Symptom Management In End-of-Life Care: A Thematic Analysis Of PEOLCPS Data In UK

Inclusion / Exclusion Criteria

Inclusion criteria: all residents in the UK willing to 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 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 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.

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 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,

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

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 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 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 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

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, 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.