Older adult and family caregiver preferences for emergency department based-palliative care: An experience-based co-design study

Rebecca Wright1,2, Karen Lowton3, Bryan R. Hansen2, Patricia Grocott4
1JCMB, Florence Nightingale Faculty of Nursing and Midwifery, King's College London, 57 Waterloo Road, London SE1 8WA, UK
2Johns Hopkins School of Nursing, 525 N. Wolfe Street, Baltimore, MD 21205, USA
3Department of Sociology, University of Sussex, Freeman Building, Falmer, Brighton BN1 9RH, UK
4Florence Nightingale Faculty of Nursing and Midwifery, King's College London, JCMB, 57 Waterloo Road, London SE1 8WA, UK

Tài liệu tham khảo

World Health Organisation. WHO Definition of Palliative Care, http://www.who.int/cancer/palliative/definition/en/ (2011), accessed 28/10/ 2011). Temel, 2010, Early palliative care for patients with metastatic non–small-cell lung cancer, N. Engl. J. Med., 363, 733, 10.1056/NEJMoa1000678 Wu F, Newman JM, Lasher A, et al. Effects of initiating palliative care consultation in the emergency department on inpatient utilization. J. Palliat. Med. 2013; 16: 1362-1367. DOI: 10.1089/jpm.2012.0352. El-Jawahri, 2011, Does palliative care improve outcomes for patients with incurable illness? a review of the evidence, J. Support. Oncol., 9, 87, 10.1016/j.suponc.2011.03.003 Dunlay, 2016, How to discuss goals of care with patients, Trends Cardiovasc. Med., 26, 36, 10.1016/j.tcm.2015.03.018 Quest, 2011, Research priorities for palliative and end-of-life care in the emergency setting, Acad. Emerg. Med., 18, 10.1111/j.1553-2712.2011.01088.x Lamba, 2014, Integration of palliative care into emergency medicine: the improving palliative care in emergency medicine (IPAL-EM) collaboration, J. Emerg. Med., 46, 264, 10.1016/j.jemermed.2013.08.087 Cooper, 2018, Palliative care in the emergency department: a systematic literature qualitative review and thematic synthesis, Palliat. Med., 32, 1443, 10.1177/0269216318783920 George, 2016, Shared decision making to support the provision of palliative and end-of-life care in the emergency department: a consensus statement and research agenda, Acad. Emerg. Med., 23, 1394, 10.1111/acem.13083 Wong, 2014, What is the incidence of patients with palliative care needs presenting to the emergency department? A critical review, Palliat. Med., 28, 1197, 10.1177/0269216314543318 Smith, 2012, Half of older americans seen in emergency department in last month of life; most admitted to hospital, and many die there, Health Affairs, 31, 1277, 10.1377/hlthaff.2011.0922 Banerjee, 2013, Quality care for older people with urgent and emergency care needs in UK emergency departments, Emerg. Med. J., 30, 699, 10.1136/emermed-2012-202080 Schnitker, 2011, Negative health outcomes and adverse events in older people attending emergency departments: a systematic review, Austr. Emerg. Nurs. J., 14, 141, 10.1016/j.aenj.2011.04.001 National Cancer Intelligence Network. Nearly One In Three Cancers in Elderly are Diagnosed as Emergency Admission to Hospital, http://www.ncin.org.uk/news_and_events/routes_to_diagnosis_press_release_september_2012.aspx (2012, accessed 16/12/ 2012). Green, 2016, They shouldn't be coming to the ED, should they?' A qualitative study of why patients with palliative care needs present to the emergency department, BMJ Support Palliat. Care, 10.1136/bmjspcare-2015-000999 Way, 2008, Learning from older people who use urgent care services, Emerg. Nurse, 16, 20, 10.7748/en2008.05.16.2.20.c8187 Bridges, 2009, Dignity and significance in urgent care: older people's experiences, J. Res. Nurs., 15, 43, 10.1177/1744987109353522 Smith, 2010, Emergency department experiences of acutely symptomatic patients with terminal illness and their family caregivers, J. Pain Sympt. Manag., 39, 972, 10.1016/j.jpainsymman.2009.10.004 Wright nee Blackwell, 2017, Using experience-based co-design with older patients, their families and staff to improve palliative care experiences in the emergency department: a reflective critique on the process and outcomes, Int. J. Nurs. Stud., 68, 83, 10.1016/j.ijnurstu.2017.01.002 Lamba, 2013, Palliative care provision in the emergency department:barriers reported by emergency physicians, J. Palliat. Med., 16, 143, 10.1089/jpm.2012.0402 Shearer, 2014, Understanding emergency department staff needs and perceptions in the provision of palliative care, Emerg. Med. Austr.: EMA, 26, 249, 10.1111/1742-6723.12215 Quest, 2013, Demonstrations of clinical initiatives to improve palliative care in the emergency department: a report from the IPAL-EM initiative, Ann. Emerg. Med., 61, 661, 10.1016/j.annemergmed.2013.01.019 Grudzen, 2016, Emergency department-initiated palliative care in advanced cancer: a randomized clinical trial, JAMA Oncol., 2, 591, 10.1001/jamaoncol.2015.5252 Sleeman KE, Murtagh FEM. Increasing the value of research in palliative care. Palliat. Med.2014; 28: 1165-1166. DOI: 10.1177/0269216314556718. Goodman C, Froggatt K, Mathie E, et al. NIHR School for Social Care Research Methods Review: End of life care. 2012. London: National Institute for Health Research. Blackwell, 2015 Wright, 2017, Emergency department staff priorities for improving palliative care provision for older people: a qualitative study, Palliat. Med., 32, 417, 10.1177/0269216317705789 Robert, 2015, Patients and staff as co-designers of healthcare services, BMJ, 350 The Point of Care Foundation. EBCD: Experience-based co-design toolkit, https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/ (2017), accessed 19th October 2017). Beynon, 2011, How common are palliative care needs among older people who die in the emergency department?, Emerg. Med. J., 28, 491, 10.1136/emj.2009.090019 Addington-Hall, 2002, Research sensitivities to palliative care patients, Eur. J. Cancer Care, 11, 220, 10.1046/j.1365-2354.2002.00343.x Dewing, 2008, Process consent and research with older persons living with dementia, Res. Ethics Rev., 4, 59, 10.1177/174701610800400205 Anderson, 2016, Narrative interviewing, Int. J. Clin. Pharm., 38, 631 Tufford, 2012, Bracketing in qualitative research, Qualit. Soc. Work, 11, 80, 10.1177/1473325010368316 Gale, 2013, Uising the framework method for the analysis of qualitative data in multi-disciplinary health research, BMC Med. Res. Methodol., 13, 10.1186/1471-2288-13-117 Gale, 2013, Using the framework method for the analysis of qualitative data in multi-disciplinary health research, BMC med. Res. Methodol., 13, 117, 10.1186/1471-2288-13-117 Fusch, 2015, Are we there yet? Data saturation in qualitative research, Qualit. Rep., 20, 1408 Walker, 2012, The use of saturation in qualitative research, Can. J. Cardiovasc. Nurs., 22, 37 Froggatt, 2013, Demonstrating quality and rigour in action research: peer education for end-of-life issues Porter, 2007, Validity, trustworthiness and rigour: reasserting realism in qualitative research, J. Adv. Nurs., 60, 79, 10.1111/j.1365-2648.2007.04360.x Gjerberg, 2015, End-of-life care communications and shared decision-making in Norwegian nursing homes–experiences and perspectives of patients and relatives, BMC Geriatr., 15, 103, 10.1186/s12877-015-0096-y Caswell, 2015, Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study, BMC Palliat. Care, 14, 10.1186/s12904-015-0032-0 Philip, 2017, The experiences of patients with advanced cancer and caregivers presenting to emergency departments: a qualitative study, Palliat. Med. Green, 2016, Why do adults with palliative care needs present to the emergency department? A narrative review of the literature, Progr. Palliat. Care, 24, 195, 10.1080/09699260.2015.1115805 Latham, 2014, Emergency department utilization by older adults: a descriptive study, Can. Geriatr. J., 17, 118, 10.5770/cgj.17.108 Naylor, 2008, Transitional care: moving patients from one care setting to another, Am. J. Nurs., 108, 58, 10.1097/01.NAJ.0000336420.34946.3a Smith, 2009, Am I doing the right thing? provider perspectives on improving palliative care in the emergency department, Ann. Emerg. Med., 54, 86, 10.1016/j.annemergmed.2008.08.022 Grudzen, 2011, Does palliative care have a future in the emergency department? Discussions with attending emergency physicians, J. Pain Sympt. Manag. Beckstrand, 2008, Emergency nurses' perceptions of size, frequency, and magnitude of obstacles and supportive behaviors in end-of-life care, J. Emerg. Nurs., 34, 290, 10.1016/j.jen.2007.09.004 Quill, 2013, Generalist plus specialist palliative care–creating a more sustainable model, N. Engl. J. Med., 368, 1173, 10.1056/NEJMp1215620 Snow, 2013, What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study, BMJ Open, 3, 10.1136/bmjopen-2013-003583 Bailey, 2011, Trajectories of end-of-life care in the emergency department, Ann. Emerg. Med., 57, 362, 10.1016/j.annemergmed.2010.10.010 McClain, 2002, Terminally ill patients in the emergency department: a practical overview of end-of-life issues, J. Emerg. Nurs., 28, 515, 10.1067/men.2002.129825 McCallum, 2018, Exploring the quality of the dying and death experience in the emergency department: an integrative literature review, Int. J. Nurs. Stud., 10.1016/j.ijnurstu.2018.05.011 Basol, 2015, The integration of palliative care into the emergency department, Turk. J. Emerg. Med., 15, 100, 10.5505/1304.7361.2015.65983 Donetto, 2014