The 10th International Conference on Alzheimer’s disease and Related Disorders, Madrid, Alzheimer’s & Dementia July 2006, Volume 2, Issue 3, Suppl 1, p. S580.
Refusal Phenomenon Appertaining to End Stage Dementia Patients
B.Z. Aminoff, MD, PhD
Geriatric Division, The Chaim Sheba Medical Center, Tel-Hashomer, and Human Suffering and Satisfaction Research Center, El-Ad, Israel
Key words: end stage dementia, refusal phenomenon, suffering
In memory of the Geriatrics D Department that implemented the refusal phenomenon and suspended its services due to failure in coping with the suffering of end stage and dying dementia patients, hospital caregiver staff, and family members.
The “refusal phenomenon” appertaining to end stage dementia patients (ESDP) has never been was described in medical literature. The refusal phenomenon is entirely different from the well-known “burn out syndrome”, and is a separate and independent sphere of abuse and neglect of elderly patients. In the burn out syndrome the staff is motivated to provide care, and they understand the importance of the challenge, but are exhausted due to the enormous burden. In the refusal phenomenon every effort is made to avoid admission of ESDP and numerous techniques are employed to discharge these patients from the department.
In the refusal phenomenon, the Health Insurance Funds and hospital caregiver staff reject the importance of the challenge to provide appropriate care to ESDP. The refusal phenomenon applied to ESDP by health services is one of the main causes of suffering in this affliction.
We developed a novel objective tool for measuring suffering in ESD. The Mini-Suffering Examination (MSSE) was presented at congresses in Berlin (1999), Jerusalem (2000), Vancouver (2001), Stockholm (2002), Tokyo (2003), Las-Vegas (2004), Rio-de-Janeiro (2005) and the Committee for Labor, Social Services and Health of the Israeli Knesset (2005), and published in the Archives of Gerontology and Geriatrics (2004;38:123-130).
The results of our research regarding measuring of suffering level of dying dementia patients have been published in the American Journal of Alzheimer Disease and other Dementias (2004;19:243-247) and the American Journal of Hospice & Palliative Medicine (2005;22:344-348. ). We have proved that the MSSE score on the day of admission was 5.62± 2.31, and increased to 6.89±1.95 on the last day of life (P < 0.0001). ). According to the MSSE scale, 63.4% and 29.6% of patients died with high and intermediate level of suffering, respectively. The only response to these disturbing results was closure of the geriatric department wherein we developed the MSSE scale and provided objective, experimental measuring of suffering in end stage and dying dementia patients.