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J Neurol Sci 1997 Oct;152 Suppl 1:S93-6

End of life decisions in amyotrophic lateral sclerosis: a cross-cultural
perspective.

Smyth A, Riedl M, Kimura R, Olick R, Siegler M

University of Chicago and MacLean Center for Clinical Medical Ethics, IL
60637-1470, USA. krainey@medicine.bsd.uchicago.edu

In an era where life-sustaining technology offers physicians unprecedented
powers to prolong survival in terminal illness, the question of how end of
life decisions are made has become a major subject of study and debate.
Amyotrophic lateral sclerosis (ALS) is a disease in which physical ability
declines while mental capacity most often remains intact. Since most
patients with ALS die of respiratory failure, a distinguishing feature of
this disease is whether a patient is offered and accepts a chance to go on
long-term mechanical ventilation. This unusual feature makes ALS a
compelling model for studying end of life decisions in different countries.
This paper reviews the literature and presents preliminary data on how end
of life decisions in ALS are made in the US, Great Britain, and Japan. We
address this issue by examining how cultural differences in truth-telling
and informed consent, societal differences in attitudes toward the use of
artificial life support, and legal differences in the role and status of
advance directives in each country influenced decisions in the following
three groups of patients: (1) the mentally competent; (2) mentally
incompetent patients who previously completed advance directives when
competent; and (3) mentally incompetent patients who have not provided
advance guidance about their wishes.

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Mayo Clin Proc 1991 Sep;66(9):906-13

Amyotrophic lateral sclerosis and life-sustaining therapy: patients'
desires for information, participation in decision making, and
life-sustaining therapy.


Silverstein MD, Stocking CB, Antel JP, Beckwith J, Roos RP, Siegler M


Division of Area Medicine, Mayo Clinic, Rochester, MN 55905.


To identify the wishes of patients with amyotrophic lateral sclerosis (ALS)
for information, participation in decision making, and life-sustaining
therapy and to determine whether these wishes are stable over time, we
conducted a prospective survey (baseline and 6-month follow-up interviews)
of 38 consecutive patients with an established diagnosis of ALS at the
University of Chicago Motor Neuron Disease Clinic. Demographic data,
clinical stage of ALS, illness experience, wishes for information, and
desires for participating in decisions about life-sustaining therapy were
elicited. Patients readily expressed their wishes for specific information
on communication aids and ventilator care for respiratory failure.
Demographic, socioeconomic, and clinical characteristics did not predict
patients' desires for information and decision making. The preferences for
information and participation in decisions were stable during the 6-month
study period, whereas preferences for cardiopulmonary resuscitation in two
hypothetical circumstances were less stable. Changes were unrelated to
demographic or clinical characteristics of the patients. Because many
patients with ALS change their preferences for life-sustaining therapy,
advance directives for end-of-life care must be reevaluated periodically.

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J Neurol 1998 Aug;245 Suppl 2:S7-12; discussion S29

Mechanical ventilation in amyotrophic lateral sclerosis: a cross-cultural
perspective.

Borasio GD, Gelinas DF, Yanagisawa N

Department of Neurology, Ludwig-Maximilians-Universitat, Klinikum
Grosshadern, Munchen, Germany.

Mechanical ventilation is known to be an effective means of relieving
symptoms of chronic hypoventilation and prolonging life in patients with
amyotrophic lateral sclerosis (ALS). Various methods of mechanical
ventilation are available to patients with ALS. However, attitudes towards
mechanical ventilation in ALS vary widely across different cultures, and
even within a given medical system. This article describes differences and
similarities between a North American, a European and a Japanese approach,
based on the respective medical and cultural traditions. The common goal is
to provide optimal palliative care to patients with ALS.

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Respiration 1994;61(2):61-7


Review of respiratory care of the patient with amyotrophic lateral sclerosis.


Sherman MS, Paz HL


Department of Medicine, Hahnemann University, Philadelphia, Pa.


Respiratory failure is the leading cause of death in patients with
amyotrophic lateral sclerosis (ALS). We review the physiology of respiratory
compromise in ALS and techniques of monitoring respiratory function.
Treatment options, including pharmacologic interventions, aspiration
precautions, and invasive and noninvasive modes of mechanical ventilation
are reviewed. Our clinical experience with respiratory failure in ALS
demonstrates significantly prolonged survival in subjects who elect to
receive noninvasive mechanical ventilation (19.25 vs. 80.4 days, p < 0.01).
Four of 18 patients who elected to receive noninvasive ventilation decided
to discontinue treatment. Four of 13 patients who were receiving mechanical
ventilation elected to discontinue life support. The decision to utilize
these modalities must be made with realistic considerations of the patient's
quality of life.

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Health Soc Work 1998 Feb;23(1):35-43


Against all odds: positive life experiences of people with advanced
amyotrophic lateral sclerosis.


Young JM, McNicoll P


G. F. Strong Rehab Centre, Vancouver, British Columbia, Canada.
jyoung@bcrehab.bc.ca


The study discussed in this article describes the nature of positive life
experiences of 13 people coping exceptionally well while living with
advanced amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, and
the resulting significant physical disability. The most powerful themes to
emerge were the use of cognitive reappraisal, reframing, and intellectual
stimulation as coping mechanisms; the development of wisdom; and the vital
importance of interpersonal relationships. On the basis of our findings, we
make suggestions for ways professionals can assist people with ALS and their
significant others.

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J Neurol 1998 Aug;245 Suppl 2:S4-6; discussion S29

Ethical considerations in disease management of amyotrophic lateral
sclerosis: a cross-cultural, worldwide perspective.

Russell JA

Department of Neurology, Tufts University School of Medicine, Lahey
Hitchcock Clinic, Burlington, MA 01805, USA.

Amyotrophic lateral sclerosis (ALS) is universally fatal. Technological
advances have provided a means to impact upon, without radically improving,
the natural history of the disease. In addition, we now have the capability
of potentially identifying patients who are pre-symptomatic carriers of the
rare heritable forms of the disease. These capabilities provide the basis
for the numerous ethical dilemmas that face patients, physicians, and
agencies responsible for health care expenditures; dilemmas that can only be
amplified between cultures. This paper attempts to address some of the major
ethical issues germane to the care of ALS patients. It discusses the
emergence of autonomy as the reigning principle of medical ethics in the
United States and its potential conflict with the ethical dilemma of limited
resource allocation. Finally, it attempts to compare and contrast, in an
admittedly anecdotal and fragmentary fashion, the perspective of other
cultures regarding the care of ALS patients.


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