Healthcare providers need to better understand the end-of-life situations of in-home amyotrophic lateral sclerosis (ALS) patients to support their desires about where to die and to allow peaceful death.
Purpose:
To clarify the situations of individuals with ALS in the last stages of illness according to the place of death as reported by home care nurses.
Methods:
Minimum structured interviews were conducted with 14 home care nurses, and data regarding 14 ALS patients who died were collected.
Results:
Six patients died at home, and eight died at the hospital. Many sudden deaths were observed among the patients who died at home, whereas pneumonia was often the cause of death in the hospital.
Conclusion:
Providing family education and ensuring the availability of local family physicians are vital to meeting a patient's desire to die at home. Home care nursing should be introduced in the early stage after diagnosis to provide support to patients for timely decision-making.
TorresAL. The management of respiratory insufficiency in patients with ALS at or near the end of life. Home Healthcare Nurse. 2012;30(3):186–194.
2.
WhiteheadBO’BrienMRJackBAMitchellD. Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med. 2011;26(4):368–378.
3.
PukanJPenderNPHardimanO. Cognitive impairment in amyotrophic lateral sclerosis. Lancet Neurol. 2007;6(11):994–1003.
4.
MillerRGJacksonCEKasarskisEJ. Practice parameter update: the care of the patients with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review). Neurology. 2009;73(15):1227–1233.
5.
MitsumotoHBrombergMJohnstonW. Promoting excellence in end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2005;6(3):145–154.
6.
LippoPMitoshiEZoingMCKieranMCHodgesJR. How common are behavioral changes in amyotrophic lateral sclerosis?Amyotroph Lateral Scler. 2011;12(1):45–51.
7.
ShimmonsZ. Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. Neurologist. 2005;11(5):257–270.
8.
KimuraFShinodaKFujiwaraS. The change of clinical characteristics in 100 Japanese amyotrophic lateral sclerosis patients between 1980 and 2000 [in Japanese]. Rinsho Shinkeigaku. 2003;43(7):385–391.
9.
ShingokuKTanabeY. Main cause of death and prognosis of ALS patients who underwent TPPV [in Japanese]. Nanbyo to Zaitaku Kea. 2010;16(1):55–57.
10.
UshikuboMOkamotoK. Circumstances surrounding death and nursing difficulties with end-of-life care for individuals with ALS in central Japan. Int J Palliat Nurs. 2012;18(1):556–560.
11.
GilJFunalotBVerschuerrenV. Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study. Eur J Neurol. 2008;15(11):1245–1251.
12.
SpataroRLo ReMPiccoliTLa BellaV. Causes and place of death in Italian patients with amyotrophic lateral sclerosis. Acta Neurol Scand. 2010;122(3):217–223.
13.
YangRHuangRChenD. Causes and places of death of patients with amyotrophic lateral sclerosis in South-West China. Amyotroph Lateral Scler. 2011;12(3):206–209.
14.
ManderRNAndersonFAMillerRG. The ALS patients care database: insights into end-of-life care in ALS. Amyotroph Lateral Scler. 2001;2(4):203–208.
15.
NeudertCOliverDWasnerMBorasioGD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248(7):612–616.
16.
KühnleinPKublerARaunboldS. Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation. Amyotroph Lateral Scler. 2008;9(2):91–98.
17.
FukuiSYoshiuchiKFujitaJSawaiMWatanabeM. Japanese people’s preference for place of end-of-life care and death: a population-based nationwide survey. J Pain Symptom Manage. 2011;42(6):882–892.
18.
MandlerRNAndersonFAMillerRG. The ALS patient care database: insights into end-of-life care in ALS. ALS Other Motor Neuron Disorders. 2001;2(4):203–208.
19.
HogdenAGreenfieldDNugusPKiernanMC. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?Patient Prefer Adherence. 2013;7:171–181.
20.
LauboMMidgrenB. Survival of patients on home mechanical ventilation: a nationwide prospective study. Respir Med. 2007;101(6):1074–1078.
21.
FoleyGTimonenVhardimanO. Patients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler. 2012;13(1):11–24.
22.
HebertRSSchulzRCopelandVCAmoldRM.Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manage. 2009;37(1):3–12.
23.
KrivickasLSShockleyLMitsumotoH. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci. 1997;152 (suppl 1):S82–S89.
24.
GoyERCarterJGanziniL. Neurologic disease at the end-of-life: caregiver descriptions of Parkinson’s disease and amyotrophic lateral sclerosis. J Palliative Care. 2008;11(4):548–554.
25.
OtaniTUshikuboMInokumaATomitaCIkedaMOkamotoK. Death conference between hospital staff and community care practitioners regarding a patient with amyotrophic lateral sclerosis. Jpn Prim Care Assoc. 2012;35(3):216–221.
26.
O’BrienMRWhiteheadBJackBAMitchellD. The need for support services for family carers of people with motor neurone disease (MND): view of current and former family caregivers a qualitative study. Disabil Rehabil. 2012;34(3):247–256.
27.
O’BrienMRWhiteheadBMurphyPMitchellJDJackBA. Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?Palliat Med. 2012;26(2):123–131.
28.
OliverDTurnerM. Some difficult decisions in ALS/MND. Amyotroph Lateral Scler. 2010;11(4):339–343.
29.
HodgenAGreenfieldDNugusPKiermanMC. What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Prefer Adherence. 2012;6:829–838.
30.
TrailMNelsonNDvanJNAppelSHLaiEC. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci. 2003;209(1-2):79–85.
31.
HodgenAGreenfieldDNugusPKiernanMC. Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the view of health professionals. Patient Prefer Adherence. 2012;6:691–701.
32.
BarrasACHAdlerDFerfogliaRI. Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary workgroup. Swiss Med Wkly. 2013;143:w13830.
33.
HashizumiAYamamotoMUchiyamaT. Challenge to implement advanced directives to ALS patients [in Japanese]. Nanbyo to Zaitaku Care. 2007;13(4):57–61.
34.
OginoM. ALS and advanced directives [in Japanese]. Iryo. 2005;59(7):389–393.
35.
HardimanO. Management of respiratory symptoms in ALS. J Neurol. 2011;258(3):359–365.
36.
AndersenPMAbrahamsSBorasioGD. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report on an EFS task force. Eur J Neurol. 2012;19(3):360–375.
37.
RayRBrownJ. Managing death in ALS/MND: identifying caregivers’ perspectives of the final days of life. In: Proceedings of 20th International Symposium on ALS/MND, Germany, Berlin, December 8-10, 2009.
38.
WallaceEMCooneyMCConroyMTwomeyF. Why do palliative care patients present to the emergency department? Avoidable or unavoidable?Am J Hosp Palliat Med. 2012; 30(3):253–256.
39.
LedererWFeichtnerAMedicusE. The palliative treatment plan as basis for informed decisions in palliative or emergency care. Wien Med Wochenscr. 2011;161(21-22):543–547.
40.
UshikuboMTomitaCInokumaAIkedaMOkamotoK. Illness course and circumstances of death among individuals with rapidly progressive amyotrophic lateral sclerosis. Int Med J. 2013;20(4):446–449.
41.
RabkinJOginoMGoetzR. Tracheostomy with invasive ventilation for ALS patients: neurologists’ roles in the US and Japan. Amyotroph Lateral Scler Frontotemporal Degenr. 2013;14(2):116–123.
