management (SM-
EOLD) had no statistically significant effect as examined
by nurses (p=0.58, 95%CI -1.86 to 1.05). The symptoms
and care needs were statistically significant in CAREFuL
than in the placebo group (p=0.009, 95% CI -4.96 to

Research 9
0.71). Analysis of anxiety among patients due to sickness
or treatment improved significantly (p=0.01). Equally,
contentment with care in the CAREFuL group was
significantly worse compared with the control group.
Enhanced gratification of post-intervention care in the
non-experimental group was insignificant but absent in
the experimental group. There was more positive
response in the non-experimental group than in the
CAREGuL group on the carers awareness of the
healthcare provider in charge of his or her patient
(p=0.002). Troublesome mucus was significantly reduced
in the CAREFuL group when symptom burden was
measured as opposed to the control intervention.
However, nausea had no significant variations. Only
Oxygen therapy varied between study groups when
medical interventions were stopped for 48 hours, in which
the CAREFuL group recorded more patients compared to
the control group.
There were positive results in one of the primary results
of the trial; ease during the last days of life, after effective
programme. The symptoms and care needs also exhibited
a positive impact, and a contrary impact on satisfaction
with care of the family carer. Various elements of

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CAREFuL are geared towards improving communication
between the dying patient, relatives, and the healthcare
providers, and to prevent harmful interventions through
onsite training. Moreover, the CAREFuL components
also proved of help to the healthcare providers in
providing care to the dying patients, more so in the
management and assessment of symptoms. There was
also evident a negative impact on contentment with care
during programme implementation. This can be attributed
to enhancement in satisfaction that was experienced in the
control group only, but there was no decrease witnessed
in either case. The interpretation of this outcome is
complex due to the low rate of response in the family
carers, thus warranting additional studies on the same.
CAREFuL had an immense enhancement of easiness in
the last dying hours and symptoms and care needs in the
final moments of life as examined by healthcare
providers.
Discussion & Conclusion
What key points are raised in the
discussion?
Primary trails such as comfort around dying exhibited a
statistically significant effect after successful programme
implementation. Symptoms and care needs had was also
impacted positively, contrary to contentment with family
career with care of the family. Various elements of
CAREFuL are geared towards improving communication

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between the dying patient, relatives, and the healthcare
providers, and to prevent harmful interventions.
CAREFuL had a positive impact on comfort around
around a patient in his/her last days of death as examined
by healthcare providers.
What conclusions did the researchers
make?
The first sufficiently robust cluster randomised controlled
test to assess the usefulness of a program about the end-
of-life times of a dying man in critical geriatric wards.
Randomization and stratification of number of beds
prevented a disparity of baseline between the randomised
groups thus increasing internal validity

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Appraisal
What are the strengths of the
research?
The paper assesses first-hand experience of healthcare
professionals, carers and patients thus making the
findings original and basis of further research. The
internal validity of the anaylsi is proved in three ways
making the findings more reliable.
What are the limitations of the
research?
The implementation of CAREFuL negatively affected
contentment with care, and this is a grievous matter that
should be examined further. The unmasking of the nurses
to their allocation might have been influenced by
ascertainment bias. Additionally, the varying rates of
response among nurses in the two study groups gives an
indication of bias in reporting the findings.
How do the study findings
inform clinical practice?
The CAREFuL programme increases comfort around
dying and has a statistically significant effect on
symptoms and care needs. However, it negatively
affected contentment with care, thus, warranting further
research.
Summary – Write your summary of the research (make sure to include all relevant
information and write in your own words)
There exists evidence of high death rates of the elderly people in settings with substandard
care in the last phase of a dying person. The objective of the study was to examine the
effectiveness of the CAREFuL programme in enhancing the value of care and easines in the
last stages of the old people. The study adopted a cluster randomised controlled trial which
was applied in ten hospitals with acute geriatric wards found in the Flemish Region,

Research 13
Belgium. The program was implemented in randomly assigned hospitals (CAREFuL group
and control group). Primary results were easiness during the last times of death ascertained
by CAD-EOLD and symptom management ascertained by SM-EOLD. A total of 451 beds
from the 10 hospitals were analysed with the CAREFuL group having 132 patients and 109
in the control group. The outcomes from the implementation of the CAREFuL group and
control group were compared. The findings show that better comfort around dying (CAD-
EOLD) was less significant compared to patients who received intervention in the CAREFuL
group. Additionally, when items were analysed separately, the individuals in the CAREFuL
group responded positively to pain, agitation, uneasiness, respiratory problems, peace and
tranquillity with the exception of mourning, babbling and worry. A statistical significant
effect on the patients’ perception of comfort around dying was found during analysis. On the
contrary, symptom management had no statistical significant effect. The CAREFuL group
exhibited a statistically significant effect when examined on symptoms and care needs than
in the control group. These findings are an indication that the implementation of CAREFuL
can lead to enhanced care in the end-of-life days of a patient in acute geriatric hospital wards.

Research 1
References
Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A., & Nelson, A. (2018).
Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of
patients’, carers’ and health professionals’ experiences and further research questions. BMC
palliative care, 17(1), 60. Retrieved from
https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0314-4
Beernaert, K., Smets, T., Cohen, J., Verhofstede, R., Costantini, M., Eecloo, K., ... & Deliens,
L. (2017). Improving comfort around dying in elderly people: a cluster randomised controlled
trial. The Lancet, 390(10090), 125-134. Retrieved from
https://www.researchgate.net/profile/Kim_Beernaert/publication/317027615_Improving_com
fort_around_dying_in_elderly_people_A_cluster_randomised_controlled_trial/links/
59d24db7a6fdcc181ad60b94/Improving-comfort-around-dying-in-elderly-people-A-cluster-
randomised-controlled-trial.pdf