More than four million persons in the U.S.A. suffer from Alzheimer’s disease and other dementias. Dementia is now the third cause of death and affects 7.1% of the population. The treatment of an ESD patient is far more complicated than the treatment of an end-stage patient with a heart, lung or cancer disease. The difficulty resides within the complexity of the medical, nursing, cognitive, emotional, ethical, religious and social problems. 1.8 million people in the U.S.A. are estimated in the final stages of dementia, such as Alzheimer’s disease or vascular dementia, and are unable to recognize family members, are dependent on others for daily activities, are unable to communicate and experience repeated infections and other complications.
The recently developed (MSSE) scale (Aminoff, 1999) is the first objective clinical tool for evaluation of suffering level in ESD. The results of our clinical experience with the scale on more than 350 patients were presented at world and regional congresses in Berlin (1999), Jerusalem (2000), Vancouver (2001), Stockholm (2002), Tokyo (2003), Tel Aviv (2003), and Las Vegas (2004).
The MSSE scale is available in English, Hebrew and Dutch versions and covers 10 items (range 0-10; range 7-10 indicates a high level of suffering). A high MSSE scale score reflects the severity of the medical condition in ESD and indicates a high level of suffering.
The MSSE scale is significantly reliable with 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). The mean survival of ESD patients with a low MSSE scale score (MSSE = 2. 24 ± 0.99) and those with a median MSSE scale score (MSSE = 4.92 ± 0.83) was 57.76 ± 9.73 days, and 44.70 ± 5.99 days, respectively. In the high MSSE scale score group (MSSE = 8.06 ± 1.00) mean survival was much shorter (27.54 ± 4.16 days). 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 were significant. The results of the Cox proportional Hazard model of survival demonstrated a significant correlation between high MSSE scale score and high risk of mortality and short survival of ESD patients during the last 6 months of life (P = 0.013. According to the MSSE scale evaluation of patients, it has been proved that ESD patients represent a heterogeneous group and have different levels of suffering. The results of our research showed that care in the geriatric department fails to decrease the high level of suffering of ESD patients. The total score of MSSE scale on the 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). Despite traditional medical and nursing care a large proportion of dying dementia patients experienced an increased level of suffering as they approached their demise. In recent years, the elements of excellent end-of-life care have become more specific. Such succor includes palliative care to all critically ill patients to maximize their quality-of-life. The latter is an integral part of the overall protocol for palliative treatment, when and if palliation becomes the primary objective requiring a smooth transition into a hospice program. It should also clarify last resort options if suffering becomes intolerable, despite comprehensive efforts of care. Decision-making regarding palliative or hospice-like therapy for ESD patients is complicated because of the limited data available for estimating criteria for enrolment in a hospice. The high intractable level of suffering in ESD patients, evaluated by objective tools, should be a principal criterion for enrolling these patients in a hospice or a Relief of Suffering Unit for End-of-Life Dementia Patients. New palliative treatment approaches should be developed for these patients. The following are our proposals for “Last-Resort Options for Responding to Intolerable Suffering”: 1. Screening the suffering level of ESD patients using the (MSSE) scale to identify patients with a high suffering level (MSSE = 7-10); 2. Patients with a high level of suffering (MSSE = 7-10) should be hospitalized in a hospice or Relief of Suffering Units for End-of-Life Dementia Patients; 3. Hospitalization period in Relief of Suffering Units for End-of-Life Dementia Patients is estimated to be 1 month; 4. Patients whose suffering level diminishes during hospitalization in Relief of Suffering Units for End-of-Life Dementia Patients may be discharged to a regular geriatric department, a nursing home, or to their own home; 5. The preferred approach to ESD patients in such units will be to seek solutions for diminishing their high suffering level. We conclude that the MSSE scale is a reliable and valid clinical tool and is recommended for evaluation of the severity of the patient’s condition and the level of suffering in ESD. A high MSSE scale score could be the key criterion for enrolling end stage disease and dying patients in a hospice and Relief of Suffering Units for End-of-Life Dementia Patients
- 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