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BMC Palliative Care
Published in: BMC Palliative Care 1/2018

Open Access 01-12-2018 | Research article

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions

Authors: Jessica Baillie, Despina Anagnostou, Stephanie Sivell, Jordan Van Godwin, Anthony Byrne, Annmarie Nelson

Published in: BMC Palliative Care | Issue 1/2018

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Abstract

Background

Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.

Methods

The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach.

Results

Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.

Conclusions

This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
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Literature
1.
2.
Murtagh F, Bausewein C, Verne J, Groeneveld E, Kaloki Y, Higginson I. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014;28(1):49–58.CrossRefPubMed
3.
Etkind S, Bone A, Gomes B, Lovell N, Evans C, Higginson I, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):102.CrossRefPubMedPubMedCentral
4.
5.
6.
Moens K, Higginson I, Harding R. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manag. 2014;48(4):660–77.CrossRef
7.
Stajduhar K, Funk L, Cohen S, Williams A, Bidgood D, Allan D, et al. Bereaved family members’ assessments of the quality of end-of-life care: what is important? J Palliat Care. 2011;27(4):261–9.PubMed
8.
Solano J, Gomes B, Higginson I. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manag. 2006;31(1):58–69.CrossRef
9.
10.
11.
Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148(2):147–59.CrossRefPubMed
12.
13.
Gilbertson-White S, Aouizerat B, Jahan T, Miaskowski C. A review of the literature on multiple symptoms, their predictors, and associated outcomes in patients with advanced cancer. Palliat Support Care. 2011;9(1):81–102.CrossRefPubMed
14.
von Gunten C. Interventions to manage symptoms at the end of life. J Palliat Med. 2005;8(Suppl 1):S88–94.PubMed
15.
16.
17.
18.
19.
20.
Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch. Res Involv Engagem. 2015;1:2.CrossRefPubMedPubMedCentral
21.
Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. Lancet. 2000;355:2037–40.CrossRefPubMed
22.
Chalmers I, Bracken M, Djulbegovic B, Garattini S, Grant J, Gülmezoglu A, et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383:156–65.CrossRefPubMed
23.
24.
Sampson C, Finlay I, Byrne A, Snow V, Nelson A. The practice of palliative care from the perspective of patients and carers. BMJ Support Palliat Care. 2014;4:291–8.CrossRefPubMedPubMedCentral
25.
26.
27.
Heaton J. Secondary analysis of qualitative data: a review of the literature. University of York: Ref: R000222918; 2000.
28.
O'Brien B, Harris I, Beckman T, Reed D, Cook D. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.CrossRefPubMed
29.
30.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.CrossRef
31.
Denscombe M. The good research guide for small-scale social research projects. 4th ed. Maidenhead: Open University Press; 2010.
32.
Armstrong D, Gosling A, Weinman J, Marteau T. The place of inter-rater reliability in qualitative research: an empirical study. Sociology. 1997;31(3):597–606.CrossRef
33.
Barbour R. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? Br Med J. 2001;322:1115.CrossRef
34.
Koch T. Establishing rigour in qualitative research: the decision trail. J Adv Nurs. 1994;19(5):976–86.CrossRefPubMed
35.
Puntillo KA, Arai S, Cohen NH, Gropper MA, Neuhaus J, Paul SM, et al. Symptoms experienced by intensive care unit patients at high risk of dying. Crit Care Med. 2010;38(11):2155.CrossRefPubMedPubMedCentral
36.
Hui D, dos Santos R, Chisholm GB, Bruera E. Symptom expression in the last seven days of life among cancer patients admitted to acute palliative care units. J Pain Symptom Manag. 2015;50(4):488–94.CrossRef
37.
Clark K, Connolly A, Clapham S, Quinsey K, Eagar K, Currow DC. Physical symptoms at the time of dying was diagnosed: a consecutive cohort study to describe the prevalence and intensity of problems experienced by imminently dying palliative care patients by diagnosis and place of care. J Palliat Med. 2016;19(12):1288–95.CrossRefPubMed
38.
Closs S, Dowding D, Allcock N, Hulme C, Keady J, Sampson E, et al. Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study. Health services and delivery research. 2016;No.430.
39.
McGuire D, Kaiser K, Haisfield-Wolfe M, Iyamu F. Pain assessment in non-communicative adult palliative care patients. Nurs Clin N Am. 2016;51(3):397–431.CrossRef
40.
Gardiner C, Gott M, Ingleton C, Hughes P, Winslow M, Bennett M. Attitudes of health care professionals to opioid prescribing in end-of-life care: a qualitative focus group study. J Pain Symptom Manag. 2012;44(2):206–14.CrossRef
41.
Lopez-Saca J, Guzman J, Centero C. A systematic review of the in uence of opioids on advanced cancer patient survival. Curr Opin Support Palliat Care. 2013;7(4):431–7.CrossRef
42.
43.
44.
45.
del Rio M, Shand B, Bonati P, Palma A, Maldonado A, Taboada P, et al. Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff. Psycho-Oncology. 2012;21:913–21.CrossRefPubMed
46.
47.
48.
Homsi J, Walsh D, Rivera N, Rybicki LA, Nelson KA, LeGrand SB, et al. Symptom evaluation in palliative medicine: patient report vs systematic assessment. Support Care Cancer. 2006;14(5):444.CrossRefPubMed
49.
Pidgeon T, Johnson CE, Currow D, Yates P, Banfield M, Lester L, et al. A survey of patients’ experience of pain and other symptoms while receiving care from palliative care services. BMJ Support Palliat Care. 2016;6(3):315–22.CrossRefPubMed
50.
Abernethy AP, Currow DC, Frith P, Fazekas BS, McHugh A, Bui C. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ. 2003;327(7414):523–8.CrossRefPubMedPubMedCentral
51.
Johnson MJ, Kanaan M, Richardson G, Nabb S, Torgerson D, English A, et al. A randomised controlled trial of three or one breathing technique training sessions for breathlessness in people with malignant lung disease. BMC Med. 2015;13(1):213.CrossRefPubMedPubMedCentral
52.
Hardy J, Quinn S, Fazekas B, Plummer J, Eckermann S, Agar M, et al. Randomized, double-blind, placebo-controlled study to assess the efficacy and toxicity of subcutaneous ketamine in the management of cancer pain. J Clin Oncol. 2012;30(29):3611–7.CrossRefPubMed
53.
Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med. 2014;2(12):979–87.CrossRefPubMed
54.
Agar MR, Lawlor PG, Quinn S, et al. Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: a randomized clinical trial. JAMA Intern Med. 2017;177(1):34–42.CrossRefPubMed
55.
Boland JW, Allgar V, Boland EG, Oviasu O, Agar M, Currow DC, et al. Opioids, benzodiazepines, anti-cholinergic load and clinical outcomes in patients with advanced cancer. BMJ Support Palliat Care. 2017;7(Suppl 1):A1–2.
56.
57.
Woodman C, Baillie J, Sivell S. The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence. BMJ Support Palliat Care. 2016;6(4):418–29.CrossRefPubMed
58.
Higginson I, Sarmento V, Calanzani N, Benalia H, Gomes B. Dying at home - is it better: a narrative appraisal of the state of the science. Palliat Med. 2013;27(10):918–24.CrossRefPubMed
59.
Gomes B, Calanzani N, Curiale V, McCrone P, Higginson I. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;6:CD007760.
60.
Gomes B, Calanzani N, Gysels M, Hall S, Higginson I. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013;12:7.CrossRefPubMedPubMedCentral
61.
Higginson I, Sen-Gupta G. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3:287–300.CrossRefPubMed
62.
63.
Harrison N, Cavers D, Campbell C, Murray S. Are UK primary care teams formally identifying patients for palliative care before they die? Br J Gen Pract. 2012;62(598):e344–e52.CrossRefPubMedPubMedCentral
64.
Quill T, Abernethy A. Generalist plus specialist palliative care — creating a more sustainable model. N Engl J Med. 2013;368(13):1173–5.CrossRefPubMed
65.
Blinderman C, Billings J. Comfort care for patients dying in the hospital. N Engl J Med. 2015;373(26):2549–61.CrossRefPubMed
Metadata
Title
Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions
Authors
Jessica Baillie
Despina Anagnostou
Stephanie Sivell
Jordan Van Godwin
Anthony Byrne
Annmarie Nelson
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-018-0314-4

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