Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study

BMC Palliative Care - Tập 21 - Trang 1-15 - 2022
Katharine Weetman1,2, Jeremy Dale2, Sarah J. Mitchell3, Claire Ferguson4, Anne M. Finucane5,6, Peter Buckle7, Elizabeth Arnold5, Gemma Clarke8,9, Despoina-Elvira Karakitsiou10, Tracey McConnell10,11, Nikhil Sanyal4, Anna Schuberth8, Georgia Tindle12, Rachel Perry4, Bhajneek Grewal8, Katarzyna A. Patynowska10, John I. MacArtney2,4
1Interactive Studies Unit, Institute of Clinical Sciences, Birmingham Medical School, University of Birmingham, Birmingham, UK
2Unit of Academic Primary Care, Warwick Medical School, University of Warwick, Coventry, UK
3University of Sheffield, Sheffield, UK
4Marie Curie Hospice West Midlands, Solihull, UK
5Marie Curie Hospice Edinburgh, Edinburgh, UK
6The University of Edinburgh School of Health in Social Science, Clinical Psychology, Edinburgh, UK
7Marie Curie Research Voices Group, Marie Curie, England, London, UK
8Marie Curie Hospice Bradford, Bradford, UK
9University of Leeds, Academic Unit of Palliative Care, Leeds, UK
10Marie Curie Hospice Belfast, Belfast, UK
11Queen’s University Belfast School of Nursing and Midwifery, Belfast, UK
12Marie Curie Hospice Newcastle upon Tyne, Newcastle upon Tyne, UK

Tóm tắt

The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms “managed/resolved” (75.2%), and/or the “patient wishes to die/for care at home” (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in “who” will be following up “what” in the discharge letters, and whether described patients’ needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes “complexity” and “complex pain”. The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.

Tài liệu tham khảo

Clark D. From margins to Centre: a review of the history of palliative care in cancer. Lancet Oncol. 2007;8(5):430–8. NIHR. Better Endings: Right care, right place, right time: an independent review of NIHR research on end of life care services. NIHR Dissemination Centre. 2015. [Accessed 21 July 2021]; Available from: https://evidence.nihr.ac.uk/wp-content/uploads/2020/03/Better-endings-FINAL-WEB.pdf. Yardley S. Deconstructing complexity: finding opportunity in problems shared. Palliat Med. 2018;32(6):1039–41 Available from: https://journals.sagepub.com/doi/abs/10.1177/0269216318771239. Marmot M. Health Equity in England: The Marmot Review 10 Years On. The Health Foundation. 2020. [Accessed 21 July 2021]; Available from: https://www.health.org.uk/publications/reports/the-marmot-review-10-years-on. Noonan K, Sallnow L, Richardson H. Ten years of public health palliative care conferences: a critical reflection for the next decade. Prog Palliat Care. 2020;28(2):78–82. Available from. https://doi.org/10.1080/09699260.2019.1705540. Lemos-Dekker N, Borgstrom E, Hoare S. Researching end-of-life care from a social science perspective: Past, present, and future directions. Med Anthropol Theory. 2018;5 [Accessed 21 July 2021]; Available from: http://www.medanthrotheory.org/article/view/5605. Wu S, Volker DL. Live discharge from hospice: a systematic review. J Hosp Palliat Nurs. 2019;21(6):482–8. Tobin J, Rogers A, Winterburn I, et al. Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Support Palliat Care. 2021; [Accessed 26 Jan 2022]; Available from: https://spcare.bmj.com/content/early/2021/02/18/bmjspcare-2020-002719. Finucane AM, Swenson C, MacArtney JI, et al. What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care. BMC Palliat Care. 2021;20(1):18. [Accessed 01 Nov 2021]; Available from. https://doi.org/10.1186/s12904-020-00700-3. Etkind SN, Bone AE, Gomes B, 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. Available from. https://doi.org/10.1186/s12916-017-0860-2. Lupu D, Quigley L, Mehfoud N, et al. The growing demand for hospice and palliative medicine physicians: will the supply keep up? J Pain Symptom Manag. 2018;55(4):1216–23. Bone AE, Evans CJ, Etkind SN, et al. Factors associated with older people’s emergency department attendance towards the end of life: a systematic review. Eur J Public Health. 2018;29(1):67–74. [Accessed 14 July 2021]; Available from. https://doi.org/10.1093/eurpub/cky241. O’Donnell SB, Bone AE, Finucane AM, et al. Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations. Palliat Med. 2021;35(10):1975–84. [Accessed 02 Nov 2022]; Available from. https://doi.org/10.1177/02692163211040981. Department for Health and Social Care. Integration and Innovation: Working together to improve health and social care for all. White paper setting out legislative proposals for a Health and Care Bill. 2021. Cicely Saunders International. You Matter Because You Are You: An action plan for better palliative care. Better care at the end of life. 2021. [Accessed 21 July 2021]; Available from: https://cicelysaundersinternational.org/action-plan-for-palliative-care/. Carduff E, Johnston S, Winstanley C, et al. What does ‘complex’ mean in palliative care? Triangulating qualitative findings from 3 settings. BMC Palliat Care. 2018;17(1):12. Available from. https://doi.org/10.1186/s12904-017-0259-z. Wladkowski SP, Wallace CL. Current practices of live discharge from hospice: social work perspectives. Health Soc Work. 2019;44(1):30–8. Vries K, Wells J, Plaskota M. Evaluation of an admission and discharge programme at a UK specialist palliative day hospice. Int J Palliat Nurs. 2012;18(6):275–81. Eggins S, Slade D. Communication in clinical handover: improving the safety and quality of the patient experience. J Public Health Res. 2015;4(3):666 Available from: https://pubmed.ncbi.nlm.nih.gov/26753165. Killackey T, Lovrics E, Saunders S, et al. Palliative care transitions from acute care to community-based care: A qualitative systematic review of the experiences and perspectives of health care providers. Palliat Med. 2020;34(10):1316–31. [Accessed 07 Feb 2022]; Available from. https://doi.org/10.1177/0269216320947601. Guo P, Pinto C, Edwards B, et al. Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study. Palliat Med. 2021;36(1):124–34. [Accessed 28 Jan 2022]; Available from. https://doi.org/10.1177/02692163211043371. Pesko MF, Gerber LM, Peng TR, Press MJ, et al. Health Serv Res. 2018;53(2):1008–24 [Accessed 11 June 2020]; Available from: https://pubmed.ncbi.nlm.nih.gov/28217974/. Considine J, Berry D, Sprogis SK, Newnham E, Fox K, Darzins P, et al. Understanding the patient experience of early unplanned hospital readmission following acute care discharge: a qualitative descriptive study. BMJ Open. 2020;10(5):e034728 [Accessed 11 June 2020]; Available from: https://bmjopen.bmj.com/content/bmjopen/10/5/e034728.full.pdf. Boddy N, Barclay S, Bashford T, et al. How can communication to GPs at hospital discharge be improved? A systems approach. BJGP Open. 2021; BJGPO.2021.0148. Available from: https://bjgpopen.org/content/bjgpoa/early/2021/12/06/BJGPO.2021.0148.full.pdf. Clark D, Seymour J. Reflections on palliative care. Buckingham: OU Press; 1999. Taylor R. Perspectives on hospice and palliative care though a UK lens. The value of death. 2019 Accessed 07 July 2022. https://commissiononthevalueofdeath.wordpress.com/. Hospice UK. Hospice UK: Impact Report 2019–2020. 2020. The National Council for palliative care. National Survey of patient activity data for specialist palliative care services. 2016. NHS Digital. The PRSB Standards for the Structure and Content of Health and Care Records. Professional Record Standards Body (PRSB); 2018. Available from https://theprsb.org/standards/healthandcarerecords/ .Professional Records Standards Body. eDischarge Summary Standard. 2020. [Accessed 24 June 2020]; Available from: https://theprsb.org/standards/edischargesummary/. Royal College of Physicians. Standards for the clinical structure and content of patient records. 2013. [Accessed 10 June 2020]; Available from: https://www.rcplondon.ac.uk/projects/outputs/standards-clinical-structure-and-content-patient-records. Weetman K, Dale J, Scott E, et al. The Discharge Communication Study: research protocol for a mixed methods study to investigate and triangulate discharge communication experiences of patients, GPs, and hospital professionals, alongside a corresponding discharge letter sample. BMC Health Serv Res. 2019;19(1):825. [Accessed 10 June 2020]; Available from. https://doi.org/10.1186/s12913-019-4612-1. Weetman K, Wong G, Scott E, et al. Improving best practice for patients receiving hospital discharge letters: a realist review. BMJ Open. 2019;9(6):e027588 [Accessed 10 June 2020]; Available from: https://bmjopen.bmj.com/content/bmjopen/9/6/e027588.full.pdf. Weetman K, Dale J, Scott E, et al. Discharge communication study: a realist evaluation of discharge communication experiences of patients, general practitioners and hospital practitioners, alongside a corresponding discharge letter sample. BMJ Open. 2021;11(7):e045465 [Accessed 26 Jan 2022]; Available from: https://bmjopen.bmj.com/content/bmjopen/11/7/e045465.full.pdf. Weetman K, Spencer R, Dale J, et al. What makes a “successful” or “unsuccessful” discharge letter? Hospital clinician and General Practitioner assessments of the quality of discharge letters. BMC Health Serv Res. 2021;21(1):349. [Accessed 18 May 2021]; Available from. https://doi.org/10.1186/s12913-021-06345-z. NHS England. Guidance on the NHS Standard Contract requirements on discharge summaries and clinic letters and on interoperability of clinical IT systems. In: NHS, editor. 1.0 ed2018. Available from https://www.england.nhs.uk/wp-content/uploads/2018/09/interoperability-standard-contract-guidance.pdf Department of Health. Copying letters to patients: good practice guidelines. 2003. Available from https://webarchive.nationalarchives.gov.uk/20120504030618/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4086054.pdf National Institute for Health and Care Excellence (NICE). Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. Clinical guideline [CG138]. 2012. [Accessed 25 Feb 2019]; Available from: https://www.nice.org.uk/guidance/cg138. Weetman K, Dale J, Spencer R, et al. GP perspectives on hospital discharge letters: an interview and focus group study. BJGP Open. 2020; [Accessed 10/06/20]; Available from: https://bjgpopen.org/content/4/2/bjgpopen20X101031. Groene RO, Orrego C, Sunol R, et al. “It’s like two worlds apart”: an analysis of vulnerable patient handover practices at discharge from hospital. BMJ Qual Saf. 2012;21(Suppl 1):i67–75 [Accessed 10 June 2020]; Available from: https://qualitysafety.bmj.com/content/21/Suppl_1/i67.long. Barbour RS. The case for combining qualitative and quantitative approaches in health services research. J Health Serv Res Policy. 1999;4(1):39–43. Tariq S, Woodman J. Using mixed methods in health research. JRSM Short Rep. 2013;4(6):2042533313479197. Johnson RB, Onwuegbuzie AJ. Mixed methods research: a research paradigm whose time has come. Educ Res. 2004;33(7):14–26. Sale JEM, Lohfeld LH, Brazil K. Revisiting the quantitative-qualitative debate: implications for mixed-methods research. Qual Quantity. 2002;36(1):43–53. de Gialdino Irene V., editor Ontological and epistemological foundations of qualitative research [85 paragraphs]. Forum Qualitative Sozialforschung/Forum Qual Soc Res; 2011. Greene JC. Mixed methods in social inquiry. 9th ed. CA, United States: John Wiley & Sons; 2007. Creswell J.W., Plano Clark V.L. Designing and conducting mixed methods research. 3rd ed. SAGE publications; 2017. https://us.sagepub.com/en-us/nam/designing-and-conducting-mixed-methods-research/book241842#preview. McIlfatrick S, Muldrew DHL, Beck E, et al. Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice. BMC Palliat Care. 2019;18(1):57. Available from. https://doi.org/10.1186/s12904-019-0436-3. Gilbert EH, Lowenstein SR, Koziol-McLain J, et al. Chart reviews in emergency medicine research: where are the methods? Ann Emerg Med. 1996;27(3):305–8. Skelton J, Hobbs F. Concordancing: use of language-based research in medical communication. Lancet. 1999;353(9147):108–11. Sinclair J. Corpus, concordance, collocation. Oxford: Oxford University Press; 1991. Anthony L. Antconc. 3.5.7 ed. Tokyo: Waseda University; 2018. Available from http://www.laurenceanthony.net/software Weisser M. Practical Corpus linguistics : an introduction to Corpus-based language analysis. Hoboken: John Wiley & Sons, Incorporated; 2015. Hardie A. Corpus linguistics. In: Allan K, editor. The Routledge handbook of linguistics. New York: Routledge; 2015. p. 502–16. Crawford W, Csomay E. Doing Corpus linguistics. New York: Routledge; 2016. Crystal D. A dictionary of linguistics and phonetics. 6th ed. Oxford: Blackwell Publishing; 2008. Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D, Sher KJ, editors. APA handbook of research methods in psychology. Research designs: Quantitative, qualitative, neuropsychological, and biological. 2. United States: American Psychological Association; 2012. p. 57–71. MacArtney JITN, Dale J. A hermeneutic review of complexity in specialist palliative care: a way of knowing and managing tensions of care. [UNDER REVIEW]; 2021. Farmer T, Robinson K, Elliott SJ, Eyles J. Developing and implementing a triangulation protocol for qualitative health research. Qual Health Res. 2006;16(3):377–94 [Accessed 09 July 2020]; Available from: https://journals.sagepub.com/doi/abs/10.1177/1049732305285708. Flick U. Managing quality in qualitative research. London: SAGE publications; 2007. https://doi.org/10.4135/9781849209441. Begley CM. Using triangulation in nursing research. J Adv Nurs. 1996;24(1):122–8. [Accessed 09 July 2020]; Available from. https://doi.org/10.1046/j.1365-2648.1996.15217.x. O'Cathain A, Murphy E, Nicholl J. The quality of mixed methods studies in health services research. J Health Serv Res Policy. 2008;13(2):92–8. Biber D, Douglas B, Conrad S, et al. Corpus linguistics: investigating language structure and use: Cambridge University Press; 1998. Bartsch S, Evert S. Towards a Firthian notion of collocation. Vernetzungsstrategien Zugriffsstrukturen und automatisch ermittelte Angaben in Internetwörterbüchern. 2014;2(1):48–61 [Accessed 22 June 2019]; Available from: http://pub.ids-mannheim.de/laufend/opal/pdf/opal2014-2.pdf. Mays N, Pope C. Qualitative research in health care: Assessing quality in qualitative research. BMJ. 2000;320(7226):50 [Accessed 09 July 2020]; Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117321/. Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001;358(9280):483–8 [Accessed 09 July 2020]; Available from: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(01)05627-6/fulltext. Pask S, Pinto C, Bristowe K, et al. A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals. Palliat Med. 2018;32(6):1078–90. [Accessed 2022 Jan 2018]; Available from. https://doi.org/10.1177/0269216318757622. Hui D, Bruera E. Models of palliative care delivery for patients with Cancer. J Clin Oncol. 2020;38(9):852–65. Hausner D, Tricou C, Mathews J, et al. Timing of palliative care referral before and after evidence from trials supporting early palliative care. Oncologist. 2021;26(4):332–40 Available from: https://theoncologist.onlinelibrary.wiley.com/doi/abs/10.1002/onco.13625. Nipp RD, El-Jawahri A, Traeger L, et al. Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial. Palliat Med. 2018;32(4):757–66. The Academy of Medical Royal Colleges. Please, write to me: Writing outpatient clinic letters to patients. 2018. [Accessed 10 June 2020]; Available from: https://www.aomrc.org.uk/reports-guidance/please-write-to-me-writing-outpatient-clinic-letters-to-patients-guidance/. Baxter S, Farrell K, Brown C, et al. Where have all the copy letters gone? A review of current practice in professional-patient correspondence. Patient Educ Couns. 2008;71(2):259–64. [Accessed 10 June 2020]; Available from. https://doi.org/10.1016/j.pec.2007.12.002. Royal College of Physicians. Writing letters to patients – what’s the big deal? 2017. Available from: https://www.rcplondon.ac.uk/news/writing-letters-patients-what-s-big-deal. O'Reilly M, Cahill MR, Perry IJ. Writing to patients: a randomised controlled trial. Clin Med. 2006;6(2):178–82 [Accessed 10 June 2020]; Available from: http://www.clinmed.rcpjournal.org/content/6/2/178.full.pdf. PRSB. Standards for digital outpatient letters. 2019. [Accessed 09 July 2020]; Available from: https://theprsb.org/standards/outpatientletterstandard/. Academy of Medical Royal Colleges. Standards for the clinical structure and content of patient records. 2015. [Accessed 19 July 2021]; Available from: https://www.rcplondon.ac.uk/projects/outputs/standards-clinical-structure-and-content-patient-records. Weetman K, MacArtney J. 31 Communication of palliative needs in discharge letters from hospice to primary care. BMJ Support Palliat Care. 2022;12(Suppl 1):A13-A Available from: https://spcare.bmj.com/content/bmjspcare/12/Suppl_1/A13.1.full.pdf.