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Advance care planning in motor neuron disease: A systematic review

Published online by Cambridge University Press:  14 October 2015

Leigh Murray  and
Phyllis N. Butow
Leigh Murray
Affiliation:
University of Sydney, School of Psychology, Sydney, New South Wales, Australia
Phyllis N. Butow*
Affiliation:
University of Sydney, Psycho-Oncology Co-operative Research Group, Sydney, New South Wales, Australia University of Sydney, Centre for Medical Psychology and Evidence-Based Decision Making, School of Psychology, Sydney, New South Wales, Australia
*
Address correspondence and reprint request to Phyllis Butow, University of Sydney, School of Psychology, Lifehouse Level 6-North, NSW 2006Australia. E-Mail: [email protected].
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Abstract

Objective:

Motor neuron disease (MND) is an incurable progressive illness, characterized by incessant deterioration of neuromuscular function. Timely commencement of advance care planning (ACP) may enable patients to participate in future care choices. The present systematic review aimed to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional (HCP) awareness/support, and healthcare outcomes associated with ACP in the MND setting.

Method:

Quantitative and qualitative studies were identified through database searches and eligibility assessed by one author and verified by her coauthor. Data extraction and quality assessments against standardized criteria were completed by the two authors.

Results:

Of the 422 studies identified, 16 were included. The research methods generally lacked rigor. Advance directive (AD) prevalence varied considerably across studies. Disease progression was the strongest predictor of AD completion. ACP processes may clarify patients' wishes and promote communication. HCP attitudes or lack of awareness may limit ACP processes. Varying patient preferences may make flexible approaches and timing necessary.

Significance of results:

Important benefits may be associated with ACP in the context of a motor neuron disease (e.g., feelings of control/relief and refusal of unwanted treatments). However, further evidence is required to verify findings and identify optimal streamlined approaches (e.g., use of decision aids) consistent with patients' (and caregivers') needs over time.

Keywords

Advance care planningMotor neuron diseaseAmyotrophic lateral sclerosisSystematic review
Type
Review Article
Information
Palliative & Supportive Care , Volume 14 , Issue 4 , August 2016 , pp. 411 - 432
Copyright
Copyright © Cambridge University Press 2015 

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References

REFERENCES

Albert, S.M., Murphy, P.L., del Bene, M.L., et al. (1999). Prospective study of palliative care in ALS: Choice, timing, outcomes. Journal of the Neurological Sciences, 169(1–2), 108–113.CrossRefGoogle ScholarPubMed
Astrow, A.B., Sood, J.R., Nolan, M.T., et al. (2008). Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. Journal of Medical Ethics, 34(9), 664–668.Google Scholar
Barnett-Page, E. & Thomas, J. (2009). Methods for the synthesis of qualitative research: A critical review. BMC Medical Research Methodology, 9(1), 59.CrossRefGoogle ScholarPubMed
Benditt, J.O., Smith, T.S. & Tonelli, M.R. (2001). Empowering the individual with ALS at the end of life: Disease-specific advance care planning. Muscle & Nerve, 24(12), 1706–1709.Google Scholar
Bradley, W.G., Anderson, F., Bromberg, M., et al. (2001). Current management of ALS: Comparison of the ALS CARE Database and the AAN Practice Parameter. The American Academy of Neurology. Neurology, 57(3), 500–504.CrossRefGoogle ScholarPubMed
Burchardi, N., Rauprich, O., Hecht, M., et al. (2005). Discussing living wills: A qualitative study of a German sample of neurologists and ALS patients. Journal of the Neurological Sciences, 237(1–2), 67–74.Google Scholar
Clayton, J.M., Hancock, K.M., Butow, P.N., et al. (2007). Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. The Medical Journal of Australia, 186(12), S81–S108.Google Scholar
Dawson, S. & Kristjanson, L.J. (2002). Mapping the journey: Family carers’ perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. Journal of Palliative Care, 19(1), 36–42.CrossRefGoogle Scholar
Detering, K.M., Hancock, A.D., Reade, M.C., et al. (2010). The impact of advance care planning on end-of-life care in elderly patients: Randomized controlled trial. BMJ, 340. Available from http://www.bmj.com/content/340/bmj.c1345.Google Scholar
Dreyer, P.S., Felding, M., Klitnæs, C.S., et al. (2012). Withdrawal of invasive home mechanical ventilation in patients with advanced amyotrophic lateral sclerosis: Ten years of Danish experience. Journal of Palliative Medicine, 15(2), 205–209.Google Scholar
Fried, T.R., Bullock, K., Iannone, L., et al. (2009). Understanding advance care planning as a process of health behavior change. Journal of the American Geriatrics Society, 57(9), 1547–1555.Google Scholar
Ganzini, L., Johnston, W.S. & Silveira, M.J. (2002). The final month of life in patients with ALS. Neurology, 59(3), 428–431.Google Scholar
Herz, H., McKinnon, P.M. & Butow, P.N. (2006). Proof of love and other themes: A qualitative exploration of the experience of caring for people with motor neurone disease. Progress in Palliative Care, 14(5), 209–214.CrossRefGoogle Scholar
Hoffman, J.J. (2008). Toward a better understanding of amyotrophic lateral sclerosis. Home Healthcare Nurse, 26(6), 337–342; quiz 343–334.CrossRefGoogle Scholar
Hossler, C., Levi, B.H., Simmons, Z., et al. (2011). Advance care planning for patients with ALS: Feasibility of an interactive computer program. Amyotrophic Lateral Sclerosis, 12(3), 172–177.Google Scholar
Kmet, L.M., Lee, R.C. & Cook, L.S. (2004). Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Edmonton: Alberta Heritage Foundation for Medical Research.Google Scholar
Mandler, R.N., Anderson, F.A. Jr., Miller, R.G., et al. (2001). The ALS patient care database: Insights into end-of-life care in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 2(4), 203–208.CrossRefGoogle ScholarPubMed
Mays, N., Pooe, C., Popay, J., et al. (2005). Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. Journal of Health Service Research & Policy, 10(Suppl. 1), 6–20.Google Scholar
Miller, R.G., Anderson, F.A. Jr., Bradley, W.G., et al. (2000). The ALS patient care database: Goals, design, and early results. Neurology, 54(1), 53–57.Google Scholar
Mitchell, J.D. & Borasio, G.D. (2007). Amyotrophic lateral sclerosis. Lancet, 369(9578), 2031–2041.Google Scholar
Mitsumoto, H., Bromberg, M., Johnston, W., et al. (2005). Promoting excellence in end-of-life care in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 6(3), 145–154.Google Scholar
Molloy, D.W., Guyatt, G.H., Russo, R., et al. (2000). Systematic implementation of an advance directive program in nursing homes: A randomized controlled trial. The Journal of the American Medical Association, 283(11), 1437–1444.CrossRefGoogle ScholarPubMed
Moss, A.H., Oppenheimer, E.A., Casey, P., et al. (1996). Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: Advance care planning and outcomes. Chest, 110(1), 249–255.Google Scholar
Munroe, C.A., Sirdofsky, M.D., Kuru, T., et al. (2007). End-of-life decision making in 42 patients with amyotrophic lateral sclerosis. Respiratory Care, 52(8), 996–999.Google ScholarPubMed
Peretti-Watel, P., Bendiane, M.K., Galinier, A., et al. (2008). District nurses’ attitudes toward patient consent: The case of mechanical ventilation on amyotrophic lateral sclerosis patients. Results from a French national survey. Journal of Critical Care, 23(3), 332–338.Google ScholarPubMed
Preston, H., Fineberg, I.C., Callagher, P., et al. (2012). The preferred priorities for care document in motor neurone disease: Views of bereaved relatives and carers. Palliative Medicine, 26(2), 132–138.Google Scholar
Ray, R.A., Brown, J. & Street, A.F. (2012). Dying with motor neurone disease: What can we learn from family caregivers? Health Expectations, 17(4), 466–476.CrossRefGoogle ScholarPubMed
Salmond, S.W. & David, E. (2005). Attitudes toward advance directives and advance directive completion rates. Orthopedic Nursing, 24(2), 117–127.CrossRefGoogle ScholarPubMed
Silverstein, M.D., Stocking, C.B., Antel, J.P., et al. (1991). Amyotrophic lateral sclerosis and life-sustaining therapy: Patients’ desires for information, participation in decision making, and life-sustaining therapy. Mayo Clinic Proceedings, 66(9), 906–913.CrossRefGoogle ScholarPubMed
Talbot, K. (2002). Motor neurone disease. Postgraduate Medical Journal, 78(923), 513–519.Google Scholar
Teno, J.M., Gruneir, A., Schwartz, Z., et al. (2007). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), 189–194.Google Scholar
Thompson, T.D., Barbour, R.S. & Schwartz, L. (2003). Health professionals’ views on advance directives: A qualitative interdisciplinary study. Palliative Medicine, 17(5), 403–409.CrossRefGoogle ScholarPubMed
Whitehead, B., O'Brien, M.R., Jack, B.A., et al. (2012). Experiences of dying, death and bereavement in motor neurone disease: A qualitative study. Palliative Medicine, 26(4), 368–378.Google Scholar