Short paper: Family overprotection phenomenon of dying dementia patients.

©2006 by MEDIMOND S.r.l. G716C0583 687

Family Overprotection Phenomenon of Dying Dementia Patients

B.Z. Aminoff

Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer 52621 and Human
Suffering and Satisfaction Research Center, PO B 56, El-Ad 48900, Israel. E-mail:

The definition and comprehension of the overprotection phenomenon may help us to effectively intervene when it threatens to add additional suffering to dying terminal dementia patients, as well as their kin.

Key words: Dementia, overprotection phenomenon, dying, suffering.

Despite the devoted and traditional medical and nursing care, a large proportion of dying dementia patients experience an increasing amount of suffering as they approach death. One of the important causes of suffering in end
stage dementia (ESD) is defined by us as the “overprotection phenomenon”.

Materials and Methods:
Our recently developed objective tool, the (MSSE) scale evaluated the suffering level of patients with ESD (1, 2).

Significant reliability of the MSSE scale was evaluated by means of the Cronbach alpha = 0.736. Validity of the MSSE scale was proven by Pearson correlation with Symptom Management with End-of-Life in Dementia (SM–EOLD) scale (r = 0.574, P < 0.0001), and the Comfort Assessment in Dying with Dementia (CAD–EOLD) scale (r = -0.796, P < 0.0001). The differences between the survival times of the three MSSE scale score groups was evaluated by Kaplan-Meier analysis (Log Rank, P = 0.0018, Breslow, P = 0.0027) and proved to be significant. The results of the Cox proportional hazard model of survival showed a significant correlation between an elevated MSSE scale score and high risk of mortality and short survival of ESD patients during the last 6 months of life (P = 0.013) (3). The total score of the MSSE scale on day of admission was 5.62 ± 2.31, and increased to 6.89 ± 1.95 on the last day of life with a significant difference (P < 0.0001) (4). According to the MSSE scale, 29.6% and 63.4% of patients died with intermediate and high levels of suffering, respectively (5). Discussion and Conclusions: Treatment is lengthy and exhausts the medical and nursing staff, as well as family members of the patients. Occasionally, relatives of dying dementia patients, who are hospitalized in geriatric departments, have altercations with the medical and nursing staff. Patients at this stage are often suffering from untreatable or irreversible diseases, advanced cognitive decline, serious eating disturbances and decubitus ulcers. Family members may demand transfer to an internal medicine department, or an intensive care unit, in the hope of keeping their loved one alive. They believe that by providing “maximal treatment” the patient’s condition will improve and this will prevent demise. Usually the patient’s condition is still unstable and daily becomes more complicated and more severe. The likelihood of reversing, or even improving the situation, is minimal and slight, despite constant medical intervention. Every attempt to convey the irreversibility of the patient’s condition to the family only results in additional demands for more intensified treatment. For this phenomenon we coined the phrase “syndrome of overprotection of the elderly dementia dying patient” initially published as an Editorial in the American Journal of Hospice and Palliative Medicine (2005) (6).It is interesting that the majority of families of ESD patients accept the deteriorating condition of their loved ones, whereas a others are unable to do so and are not prepared to receive negative, “bad’’ information. They request “special and intensive” treatment, despite the knowledge that this may cause additional, profound suffering. Frequently the medical staff is pressurized to agree to tests and investigations, and unnecessary and painful complicated intervention treatments, even though these procedures are unable to reverse the dying process. Such procedures are only performed because of the hostile behavior of the family members. These individuals may also attempt to deny the suffering, pain or distress that is evident in the patient, and refuse prescription of narcotics, analgesics and sedatives. Despite the aim of providing palliative care to relieve suffering and improve quality-of-life, palliative treatment on its own is often refused. Why do the family members develop such close ties with their elderly parents? First of all it is because of their love and devotion to them. This is a trait pertaining only to human beings. Animals tend their of spring with devotion, but in most species this close link between parents and their young inevitably disappears. Exaggerated devotion and parental protection may not always be an altruistic trait. Offspring with a strong bond to their parents may not be concerned solely for their parents’ well-being. Actually, their principal concern may befor themselves. The parents’ presence provides a sense of security and eternal life. The passing of a parent from this world creates an empty gap and causes a void in the life of the offspring, who is confronted with the realization of being at the head of the line to the next world. These individuals hold onto ageing and ailing parents and try, at any price, and every avenue to drag them back from the edge of the abyss. Undoubtedly, ailing parents are entitled to any form of intervention that may heal, ameliorate, or have a positive effect on their condition, or at least to alleviate the level of suffering. The maximal approach towards ESD patients should focus on reducing suffering. Ways and means to compete with the family member overprotection syndrome are not known, and coping with those who exhibit this trait is a challenge for which there is no clear course of action. It is futile to treat cognitively-impaired patients at the end of life if their condition cannot improve. In fact, increased suffering is likely to result from unnecessary treatment. Conclusions: Just as the “overprotection phenomenon” is a serious cause of unnecessary suffering in dying dementia patients, it also applies to family members themselves. References 1. AMINOFF B.Z., PURITS E., NOY SH., ADUNSKY A. Measuring the suffering of end-stage dementia: reliability and validity of the . Arch Gerontol Geriatr 38:123-130, 2004. 2. AMINOFF B.Z. (MSSE) Scale: first 5 years. Isr Med Assoc J 6:645-646, 2004. 3. AMINOFF B.Z., ADUNSKY A. The last six months of life: suffering and survival of end-stage dementia patients. Age Ageing, 2006 (in press). 4. AMINOFF B.Z., ADUNSKY A. Dying dementia patients: too much suffering, too little palliation. Am J Alzheimer Dis Other Dementias 19: 243-247, 2004. 5. AMINOFF B.Z., ADUNSKY A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Med 22:344-348, 2005. 6. AMINOFF B.Z. Overprotection phenomenon with dying dementia patients. (Editorial) Am J Hosp Palliat Med 22: 247-248, 2005.