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Pain at end-of-life among patients with amyotrophic lateral sclerosis receiving noninvasive ventilation

Mitsuko Ushikubo

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DOI: http://dx.doi.org/10.15520/ijnd.2017.vol7.iss7.233.36-39

Abstract


The purpose of this study was to clarify aspects of pain before death among patients with amyotrophic lateral sclerosis (ALS) receiving noninvasive positive pressure ventilation (NPPV). The participant in this study was an excellent nurse manager. We conducted a semi-structured interview regarding three ALS patients who had been receiving NPPV during the last month before death. Data were analyzed using inductive qualitative analysis.The deceased ALS patients who had been receiving NPPV were two males and one female ranging in age between their 60s and 70s. The period from onset of ALS to death ranged from 18–31 months. The duration of NPPV use ranged from 1.5 months to 2 years. The following seven categories were extracted as aspects of patients’ pain: physical pain; anxiety about their children; regrets about life; pain from a bad family relationship; pain from strong pride; pain from fluctuating decision making about medical treatment for respiratory problems; and pain from not being able to express gratitude to others. Nurses and other health care professions should employ the concept of “total pain” and a community-integrated approach to provide palliative care to ALS patients receiving NPPV at end-of-life.


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References


Torres AL. The management of respiratory insufficiency in

patients with ALS at or near the end of life. Home Healthc Nurse

; 30(3):186-194.

Societes Neurologica Japonica, ed.: Practical guidelines for

amyotrophic lateral sclerosis. Nankodo Co., Ltd, Tokyo,2013;123.

Tagami M, Kimura F, Nakajima H, et al. Tracheostomy and

invasive ventilation in Japanese ALS patients: decision-making and

survival analysis: 1990-2010. J Neurol Sci 2014;344(1-2):158-164.

Kurisaki R, Yamashita S, Sakamoto T, et al. Decision making of

amyotrophic lateral sclerosis patients on noninvasive ventilation to

receive tracheostomy positive pressure ventilation. Clin Neurol

Neurosurg 2014; 125: 28-31.

Kimura F. Tracheostomy and invasive mechanical ventilation in

amyotrophic lateral sclerosis: decision-making factors and survival.

Rinsho shinkeigaku (Clin Neurol) 2016;56(4):241-247(in Japanese,

Abstract in English).

Quill CM, Quill TM. Palliative use of noninvasive ventilation:

navigating murky waters. J Palliat Med 2014;17(6):657-661.

Ushikubo M, Iida M, Sasaki K. Literature review of palliative end-

of-life care for patients with amyotrophic lateral sclerosis under

non-invasive positive-pressure ventilation KMJ, 2017;66(4):55-62.

(in Japanese, Abstract in English)

Pizzimenti A, Aragona M, Onesti E. Depression, pain and quality

of life in patients with amyotrophic lateral sclerosis: a cross-

sectional study. Funct Neurol. 2013; 28(2):115-9.

Xu J, Nolan MT, Heinze K, et al. Symptom frequency, severity

and quality of life among persons with three disease trajectories:

cancer, ALS, and CHF. Appl Nurs Res. 2015; 28(4):311-5.

Pagnini F, Lunetta C, Banfi P, et al. Pain in amyotrophic lateral

sclerosis: a psychological perspective. Neurol Sci. 2012;

(5):1193-6.

Chió A, Mora g, Lauria G. Pain in amyotrophic lateral sclerosis.

Lancet Neurol. 2017; 16:144-157.

Handy Cr, Krudy C, Boulis N, et al. Pain in amyotrophic lateral

sclerosis: a neglected aspect of disease. Neurol Res Int. 2011;

doi:10.1155/2011/403808

Chió A, Canosa A, Gallo S, et al. Pain in amyotrophic lateral

sclerosis: a population-based controlled study. Eur J Neurol 2012

Ganzini L, Johnston WS, Shilveria L. The final month of life in

patients with ALS. Neurology 2002;59(39):428-431.

Mehta A, Chan L. Understanding of the concept of “Total Pain”:

A Prerequisite for Pain Control. J Hosp Palliat Nurs 2008;10(1):26-

Sauders CM. The management of terminal malignant disease

(2nd). London: Edward Arnold. 1984; 232-241

Ushikubo M, Tomita C, Inokuma A, et al. Illness course and

Circumstances of death among individuals with rapidly progressive

amyotrophic lateral sclerosis, International Medical Journal.

(4),2013446-449.

Cordess V, Sidorok F, Schimmel P, et al. Coordinated care

affects hospitalization and prognosis in amyotrophic lateral

sclerosis: a study. BMC health Serv Res 2015;

Doi:10.1186/s12913-015-0810-7.


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