Long term care (LTC) homes, also known as residential care homes, commonly care for residents until death, making palliative care and advance care planning (ACP) important elements of care. However, limited research exists on ACP in LTC. In particular, research giving voice to family members and substitute decision makers is lacking. The objective of this research was to understand experiences, perspectives, and preferences to guide quality improvement of ACP in LTC. This qualitative descriptive study conducted 34 individual semistructured interviews in two LTC homes, located in Canada. The participants were 31 family members and three staff, consisting of a front line care worker, a registered nurse, and a nurse practitioner. All participants perceived ACP conversations as valuable to provide “resident-centred care”; however, none of the participants had a good understanding of ACP, limiting its effectiveness. Strategies generated through the research to improve ACP were as follows: educating families and staff on ACP and end-of-life care options; better preparing staff for ACP conversations; providing staff skills training and guidelines; and LTC staff initiating systematic, proactive conversations using careful timing. These strategies can guide quality improvement of palliative care and development of ACP tools and resources specific to the LTC home sector. 1. Introduction Long term care (LTC) homes today provide care to people of advanced age, frailty, or disability, with multiple health problems [1, 2]. Increasingly, they provide end-of-life care [3–5] as approximately one in five residents living in LTC homes in Canada and UK dies each year [6–9]. Yet, there exists a culture of silence surrounding dying that creates a barrier to end-of-life communications in LTC [2, 10]. Lack of discussion with the resident and the resident’s substitute decision-maker, most commonly a family member, about end-of-life wishes can lead to unnecessary and unwanted medical treatments [11, 12], unnecessary transfers to the acute hospital [13], and discomfort and anxiety for both the resident and family [14]. Implementing effective advance care planning (ACP) can improve patient and family satisfaction with care and increase the likelihood that people will die in their setting of choice [12, 15]. Dying at home in the long term care home can be offered as an option during ACP discussions. ACP is a structured conversation to help people decide, communicate, and document their wishes for care at the end of life [16, 17]. ACP is viewed as an essential component of a quality
References
[1]
S. Aylward, P. Stolee, N. Keat, and V. Johncox, “Effectiveness of continuing education in long-term care: a literature review,” Gerontologist, vol. 43, no. 2, pp. 259–271, 2003.
[2]
J. ？sterlind, G. Hansebo, J. Andersson, B.-M. Ternestedt, and I. Hellstr？m, “A discourse of silence: professional carers reasoning about death and dying in nursing homes,” Ageing and Society, vol. 31, pp. 529–544, 2011.
[3]
K. Brazil, P. Krueger, M. Bedard et al., “Quality of care for residents dying in Ontario long-term care facilities: findings from a survey of directors of care,” Journal of Palliative Care, vol. 22, no. 1, pp. 18–25, 2006.
[4]
S. M. Wowchuk, S. McClement, and J. Bond Jr., “The challenge of providing palliative care in the nursing home—part 1. External factors,” International Journal of Palliative Nursing, vol. 12, no. 6, pp. 260–267, 2006.
[5]
J. P. Hirdes, L. Mitchell, C. J. Maxwell, and N. White, “Beyond the “iron lungs of gerontology”: using evidence to shape the future of nursing homes in Canada,” Canadian Journal on Aging, vol. 30, no. 3, pp. 371–390, 2011.
[6]
Statistics Canada: Residential care facilities, 2009-2010, http://www5.statcan.gc.ca/access_acces/alternative_alternatif.action?teng=83-237-x2012001-eng.pdf&tfra=83-237-x2012001-fra.pdf&l=eng&loc=83-237-x2012001-eng.pdf.
[7]
S. S. Travis, M. Bernard, S. Dixon, W. J. McAuley, G. Loving, and L. McClanahan, “Obstacles to palliation and end-of-life care in a long-term care facility,” Gerontologist, vol. 42, no. 3, pp. 342–349, 2002.
[8]
Canadian Institute for Health Information: Continuing care reporting system (CCRS), Quick Stats Tables 2011-2012, CIHI, Canada, Ottawa, 2012.
[9]
F. Stewart, C. Goddard, R. Schiff, and S. Hall, “Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families,” Age and Ageing, vol. 40, no. 3, pp. 330–335, 2011.
[10]
D. P. Oliver, D. Porock, and D. B. Oliver, “Managing the secrets of dying backstage: the voices of nursing home staff,” Omega, vol. 53, no. 3, pp. 193–207, 2006.
[11]
F. Badger, C. Clifford, A. Hewison, and K. Thomas, “An evaluation of the implementation of a programme to improve end-of-life care in nursing homes,” Palliative Medicine, vol. 23, no. 6, pp. 502–511, 2009.
[12]
K. M. Detering, A. D. Hancock, M. C. Reade, and W. Silvester, “The impact of advance care planning on end of life care in elderly patients: randomised controlled trial,” British Medical Journal, vol. 340, Article ID c1345, 2010.
[13]
L. Ceronsky and D. E. Weissman, “Helping families in long-term care facing complex decisions: applying the evidence about family meetings from other settings,” Annals of Long-Term Care, vol. 19, no. 2, pp. 27–32, 2011.
[14]
J. G. Ouslander, M. Perloe, J. H. Givens, L. Kluge, T. Rutland, and G. Lamb, “Reducing potentially avoidable hospitalizations of nursing home residents: results of a pilot quality improvement project,” Journal of the American Medical Directors Association, vol. 10, no. 9, pp. 644–652, 2009.
[15]
A. A. Wright, B. Zhang, A. Ray et al., “Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment,” Journal of the American Medical Association, vol. 300, no. 14, pp. 1665–1673, 2008.
[16]
L. Robinson, C. Dickinson, N. Rousseau et al., “A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia,” Age and Ageing, vol. 41, no. 2, pp. 263–269, 2012.
[17]
Speak Up, “Start the conversation about end-of-life care,” 2013, http://www.advancecareplanning.ca.
[18]
W. J. McAuley, R. J. Buchanan, S. S. Travis, S. Wang, and M. Kim, “Recent trends in advance directives at nursing home admission and one year after admission,” Gerontologist, vol. 46, no. 3, pp. 377–381, 2006.
[19]
J. Blackford, E. Strickland, and B. Morris, “Advance care planning in residential aged care facilities,” Contemporary Nurse, vol. 27, no. 1, pp. 141–151, 2007.
[20]
L. H. Mallery and P. Moorhouse, “Respecting frailty,” Journal of Medical Ethics, 2010.
[21]
Canadian Hospice Palliative Care Association, “Advance care planning,” 2013, http://www.chpca.net/.
[22]
S. D. Ramsaroop, M. C. Reid, and R. D. Adelman, “Completing an advance directive in the primary care setting: what do we need for success?” Journal of the American Geriatrics Society, vol. 55, no. 2, pp. 277–283, 2007.
[23]
M. D. Cantor and R. A. Pearlman, “Advance care planning in long-term care facilities,” Journal of the American Medical Directors Association, vol. 4, no. 2, pp. 101–107, 2003.
[24]
P. Triplett, B. S. Black, H. Phillips et al., “Content of advance directives for individuals with advanced dementia,” Journal of Aging and Health, vol. 20, no. 5, pp. 583–596, 2008.
[25]
H. C. Lambert, M. A. McColl, J. Gilbert, J. Wong, G. Murray, and S. E. D. Shortt, “Factors affecting long-term-care residents' decision-making processes as they formulate advance directives,” Gerontologist, vol. 45, no. 5, pp. 626–633, 2005.
[26]
J. Watson, J. Hockley, and S. Murray, “Evaluating effectiveness of the GSFCH and LCP in care homes,” End of Life Care, vol. 4, pp. 42–49, 2010.
[27]
R. S. Hebert, H. G. Prigerson, R. Schulz, and R. M. Arnold, “Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research,” Journal of Palliative Medicine, vol. 9, no. 5, pp. 1164–1171, 2006.
[28]
J. Simon, P. Porterfield, S. Raffin Bouchal, and D. Heyland, “‘Not yet’ and “just ask”: barrieres and facilitators to advance care planning—a qualitative descriptive study of the perspectives of seriously ill, older patienrs and their families,” BMJ Supportive & Palliative Care, 2013.
[29]
S. Y.-S. Jeong, I. Higgins, and M. McMillan, “The essentials of advance care planning for end-of-life care for older people,” Journal of Clinical Nursing, vol. 19, no. 3-4, pp. 389–397, 2010.
[30]
W. Silvester, R. S. Fullman, and R. A. Parslow, “Quality of advance care planning policy and practice in residential aged care facilities in Australia,” BMJ Support Palliat Care, vol. 3, pp. 349–357, 2012.
[31]
D. K. Heyland, P. Dodek, G. Rocker et al., “What matters most in end-of-life care: perceptions of seriously ill patients and their family members,” Canadian Medical Association Journal, vol. 174, no. 5, pp. 627–633, 2006.
[32]
D. B. Bekelman, C. T. Nowels, J. H. Retrum et al., “Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs,” Journal of Palliative Medicine, vol. 14, no. 12, pp. 1317–1324, 2011.
[33]
J. L. Phillips, P. M. Davidson, R. Ollerton, D. Jackson, and L. Kristjanson, “A survey of commitment and compassion among nurses in residential aged care,” International Journal of Palliative Nursing, vol. 13, no. 6, pp. 282–290, 2007.
[34]
J. Phillips, P. M. Davidson, D. Jackson, L. Kristjanson, J. Daly, and J. Curran, “Residential aged care: the last frontier for palliative care,” Journal of Advanced Nursing, vol. 55, no. 4, pp. 416–424, 2006.
[35]
E. Sherwen, “How to use advance care planning in a care home,” Art & Science, vol. 25, pp. 14–18, 2013.
[36]
J. J. Rhee, N. A. Zwar, and L. A. Kemp, “How is advance care planning conceptualised in Australia? Findings from key informant interviews,” Australian Health Review, vol. 35, no. 2, pp. 197–203, 2011.
[37]
J. Kwak, E. Ko, and B. J. Kramer, “Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations,” Health & Social Care in the Community, vol. 22, pp. 169–177, 2014.
[38]
I. A. Scott, G. K. Mitchell, E. J. Reymond, and M. P. Daly, “Difficult but necessary conversations—the case for advance care planning,” Medical Journal of Australia, vol. 199, pp. 662–666, 2013.
[39]
“Quality Palliative Care in Long Term Care. A Community-University Research Alliance,” 2013, http://www.palliativealliance.ca.
[40]
S. Thorne, S. Reimer Kirkham, and K. O'Flynn-Magee, “The analytic Challenge in interpretive description,” International Journal of Qualitative Methods, vol. 3, pp. 1–21, 2004.
[41]
M. L. Matzo and D. W. Sherman, “Palliative care nursing: ensuring competent care at the end of life,” Geriatric Nursing, vol. 22, no. 6, pp. 288–293, 2001.
