©2006 by MEDIMOND S.r.l. G716C0584 631
Geriatrics “D” Refusal Phenomenon
Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer 52621, and
Human Suffering and Satisfaction Research Center, POB 56, El-Ad 48900, Israel.
In memory of the Department of Geriatrics “D”, 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. Key words: End-stage dementia, refusal phenomenon,
We developed a novel, objective tool for measuring suffering in end-stage
dementia (ESD), the (MSSE) scale that was
presented at congresses in Berlin (1999), Jerusalem (2000), Vancouver (2001),
Stockholm (2002), Tokyo (2003), Las Vegas (2004), Rio de Janeiro (2005),
Madrid (2006) and the Israeli Knesset (Parliament) (2005).
Materials and Methods
Significant reliability of the MSSE scale was demonstrated by means of
Cronbach alpha = 0.736. Validity of the MSSE scale was proven by Pearson
correlation with the 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) (1, 2). Results 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 632 10th International Conference on Alzheimer’s Disease and Related Disorders < 0.0001) (3). According to the MSSE scale, 29.6% and 63.4% of patients died with intermediate and high levels of suffering, respectively. Despite the devoted and sometimes overprotection phenomenon of family members (4), and traditional medical and nursing care, a large proportion of dying dementia patients experience an increasing amount of suffering as they approach their demise (5). The differences between the survival times of the three MSSE scale score groups were 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 revealed a significant correlation between increased MSSE scale score and high risk of mortality and short survival of ESD patients during the last 6 months of life (P = 0.013) (6). Discussion One of the main causes of suffering in ESD is the refusal phenomenon of ESD patients. The refusal phenomenon pertaining to ESD patients has never been 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 ESD patients and numerous techniques are employed to discharge these patients from the department. The medical and nursing team may occasionally treat the same patient for months, and even years. Despite devoted treatment, the ESD patient’s condition will only deteriorate. Aspirations and repeated infections, malnutrition and a state of severity with bedsores are considered to be a failure of the nursing staff. Eventually, the patient’s condition becomes a nightmare for the nurses and all other staff members. Therefore, ESD patients are undesirable and are not enthusiastically admitted for hospitalization, including geriatric departments. In many departments, including geriatric wards, ESD patients are bedridden until their discharge, or until their demise. Every effort is made to avoid admitting such patients to the department, the reason being that the hospital prefers to give priority to rehabilitation patients. Numerous techniques are employed to discharge ESD patients. One approach is to shorten the length of hospitalization as much as possible, and to discharge patients to their homes or nursing homes, despite their critical condition, and the various medical problems of subsistence that cannot be provided at home, or at a nursing facility, or be treated outside the confines of the hospital. Of the most frequently-occurring problems are those of severe decubitus ulcers, serious malnutrition, eating and swallowing disturbances, excruciating Madrid, Spain, July 15-20, 2006 633 pain, need for oxygen, as well as evidence of high-level suffering. The nursing staff constantly endeavors to coerce the physicians and social workers to discharge the patients as soon as possible. Nurses also exert pressure on the Health Fund staff so that subsequent financing of hospitalization will cease. Geriatric institutions or nursing homes beyond the confines of a hospital do not always provide accurate information regarding the condition of ESD patients. The patient’s condition is always defined as being better than it actually appears. A well-known phenomenon is that of nursing staff interfering in medical decisions, such as insertion or removal of a feeding tube, performing percutaneous endoscopic gastrostomy (PEG), giving a liquid infusion, administering antibiotics, or narcotics. Frequently, the aim of the nursing staff is to intervene in taking medical decisions, not to help the patients, but to dispense with and discharge them as soon as possible. Furthermore, requests are voiced to administer high doses of morphine intravenously to ESD patients whose conditions are unstable “because the patient is in severe pain”. The concept appears to be to shorten the life of the patients, and not to provide appropriate treatment. As previously described from a medical viewpoint the staff do not see this as a professional challenge, and do not provide treatment to a patient whose condition is that of ESD, or terminal. Furthermore, the rehabilitation staff, i.e. physiotherapists, and occupational therapists also deem it futile to provide treatment to an ESD patient, and in the majority of cases they are basically unsympathetic towards them. The rehabilitation staff prefers to care only for patients who can be rehabilitated. End-stage dementia patients are not gladly welcomed by sick funds, because their hospitalization is expensive, lengthy and endless. Health Funds receive payments directly from such patients for months and years. Hospitals are reluctant to allow ESD patients to occupy beds “that are needed for rehabilitation patients”, despite the lifelong insurance coverage. In the refusal phenomenon, the staff reject: 1) the importance of the challenge to provide appropriate care to patients with ESD; 2) the existence of the patient’s personality; 3) the need to invest in time for treatment; 4) the rights of a human being in this serious medical condition. End-stage dementia patients have a right to live, and the right to be free of suffering. Conclusions The closure of the Department of Geriatrics “D” where we developed the MSSE scale and provided objective, experimental measuring of suffering in end-stage and dying dementia patients is a classic example of refusal phenomenon appertaining to ESD patients. The community outside the confines of the hospital is unaware of the refusal phenomenon in caregivers, hospital staff and Health Funds regarding ESDP, thus they, as well as the patients continue to suffer. 634 10th International Conference on Alzheimer’s Disease and Related Disorders References 1. AMINOFF B.Z., PURITS E., NOY S.H., 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. Dying dementia patients: too much suffering, too little palliation. Am J Alzheimer Dis Other Dementias 19: 243-247, 2004. 4. AMINOFF B.Z. Overprotection phenomenon with dying dementia patients. (Editorial) Am J Hosp Palliat Med 22: 247-248, 2005. 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., ADUNSKY A. The last six months of life: Suffering and survival of end-stage dementia patients. Age Ageing, 2006 (in press).