End of Life Care: What is Important for Me and for Us
A Review of Recent UK Strategy and Policy Documents and their Implications for Chaplains
Keywords:end-of-life, dying, choice, community, family, spirituality, chaplaincy, holistic
This article reviews some recent UK strategy and policy documents about building a “national choice offer” to enable end of life care to be delivered at home, and encouraging the formation of supportive communities. Notably, with the implicit assumption that planned choice is sufficient for end of life care, the contribution of healthcare chaplaincy is neglected. The article explores the implications for healthcare chaplains, how chaplains can help to build up compassionate communities, and some practical aspects of community support for those of faith and no faith through initiatives for parish support.
Ben-Galim, D., and A. Silim (2013) Institute for Public Policy Research: The Sandwich Generation, Older Women Balancing Work and Care. https://tinyurl.com/n6tnvvx
Bevans, M. F., and E. M. Sternberg (2012) “Caregiving Burden, Stress and Health Effects Among Family Caregivers of Adult Cancer Patients”. JAMA 304(4): 398–403. https://doi.org/10.1001/jama.2012.29
Bowman, G. (1998) Dying, Grieving, Faith and Family: A Pastoral Care Approach. New York: Haworth Press.
Brayne, S., and P. Fenwick (2008) Nearing the End of Life: A Guide for Relatives and Friends of the Dying. http://www.rcpsych.ac.uk/pdf/Fenwick%20Nearing%20the%20End%20of%20Life%20Guide.x.pdf
Brodaty, H., and M. Donkin (2009) “Family Caregivers of People with Dementia”. Dialogues in Clinical Neuroscience 11(2): 217–28.
Caring for the Spirit Strategy (2004) Consultative Proposals for a Minimum Data Set for Spiritual Healthcare. http://nhs-chaplaincy-spiritualcare.org.uk/Draft_Minimum_Data_Set_270704.pdf
Catholic Bishops’ Conference of England and Wales (2010) A Practical Guide to the Spiritual Care of the Dying Person. London: Catholic Truth Society.
—(2012) Supporting Families: Celebrating Family Projects 2008–2011. https://tinyurl.com/kyqwnbu
Centre for Social Justice (2014) Breakthrough Britain 2015, Fully Committed? How a Government Could Reverse Family Breakdown. https://tinyurl.com/k8fyjqm
Chambers, P., and J. Phillips (2009) “Working across the Interface of Formal and Informal Care of Older People”. In Effective Practice in Health, Social Care and Criminal Justice: A Partnership Approach, eds. R. Carnwell and J. Buchanan, 96–110. Berkshire: Open University Press.
Choice in End of Life Care Programme Board (2015) What’s Important To Me: A Review of Choice in End of Life Care: Review. Annex A. Annex B. https://www.gov.uk/government/publications/choice-in-end-of-life-care
Cobb, M. (2004) “The Location and Identity of Chaplains: A Contextual Model”. Scottish Journal of Healthcare Chaplaincy 7(2): 10–15.
Dein, S., J. Swinton and S. Q. Abbas (2013) “Theodicy and End-of-Life Care”. Journal of Social Work in End-of-Life and Palliative Care 9: 191–208. https://doi.org/10.1080/15524256.2013.794056
Department of Health (2008) End of Life Care Strategy. http://www.cpa.org.uk/cpa/End_of_Life_Care_Strategy.pdf
Dying Matters Coalition. Why Should We Develop Compassionate Communities? https://tinyurl.com/n26raet
Francis Pope (2014) Message for the 23rd World Day of the Sick 2015. https://tinyurl.com/jw6a8hq
Gordon, P. S. (2016) Psychosocial Interventions in End-of-Life Care: the Hope for a “Good Death”. New York: Routledge.
Grant, P., S. Wright, R. Depner and D. Luczkiewicz (2014) “The Significance of End-of-Life Dreams and Visions”. Nursing Times 110(28): 22–24.
Holmes, J. (2010) “Spirituality Is a Weasel Word”. BMJ 341: 5801. https://doi.org/10.1136/bmj.c5801
Kellehear, A., and A. Karapliagkou (2014) Public Health Approaches to End of Life Care, Toolkit. https://tinyurl.com/kz4vknr
Kerr, C., J. Donnelly, S. Wright, S. Kuszczak, A. Banas, P. Grant and D. Luczkiewicz (2014) “End-of-life Dreams and Visions: A Longitudinal Study of Hospice Patients’ Experiences”. Journal of Palliative Medicine 17(3): 1–8. https://doi.org/10.1089/jpm.2013.0371
Koenig, H. (2005) Faith and Mental Health: Religious Resources for Healing. London: Templeton Foundation Press.
Leadership Alliance for the Care of Dying People (2014) One Chance To Get It Right: Improving People’s Experience of Care in the Last Few Days and Hours of Life. https://tinyurl.com/mad2kql
MacArtney, J., A. Broom, E. Kirby, P. Good, J. Wootton, and J. Adams (2015) “Locating Care at the End of Life: Burden, Vulnerability, and the Practical Accomplishment of Dying”. Sociology of Health and Illness. https://doi.org/10.1111/1467-9566.12375
Matthews, P. (2010) “Religion and the Secularization of Spirituality: A Catholic Perspective on Spirituality in the Care of the Elderly”. Journal of Religion, Spirituality and Aging, 22(4): 283–90. https://doi.org/10.1080/15528030.2010.483944
—(2013) Pope John Paul II and the Apparently “Non-acting” Person. Leominster: Gracewing.
McCarthy, B. (2010) Why the NHS Needs Chaplains. https://tinyurl.com/lrw6cfu
Mowat, H. (2008) The Potential for Efficacy of Healthcare Chaplaincy and Spiritual Care Provision in the NHS (UK): A Scoping Review of Recent Research. Aberdeen: Mowat Research.
National Council for Palliative Care (2011) What People Want to Live and Die Well. Evidence for NHS Future Forum. https://tinyurl.com/msuf42a
Neuberger, J. et al. (2013) More Care Less Pathway: A Review of the Liverpool Care Pathway. https://tinyurl.com/l4asno2
Newitt, M. (2011) “The Role and Skills of a Chaplain”. In Being a Chaplain, ed. M. Threlfall-Holmes and M. Newitt, 103–15. London: SPCK.
NHS Chaplaincy Guidelines (2015) Promoting Excellence in Pastoral, Spiritual and Religious Care. https://tinyurl.com/l7vuj2y
NHS North East Strategic Health Authority, Public Health Intelligence Northern England. (2010) Good Death Charter. https://www.phine.org.uk?a-good-death
NHS North East Strategic Health Authority (2014) Dying Well Community Charter. http://www.ncpc.org.uk/sites/default/files/Dying_Well_Community_Charter.pdf
November, L. (2014) The Impact of Faith Organisations on Public Health and Social Capital. https://tinyurl.com/l7u8sls
OECD (2011) The Future of Families to 2030: A Synthesis Report. http://www.oecd.org/futures/49093502.pdf
Puchalski, C. (2001) “The Role of Spirituality in Healthcare”. Baylor University Medical Center Proceedings 14(4): 352–57.
Ramsey, P. (1970) The Patient as Person. New Haven, CT: Yale University Press.
Royal College of Nursing (2010) Patients Missing Out on Spiritual Care, Say Nurses. https://tinyurl.com/3zncm35
Saunders, C. (1989) “Pain and Impending Death”. In Textbook of Pain, eds. P. D. Wall and R. Melzak, 624–31. Edinburgh: Churchill Livingstone.
Stajduhar, K. I. (2013) “Burdens of Family Caregiving at the End of Life”. Clinical & Investigative Medicine 36(3): E121–E126. https://doi.org/10.25011/cim.v36i3.19722
Strömberg, A., and M. L. Luttik (2015) “Burden of Caring: Risks and Consequences Imposed on Caregivers of Those Living and Dying with Advanced Heart Failure”. Current Opinion in Supportive and Palliative Care 9(1): 26–30. https://doi.org/10.1097/SPC.0000000000000111
Wall P. D. and R. Melzak, eds. (1989) Textbook of Pain. Edinburgh: Churchill Livingstone.
World Health Organization (1986) The Ottawa Charter for Health Promotion. https://tinyurl.com/phral53
Wynne, L. (2013) “Spiritual Care at the End of Life”. Nursing Standard 28(2): 41–45. https://doi.org/10.7748/ns2013.09.28.2.41.e7977