To Die at Home or to End Life in an Institution
Affiliation(s)
1 Institute of Nursing and Health, Diakonhjemmet University College, Oslo, Norway. 2 Palliative Care Unit, Department of Oncology, Oslo University Hospital, Oslo, Norway. 3 Agenda Kaupang, Evaluation & Assessment, Bærum, Norway.
1 Institute of Nursing and Health, Diakonhjemmet University College, Oslo, Norway. 2 Palliative Care Unit, Department of Oncology, Oslo University Hospital, Oslo, Norway. 3 Agenda Kaupang, Evaluation & Assessment, Bærum, Norway.
ABSTRACT
In the Western world, 60%-80% of all deaths occur in an institution. This study aimed to determine the main causes for the low proportion of deaths at home in Norway. A retrospective cohort study was conducted in six Norwegian municipalities. The study employed official statistics and structured interviews with key staff individuals (spring 2012). We included 41 individuals that received palliative home care; 21 died at home. The rate of deaths at home may be increased by an acceptance of death and confidence that home is a good, safe place to die. This study showed how challenging it was for the family and health personnel to be a fellow Pellegrino in the last steps of life. However, when physical distress is under control, and when a dying patient and his significant other genuinely wish for death at home, it is necessary to control physical distress. Greater holistic well-being may then be achieved at home than in the hospital.
In the Western world, 60%-80% of all deaths occur in an institution. This study aimed to determine the main causes for the low proportion of deaths at home in Norway. A retrospective cohort study was conducted in six Norwegian municipalities. The study employed official statistics and structured interviews with key staff individuals (spring 2012). We included 41 individuals that received palliative home care; 21 died at home. The rate of deaths at home may be increased by an acceptance of death and confidence that home is a good, safe place to die. This study showed how challenging it was for the family and health personnel to be a fellow Pellegrino in the last steps of life. However, when physical distress is under control, and when a dying patient and his significant other genuinely wish for death at home, it is necessary to control physical distress. Greater holistic well-being may then be achieved at home than in the hospital.
Cite this paper
Wergeland Sørbye, L. , A. Steindal, S. and Lyngroth, S. (2015) To Die at Home or to End Life in an Institution. Open Journal of Nursing, 5, 538-547. doi: 10.4236/ojn.2015.56057.
Wergeland Sørbye, L. , A. Steindal, S. and Lyngroth, S. (2015) To Die at Home or to End Life in an Institution. Open Journal of Nursing, 5, 538-547. doi: 10.4236/ojn.2015.56057.
References
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http://dx.doi.org/10.1006/jevp.2000.0178 [2] Lantz, G. (1996) Människan, hemmet och tingen. In Gaunt, D. and Lantz, G., Eds., Hemmet i vården-vården i hemmet (Home in Nursing-Nursing at Home). Liber forlag, Stockholm, 1-64. [3] Somerville, P. (1997) The Social Construction of Home. Journal of Architectural and Planning Research, 14, 226-245. [4] Heggdal, K. (2003) En grunnleggende prosess for mestring av kronisk sykdom. Chronic illness. The Process of Embodied Knowledging. Universiteteti Bergen. Seksjon for sykepleievitenskap. Department of Nursing, Bergen. [5] Milberg, A., Wahlberg, R., Jakobsson, M., Olsson, E. C., Olsson, M. and Friedrichsen, M. (2011) What Is a “Secure Base” When Death Is Approaching? A Study Applying Attachment Theory to Adult Patients’ and Family Members’ Experiences of Palliative Home Care. Psycho-Oncology, 21, 886-895.
http://dx.doi.org/10.1002/pon.1982 [6] Statistics Norway (2012) Causes of Death, 2011.
https://www.ssb.no/statistikkbanken/SelectVarVal/Define.asp?MainTable=Dodssted&KortNavnWeb=dodsarsak&PLanguage=0&checked=true [7] Cohen, J., Bilsen, J., Addington-Hall, J., Lofmark, R., Miccinesi, G., Kaasa, S., Onwuteaka-Philipsen, B. and Deliens, L. (2008) Population-Based Study of Dying in Hospital in Six European Countries. Palliative Medicine, 22, 702-710.
http://dx.doi.org/10.1177/0269216308092285 [8] Higginson, I., Sarmento, V., Calanzani, N., Benalia, H. and Gomes, B. (2013) Dying at Home—Is It Better: A Narrative Appraisal of the State of the Science.Palliative Medicine, 27, 918-924. [9] The Municipal Sector Organization (KS) (2012) En naturlig avslutning på livet (A Natural End of Life). Agenda/ Kauang (Ed.)
http://www.ks.no/contentassets/84913fec5e104276a01dccd832e6fade/r7543-ks-en-naturlig-avslutning-pa-livet-_sluttrapport.pdf [10] (2008) ACT 2008-06-20 No. 44: Act on Medical and Health Research (The Health Research Act). [11] Esping-Andersen, G. and Korpi, W. (1987) From Poor Relief to Institutional Welfare States: The Development of Scandinavian Social Policy. In: Eriksson, R., Ringen, E. and Uusitalo, H., Eds., The Scandinavian Model: Welfare States and Welfare Research, M.E., Sharpe, New York, 39-74. [12] Daatland, S.O. and Lowenstein, A. (2005) Intergenerational Solidarity and the Family-Welfare State Balance. European Journal of Ageing, 2, 174-182.
http://link.springer.com/article/10.1007%2Fs10433-005-0001-1#page-1
http://dx.doi.org/10.1007/s10433-005-0001-1 [13] Kildal, N. and Kuhnle, S. (2005) The Nordic Welfare Model and Universalism. In: Kildal, N. and Kuhnle, S., Eds., Normative Foundation of the Welfare State: The Nordic Experience, Routledge, London, 13-33. [14] Romøren, T.I., Torjesen, D.O. and Landmark, B. (2011) Promoting Coordination in Norwegian Health Care. International Journal of Integrated Care, 11, e127. [15] Rostgaard, T. and Szebehely, M. (2012) Changing Policies, Changing Patterns of Care: Danish and Swedish Home Care at the Crossroads. European Journal of Ageing, 2, 101-109.
http://dx.doi.org/10.1007/s10433-011-0209-1 [16] McMillian Cancer Support (2014) Can We Live with How We’re Dying? Advancing the Case for Free Social Care at the End of Life.
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Endoflife/EndofLifereport-June2014.pdf [17] Statistics of England (2013).
http://www.ons.gov.uk/ons/rel/subnational-health1/national-bereavement-survey--voices-/2012/sty-care-at-the-end-of-life.html [18] Gao, W., Ho, Y.K., Verne, J., Glickman, M. and Higginson, I.J. (2013) Changing Patterns in Place of Cancer Death in England: A Population-Based Study. PLoS Medicine, 10, e1001410.
http://dx.doi.org/10.1371/journal.pmed.1001410 [19] Aoun, S., Kristjanson, L.J., Currow, D., Skett, K., Oldham, L. and Yates, P. (2007) Terminally-Ill People Living Alone without a Caregiver: An Australian National Scoping Study of Palliative Care Needs. Palliative Medicine, 21, 29-34.
http://dx.doi.org/10.1177/0269216306073198 [20] Hanratty, B., Addington-Hall, J., Arthur, A., Cooper, L., Grande, G., Payne, S. and Seymour, J. (2013) What Is Different about Living Alone with Cancer in Older Age? A Qualitative Study of Experiences and Preferences for Care. BMC Family Practice, 14, 22.
http://dx.doi.org/10.1186/1471-2296-14-22 [21] Wheatley, V. and Baker, J. (2007) “Please, I Want to Go Home”: Ethical Issues Raised When Considering Choice of Place of Care in Palliative Care. Postgraduate Medical Journal, 83, 643-648.
http://dx.doi.org/10.1136/pgmj.2007.058487
http://pmj.bmj.com/content/83/984/643.full.pdf+html [22] Pedersen, A. (2014) Place of Death—Cancer and Gender. Institute of Public Health, Oslo. [23] Carlsson, M.E. and Rollison, B. (2003) A Comparison of Patients Dying at Home and Patients Dying at a Hospice: Sociodemographic Factors and Caregivers’ Experiences. Palliative & Support Care, 1, 33-39.
http://dx.doi.org/10.1017/S1478951503030098 [24] Bee, P.E., Barnes, P. and Luker, K.A. (2009) A Systematic Review of Informal Caregivers’ Needs in Providing Home-Based End-of-Life Care to People with Cancer. Journal of Clinical Nursing, 18, 1379-1393.
http://dx.doi.org/10.1111/j.1365-2702.2008.02405.x [25] Seow, H., Barbera, L., Howell, D. and Dy, S.M. (2010) Using More End-of-Life Homecare Services is Associated with Using Fewer Acute Care Services: A Population-Based Cohort Study. Medical Care, 48, 118-124.
http://dx.doi.org/10.1097/MLR.0b013e3181c162ef [26] Gott, M., Gardiner, C., Ingleton, C., Cobb, M., Noble, B., Bennett, M.I. and Seymour, J. (2013) What Is the Extent of Potentially Avoidable Admissions amongst Hospital Inpatients with Palliative Care Needs? BMC Palliative Care, 12, 9.
http://dx.doi.org/10.1186/1472-684X-12-9 [27] (2008-2009) Report No. 47 to the Storting: The Coordination Reform. Norwegian Minister of Health and Care Services, Oslo.
https://www.regjeringen.no/globalassets/upload/hod/dokumenter20info/samhandling-engelsk_pdfs.pdf [28] Burge, F., Lawson, B., Johnston, G. and Flowerdew, G. (2005) Health Care Restructuring and Family Physician Care for Those Who Died of Cancer. BMC Family Practice, 6, 1.
http://www.biomedcentral.com/1471-2296/6/1
http://dx.doi.org/10.1186/1471-2296-6-1 [29] Heedman, P.A. and Strang, P. (2003) Pain and Pain Alleviation in Hospital-Based Home Care: Demographic, Biological and Treatment Factors. Support Care Cancer, 11, 35-40. [30] Goodwin, L., Price, A., Lee, W., Rayner, L., Moorey, S., Monroe, B. and Hotopf, M. (2014) I’ve Had a Good Life, What’s Left Is a Bonus: Factor Analysis of the Mental Adjustment to Cancer Scale in a Palliative Care Population. Palliative Medicine, 28, 243-255.
http://dx.doi.org/10.1177/0269216313498435 [31] Fisher, K., Seow, H., Cohen, J., Declercq, A., Freeman, S. and Guthrie, D.M. (2014) Patient Characteristics Associated With Prognostic Awareness: A Study of a Canadian Palliative Care Population Using the InterRAI Palliative Care Instrument. Journal of Pain and Symptom Manage, 49, 716-725.
http://dx.doi.org/10.1016/j.jpainsymman.2014.08.008 [32] McLeod-Sordjan, R. (2014) Death Preparedness: A Concept Analysis. Journal of Advance Nursing, 70, 1008-1019.
http://dx.doi.org/10.1111/jan.12252 [33] Paulson, S., Kellehear, A., Kripal, J.J. and Leary, L. (2014) Confronting Mortality: Faith and Meaning across Cultures. Annals of the New York Academy of Sciences, 1330, 58-74.
http://dx.doi.org/10.1111/nyas.12474
[1] Moore, J. (2000) Placing Home in Context. Journal of Environmental Psychology, 20, 207-217.
http://dx.doi.org/10.1006/jevp.2000.0178 [2] Lantz, G. (1996) Människan, hemmet och tingen. In Gaunt, D. and Lantz, G., Eds., Hemmet i vården-vården i hemmet (Home in Nursing-Nursing at Home). Liber forlag, Stockholm, 1-64. [3] Somerville, P. (1997) The Social Construction of Home. Journal of Architectural and Planning Research, 14, 226-245. [4] Heggdal, K. (2003) En grunnleggende prosess for mestring av kronisk sykdom. Chronic illness. The Process of Embodied Knowledging. Universiteteti Bergen. Seksjon for sykepleievitenskap. Department of Nursing, Bergen. [5] Milberg, A., Wahlberg, R., Jakobsson, M., Olsson, E. C., Olsson, M. and Friedrichsen, M. (2011) What Is a “Secure Base” When Death Is Approaching? A Study Applying Attachment Theory to Adult Patients’ and Family Members’ Experiences of Palliative Home Care. Psycho-Oncology, 21, 886-895.
http://dx.doi.org/10.1002/pon.1982 [6] Statistics Norway (2012) Causes of Death, 2011.
https://www.ssb.no/statistikkbanken/SelectVarVal/Define.asp?MainTable=Dodssted&KortNavnWeb=dodsarsak&PLanguage=0&checked=true [7] Cohen, J., Bilsen, J., Addington-Hall, J., Lofmark, R., Miccinesi, G., Kaasa, S., Onwuteaka-Philipsen, B. and Deliens, L. (2008) Population-Based Study of Dying in Hospital in Six European Countries. Palliative Medicine, 22, 702-710.
http://dx.doi.org/10.1177/0269216308092285 [8] Higginson, I., Sarmento, V., Calanzani, N., Benalia, H. and Gomes, B. (2013) Dying at Home—Is It Better: A Narrative Appraisal of the State of the Science.Palliative Medicine, 27, 918-924. [9] The Municipal Sector Organization (KS) (2012) En naturlig avslutning på livet (A Natural End of Life). Agenda/ Kauang (Ed.)
http://www.ks.no/contentassets/84913fec5e104276a01dccd832e6fade/r7543-ks-en-naturlig-avslutning-pa-livet-_sluttrapport.pdf [10] (2008) ACT 2008-06-20 No. 44: Act on Medical and Health Research (The Health Research Act). [11] Esping-Andersen, G. and Korpi, W. (1987) From Poor Relief to Institutional Welfare States: The Development of Scandinavian Social Policy. In: Eriksson, R., Ringen, E. and Uusitalo, H., Eds., The Scandinavian Model: Welfare States and Welfare Research, M.E., Sharpe, New York, 39-74. [12] Daatland, S.O. and Lowenstein, A. (2005) Intergenerational Solidarity and the Family-Welfare State Balance. European Journal of Ageing, 2, 174-182.
http://link.springer.com/article/10.1007%2Fs10433-005-0001-1#page-1
http://dx.doi.org/10.1007/s10433-005-0001-1 [13] Kildal, N. and Kuhnle, S. (2005) The Nordic Welfare Model and Universalism. In: Kildal, N. and Kuhnle, S., Eds., Normative Foundation of the Welfare State: The Nordic Experience, Routledge, London, 13-33. [14] Romøren, T.I., Torjesen, D.O. and Landmark, B. (2011) Promoting Coordination in Norwegian Health Care. International Journal of Integrated Care, 11, e127. [15] Rostgaard, T. and Szebehely, M. (2012) Changing Policies, Changing Patterns of Care: Danish and Swedish Home Care at the Crossroads. European Journal of Ageing, 2, 101-109.
http://dx.doi.org/10.1007/s10433-011-0209-1 [16] McMillian Cancer Support (2014) Can We Live with How We’re Dying? Advancing the Case for Free Social Care at the End of Life.
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Endoflife/EndofLifereport-June2014.pdf [17] Statistics of England (2013).
http://www.ons.gov.uk/ons/rel/subnational-health1/national-bereavement-survey--voices-/2012/sty-care-at-the-end-of-life.html [18] Gao, W., Ho, Y.K., Verne, J., Glickman, M. and Higginson, I.J. (2013) Changing Patterns in Place of Cancer Death in England: A Population-Based Study. PLoS Medicine, 10, e1001410.
http://dx.doi.org/10.1371/journal.pmed.1001410 [19] Aoun, S., Kristjanson, L.J., Currow, D., Skett, K., Oldham, L. and Yates, P. (2007) Terminally-Ill People Living Alone without a Caregiver: An Australian National Scoping Study of Palliative Care Needs. Palliative Medicine, 21, 29-34.
http://dx.doi.org/10.1177/0269216306073198 [20] Hanratty, B., Addington-Hall, J., Arthur, A., Cooper, L., Grande, G., Payne, S. and Seymour, J. (2013) What Is Different about Living Alone with Cancer in Older Age? A Qualitative Study of Experiences and Preferences for Care. BMC Family Practice, 14, 22.
http://dx.doi.org/10.1186/1471-2296-14-22 [21] Wheatley, V. and Baker, J. (2007) “Please, I Want to Go Home”: Ethical Issues Raised When Considering Choice of Place of Care in Palliative Care. Postgraduate Medical Journal, 83, 643-648.
http://dx.doi.org/10.1136/pgmj.2007.058487
http://pmj.bmj.com/content/83/984/643.full.pdf+html [22] Pedersen, A. (2014) Place of Death—Cancer and Gender. Institute of Public Health, Oslo. [23] Carlsson, M.E. and Rollison, B. (2003) A Comparison of Patients Dying at Home and Patients Dying at a Hospice: Sociodemographic Factors and Caregivers’ Experiences. Palliative & Support Care, 1, 33-39.
http://dx.doi.org/10.1017/S1478951503030098 [24] Bee, P.E., Barnes, P. and Luker, K.A. (2009) A Systematic Review of Informal Caregivers’ Needs in Providing Home-Based End-of-Life Care to People with Cancer. Journal of Clinical Nursing, 18, 1379-1393.
http://dx.doi.org/10.1111/j.1365-2702.2008.02405.x [25] Seow, H., Barbera, L., Howell, D. and Dy, S.M. (2010) Using More End-of-Life Homecare Services is Associated with Using Fewer Acute Care Services: A Population-Based Cohort Study. Medical Care, 48, 118-124.
http://dx.doi.org/10.1097/MLR.0b013e3181c162ef [26] Gott, M., Gardiner, C., Ingleton, C., Cobb, M., Noble, B., Bennett, M.I. and Seymour, J. (2013) What Is the Extent of Potentially Avoidable Admissions amongst Hospital Inpatients with Palliative Care Needs? BMC Palliative Care, 12, 9.
http://dx.doi.org/10.1186/1472-684X-12-9 [27] (2008-2009) Report No. 47 to the Storting: The Coordination Reform. Norwegian Minister of Health and Care Services, Oslo.
https://www.regjeringen.no/globalassets/upload/hod/dokumenter20info/samhandling-engelsk_pdfs.pdf [28] Burge, F., Lawson, B., Johnston, G. and Flowerdew, G. (2005) Health Care Restructuring and Family Physician Care for Those Who Died of Cancer. BMC Family Practice, 6, 1.
http://www.biomedcentral.com/1471-2296/6/1
http://dx.doi.org/10.1186/1471-2296-6-1 [29] Heedman, P.A. and Strang, P. (2003) Pain and Pain Alleviation in Hospital-Based Home Care: Demographic, Biological and Treatment Factors. Support Care Cancer, 11, 35-40. [30] Goodwin, L., Price, A., Lee, W., Rayner, L., Moorey, S., Monroe, B. and Hotopf, M. (2014) I’ve Had a Good Life, What’s Left Is a Bonus: Factor Analysis of the Mental Adjustment to Cancer Scale in a Palliative Care Population. Palliative Medicine, 28, 243-255.
http://dx.doi.org/10.1177/0269216313498435 [31] Fisher, K., Seow, H., Cohen, J., Declercq, A., Freeman, S. and Guthrie, D.M. (2014) Patient Characteristics Associated With Prognostic Awareness: A Study of a Canadian Palliative Care Population Using the InterRAI Palliative Care Instrument. Journal of Pain and Symptom Manage, 49, 716-725.
http://dx.doi.org/10.1016/j.jpainsymman.2014.08.008 [32] McLeod-Sordjan, R. (2014) Death Preparedness: A Concept Analysis. Journal of Advance Nursing, 70, 1008-1019.
http://dx.doi.org/10.1111/jan.12252 [33] Paulson, S., Kellehear, A., Kripal, J.J. and Leary, L. (2014) Confronting Mortality: Faith and Meaning across Cultures. Annals of the New York Academy of Sciences, 1330, 58-74.
http://dx.doi.org/10.1111/nyas.12474