Hostname: page-component-cd9895bd7-p9bg8 Total loading time: 0 Render date: 2024-12-23T08:32:50.096Z Has data issue: false hasContentIssue false
  • English
  • Français

A scoping review of palliative care for persons with severe persistent mental illness

Published online by Cambridge University Press:  19 March 2019

Erin E. Donald  and
Kelli I Stajduhar
Erin E. Donald*
Affiliation:
Institute on Aging and Lifelong Health and School of Nursing, University of Victoria, Victoria, BC, Canada
Kelli I Stajduhar
Affiliation:
Institute on Aging and Lifelong Health and School of Nursing, University of Victoria, Victoria, BC, Canada
*
Author for correspondence: Erin E. Donald, Ph.D.(c), R.N., Institute on Aging and Lifelong Health and School of Nursing, University of Victoria, PO Box 1700 STN CSC, Victoria, British Columbia V8W 2Y2, Canada. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.

Method

A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.

Result

Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.

Significance of results

This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

Keywords

Palliative careEnd-of-lifeMental healthSevere mental illnessHealthcare delivery
Type
Review Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 479 - 487
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Arksey, H and O'Malley, L (2005) Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology 8(1), 19–32.Google Scholar
Baker, A (2005) Palliative and end-of-life care in the serious and persistently mentally ill population. Journal of the American Psychiatric Nurses Association 11(5), 298–303.Google Scholar
Bloomer, MJ and O'Brien, AP (2013) Palliative care for the person with a serious mental illness: The need for a partnership approach to care in Australia. Progress in Palliative Care 21(1), 27–31.Google Scholar
Butler, H and O'Brien, AJ (2018) Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study. International Journal of Mental Health Nursing 27(2), 737–746.Google Scholar
Byock, I, Twohig, JS, Merriman, M, et al. (2006) Promoting excellence in end-of-life care: A report on innovative models of palliative care. Journal of Palliative Medicine 9(1), 137–151.Google Scholar
Cai, X, Cram, P, and Li, Y (2011) Origination of medical advance directives among nursing home residents with and without serious mental illness. Psychiatric Services 62(1), 61–66.Google Scholar
Candilis, PJ, Foti, MEG, and Holzer, JC (2004) End-of-life care and mental illness: A model for community psychiatry and beyond. Community Mental Health Journal 40(1), 3–16.Google Scholar
Carlsson, I-M, Blomqvist, M, and Jormfeldt, H (2017) Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: A critical review. International Journal of Qualitative Studies on Health and Well-being 12(suppl. 2), 1–10.Google Scholar
Chochinov, HM, Marten, PJ, Prior, HJ, et al. (2012) Comparative health care use patterns of people with schizophrenia near the end of life: A population-based study in Manitoba, Canada. Schizophrenia Research 141(2–3), 241–246.Google Scholar
Correll, CU, Solmi, M, Veronese, N, et al. (2017) Prevalence, incidence and mortality from cardiovascular disease in patients with pooled and specific severe mental illness: A large-scale meta-analysis of 3,211,768 patients and 113,383,368 controls. World Psychiatry 16(2), 163–180.Google Scholar
Craun, MJ, Watkins, M, and Hefty, A (1997) Hospice care of the psychotic patient. American Journal of Hospice and Palliative Care 14(4), 205–208.Google Scholar
Davie, E (2006) A social work perspective on palliative care for people with mental health problems. European Journal of Palliative Care 13(1), 26–28.Google Scholar
Elie, D, Marino, A, Torres-Platas, SG, et al. (2018) End-of-life care preferences in patients with severe and persistent mental illness and chronic medical conditions: A comparative cross-sectional study. American Journal of Geriatric Psychiatry 26(1), 89–97.Google Scholar
Evenblij, K, Widdershoven, GAM, Onwuteaka-Philipsen, BD, et al. (2016) Palliative care in mental health facilities from the perspective of nurses: A mixed-methods study. Journal of Psychiatric & Mental Health Nursing 23(6/7), 409–418.Google Scholar
Feldman, DB (2017) Stepwise psychosocial palliative care: A new approach to the treatment of posttraumatic stress disorder at the end of life. Journal of Social Work in End-of-Life & Palliative Care 13(2–3), 113–133.Google Scholar
Foti, ME (2003) “Do it your way”: A demonstration project on end-of-life care for persons with serious mental illness. Journal of Palliative Medicine 6(4), 661–669.Google Scholar
Foti, ME, Bartels, SJ, Merriman, MP, et al. (2005a) Medical advance care planning for persons with serious mental illness. Psychiatric Services 56(5), 576–584.Google Scholar
Foti, ME, Bartels, SJ, Van Citters, AD, et al. (2005b). End-of-life treatment preferences of persons with serious mental illness. Psychiatric Services 56(5), 585–591.Google Scholar
Galappathie, N and Khan, ST (2016) End-of-life care in psychiatry: ‘One chance to get it right’. The Psychiatric Bulletin 40(1), 38–40.Google Scholar
Ganzini, L, Socherman, R, Duckart, J, et al. (2010) End-of-life care for veterans with schizophrenia and cancer. Psychiatric Services 61(7), 725–728.Google Scholar
Geppert, CMA, Rabjohn, P, and Vlaskovits, J (2011) To treat or not to treat: Psychosis, palliative care, and ethics at the end-of-life: A case analysis. Psychosomatics 52(2), 178–184.Google Scholar
Greenhalgh, T, Thorne, S, and Malterud, K (2018) Time to challenge the spurious hierarchy of systematic over narrative reviews? European Journal of Clinical Investigation 48(6), e12931.Google Scholar
Griffith, LJ (2007a) Brief supportive psychotherapy for a patient with chronic schizophrenia who is dying. Psychiatry 4(12), 49–54.Google Scholar
Griffith, LJ (2007b) Good palliative care for a patient with schizophrenia dying of emphysema and heart failure. Psychiatry 4(8), 61–64.Google Scholar
Harman, SM (2017) Psychiatric and palliative care in the intensive care unit. Critical Care Clinics 33, 3, 735–743.Google Scholar
Huang, HK, Wang, YW, Hsieh, JG, et al. (2017) Disparity of end-of-life care in cancer patients with and without schizophrenia: A nationwide population-based cohort study. Schizophrenia Research 195, 434–440.Google Scholar
Irwin, KE, Henderson, DC, Knight, HP, et al. (2014) Cancer care for individuals with schizophrenia. Cancer 120(3), 323–334.Google Scholar
Jerwood, J, Phimister, D, Ward, G, et al. (2018) Barriers to palliative care for people with severe mental illness: Exploring the views of clinical staff. European Journal of Palliative Care 25(1), 20–25.Google Scholar
Kelly, BD and Shanley, D (2000) Terminal illness and schizophrenia. Journal of Palliative Care 16(2), 55–57.Google Scholar
Keogh, B and Daly, L (2009) The ethics of conducting research with mental health service users. British Journal of Nursing 18(5), 277–281.Google Scholar
Lavin, K, Davydow, DS, Downey, L, et al. (2017) Effect of psychiatric illness on acute care utilization at end of life from serious medical illness. Journal of Pain and Symptom Management 54(2), 176–185.Google Scholar
Levin, SM and Feldman, MB (1983) Terminal illness in a psychiatric patient--issues and ethics. South African Medical Journal 63(13), 492–494.Google Scholar
Lloyd-Williams, M, Abba, K, and Crowther, J (2014) Supportive and palliative care for patients with chronic mental illness including dementia. Current Opinion in Supportive and Palliative Care 8(3), 303–307.Google Scholar
Martens, PJ, Chochinov, HM, and Prior, HJ (2013) Where and how people with schizophrenia die: A population-based, matched cohort study in Manitoba, Canada. Journal of Clinical Psychiatry 74(6), e551–e557.Google Scholar
McCormack, P and Sharp, DMM (2006) Palliative care for people with mental health problems. European Journal of Palliative Care 13(5), 198–201.Google Scholar
McGrath, P and Forrester, K (2006) Ethico-legal issues in relation to end-of-life care and institutional mental health. Australian Health Review 30(3), 286–297.Google Scholar
McGrath, P and Holewa, H (2004) Mental health and palliative care: Exploring the ideological interface. International Journal of Psychosocial Rehabilitation 9(2).Google Scholar
McGrath, P and Jarrett, V (2007) The problem of stigma during end-of-life care at a psychiatric institution. International Journal of Psychosocial Rehabilitation 11(2), 19–30.Google Scholar
McNamara, B, Same, A, Rosenwax, L, et al. (2018) Palliative care for people with schizophrenia: A qualitative study of an under-serviced group in need. BMC Palliative Care 17, 1–1.Google Scholar
Moini, B and Levenson, JL (2009) A forgotten diagnosis: Simple schizophrenia in a patient with breast cancer. Psychosomatics 50(1), 87–89.Google Scholar
Moore, LW and Miller, M (1999) Initiating research with doubly vulnerable populations. Journal of Advanced Nursing 30(5), 1034–1040.Google Scholar
Morgan, BD (2016) ‘No right place to die': Nursing attitudes and needs in caring for people with serious mental illness at end-of-life. Journal of the American Psychiatric Nurses Association 22(1), 31–42.Google Scholar
Nahm, M (2009) Terminal lucidity in people with mental illness and other mental disability: An overview and implications for possible explanatory models. Journal of Near-Death Studies 28(2), 87–106.Google Scholar
Nahm, M, Greyson, B, Kelly, EW, et al. (2012) Terminal lucidity: A review and a case collection. Archives of Gerontology & Geriatrics 55(1), 138–142.Google Scholar
National Institute of Mental Health (2017) Mental illness. Retrieved from http://www.nimh.nih.gov/health/statistics/prevalence/serious-mental-illness-smi-among-us-adults.shtmlGoogle Scholar
Picot, SA, Glaetzer, KM, and Myhill, KJ (2015) Coordinating end of life care for individuals with a mental illness-A nurse practitioner collaboration. Collegian 22(1), 143–149.Google Scholar
Public Health Agency of Canada (2012) Chapter 1: A report on mental illness in Canada. Retrieved from http://www.phac-aspc.gc.ca/publicat/miic-mmac/chap_1-eng.phpGoogle Scholar
Reimer-Kirkham, S, Stajduhar, KI, Pauly, B, et al. (2016) Death Is a social justice issue: Perspectives on equity-informed palliative care. Advances in Nursing Science 39(4), 293–307.Google Scholar
Rice, TR, Dobry, Y, Novakovic, V, et al. (2012) The importance of patient–provider communication in end-of-life care. Journal of Bioethical Inquiry 9(4), 439–441.Google Scholar
Sawatzky, R, Porterfield, P, Lee, J, et al. (2016) Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care 15(1), 5.Google Scholar
Sawatzky, R, Porterfield, P, Roberts, D, et al. (2017) Embedding a palliative approach in nursing care delivery: An integrated knowledge synthesis. Advances in Nursing Science 40(3), 261–277.Google Scholar
Sweers, K, de Casterlé, BD, Detraux, J, et al. (2013) End-of-life (care) perspectives and expectations of patients with schizophrenia. Archives of Psychiatric Nursing 27(5), 246–252.Google Scholar
Taylor, J, Swetenham, K, Myhill, K, et al. (2012) IMhPaCT: An education strategy for cross-training palliative care and mental health clinicians. International Journal of Palliative Nursing 18(6), 290–294.Google Scholar
Terpstra, TL and Terpstra, TL (2012) Hospice and palliative care for terminally ill individuals with serious and persistent mental illness: Widening the horizons. Journal of Psychosocial Nursing and Mental Health Services 50(9), 28–34.Google Scholar
Terpstra, TL, Williamson, S, and Terpstra, T (2014) Palliative care for terminally ill individuals with schizophrenia. Journal of Psychosocial Nursing and Mental Health Services 52(8), 32–38.Google Scholar
Walker, ER, McGee, RE, and Druss, BG (2015) Mortality in mental disorders and global disease burden implications: A systematic review and meta-analysis. JAMA Psychiatry 72(4), 334–341.Google Scholar
Webber, T (2012) End of life care for people with mental illness. Journal of Ethics in Mental Health 7, 1–4.Google Scholar
Woods, A, Willison, K, Kington, C, et al. (2008) Palliative care for people with severe persistent mental illness: A review of the literature. Canadian Journal of Psychiatry 53(11), 725–736.Google Scholar
World Health Organization (2017) WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/Google Scholar
Wright, DK, Vanderspank-Wright, B, Holmes, D, et al. (2017) Forensic nursing and the palliative approach to care: An empirical nursing ethics analysis. International Journal of Palliative Nursing 23(8), 378–385.Google Scholar