End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis
Restricted accessResearch articleFirst published online January, 2021
End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis
Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis.
Aim:
The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care.
Design:
Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced.
Setting/Participants:
Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants.
Results:
The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families.
Conclusion:
The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.
WaldropDPMeekerMA.Communication and advanced care planning in palliative and end-of-life care. Nurs Outlook2012; 60(6): 365–369.
2.
GruneirAMorVWeitzenS, et al. Where people die: a multilevel approach to understanding influences on site of death in America. MCRR2007; 64(4): 351–378.
3.
MichaelNO’CallaghanCBairdA, et al. Cancer caregivers advocate a patient- and family-centered approach to advance care planning. J Pain Symptom Manage2014; 47(6): 1064–1077.
4.
DeteringKMHancockADReadeMC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ2010; 340: c1345.
5.
ChhetriSKBradleyBFCallagherP, et al. Choosing the place of death: empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making. Palliat Med2015; 29(7): 667–668.
6.
ConnollySGalvinMHardimanO.End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol2015; 14(4): 435–442.
7.
MurrayLButowPN.Advance care planning in motor neuron disease: a systematic review. Palliat Support Care2016; 14(4): 411–432.
8.
MitsumotoHBrombergMJohnstonW, et al. Promoting excellence in end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord2005; 6(3): 145–154.
9.
CipollettaSAmicucciL.The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study. Int J Psychol2015; 50: 288–294.
10.
HogdenAGreenfieldDNugusP, et al. What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Prefer Adherence2012; 6: 829.
11.
OliverDJTurnerMR.Some difficult decisions in ALS/MND. Amyotroph Lat Scler2010; 11(4): 339–343.
12.
HancockKClaytonJMParkerSM, et al. Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage2007; 34(2): 190–200.
13.
FriedTRO’LearyJR. Using the experiences of bereaved caregivers to inform patient-and caregiver-centered advance care planning. J Gen Intern Med2008; 23(10): 1602–1607.
14.
SmallNBarnesSGottM, et al. Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliat Care2009; 8(1): 6.
15.
BolligGGjengedalERoslandJH.They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliat Med2016; 30(5): 456–470.
16.
PooleMBamfordCMcLellanE, et al. End-of-life care: a qualitative study comparing the views of people with dementia and family carers. Palliat Med2018; 32(3): 631–642.
17.
NoomeMDijkstraBMvan LeeuwenE, et al. Exploring family experiences of nursing aspects of end-of-life care in the ICU: a qualitative study. Intensive Crit Care Nurs2016; 33: 56–64.
18.
HajizadehNUhlerLMPérez FigueroaRE.Understanding patients' and doctors' attitudes about shared decision making for advance care planning. Health Expect2014; 18(6): 2054–2065.
19.
ClaudettKHBClaudettMHBWongMACS, et al. Nonin-vasive mechanical ventilation in patients with chronic obstructive pulmonary disease and severe hypercapnic neurological deterioration in the emergency room. Eur J Emerg Med2008; 15(3): 127–133.
20.
MomenNHadfieldPKuhnI, et al. Discussing an uncertain future: end-of-life care conversations in chronic obstructive pulmonary disease. A systematic literature review and narrative synthesis. Thorax2012; 67(9): 777–780.
21.
PatelMIPeriyakoilVSMooreD, et al. Delivering end-of-life cancer care: perspectives of providers. Am J Hosp Palliat Med2018; 35(3): 497–504.
22.
CipollettaSOprandiN.What is a good death? Health care professionals’ narrations on end-of-life care. Death Stud2014; 38(1): 20–27.
23.
DavisonSNSimpsonC.Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ2006; 333(7574): 886.
24.
LewisECadorna-MorrellMOngKY, et al. Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A syatematic review. Palliat Med2016; 30(9): 807–824.
25.
HemsleyBMeredithJBryantL, et al. An integrative review of stakeholder views on Advance Care Directives (ACD): barriers and facilitators to initiation, documentation, storage, and implementation. Patient Educ Couns2019; 102: 1067–1079.
26.
SchwedaMSchicktanzSRazA, et al. Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel. BMC Med Ethics2017; 18(1): 13.
27.
CilibertiRGoriniIGazzanigaV, et al. The Italian law on informed consent and advance directives: new rules of conduct for the autonomy of doctors and patients in end-of-life. J Crit Care2018; 48: 178–182.
28.
FlickU.An introduction to qualitative research. Thousand Oaks, CA: Sage, 2004.
29.
BascheCE.Focus groups interview: an underutilized research technique for improving theory and practice in health education. Health Q1987; 14: 411–418.
30.
ShrankWHKutnerJSRichardsonT, et al. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med2005; 20(8): 703–709.
31.
BraunVClarkeV.Using thematic analysis in psychology. Qual Res Psychol2006; 3 (2): 77–101.
32.
ForbesSBern-KlugMGessertC.End-of-life decision making for nursing home residents with dementia. J Nurs Scholarsh2000; 32: 251–259.
33.
DeningKHJonesLSampsonEL.Advance care planning for people with dementia: a review. Int Psychogeriatr2011; 23(10): 1535–1551.
34.
MiraJJLorenzoSVitallerJ, et al. Patients' rights. More than a question of attitude. Gac Sanit2010; 24(3): 247–250.
35.
NavarroBBSánchezMGAndrésFP, et al. Living will declarations: qualitative study of the elderly and primary care general practitioners. Aten Prim2011; 43(1): 11–17.
36.
CarusoRRoccoGDellafioreF, et al. ‘Nosce te ipsum’: an Italian national survey to explore choice's differences in End of Life (EoL) care between healthcare professionals and general public. Appl Nurs Res2019; 46: 8–15.
37.
MarcoCALarkinGLMoskopJC, et al. Determination of “futility” in emergency medicine. Ann Emerg Med2000; 35(6): 604–612.
38.
LeBHCWattJN. Care of the dying in Australia's busiest hospital: benefits of palliative care consultation and methods to enhance access. J Palliat Med2010; 13(7): 855–860.
39.
RodriguezRMWangNEPearlRG.Prediction of poor outcome of intensive care unit patients admitted from the emergency department. Crit Care Med1997; 25(11): 1801–1806.
40.
BenzioBM.Advance Health Care Directives: problems and solutions for the elder law and estate planning practitioner. St Thomas Law Rev2013; 26: 37–63.
41.
O’BrienMRWhiteheadBJackBA, et al. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study. Disabil Rehabil2012; 34(3): 247–256.
42.
SchiffRSacaresPSnookJ, et al. Living wills and the mental capacity act: a postal questionnaire survey of UK geriatricians. Age Ageing2006; 35(2): 116–121.
43.
MezeyMTeresiJRamseyG, et al. Decision-making capacity to execute a health care proxy: development and testing of guidelines. J Am Geriatr Soc2000; 48: 179–188.
44.
LotzJDDaxerMJoxRJ, et al. “Hope for the best, prepare for the worst”: a qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med2017; 31: 764–771.
45.
SellarsMClaytonJMMortonRL, et al. An interview study of patient and caregiver perspectives on advance care planning in ESRD. Am J Kidney Dis.2017; 71(2): 216–224.
46.
StewartFGoddardCSchiffR, et al. Advance care planning in care homes for older people: a qualitative study of the views of care staff and families. Age Ageing2011; 40: 330–335.
47.
JeongSYHigginsIMcMillanM.Experiences with advance care planning: nurses’ perspective. Int J Older People Nurs2011; 6: 165–175.
48.
WeathersEO’CaoimhRCornallyN, et al. Advance care planning: a systematic review of randomised controlled trials conducted with older adults. Maturitas2016; 91: 101–109.
49.
MichaelNO’CollaghanCClaytonJ, et al. Understanding how cancer patients actualize, relinquish, and reject advance care planning: implications for practice. Support Care Cancer2013; 21: 2195–2205.
50.
CipollettaSGamminoGFrancesconP, et al. Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis: a pilot study. Health Soc Care Community2018; 26: 556–563.
51.
FosseASchaufelMARuthsS, et al. End-of-life expectations and experiences among nursing home patients and their relatives–a synthesis of qualitative studies. Patient Educ Couns2014; 97(1): 3–9.
52.
HogdenAFoleyGHendersonRD, et al. Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc2017; 10: 205.
53.
AndersenPMAbrahamsSBorasioGD, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)–revised report of an EFNS task force. Eur J Neurol2012; 19(3): 360–375.
54.
BarbourRSSchwartzLThompsonTDB. Health professionals’ views on advance directives: a qualitative interdisciplinary study. Palliat Med2003; 17(5): 403–409.
