End-of-life of the frail elderly: can admission to nursing homes be an indicator to initiate palliative care?
Maria Eugênia GOMES DO ESPIRITO SANTO
Summary
Introduction: frailty in the elderly is a geriatric syndrome characterized by a decreased ability of the body to respond efficiently to physiological stress situations. When admitted to the EHPAD (French nursing establishments for dependent old persons that include medical services), the elderly are very frail. A majority of them are severely impaired and highly dependent on human assistance. Prevalence of severe pathologies is consequential. The present study aims to characterize and identify factors associated to mortality and occurrence of morbid events from the time of admission of residents into the nursing homes.
Method: a descriptive and analytical retrospective study that includes an analysis of survival and identification of predictive factors of mortality, carried out from data records of 328 elderly persons residing or having resided in the nursing home as long-term resident since its opening.
Results: the majority of residents are women (73.5%) and the average age is 87 years for all. The residents arrive at the nursing homes at a much more advance age and suffer from multiple pathologies. The analysis of survival in the institution shows that, following admissions, approximately 15% of the residents die during the first three months and 25% die six months after admission. The probability of dying increases with age. Predictive mortality factors are in univariate and multivariate analysis: malnutrition, cognitive disorders, depression and Alzheimer's disease.
Conclusion: the majority of the residents in the EHPAD is fragile and depends on human assistance for activities of daily life. During the period studied, it was noted that the survival time decreases and frailty of the elderly at the time of their arrival at the nursing home is beyond the reversible stage. Admission to the institution is consecutive to a diagnosis of frailty and can be complicated. Thus, it can be suggested that when elderly persons are admitted to a nursing home, in the absence of other indicators, health professionals use frailty as sign to initiate palliative care.
Key words: elderly, long term nursing home, frailty, palliative care
Introduction
Frailty of the elderly is a syndrome characterized by the reduction of the organism’s physiological reserves and by a decreased ability of the body to respond efficiently to physiological stress situations. It denotes the beginning of loss of autonomy and also indicates a risk factor for hospitalization, diseases and institutionalization. Preventing institutionalization can be the main objective of many researchers, targeting to identify the frail elderly, as this state of frailty can be reversible with effective interventions . Several studies – have showed that certain specific interventions towards frail subjects makes it possible to reduce the risk of institutionalization, morbidity and mortality.
Several approaches coexist to define frailty, but the model that prevails is the one of Fried et al. , which includes five criteria: sedentary life style, reduced walking speed, weight loss, muscle weakness and fatigue. A person would be considered “frail” in the presence of at least three of the five criteria; “pre-frail” in the presence of at least two and “robust” if no criteria are present.
The prevalence of frailty among older adults was estimated to be between 34% and 68.8% in cohort studies conducted in various countries and between 29% and 54% in institutions, in studies carried out in Spain – , in Canada – and Poland . In France, during the analysis of the Share survey it was estimated that 10.2 % of the total population aged 50 or above is frail: 11.9 % women and 8.2 % men. For the 80 years and above these proportions are higher: 40.1 % of women and 32.1% of men. However, we know little about the fragility of institutionalized elderly.
According to data of EHPAD Research Network (REHPA), subjects currently living in EHPAD are mostly dependent on human assistance: 56.8% of the residents require complete assistance for personal hygiene, 52.9% for dressing, 46.2% are totally incontinent, 41% need assistance for all physical movements and 21.5% are totally dependent for eating . As neuro-degenerative diseases is very high in EHPAD, prevalence of severe pathologies causing a significant loss of autonomy was noted: an estimated 40% of the residents have dementia, nearly 10% have sequelae or aftereffects of strokes and nearly 5% have an evolutionary cancer17
Taking into consideration this profile, EHPAD residents do not appear a population responding to the characteristics of the reversible frailty described by the French National Authority for Health (HAS) but a population in need of specific care.
The French National End-of-Life Observatory (ONFV) distinguishes “end-of-life” from “end of a lifetime” and recommends that the medical care of the last years of an elderly frail person should include “palliative care”. The definition of palliative care, as specified in 1992 by the French Society for Support and Palliative Care (SFAP), refers to “active care implemented with an all-inclusive approach of the person in evolutionary or terminal phase of a potentially fatal disease. Take into account and aim at relieving physical pain as well as psychological, moral and spiritual suffering, which is of utmost importance”.
This definition is reconsidered again in the Act of 9 June 1999, which states that palliative care aims to “safeguard the dignity of the sick person and support his entourage” and must be “practiced by an interdisciplinary team, in institution or in residence”. The law included palliative care in the nursing process and guarantees access and guidance to "any sick person whose condition requires it”.
In current medical practice, palliative care is provided to terminally ill patients and toward the last years of a person’s life, or to people with diseases such as cancer, AIDS or degenerative neurological diseases and "at the very end of life". However, fact remains that those definitions hide the difficulty to enforce accurately the objectives of palliative care, especially taking into account the frontier between curative and palliative care. In the case of the elderly, especially very old, who can no longer stay at home and are placed in facilities for dependent persons, the cursor is even more difficult to place, as pathological situations are complex and criteria to determine a diagnostic and prognostic as well are difficult.
Given the vulnerability of the frail elderly, in clinical practice, Boockvar and Meier also recommend the use of palliative care at any stage of frailty. Recommended palliative care include establishing specific objectives of care, management and treatment of the symptoms, cost planning, taking into account social aspects of care, identifying specific needs of the individual, support of care-givers and the family at every stage. Other areas such as religion and existential aspects, ethical aspects of care and choices people may want to make in relation to staying alive without aggressive treatment etc, should also be taken into consideration. The said support, which includes medical, social and psychological dimensions, requires geriatric and gerontological knowledge and is best implemented by a multidisciplinary team.
As an evolutionary process, frailty of the elderly can be clinically silent in its initial stages , however when the body reserves get exhausted/deplete and reach a dangerously low level after which people become more prone to adverse effect, frailty is severe and recognizable. Institutionalization then represents the last stage in the trajectory of life of the elderly, which can be described as a slow functional decline during the years preceding death and acceleration of this decline closer to the time of death . By identifying the beginning of this “terminal phase”, following diagnosis of frailty, it will be possible to put in place an adapted palliative strategy of care, aiming to ensure quality end-of-life. This strategy should be strengthened as frailty advances.
Thus, the present study, carried out in a EHPAD, in the framework of a master degree entitled “Expertise in gerontology”, aims to characterize the profile of the residents in loss of autonomy; to identify predictive factors of mortality and morbidity and to discuss the relevance of introducing palliative care on arrival at the facility.
Method
It is a retrospective, descriptive and analytical study of residents in a nursing home for seniors with loss of autonomy. The study data are from medical monitoring computerized data, which also provides information on key socio-demographic characteristics, health reports, nutritional status and some morbid intercurrence such as falls and hospitalizations. Included in the study, starting from the opening of the facility in end-May 2015 to January 2008, are the 328 long-stay residents at the facility.
Computerization of the residents’ records was set up in February 2011, however, only the files of the 238 residents present since that date has been included in the computer database. The facility uses a variety of tools and geriatric scales to evaluate the state of the residents at the time of admission and in the daily follow-up, however for the residents who died before February 2011 only file-paper with this information was available. Given the short time available for the collection of data, it was not possible to use the paper files information. Therefore, only the sociodemographic data on age, sex, date of admission, release date from the establishment for a transfer, death or return-to-home and the date of death were available for all 328 residents in an input and output tracking table managed by the reception services. The data on morbidity were studied for the 238 residents whose medical information had been computerized.
Statistical analysis was carried out with SPSS 22.0 software. The analysis of the socio-demographic characteristics was descriptive with the calculation of proportions for qualitative variables and measurements of central tendency and confidence interval for the quantitative variables. Survival analysis modeling the time between the arrival at the facility and death was carried out by using a Life table method, and a Life curve was drawn to estimate the survival function and the Wilcoxon test was used to compare the two age groups with regard to survival time. The predictive factors of mortality were then studied by using a multivariate Cox regression model (proportional risk).
Results
From the 328 residents living in the nursing home from January 2008 to May 2015, 95 persons were resident at the time of the study (table1); 185 people died during this period and vital status was unknown for 47 residents, who were either transferred to another nursing homes or had returned home. Deaths of residents occur each year and since the opening of the nursing home until 2014, there has been an average of 25 deaths per year.
Table 1: Distribution of 328 residents by the year of admission in the nursing home and the current vital status, 2008-2015
Vital Status Date of entry Total
2008 2009 2010 2011 2012 2013 2014 2015
Deaths (n= 185) 2008 18 18
2009 14 16 30
2010 6 11 9 26
2011 5 6 10 3 24
2012 7 5 4 8 5 29
2013 7 4 5 3 4 5 28
2014 3 1 3 1 4 4 9 25
2015 0 0 1 0 1 0 2 1 5
Alive* 10 13 8 2 19 13 19 11 95
Unknown (n=48) ** Home 1 1 2 9 4 12 2 3 34
Transfer 3 3 3 3 0 1 1 0 14
Total 74 60 45 29 37 35 33 15 328
* Current Residents of the nursing home; ** Vital Status unknown: return home or transfer
The elderly
The main features of the 328 residents of the nursing home are presented in table 2 below. They are mostly women (74.1%). The average age at admission is approximately 87.0 years for women against 85.6 for men. The age at admission has increased over time, passing from 85.9 in 2008-2009 to 88.7 in 2014-2015.
The average age of deceased residents was 88.4 years, the data show a similar trend in the increase in the age of admission over the year’s which is inversely proportional to the average length of stay, which significantly decreases between 2008 and 2015, from 21 to 3 months. Overall, the average length of stay in the nursing home prior to death was 18 months.
For of 95 residents currently in the nursing home the average age is 89.4 years and the average length of stay in the nursing home is 35.5 months. Nearly 20% have been living for less than 6 months, 7.4% have been living for between 6 and 12 months and 74% for more than 12 months. However, for the 185 residents deceased, the average length of stay was 18 months: 41% survived less than 6 months before death, 14% between 6 and 12 months and about 45% have lived more than 12 months. The average age of death is 88.9 years.
The iso-resources group (GIR) of the national gerontological grid (AGGIR scale) assess or evaluates the degree of autonomy, physical or psychological dependence of the elderly in undertaking their daily actions. The evaluation concerning the autonomy of the residents, at the time of entry at the nursing home, was available from the AGGIR scale only. The data reveals a profile of persons far from autonomous with 47.3% classified as GIR 1 and 2 least autonomous seniors who are confined to bed with altered mental and intellectual functions that require continuous support for several acts of daily life. At the other extreme, 9.5% of the residents are noted in the GIR 5 and 6, ranges on which are placed most autonomous residents, not requiring assistance or just specific help for toilet activities.
During the 12 months of their arrival in the establishment, of the 95 residents present, nine (9.2%) were hospitalized for emergency services. Out of this nine, four were admitted repeatedly to emergency services.
Recurrent falls are very frequent in the elderly and are sources of serious complications and even death. Falls were recorded for all the 95 residents present in the nursing home. Seventeen residents (13.5%) had fallen in the 12 months following their arrival, among them, 9 residents (9.4%) had repeated falls.
Table 2: Characteristics of EHPAD residents, 2008-2015
Variables Categories n average or %
All
Sex % Females 243 74,1
Males 85 25,9
Average Age at admission All 328 86,6
Females 243 87,0
Males 85 85,6
2008-2009 134 85,9
2010-2011 74 86,4
2012-2013 72 86,9
2014-2015 48 88,7
Deceased Residents (n = 185)
Average age of death of deceased residents according to the year of admission All 185 88,4
2008-2009 103 88,3
2010-2011 47 87,5
2012-2013 23 89,7
2014-2015 12 90,7
Distribution of deceased residents based on length of stay <= 6 month 76 41,1
6-12 month 26 14,1
>12 month 83 44,9
Average length of stay CSD All 185 17,9
Average length of stay residents dead as per to the year of admission 2008-2009 103 20,6
2010-2011 47 16,4
2012-2013 23 9,3
2014-2015 12 3,4
Current Residents (n=95)
Average age at admission 95 86,4
Average time of stay At 95 35,5
GIR at admission 1-2 45 47,3
3-4 41 43,2
5-6 9 9,5
Hospitalizations recorded in the 12 months following admission 0 87 90,6
1 5 5,2
2 or more 4 4,0
Falls recorded during the 12 months following admission 0 79 82,3
1 8 8,3
2 or more 9 9,4
* Transferred or home returned residents were not included in the calculation of the duration of stay
Morbidity
Morbidity was documented for 238 residents: 95 current residents and 101 residents who died between 2011 and 2015. Many chronic conditions were identified (Table 3).
Cardiovascular disease affects 48.2% of residents. Several health problems related to the heart and (blood) vessels are found in this category. All the chronic cardiac disease were represented: coronary heart diseases are very common, but there is a majority of ischemic heart disease with stenting or the use of a pacemaker, rhythm disturbances and disorders of the valves. Vessel disorders are also quite frequent: 20% of residents suffer mainly of arteritis and phlebitis.
Hypertension is the most common cardiovascular disease and affects the highest number of persons. It was diagnosed in 42% of 238 residents at their arrival at the facility.
Pathology of dementia affects a large number of residents: 32.3% are affected with 13.0% of residents suffering from Alzheimer, the most common dementia in France.
Overall, half of the residents suffer from neuropsychiatric conditions. In addition to dementia in a lesser proportion, other incapacitating neurological conditions, such as Parkinson's disease and stroke affect 17.6% of residents. Others no-labeled cognitive disorders were observed in approximately 23.5% of the residents. Related to psychiatric conditions, 26.9% of residents are depressed, 8.8% have a diagnosed psychiatric condition and 8.4% are confused.
Osteo-articular disorders affect about one quarter of residents: 23.5% of them suffer from it. Osteoarthritis is very common as well as hip and knee replacements and treated fractures following incidents and falls.
Kidney diseases are common. In this group 16.0% suffer from more serious conditions such as chronic renal failure. In the field of urology, diagnosis of incontinence (its frequency has not been quantized) is high among the residents.
Gastroenterological disorders affect 15.5 % of residents: these are ulcers, abdominal syndrome, diverticulosis, polyposis of the colon and liver diseases among others. Malnutrition affects 16.0 % of residents, and was often associated to dementia syndromes;
Less than a third of residents are affected by other groups of pathologies: endocrine and metabolic disorders affecting 18.9% of the residents who are suffering mainly from diabetes or thyroid disease.
With regard to eye disease, 18.1% of residents suffer from cataracts. Diabetic retinopathy was mentioned several times.
Haematological disorders, chronic pulmonary disease and cancer are pathologies that one came across the least (but not less serious) and 8.0 %, 6.3 % and 2.9 % respectively of the residents.
Almost all residents suffer from multiple pathologies and in average, at least four pathological conditions were observed. Furthermore, a number of very common diseases, which were not quantified, were reported during this study.
Table 3 : Pathologies amongst residents, n= 238
Diagnosed pathologies Number %
High blood pressure 100 42,0
Cardiac disorders 67 28,2
Depression 64 26,9
Osteo-articular pathology 56 23,5
Vascular disease 48 20,2
Dementia 46 19,3
Endocrine-metabolic disease 45 18,9
Eyes/ocular Pathology 43 18,1
Neurologic disorder 42 17,6
Nephrologic disorder 38 16,0
Gastroenterological diseases 37 15,5
Alzheimer 31 13,0
Hearing pathology 26 10,9
Psychiatric disorders 21 8,8
Hematologic disorders 19 8,0
Bronchopulmonary ailments 15 6,3
Cancer 7 2,9
Cognitive disorders 56 23,5
Malnutrition 38 16,0
Confusion 20 8,4
Poly-pathologies 169 71,0
2 15 9,2
3 23 14,3
4 38 15,5
5 38 13,4
6 26 6,7
7 18 8,4
8 and more 11 4,6
Mortality and survival
The life table was calculated taking into consideration the experience of all individuals residing in the EHPAD since its opening and up to the end of the study in April 2015 (Table 4), except for those who were transferred to other institution or returned home because of the impossibility of obtaining their vital status.
About 15% of residents died during the first three months after admission, 39% at the end of the first year and 50% after 18 months of admission. 48% residents survived more than 24 months.
Table 4 : Life table, n = 328
Survival in months from the date of admission Residents included in the analysis Proportion of survivors at each stage Cumulative proportion of survival
0 276 0,84 0,84
3 225 0,88 0,74
6 192 0,92 0,68
9 172 0,95 0,64
12 159 0,92 0,59
15 142 0,93 0,55
18 128 0,91 0,50
21 113 0,96 0,49
24 106 0,98 0,48
27 100 0,96 0,46
30 92 0,95 0,43
33 83 0,93 0,40
36 55 0,36 0,14
Out of the 328 residents surveyed, 55 survived until the beginning of the fourth year. Average survival for all residents was 15 months. This analysis, explained graphically in Figure 1, shows survival rate longer for residents aged less than 87 years on admission (average age for all residents) that is 20 months compared to older residents (> 87 years), the average survival in the facility is 12 months. Consequently, an individual who survived the first year in the facility has a high probability of dying during the second year, especially if the admission age is above 87 years.
Univariate and multivariate analysis using the Cox regression model adjusted for age was conducted to derive predictive factors associated with mortality (Table 5). The probability of dying few months after admission increases in the presence of malnutrition, cognitive disorders, depression and the presence of Alzheimer's disease.
Table 5: Predictive factors associated to mortality by Cox regression analysis (adjusted by age), n = 238
Variable Odds Ratio (95% confidence interval) p
Malnutrition 2,53 (1,29, 4,96) 0,007
Cognitive disorders 5,25 (2,54 – 10,84) < 0,0001
Depression 1,95 (1,19 – 3,19) 0,008
Alzheimer 2,22 (1,14 – 4,32) 0,019
Discussion
This study provides descriptive data of residents of a nursing home (EHPAD) and reveals a fragile population, characterized by the presence of severe disease, very old people who have mostly lost their physical or psychic autonomy.
A typical person in the facility is, a woman aged 86, needing partial or full assistance to perform daily activities. This person either lived at home or has had a short stay in a hospital before entering the residence. This person has multiple pathologies, with an average of 4 diagnosed diseases. More than a quarter of the residents died during the first year of residence. This rate is higher in the recent years. The probability of dying is associated with increased age, especially since the entry into the nursing is at a more advanced age than in the past.
Although frailty is not considered a disease, it is associated with advanced age and the terminal phase of chronic diseases . The prevalence of frailty has been evaluated in nursing homes for the elderly in recent studies. Using the criteria of Fried, Gonzalez et Al. it was estimated that 68.8% of residents of an institution in Spain were fragile 11 and that frailty was associated with malnutrition and depression. In a British study, 85% of residents were identified as fragile . Their health was worse compared to non-fragile residents; and using Rockwood’s criteria, the prevalence of fragile was estimated at 35% . Combined with cognitive impairment, frailty was a predictor of mortality.
These varieties of phenotypes and fragility estimates highlight the need to develop wide scale studies in institutions for the elderly. These institutions claim to understand better the elderly and to describe the profile of residents and their life trajectories, in terms of morbidity and approach to death. Clinical and empirical evidence suggests that functional decline trajectory studies can be used to define specific palliative care to cover individual needs.
In our study, age was also a predictor of mortality. This observation is all the more important as the age of entry into the nursing home is increasing. Cognitive impairment associated with several chronic diseases are predictors of mortality and increases the risk of death by almost four times.
Thus, the age for admission to the facility, high prevalence of chronic multi-pathologies in this community, frequent emergency hospitalization, frequency of falls, survival time and the classification of GIR, confirm that the majority of the residents of the facility can be designated as frails. The average survival time in the institution after admission, which decreases over time, can be identified at the entry into the facility, as the beginning of an accelerated phase of functional decline, associated with frailty and early phase of end-of-life. The indication to introduce palliative and specific modalities of care, along with better communication with relatives and caregivers, right from the arrival at the facility would seems appropriate.
Conclusion
In the nursing home studied, the majority of residents are frail and are dependent for most acts of daily life. The duration of survival decreases over the period, as, at the time of their arrival in the nursing home the elderly are beyond reversible frailty. They are thus less receptive to the recommended strategies, particularly by the HAS, with regard to safeguarding autonomy, reduction of the risk of falls, hospitalization and other the consequences of frailty. Admission to the facility is consecutive to a diagnosis of frailty and can complicate the situation. Studies and data suggest that the elderly, in an advanced state of frailty, with or without cognitive disorders, have an end-of-life marked by a slow and progressive functional decline with acceleration a little before death 22. In the absence of other indicators, professionals tending the elderly people should use frailty as a guide to initiate palliative care. An admission to a nursing home can be used as a marker to set up individualized interventions, taking into account the individual trajectories of life.