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Review Article Open Access
Bechor Zvi Aminoff MD, PhD1,2*
Abstract
The Aminoff Suffering Syndrome in advanced Alzheimer disease and end-
of-life is characterized by a high Mini Suffering State Examination (MSSE) scale
score, less than 6 months survival, irreversible and intractable aggravation of suffering
and actively dying medical condition until demise. The Aminoff Suffering Syndrome
was rst dened by us, presented and published 10 years ago in the 10th International
Conference on Alzheimer’s disease and Related Disorders (Madrid, 2007). Its diag-
nosis in end-of-life was performed by measuring the suffering level of patients by
evaluating the Mini Suffering State Examination (MSSE) scale score. The treatment
of patients with Aminoff Suffering Syndrome at the end of life is a great challenge to
medical and nursing personnel. The diagnosis of Aminoff Suffering Syndrome opens
new horizons in the approach to anguish at end-of-life and provides a novel method
for identifying advanced Alzheimer’s disease patients that require immediate pallia-
tive treatment.
Keywords: Advanced Alzheimer disease; End of life; Aminoff suffering syndrome;
relief of suffering units; Palliative care.
*Corresponding Author: Dr. Bechor Zvi Aminoff, MD, PhD, Research Professor, Shamay St. 26, Fl. 2, El Ad, 40800, Israel;
Tel: 972-54-2450244; E-mail: bechorz@yahoo.com Website: www.aminoff-end-of-life-suffering-happiness.co.il
Received Date: July 31, 2017
Accepted Date: November 13, 2017
Published Date: November 15, 2017
Citation: Aminoff, B.Z. Aminoff Suffering
Syndrome in Advanced Alzheimer’s Disease
and End-of-Life: First 10 Years. (2017) Lett
Health Biol Sci 2(2): 86- 90.
Lett Health Biol Sci | volume 2: issue 2
www.ommegaonline.com
Introduction
Several important questions await experimental evi-
dence from well-validated clinical studies performed on patients
at the end-of-life. Such questions include:
1) How is the suffering level of patients who are enrolled in pal-
liative care measured?
2) Does palliative care successfully reduce and alleviate human
suffering until demise?
3) Which are the best validated tools for evaluating the suffering
level at the end of life, that is, from diagnosis of suffering before
and during palliative care, and until demise?
4) What is the best approach for diagnosing short survival at the
end of life?
Aminoff Suffering Syndrome in Advanced Alzheimer’s
Disease and End-of-Life: First 10 Years
Copyrights: © 2017 Aminoff, B.Z. This is an Open access article distributed under the terms of Creative Commons
Attribution 4.0 International License. 86
1The Minerva Center for the Interdisciplinary Study of End-of-Life, Tel Aviv University, Ramat Aviv, Israel
2Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer, Israel
Letters In Health and
Biological Sciences
Aminoff, B.Z
DOI: 10.15436/2475-6245.17.021
Abbreviation: ASS: Aminoff Suffering Syndrome, MSSE: Mini Suffering State
Examination, SM–EOLD: Symptom Management in End-of-Life in Dementia;
CAD–EOLD: Comfort Assessment in Dying with Dementia
Quote: The suffering of patients is not a function of disease; it is a function of inade-
quate medical and nursing care[1].
Undoubtedly, additional questions still remain to be answered.
According to the results of a prospective clinical study
on measuring the level of suffering at the advanced Alzheimer
disease and end of life, a new clinical and pathological entity
was dened, that is, Aminoff Suffering Syndrome. The data
were presented at world and international congresses in Madrid,
Saint-Petersburg, Trondheim, Paris, Honolulu, Athens, Copen-
hagen, Seoul and Edinburgh. The Aminoff Suffering Syndrome
raises a lot of interest in the scientic literature[2-5].
Aminoff Suffering Syndrome (ASS)
The Aminoff Suffering Syndrome in advanced demen-
tia is characterized by a high Mini Suffering State Examination
(MSSE) scale score, less than 6 months survival, irreversible
and intractable aggravation of suffering and actively dying med-
ical condition until demise[6-9].
In the year 1907, Dr Alois Alzheimer published a fa-
mous case report on Mrs Auguste Deter[10]. In an article pub-
lished in 2013, the authors[11] were able to establish that Mrs De-
ter suffered from Aminoff Suffering Syndrome. The last months,
weeks and days of Mrs Auguste Deter’s life was in high suf-
fering level by MSSE and denitely in Aminoff Suffering Syn-
drome with the description of her medical history and follow up
which was reported by Dr. Alois Alzheimer in 1906.
Mini Suffering State Examination scale (MSSE)
The MSSE (Table 1) scale[12,13] is the rst objective clin-
ical tool for the evaluation of suffering level in advanced demen-
tia. The MSSE scale nds extensive use in medical research[14-17]
and practice[18-21]. The MSSE scale is available in English, He-
brew, Dutch[22], Germane, Italian, Spanish and Slovenian[23], and
covers 10 items (range 0 - 10). A high MSSE scale score with
range of 7 - 10 indicates a high level of suffering, and reects the
severity of the medical condition in advanced dementia.
Table 1: The level of suffering in a patient with end-stage dementia can
be diagnosed objectively by means of a Mini Suffering State Examina-
tion (MSSE) consisting of 10 questions.
Suffering State YES – 1 NO - 0
1Not calm
2 Screams
3 Pain
4 Decubitus ulcers
5Malnutrition
6 Eating disorders
7Invasive action
8 Unstable medical condition
9Suffering according to medical opinion
10 Suffering according to family opinion
MSSE score
The MSSE Score Interpretation:
Low level of suffering 0 - 3
Intermediate level of suffering 4 - 6
High level of suffering 7 - 10
A high MSSE score indicates a high level of suffering. The
MSSE can be used as a diagnostic tool in the treatment and prevention
of suffering in a patient with end-stage dementia. The well-being of an
end-stage dementia patient is in inverse proportion to his level of suffer-
ing. The end-stage dementia patient with a low MSSE score has a good
quality of life.
The MSSE scale was tested using the Cronbach α mod-
el, which demonstrated its signicant reliability (α = 0.798). A
κ agreement coefcient of 0.791 between two observers was
found. Both observers found a signicant association between
the three MSSE levels and age (P = 0.02), haemoglobin (P =
0.02), albumin (P < 0.001), cholesterol (P = 0.04), use of analge-
sics or antipsychotics (P = 0.04).
The convergent validity of the MSSE scale was proven
by Pearson correlation with Symptom Management in End-of-
Life Dementia (SM–EOLD) scale (r = 0.574, P < 0.0001) and
Comfort Assessment in Dying with Dementia (CAD–EOLD)
scale[24] (r = -0.796, P < 0.0001). The mean survival of end-stage
dementia patients with a low MSSE scale score (MSSE = 2. 24
± 0.99) was 57.76 ± 9.73 days, and with a median MSSE scale
score (MSSE = 4.92 ± 0.83), the mean survival was 44.70 ±
5.99 days. In the high MSSE scale score group (MSSE = 8.06 ±
1.00), mean survival was much lower (27.54 ± 4.16 days)[25].
The differences between the survival times of the three
MSSE scale score groups was evaluated by Kaplan-Meier anal-
ysis (Log Rank, P = 0.0018, Breslow, P = 0.0027) and were
signicant (Figure 1). The results of the Cox proportional Haz-
ard model of survival showed a high correlation between high
MSSE scale score and high risk of mortality, and short survival
of end-stage dementia patients during the last 6 months of life
with signicant predicting validity (P = 0.013)[26].
Figure 1: Kaplan-Meier survival curves showing the relation between
six-month survival of end-stage dementia patients and level of MSSE
score.
Seventy-one end stage dementia patients have been studied.
The difference between the survival curves of the three
groups of patients was statistically signicant: Log Rank (Man-
tel-Cox) P = 0.001; Breslow Test (Generalized Wilcoxon) P =
0.001
According to the MSSE scale, it was conrmed that pa-
tients with end-stage dementia represent a heterogeneous group
and have different levels of suffering, and accordingly proved
a signicant concurrent validity. The results of the current re-
search showed that hospitalization in the geriatric department
of a tertiary hospital in Israel failed to reduce the high level of
suffering of such patients. The total score of the MSSE scale of
advanced dementia patients, on the day of admission to the geri-
atric department was 5.62 ± 2.31, and increased to 6.89 ± 1.95
on the last day of life with a signicant test-retest reliability (P <
0.0001)[27].
Despite traditional medical and nursing care, a large
proportion of dying patients with dementia experienced in-
creased suffering as they approached death. According to the
MSSE scale, 63.4 and 29.6% experienced high and intermediate
levels of suffering, respectively, with only 7% having a low lev-
el of suffering upon their demise[28].
On the last day of life, 71.8% of dying patients with de-
mentia and Aminoff Suffering Syndrome were not calm, 71.4%
had decubitus ulcers, 94.4% suffered from malnutrition, 95.8%
had eating disorders, 90.1% experienced invasive procedures
and 90.1% were in an unstable medical condition. The suffer-
ing level in advanced dementia has a signicant correlation with
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Aminoff Suffering Syndrome
short survival, advancing age, more severe illness, malnutrition,
the existence of decubitus ulcers and the administration of med-
ications[28].
Discussion
The life of patients with end-stage dementia is lled
with grief, secretion and stench, suppuration and wounds, cry-
ing, screaming or silent pain. This appears to be the natural and
essential path of end-stage disease and aging. In the modern
world, despite advanced medical science, the society at large is
not always aware of the terrible suffering of elderly people in the
last stage of life[6].
The world outside the connes of the hospital is un-
aware of what transpires in the wards of hospitals and nursing
homes. This also applies to other tragic circumstances.
Physicians and nursing staff facing day and night with
difcult and exhausting tasks. Despite the difculty in coping, it
appears that medical personals have accepted this dreadful pro-
cess of death. The patients’ families are not always aware of this
reality. Those who are in fact aware of the seriousness of the
patient’s condition, often distance themselves from the hospital
and its environs. Others may engage in harsh altercations with
the medical staff responsible for treatment.
Medicine today facilitates extended longevity at a high
price of suffering to the patients, their families, and even to the
medical professionals. It is easy to calculate the daily and annual
costs of hospitalization. The maintenance costs are enormous
over such an extended period. In the future, with increasing suc-
cesses in the treatment of heart diseases and tumors, patients
with dementia may well be the majority in hospital departments.
One of the suggestions is preventing avoidable hospital admis-
sions for people with advanced dementia[29].
The perpetual and increased agony of an end-stage de-
mentia patient is reminiscent of the suffering of patients prior to
the era of anaesthesia or antibiotics. The main causes of suffer-
ing at the end-of-life are inadequate medical and nursing care,
overprotection phenomenon with dying patients[30,31] and Geriat-
rics D refusal phenomenon[32].
Possible solutions to suffering at the end of life include
measuring the level of suffering, and enrolment of patients di-
agnosed with Aminoff Suffering Syndrome to homes or hospital
palliative care settings, or alternatively to Relief of Suffering
Units[33,34] within hospitalization departments. The Relief of Suf-
fering Units that can perform daily medical task without any
new pecuniary or equipment expense should switch from futile
intensive medical care to intensive nursing care. Intensive nurs-
ing care could prevent and relieve suffering at the end-of-life by
a more meticulous approach to symptoms of not calm, screams
and pain, decubitus ulcers, malnutrition and eating disorders,
and thus obviate futile invasive action. Special vigilance and
tenderness, warm hands, constant surveillance of the dying pa-
tient and intensive professional nursing care are challenges for
nursing staff, and are a guarantee for relief and prevention of
suffering at the end of life.
The suffering assessment[35-39] and quality of dying
evaluation[40,41] are important at the end of life. Some available
instruments developed for suffering assessment in end of life
are: Initial assessment of suffering[42], Pictorial Representation
of Illness and Self Measure[43], Suffering Assessment Tool[44],
Lett Health Biol Sci | volume 2: issue 2
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Aminoff, B.Z
Aminoff Suffering Syndrome
State of Suffering-V[45], The Suffering Scales[46], and Structured
Interview for Symptoms and Concerns Scale[47].
The outcomes assessed in palliative care involve symp-
toms, physical signs, laboratory tests, evaluation scales, ques-
tionnaires for activities of daily living or quality-of-life, in order
to interpret the quality of provided care[48,49]. Unfortunately, the
overall reporting rate for the validation of articles in palliative
care journals is only 1.43 %[50], and there is a paucity of studies
on patient-centered validation methods.
Proposals
The authors appeal to all medical researchers involved
in geriatric care to perform experimental prospective studies in
their respective clinical settings:
1. Diagnosis of Aminoff Suffering Syndrome in end-of-life pa-
tients with cancers and other malignant neoplasms.
2. Diagnosis of Aminoff Suffering Syndrome in end-of-life pa-
tients with AIDS, heart, kidney, pulmonary and liver diseases.
3. Measurement of suffering level by diagnosis of Aminoff Suf-
fering Syndrome on the day of admission and on the last day of
life to evaluate effectiveness of treatment in a hospice setting.
4. Routine diagnosis of Aminoff Suffering Syndrome in geriat-
ric, internal medicine, surgery and other departments for subse-
quent enrolment of patients in palliative care or Relief of Suf-
fering Units.
Conclusion
Aminoff Suffering Syndrome awaits its wide use in
medicine[51]. Its diagnosis could reduce the suffering of patients
at the end of life by adequate medical and nursing care[52]. Deal-
ing with Aminoff Suffering Syndrome at the end of life provides
a genuine challenge to nursing and medical personnel[53].
Conict of Interest: The author declares that there is no poten-
tial conict of interest with respect to the research, authorship,
and/or publication of this article.
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