An insight into death wish among patients with amyotrophic lateral sclerosis in India using “Wish-to-Die Questionnaire”
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.198177
Source of Support: None, Conflict of Interest: None
Aims: In amyotrophic lateral sclerosis (ALS), death wish is expressed in a varying proportion of patients in different countries. In this first study from India, influence of belief system of religion/spirituality and attitude towards death, widely prevalent in the country, in decision making, was evaluated.
Keywords: Amyotrophic lateral sclerosis, death wish, Wish-to-Die Questionnaire
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive disease with atrophy and weakness of muscles of limbs, difficulty in speaking and swallowing, and ventilatory dysfunction leading to death. The average survival is 3 to 5 years, and in India, it has been reported that a significant proportion survive for 10 years or more. The quality of life is significantly compromised due to the motor disability, depression and cognitive impairment. Progressive nature of the illness, lack of effective treatment and increasing dependence for all the activities of daily living are some of the concerns that may influence the desire to end life. A number of studies addressing this issue observed that death wish was expressed in varying proportions, ranging from 32% to 62%, by ALS patients.,,,,, From these studies, it was evident that the patients who had faith in religion, spirituality and social support did not express the wish to die.
In a single report from India, one of the authors (MGD) with more than 30 years of experience in the management of ALS patients noted that less than 20% wished to end their life. The emotional security provided by family members, faith in religion, cultural rituals and acceptance of death as God's will, were considered as factors contributing to a positive attitude. The present study was planned to examine the belief in religion/spirituality and cultural attitude to life and death prevalent in India, using a specifically designed questionnaire along with other measures to assess the psychological aspects.
Participants: The study population comprised of ALS patients presenting during the years 2009 and 2010 to the neurology services at the Institute of Human Behaviour and Allied Sciences, New Delhi. The institution's ethics committee approved the study. Patients were considered eligible to participate if they met the criteria for the diagnosis of definite ALS according to the El-Escorial World Federation of Neurology revised criteria . The ability of the patient to carry out activities of daily living was assessed using the ALS functional rating scale (ALSFRS). Twenty three ALS patients who fulfilled the inclusion criteria along with their caregivers were invited to participate in the study and 20 of them agreed. A written informed consent was obtained from the patients and caregivers.
The identified tools were administered by one of the authors (RG) either at the hospital or at home, as per the choice of the patient and caregiver. The mean duration of the assessment was approximately 90 minutes. The interviewer ensured that ALS patients with bulbar and speech difficulties were able to provide the responses through eye movements, gestures, and alphabet boards. Since a number of family members provided care, only the primary caregiver was interviewed. They were asked if the patient ever explicitly or implicitly expressed a wish to die after the onset of disease. The caregivers were interviewed separately so that sensitive issues were not discussed in the presence of the patient. Confidentiality of the information was maintained at all stages of the study.
Measures: Standardized tools for measuring depression (Beck's Depression Inventory, BDI-II), hopelessness (Beck Hopelessness Scale, BHS) and suicidal ideation (The Scale of Suicidal Ideation, SSI) were administered. All the tools were translated to Hindi and back translated by a qualified translator. To assess the attitude towards life and death, a questionnaire was developed focusing on the 'wish to die' in the context of prevailing religious belief systems in India.
ALS Functional Rating Scale (ALSFRS): In this scale, ten items assess the disease severity in the domains of motor, bulbar, and respiratory functions. (Normal score = 40; lower scores signify increasing disability).
Beck's Depression Inventory (BDI-II): The BDI is a 21 item self-report scale measuring the severity of depressive symptoms. (No depression < 13; mild - 14 to 19; moderate - 20 to 28; severe- 29 to 63). This scale includes five items of somatic symptoms namely, fatigue, loss of appetite, weight loss, sleep disturbance and preoccupation with physical illness, which can be attributed to ALS and are not due to depression.
Beck Hopelessness Scale (BHS): It is a 20-item self-reported inventory to assess the outlook about the future, loss of motivation, and expectations. (No hopelessness <3; mild- 4 to 8; moderate- 9 to 14; severe- 14 to 20).
The Scale of Suicidal Ideation (SSI): It is a 19-item self-reporting scale to detect the patient's attitude and behavior towards suicide. (Higher scores indicate a greater severity).
Wish-to-die Questionnaire (WDQ): An eighteen-item questionnaire was developed to understand the perspective of a person towards life and death with a progressive fatal disease such as amyotrophic lateral sclerosis. During the initial phase, 30 questions were framed to elicit responses in seven domains, namely, religiosity/spirituality, belief in karma, meaning of life, hope, family support, financial support and death wish after a review of publications focusing on the Indian way of life.,,, 'Karma' is a causal concept, which ascribes 'health or illness and happiness or sorrow' to the actions and thoughts in the current or the previous births. (This is further elaborated in the section on 'Discussion'). To determine the content validity of the questions, opinion was sought of six experts, 3 clinical psychologists, one neurologist, one psychiatrist and one medical anthropologist. Based on their comments, 12 questions with a low content validity ratio (CVR) were excluded. In the final version of WDQ [Table 1], 18 questions with a high CVR were retained and the mean CVR for the questionnaire was 0.74. Inter-rater reliability and test-retest reliability were observed to be 0.88 and 0.82, respectively. The response was recorded as 'agree', 'disagree' or 'cannot say.' In addition to the response to questionnaire, any verbatim response, if also elicited, was also documented.
The specific questions, for which a response was elicited, related to the seven domains, were as follows [Table 1]: (i) Religiosity/Spirituality: questions- 4, 5, 12, 13; (ii). Belief in karma: questions - 8, 11, 18; (iii) Meaning of life: questions- 6, 15; (iv); Hope: questions- 1, 2, 7, 14; (v). Family support: questions- 3, 16; (vi). Financial support: questions- 9, 10; (vii) Death wish: question- 17. The data was analyzed using Statistical Package for Social Sciences-16. Qualitative analysis of verbatim answers, recorded from the patients on the WDQ was also done.
The demographic details of the 20 patients included in the study are shown in [Table 2]. Sixteen patients (80%) were male and 4 (20%) were female. The mean age of the patients was 52.6 years (range 38 to 73 years); 70% of them were literate and others were illiterate. Eleven patients belonged to the middle and 9 to the low socio-economic status. The mean duration of illness was 34 months (SD ± 30.4) with the range of 5 to108 months; in 17 patients, the duration of illness ranged from 1 to 5 years; in one patient, it was very short and of only 5 months; and, in the remaining two patients, the duration was prolonged (8 and 9 years). The mean ALSFRS score was 24.6 of 40 (SD ± 11.4) [range- 1 to 38]; the mean bulbar score (speech, salivation and swallowing) was 8.7 of 12; the mean fine motor score (handwriting, cutting food and handling utensils, dressing and hygiene) was 5.7 of 12, the gross motor score (turning in bed and adjusting bed clothes, walking and climbing stairs) was 7.3 of 12, and the respiratory score (breathing) was 3.2 of 4. At the time of study, 20% had significantly impaired or absent speech; 20% had excessive salivation and 10% had constant drooling; 20% had to be fed and 10% required enteral feeding; 40% were unable to write; 30% needed assistance for self care and 20% were totally dependent. Three patients (15%) were on mechanical ventilation and one patient used a wheel chair. Nine patients could not continue their job and three women were not able to perform household activities.
Based on the BDI scores [Table 3], 11 patients had depression, and of them, 5 patients (25%) had a mild depression, 5 (25%) a moderate depression and 1 (5%) a severe depression. After exclusion of the somatic items, only 6 patients (30%) had mild to moderate depressive features; however, none of them required antidepressant drugs. The mean score on BHS [Table 3] was 3.9 (SD ± 3.2) with 4 patients (20%) having mild hopelessness, and two (10%), moderate hopelessness. There was an overlap of depression and hopelessness in 4 patients. According to the “SSI” [Table 3], only one patient (5%) had suicidal ideation, which was also corroborated by the caregiver. However, this patient did not make any attempt to commit suicide.
Responses of patients to the 18 questions and 7 domains derived from WDQ are shown in [Table 1] and [Table 4], respectively. The response was considered positive if the patient 'agreed' to any of the questions listed under the domain. It was observed that all patients had faith in religion/spirituality and had hope. Nineteen patients had belief in the concept of karma. Sixteen patients (80%) had perceived that there was meaning in life and wished to live their full life, despite the significant disability requiring assistance in daily activities. Adequate family support was observed in all the patients, and 15 (75%) patients had financial support for medication and other services.
Five (25%) of the 20 patients who expressed death wish on WDQ, had hope, belief in karma and in religion/spirituality. On BHS, one of them had a mild level of hopelessness. On BDI, all had depression (moderate in 3 and mild in 2 patients). However, after exclusion of the items pertinent to ALS, only 2 of them had depression. It was evident from the WDQ [Table 5] that lack of financial support was the main cause contributing to death wish in 3 patients who were in the low socioeconomic strata (Case 1,4 and 5). The fourth patient (case 2), a 43 year old senior executive, well placed in a government job, with a high aspiration to rise further in his career, expressed that since he could not carry out his job, life had no meaning; however, he had never expressed suicidal thoughts either to the treating physician or to the care giver. The fifth patient (case3), a 71 year old, wealthy landlord mentioned that as he had fulfilled all the obligations, had lived a contended life, and was now engaged in spiritual activities; he, therefore, did not want to continue living but wished to attain salvation.
In this study, the first of its kind from India, an attempt was made to explore the attitude towards life and death in patients with ALS through “Wish-to-Die Questionnaire” (WDQ) developed in the context of widely prevalent religious belief systems in India. Domains chosen were religion/spirituality, karma and meaning of life. In addition, variables such as hope, depression, family support and financial resources were also assessed. Among the 20 ALS patients who were interviewed, five (25%) thought about death but only one of them had considered suicide and had conveyed his thoughts to the family member. However, he did not make any attempt to commit suicide.
Adelman et al., observed that 62% (43 of 69) of ALS patients did not wish to live, where as, Albert et al., reported that 43.4% (23 of 53) patients had thoughts about ending life. In the latter study, 10 of the 23 patients expressed the wish to die to the caregivers, and 3 of the 10 patients had hastened death by deep sedation. From Oregon, USA, it was reported that 56% (56 of 100 patients) considered suicide  and 42% of ALS patients in Germany and Switzerland thought about committing suicide. Analysis of end-of- life practices, which include euthanasia, physician assisted suicide or continuous deep sedation, or others, shows that 31.6% to 55% patients in the Netherlands chose one of these options., However, the data on the percentage of patients who had death wish but did not opt for hastened death is not available. Since end-of-life practices are not legal in India, we did not make any attempt to evaluate these issues.
Various factors including depression, hopelessness, lack of family and financial support, lesser degree of religiosity, spirituality or meaning of life have been reported to be associated with wish-to-die or end-of- life practices.,,,,20] In our study, 6 (30%) patients had only mild to moderate depressive features not requiring treatment. However, in the study reported by Albert et al., 32% (17 of 53 patients) were treated for depression and 13% (7 of 53) were diagnosed to have major depression. Few other studies also reported varying proportion of patients of ALS with depression ranging from 11% to 62% (11%; 20%; 25%; 26%; 34%; and 62%). McLeod and Clarke , in a review of literature from 1996 to 2006, reported that depression may vary over a large range from no depression to depression in 50% of the patients. This wide variation may be explained by the use of different tools for assessing depression. Feeling of hopelessness based on BHS varied from 35% to 55% in ALS patients, and among those who expressed “death wish” or opted for 'measures to end life,' the scores for hopelessness were significantly higher.,,, In our series on the BHS, mild-to-moderate degree of hopelessness was seen in 30% patients and only one of the 5 patients who expressed death wish, had mild level of hopelessness. However, using the WDQ on assessment of 'domain of hope' by 4 questions specifically targeted to elicit information on 'hope in relation to the illness,' all the 20 patients expressed hope. Hope enables acceptance, ensures quality of life and psychological and physical health.,
All our patients were taken care of by the family members at home, primarily because in India, the health care structure has very limited hospice facilities and these are usually restricted for cancer patients and generally unavailable for ALS patients. On the contrary, in the studies from the West, significant number of patients were availing the hospice facilities.,,, There is no universal health insurance in India and very low degree of public financing of health and, therefore, majority of the patients meet the cost of medical care, drugs and other supportive services through 'out-of-pocket' expenses by the patient or by the family members. It was heartening that the patients were satisfied with the family support and only 5 of them had financial constraints. Three of these 5 patients had cited financial problems as being the main contributory factors to the death wish. Lack of social support from family and friends was correlated with the occurrence of depression and associated with the wish to hasten death.,
The meaning of life for a person with terminal illness like ALS undergoes a radical change and the individual tries to search for a new significance in the context of the illness e.g., “why did I get the illness?”, “what sins have I committed to deserve the illness?” The karma theory is the concept of 'causality and effect' providing logical explanation to these issues. It is enunciated that sins, bad deeds etc. committed during the present or the previous lives, influence the health, happiness and prosperity in the current or in the next life. Thus, acceptance and belief in the 'law of karma' provides meaning to the occurrence of the disease, gives solace and aids in coping with the illness., New meaning is found in the realm of family and social support, religion and spirituality, which provide comfort in facing the illness and its consequences, including death. In India, in the terminally ill cancer patients also, a low frequency of death wish was documented and attributed to protective factors including family and community support, stigma attached to the idea of suicide and belief in karma, fate and destiny.,, Plahuta et al., also observed that lack of meaning to life contributed to the feeling of hopelessness and difficulty in coping with a life-threatening illness such as ALS.
All the 20 patients in our study had belief in religion/spirituality and regularly observed religious practices such as worshipping (doing puja) at home or in temples and observed rituals like fasting on auspicious days, ancestor worship, honoring the priests and bathing in sacred rivers. These religious beliefs have a profound effect on the attitude towards life and death. Death is not considered to be the end of life but a transition to the next life or attainment of salvation and merger with the almighty. The lower proportion of ALS patients expressing death wish in our study compared to that seen in other countries may be attributed to a belief in religion, spirituality and karma.,,,,, Many authors have also commented on the role of religion and spirituality on the coping strategy of end of life issues.,,,,],, Less belief in religion resulted in greater hopelessness and opting for end of life practices. In the Indian context, death is not perceived as 'end of life' but as an intrinsic component of life ascending to a higher level of personal growth. This concept was exemplified by one of the patients who expressed death wish as he had discharged all his responsibilities in his life and aspired to transcend to the spiritual realm.
In conclusion, our study using the 'Wish-to-Die' questionnaire designed to elicit information on prevalent belief systems in India showed that in amyotrophic lateral sclerosis patients, a lower proportion expressed death wish compared to the observations from the Western countries. Faith in religion, spirituality and karma provided a meaning to life; this fact along with a strong family support led to a positive attitude towards life and death.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]