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Age and Ageing Advance Access originally published online on August 22, 2006
Age and Ageing 2006 35(6):597-601; doi:10.1093/ageing/afl067
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© The Author 2006. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Their last 6 months: suffering and survival of end-stage dementia patients

Bechor Zvi Aminoff and Abraham Adunsky

Geriatric Division, Sheba Medical Center, Tel-Hashomer 52621, Israel

Address correspondence to: A. Adunsky. Tel: (+972) 52 6666550. Fax: (+972) 3 5303411. Email: eadunsky{at}hotmail.com

Received 19 March 2005; accepted in revised form 23 May 2006


   Abstract
Top
 Abstract
Introduction
 Methods
 Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Objective: to study possible interrelations existing between the Mini-Suffering State Examination (MSSE) scale and survival of end-stage dementia patients.

Methods: a cohort study of 252 end-stage dementia patients with a 6-month follow-up period, conducted in a Division of Geriatric Medicine of a general hospital. We included 134 consecutive bedridden end-stage dementia patients admitted during a 36-month period, and surviving in the ward for <6 months. Interrelations between survival and admission MSSE scores were studied.

Results: compared with patients surviving ≥6 months, those dying within 6 months were significantly older (P = 0.014). Mean survival time was 57.76 ± 9.73 days for the low MSSE score group (29 patients, MSSE 2.24 ± 0.99), 44.70 ± 5.99 days for the intermediate MSSE score group (53 patients, MSSE 4.92 ± 0.83) and 27.54 ± 4.16 days for the high MSSE score group (52 patients, MSSE 8.06 ± 1.00). Differences between the survival times of these three MSSE score groups were statistically significant (Kaplan–Meier Analysis Log Rank P = 0.0018, Breslow P = 0.0027). The Cox proportional hazard model of survival showed a significant interrelation of high MSSE scores and shorter survival (P = 0.013).

Conclusions: documentation of a high-suffering level by the MSSE scale helps in identifying end-stage dementia patients expected to benefit from enrolment into a palliative care setting.

Keywords: dementia, end-of-life, hospice, suffering, survival, elderly


   Introduction
Top
 Abstract
 Introduction
Methods
 Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Each year, over 33 million people in the world would need relief from suffering and palliative care [1]. An estimated 1.8 million people in the United States are in the final stages of dementing illnesses, such as Alzheimer’s disease and vascular dementia, and will ultimately require end-of-life care. Many are expected to spend the last phase of life in various settings of palliative care, where issues of quality of care and satisfaction for patients and families are of crucial importance. For these patients, regardless of life expectancy, palliation is often the primary goal of care.

Despite these considerations, only a small minority of non-cancer patients access specialist palliative care services, which stems, partially, from differences in both enrolling criteria and financial coverage between different countries, in particular between the United Kingdom and the United States. When St Christopher’s hospice was first opened, it was envisaged that service would be accessible to non-cancer patients, including those with dementia; yet, cancer remained the dominant diagnosis group [2].

Unfortunately, many residents of long-term facilities are dying with advanced dementia without receiving the optimal palliative care [3]. In recent years, the elements of excellent end-of-life care have been better defined and include various elements of palliative care in order to minimise suffering levels [4, 5]. The decision-making process regarding palliative or hospice-like approach for end-stage dementia patients is complicated because data on appropriate criteria to assess the suitability of hospice care are limited, resulting in <2% of patients with advanced dementia being involved in hospice-care programmes [6]. One of the enrolment criteria identified by the American Medicare Hospice Benefit is a life expectancy of <6 months [7]. The narrow eligibility criteria ensure that the majority of enrollees will die within 6 months, excluding a substantial proportion of persons with advanced dementia who also die during that period.

Several studies have investigated the 6-month survival of persons with a primary diagnosis of advanced dementia [8, 9]. The National Hospice Organization eligibility guidelines for patients with dementia are based primarily on the Functional Assessment Staging (FAST) criteria [10], which have been heavily criticised. A study on Dutch patients [11] has also suggested that the Hospice Medicare Guidelines are not valid for predicting survival in late dementia. More recently, a risk score based on 12 variables from the Minimal Data Set (MDS) proposed more accurate estimates of 6-month mortality for nursing-home residents suffering from advanced dementia than existing prognostic guidelines [12].

Palliative care is aimed at relieving suffering and improving the quality of life of patients with advanced illnesses, and should involve a routine and standardised symptoms assessment [13]. Defining and measuring these aspects is difficult, albeit crucial, because these patients are unable to recognise and communicate verbally with family members, are totally dependent on others in daily activities and experience repeated health problems.

Suffering is traditionally viewed as a state encompassing psychological distress, spiritual concerns and various aspects of physical pain. There is an insufficient clinical evidence for suffering in dying dementia patients, which may lead to inappropriate evaluation and insufficient palliative treatment.

The recently developed Mini-Suffering State Examination (MSSE) is a practical clinical scale used for the assessment of suffering level in end-stage dementia [14]. Its use permits better assessment and control of suffering in end-of-life, and is easily integrated into daily ward routines. It has the potential of monitoring the extent of suffering [15] so that inadequate medical and nursing treatment, negligence and mistreatment may be approached, and steps be taken to change treatment protocols and diminish the patient’s level of suffering. Both physicians and nurses may easily use the MSSE, which is brief and friendly, taking <10 min to administer.

The purpose of this study was to investigate true end-stage dementia patients, i.e. those expected to survive <6 months, and who actually die within this time period. The study evaluated the possible interrelations existing between the level of suffering, as assessed by the MSSE scale, and survival of these end-stage dementia patients.


   Methods
Top
 Abstract
 Introduction
 Methods
Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 
A total number of 252 consecutive end-stage dementia patients were admitted to the long-term geriatric ward of the Division of Geriatric Medicine. Patients were referred from acute care departments of the general hospital during a 3-year period of study. All caregivers were interviewed on the day of the patient’s admission, and a full medical history was obtained. Data were also collected from letters of referring physicians and general practitioners. Diagnosis of dementia was made according to the DSM-4 Revised criteria [16]. We included patients with Alzheimer’s disease, vascular dementia and dementia of other origin. Inclusion criteria included severe dementia interfering with verbal communication (Mini-Mental State Examination score 0) [17] and complete dependency in all activities of daily living and functional movement activities, recorded by a minimal score (18 points) of the Functional Independence Measure (FIM) [18].

The medical condition of 118 patients was stable, and most of them were discharged from the ward to their previous living arrangements. The final analysis included only the remaining 134 (74 males and 60 females) patients with very advanced dementia who did not survive the full 6-month period from admission to our ward. This group included 65 (48%) patients with Alzheimer’s disease, 51 (38%) vascular and post-stroke dementia and 18 patients (14%) with other dementia types. Such patients therefore comply with guidelines on hospice enrolment for advanced dementia patients [6] having a life expectancy of ≤ 6 months.

All patients were evaluated upon admission to the ward by the MSSE scale [14]. Briefly, it consists of 10 items related to levels of calmness, screaming, pain, pressure ulcers, malnutrition, eating disorders, performance of invasive procedures, stability of general medical condition, and the impression of medical staff and family regarding the patient’s level of suffering. Scores for each of the 10 items is 0 (normal) or 1 (abnormal), and total score ranges between 0 and 10, with higher scores reflecting high suffering levels of the patients. MSSE scores have been divided into three categories: low (0–3), intermediate (4–6) and high (7–10). This classification has previously been shown to represent distinct subgroups, with significant differences between them, which have been tested for validity and reliability [14]. In addition, we recorded data relevant to medical conditions such as important blood laboratory results (total protein, albumin, cholesterol, haemoglobin, total lymphocyte count and so on) and use of dementia-related medications such as narcotics, antipsychotics (Risperidone, Haloperidol, Trioridazine, Sulpiride and others), antidepressants and analgesics. The study protocol was approved by the local Institutional Review Board (IRB).


   Statistical analysis
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Comparisons between the three groups of patients defined according to MSSE scale (low, intermediate, high) were performed using a one-way Analysis of Variance (ANOVA) and chi-square tests, as applicable. Univariate Cox regression and Kaplan–Meier analysis examined the association between each parameter and survival. A multivariate Cox regression model was applied to the data to study simultaneously the independent relationship between each risk factor and survival. The model predicts the probability of surviving as a function of the explanatory variables. The statistical significance level was set to .05 and the SPSS for Windows software, Version 11.0, was used for the analysis.


   Results
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 
Mean age of patients was 82.9 ± 9.3. The general characteristics of the study population are presented in Table 1. Compared with patients surviving >6 months, those dying within 6 months were significantly older (P = 0.014) and included more male patients (P = 0.01) and patients with feeding tubes or gastrostomies (P = 0.02). These patients also presented with lower admission haemoglobin (P = 0.001), total cholesterol (P<0.0001) and albumin (P<0.0001) levels. Total MSSE score upon admission to the ward was 5.56 ± 2.42 in patients dying within 6 months and 3.61 ± 2.0 in those surviving >6 months (P<0.0001).


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  		Table 1.. General characteristics of study population upon admission

 

We have identified 29 patients with a mean MSSE score of 2.24 ± 0.99, 53 patients with 4.92 ± 0.83 and 52 patients with 8.06 ± 1.0 in the groups of low, intermediate and high level of suffering, respectively.

Mean survival time was shorter for those having higher MSSE scores upon admission to the ward. Survival time was 57.7 ± 9.7 days, 44.7 ± 5.9 days and 27.5 ± 4.1 days in the low, intermediate and high suffering levels, respectively. The differences between mean survival times among the three MSSE groups were statistically significant (Kaplan–Meier Analysis, Log rank P = 0 .001, Breslow P = 0.0027) (Figure 1).


Figure 1
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  		Figure 1.. Kaplan–Meier 6-month survival curves for end-stage dementia patients in three suffering levels.

 

A univariate Cox regression analysis showed a statistically significant correlation between mean survival time and high MSSE scores (P = 0.001), the use of narcotics (P = 0.014), and the levels of total protein (P<0.0001), albumin (P = 0.001) and cholesterol (P = 0.001) in those dying within 6 months after admission. There was no correlation between mean survival time of these end-stage dementia patients and low or intermediate MSSE scores, sex, use of nasogastric tube and percutaneous endoscopic gastrostomy, or with any other laboratory parameter or with other medications.

When a multivariate Cox proportional hazards model was applied to the data (Table 2), a high MSSE score (indicating a high-level of suffering) emerged as a major significant risk factor for death during the 6-month period (P = 0.013). Use of nasogastric tube (P = 0.024), and higher haemoglobin (P = 0.044), cholesterol (P = 0.046) and total protein (P<0.0001) levels appeared to be ‘protective’ against shorter survival.


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  		Table 2.. Multivariate Regression Model predicting mortality of end-stage dementia patients during their last 6 months of life

 


   Discussion
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
 Discussion
Key points
 Conflicts of interest
 Ethical approval
 References
 
The present study focused on the possible interrelations between the level of suffering as determined by the MSSE and survival of end-stage dementia patients. This issue is of interest for health care providers and policy makers concerned with the enrolment of patients into palliative care settings.

Our results on the interrelation of high MSSE scores with shorter survival period allow us to suggest that MSSE could serve as a key criterion for screening general hospital wards, nursing homes and community for those end-stage dementia patients with high levels of suffering and shorter survival. This is extremely important because difficulty in estimating survival of end-stage dementia patients is a serious barrier to provision of hospice care to such patients [19–22].

Mitchell et al. [12] have recently addressed the estimated prognosis for nursing-home residents with advanced dementia. However, their study comprised a high percentage of functionally non-dependent patients (74%) and a low percentage of bedridden patients (7.7%), thus representing a population that is not severely affected by a dementia syndrome. It is not surprising that these authors have found that the characteristics associated with poorer survival (such as older age, greater functional impairment, male sex, cardiovascular disease, diabetes mellitus and poor nutritional status) were identical to those identified within a general demented population regardless of the stage of dementia [23–25].

This study has investigated an end-stage demented population rather than an advanced demented population. Treatment of these patients is much more difficult, lengthy and wears out medical and nursing staff as well as families [26]. The difficulty lies within the complexity of medical, nursing, cognitive, emotional, religious, ethical and social problems. Despite intensive efforts of the medical staff, deterioration is inevitable, and the level of suffering increases as the patient approaches his or her last day of life [27]. Because a substantial number of end-stage dementia patients in this study died in a high level of suffering, as evaluated by MSSE, it is essential that new palliative treatment approaches be implemented for such patients.

Many high-level suffering patients require emergency decision-making changes in the treatment strategies to alleviate their suffering. One way to provide that care might be the adoption of alternative strategies to deliver a comprehensive palliative care to this population. Operative options to solve this problem may involve a classic hospice-like setting; however, this may not be sufficient for those with high-level suffering whose family members may ask for more active treatment. For these, a setting designed to encourage the implementation of a more active approach aimed at reducing the various elements associated with suffering in these patients (such as better prevention of malnutrition, pressure ulcers, infections and so on) may be more suitable. The indication for referral to this type of facility (suffering relief settings) should be neither the cognitive, functional and nutritional condition nor any other medical problem but the need for a comprehensive, effective and reliable care aimed at reducing the level of suffering.

MSSE is expected to improve the care of patients and complies with the formal position statement from the American Geriatrics Society on the care of the dying patient [28] and the Canadian palliative care association [29]. Subsequent investigation is required to examine whether it would be possible to minimise the level of suffering of such patients and to seek additional ways for the prevention of their suffering. Further prospective validation would be helpful to assess the use of the MSSE in clinical practice.


   Key points
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
 Discussion
 Key points
Conflicts of interest
 Ethical approval
 References
 

  • High-level suffering is frequent in end-stage dementia patients.
  • Higher suffering levels are associated with shorter survival periods.
  • MSSE provides a useful clinical tool for the assessment of survival and may facilitate decisions regarding enrolment into palliative settings.


   Conflicts of interest
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
Ethical approval
 References
 
No conflicts of interest.


   Ethical approval
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
References
 
The study was approved by the IRB.


   Acknowledgements
 
Funding
There was no external funding for this study.


   References
Top
 Abstract
 Introduction
 Methods
 Statistical analysis
 Results
 Discussion
 Key points
 Conflicts of interest
 Ethical approval
 References
 

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