Bechor Zvi Aminoff 2007. Measurement of
suffering in end-stage Alzheimer’s disease.
Tel Aviv: Dyonon; IS BN 965-7077-37-0;
US $ 39.00
The book ‘Measurement of suffering in end stage Alzheimer’s disease’ deals, as the title states, primarily with aspects of suffering with dementia in the older population. Suffering in this group of people does also have a link to technology, since some technology may contribute to suffering, such as feeding tubes, or relief suffering, for instance, special anti-decubitus mattresses.
The book is an overview of extensive research carried out by Dr Aminoff and his colleagues, which has been presented at many (inter)national conferences and published in a number of renowned journals.
Aminoff explains why he started his investigation of suffering in end-stage dementia,
instead of quality of life, satisfaction or well-being, by stating that due to the health
status of older people with end-stage dementia and their inability to communicate,
other concepts than suffering are not appropriate.
What can be seen, felt, pursued, and therefore treated and possible prevented is the level of suffering. Aminoff introduces the Entropy Theory of Human Suffering. In his view, the ageing process presents an increasing level of entropy, a process of the loss
of reserves of the system until survival is no longer possible, and the human being passes away.
In order to examine suffering, Aminoff developed and validated an objective tool, called scale or MSSE, which reaches from 0 to 10, and covers 10 items. MSSE should not be mistaken for MMSE, the well-known Mini Mental State Examination. Suffering exists in various degrees and levels of suffering can be high (7-10), intermediate (4-6) or low (0-4). Items on the MSSE scale are: (i) not calm, (ii) screams, (iii) pain, (iv) decubitus ulcers, (v) malnutrition,(vi) eating disorders, (vii) invasive actions, (viii) unstable medical conditions, (ix) suffering according to medical opinion, and (x) suffering according to family opinion.
Part 1 of the book addresses these 10 items in great detail, and empirically shows how
they relate to suffering, and how they relate to 6-month survival rates of patient populations in geriatric wards. Many items turn out to be predictors of imminent or quick passing away. In general, it turns out that the higher a person’s MSSE score, the sooner this person tends to die.
Another interesting feature of the book is the analysis why older people with end-stage dementia suffer, and how medical and nursing staff treat these sufferers. Many, according to the book, are not familiar with how to reduce suffering, partly because it is not a regular part of curricula and is not sufficiently covered by medical literature. A remarkable phenomenon, often unknown to people outside of the care environment, is the refusal phenomenon, which may be mistaken for burn out. Some staff may reject important challenges to provide appropriate care, deny existence of the patient’s personality and rights, and may not invest sufficient time for treatment. The book also mentions hospices for end-stage dementia patients with a high MSSE score as a way to reduce suffering, and to allow people to pass away in a dignified way. An eye-opener was to learn that extra treatment, often asked for by relatives not wanting to lose their loved one, can even contribute to extra suffering. Aminoff calls this the overprotection phenomenon.
The book has certain remarkable features, of which Part 2, a booklet of posters, in which the author explains his research chronologically and step-by-step, is the most prominent.
The author takes the reader by the hand, and even though medical jargon is used in great quantities, constant repetition of information makes it interesting for non-medical specialists and family members of people with dementia. This is reinforced by the running head on the cover, saying ‘for you and your physician’.
The book, which has been written by an author from the Holy Land, is indeed punctuated with quotes from and references to the Torah and the Bible to reinforce statements made.
The book is further characterized by many pages with large quotes that sum up the essence of previous pieces of text, and many figures and tables to elaborate and illustrate the work.
At the same time, readability could, in my view, be improved by omitting or summarizing large sections of Part 2 and integrating them into Part 1, also to reduce the number of repetitions in the abstracts making up Part 2. It was good to learn that the MSSE scale, which was developed in Israel and translated into English, has also been translated in Dutch for use in nursing homes, since the Netherlands is a country known for its large amount of care facilities for people with dementia.
The best quote that should appeal to all interested in the subject appears on page 126:
“Where should death occur? I would prefer to die in my own bed, in my own home. How would I like to die? With a low MSSE score!”
J. van Hoof MSc
- Dr. Bechor Zvi Aminoff’s Quote:
- Diagnosis of Aminoff Suffering Syndrome by Mini Suffering State Examination scale score evaluation
- Mini Suffering State Examination (MSSE) scale
- End-of-Life Suffering
- Ten items of Mini Suffering State Examination scale (MSSE) on admission to geriatric department and at last day of life