Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers
Restricted accessResearch articleFirst published online May, 2024
Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers
It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time.
Aim:
Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time.
Design:
A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants.
Setting/participants:
Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period.
Results:
All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future.
Conclusion:
This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals’ thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.
TalbottEOMalekAMLacomisD. The epidemiology of amyotrophic lateral sclerosis. Handb Clin Neurol. 2016; 138: 225–238.
2.
GreenawayLPMartinNHLawrenceV, et al. Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives. J Neurol. 2015; 262(4): 1002–1013.
3.
HogdenAFoleyGHendersonRDJamesNAounSM. Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc. 2017 May 19; 10: 205–215.
KiernanMCVucicSCheahBC, et al. Amyotrophic lateral sclerosis. Lancet2011; 377(9769): 942–955.
6.
Van Der SteenJTVan Soest-PoortvlietMCOnwuteaka-PhilipsenBD, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. J Alzheimer’s Dis2014; 40(3): 743–757.
7.
HigginsonIJCostantiniMSilberEBurmanR, et al. Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: a randomised fast-track trial to test timing of referral and how long the effect is maintained. Postgrad Med J2011; 87(1033): 769–775.
8.
OliverDJ.Palliative care in motor neurone disease: where are we now?Ther Adv Vaccines2019; 9(6): 259–261.
9.
EverettEAPedowitzEMaiserS, et al. Top ten tips palliative care clinicians should know about amyotrophic lateral sclerosis. J Palliat Med2020; 23(6): 842–847.
10.
BoersmaIMiyasakiJKutnerJKlugerB.Palliative care and neurology: time for a paradigm shift. Neurology. 2014; 83(6): 561–567. Palliat Care 2014; 83(6): 561–567.
11.
OliverDJBorasioGDCaraceniA, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol2016; 23(1): 30–38.
12.
World Health Organization. Planning and implementing palliative care services: a guide for programma managers. http://www.who.int/iris/handle/10665/250584 (2016, accessed 14 March 2021).
13.
RietjensJACSudoreRLConnollyM, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol2017; 18(9): e543–e551.
14.
TishelmanCEneslättMMenkinES, et al. Tishelman et al’s response to morrison: advance directives/care planning: clear, simple, and wrong. J Palliat Med2021; 24(1): 16–17.
15.
MurrayLButowPN.Advance care planning in motor neuron disease: a systematic review. Palliat Support Care2016; 14(4): 411–432.
16.
ConnollySGalvinMHardimanO.End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol2015; 14(4): 435–442.
17.
Prince-PaulMDiFrancoE.Upstreaming and normalizing advance care planning conversations—a public health approach. Behav Sci2017; 7(2): 18.
18.
KendallMMurraySACarduffE, et al. Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs. BMJ2009; 340(7739): 196.
19.
MurraySAKendallMCarduffE, et al. Use of serial qualitative interviews to understand patients’ evolving experiences and needs. BMJ2009; 339: 1–8.
20.
CrottyM. The Foundations of Social Research. 1st ed. London: Sage Publications, 1998.
VandenbogaerdeIMirandaRDe BleeckerJL, et al. Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers. BMJ Open2022; 12(5): e060451.
HsiehHFShannonSE.Three approaches to qualitative content analysis. Qual Health Res2005; 15(9): 1277–1288.
26.
DierckxdeCasterleBGastmansCBryonE, et al. QUAGOL: a guide for qualitative data analysis. Int J Nurs Stud2012; 49(3): 360–371.
27.
CalmanLBruntonLMolassiotisA.Developing longitudinal qualitative designs: lessons learned and recommendations for health services research. BMC Med Res Methodol. 2013; 13(1): 1–10.
28.
NealeB.Crafting qualitative longitudinal research: design and sampling. In: Neale B. Qualitative longitudinal research: Research Methods.London: Bloomsbury Academic; 2019, pp. 45–67.
29.
CarduffEKendallMMurraySA.Living and dying with metastatic bowel cancer: serial in-depth interviews with patients. Eur J Cancer Care2018; 27(1): 1–8.
30.
MurraySABoydKKendallM, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. Br Med J2002; 325(7370): 929–932.
31.
AstrowABSoodJRNolanMT, et al. Decision-making in patients with advanced cancer compared with amyothrophic lateral sclerosis. J Med Ethics2008; 34(9): 664–668.
32.
AlbertSMMurphyPLDel BeneML, et al. Prospective study of palliative care in ALS: choice, timing, outcomes. J Neurol Sci1999; 169(1–2): 108–113.
33.
BurchardiNRauprichOHechtM, et al. Discussing living wills. A qualitative study of a German sample of neurologists and ALS patients. J Neurol Sci2005; 237(1–2): 67–74.
34.
HopkinsSALovickRPolakL, et al. Reassessing advance care planning in the light of covid-19. BMJ2020; 369: 1–2.
35.
McMahanRDTellezISudoreRL.Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc2021; 69(1): 234–244.
36.
Van RickstalRVleminckAEngelborghsS, et al. A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: a holistic, flexible, and relational approach is recommended. Palliat Med2022; 36: 964–975.
37.
KoffmanJPenfoldCCottrellL, et al. “I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study. PLOS ONE2022; 17: 1–27.
38.
AbelJKellehearAMillington SandersC, et al. Advance care planning re-imagined: a needed shift for COVID times and beyond. Palliat Care Soc Pract2020; 13: 1–8.
39.
Jakobsson LarssonBNordinKNygrenI. Coping with amyotrophic lateral sclerosis; From diagnosis and during disease progression. J Neurol Sci2016; 361: 235–242.
40.
KingSJDukeMMO’ConnorBA.Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND): decision-making about “ongoing change and adaptation.”J Clin Nurs2009; 18(5): 745–754.
41.
AounSMMonterossoLKristjansonLJ, et al. Measuring symptom distress in palliative care: psychometric properties of the symptom assessment scale (SAS). J Palliat Med2011; 14(3): 315–321.
42.
FoleyGTimonenVHardimanO.Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med2014; 101: 113–119.
43.
GanziniLJohnstonWSSilveiraMJ.The final month of life in patients with ALS. Neurology2002; 59(3): 428–431.
44.
RayRAStreetAF.Non-finite loss and emotional labour: family caregivers’ experiences of living with motor neurone disease. J Clin Nurs2007; 16(3A): 35–43.
45.
JacobsenJBrennerKGreerJA, et al. When a patient is reluctant to talk about it: a dual framework to focus on living well and tolerate the possibility of dying. J Palliat Med2018; 21(3): 322–327.
46.
ZhangAYSiminoffLA.Silence and cancer : why do families and patients fail to communicate?Health Commun2014; 15: 37–41.
47.
PollockKBulliFCaswellG, et al. Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention. Mortality2024; 29(1): 69–89.
48.
BernardCTanASlavenM, et al. Exploring patient-reported barriers to advance care planning in family practice. BMC Fam Pract2020; 21(1): 1–9.
49.
KishinoMEllis-SmithCAfolabiO, et al. Family involvement in advance care planning for people living with advanced cancer: a systematic mixed-methods review. Palliat Med2022; 36(3): 462–477.
