Assisted dying and voluntary euthanasia: awareness and perception among health care professionals in a tertiary care centre, South India

INTRODUCTION

Euthanasia brings controversies, dilemmas and unending debates in India. The issue rises considerably high in cases where a person is severely impaired as a result of brain damage or persistent vegetative state (PAS), chronic cases like West syndrome, canavan disease, diffuse axonal injury, amyotrophic lateral sclerosis (ALS) and patient with a terminal stage of cancer.

To avoid the difference in the terminologies used for euthanasia, the current study used the following definitions as per international standards.¹

Assisted dying

Prescribing life-ending drugs for terminally ill, mentally competent adults to administer, themselves after they have met strict leg safeguard.

Voluntary euthanasia

A doctor directly administering life-ending drugs to a patient who has given consent.

In India, on March 2011, a remarkable judgement owing to Aruna Ramchandra Shanbaug case from supreme court of India legalised passive euthanasia in the most ambiguous way for patients with brain death or in persistent vegetative state. Assisted dying (AD) and voluntary euthanasia (VE) was made illegal in India vide Indian penal code 302, 304 and 306 (abetment to suicide) quoting the low level of ethical standards to which our society has descended, widespread commercialization and rampant corruption.²

Recently, on 9th March 2018, the supreme court of India (SCI) said that, every human has a right to dignified death and promoted ‘living will’. According to this will, a person can make a statement in advance that their life should not be prolonged by putting them in a ventilator or artificial life support system.³ Soon after the judgement, ICMR (Indian Council of Medical Research) said in its recent report that the term ‘passive euthanasia’ has created a lot of confusion and ambiguity in terms of social acceptability. Hence, it is an obsolete term and needs to be differentiated from euthanasia which is an entirely a separate entity.⁴

The need of the hour is to have clear legislation and regulations. The current study aims to assess the awareness and perception towards AD and VE among health care professionals as these stakeholders are an epitome of moral integrity.

METHODS

Study design

This study was a descriptive cross-sectional study.

Study specific setting

The study was conducted in several departments that deals with terminally ill cases and regional cancer centre of a public funded tertiary care institute in Puducherry. It caters to the people of Puducherry and neighbouring districts, reports with daily OPD of 154 terminally ill patients.

Study participants

A total of 369 participants, of whom 121 were postgraduate doctors and 248 were nurses employed in the institute with minimum of one-year experience, were selected for the study purpose.

Study procedure and data collection

After obtaining approval from the institute’s ethics committee, the study was conducted during the months of September and October 2018. The purpose of the study was explained to the participants beforehand and a written informed consent was obtained prior to their participation. A pre-tested, validated, semi-structured questionnaire was used to collect the data regarding their socio-demography, awareness and perception towards AD and VE. For assessing perception towards AD and VE, a five-point Likert scale (completely agree, agree, undecided, disagree, definitely disagree) was used which was later modified to a three-point Likert scale (agree, undecided, disagree) for analysis.

Data analysis and interpretation

The data was collected using Epi collect 5 version 1.1.4 and was exported as a comma separated values (CSV) file and imported in statistical package for social sciences (SPSS) software version 19.0. Continuous variables were summarized as mean (standard deviation) or median (inter-quartile range) depending on the normality of data. Categorical variables were summarized as proportions.

Ethical approval

The proposal to conduct the study was approved by the Institutional Ethics Committee (approval number: JIP/IEC/2018/221), Jawaharlal Postgraduate Medical Education and Research, Puducherry.

RESULTS

Around 61% of the participants belonged to the age group of 26-35 years. Majority (82.1%) of them were married and followed Hinduism as religion (72.6%). More than half of the participants (67.2%) were staff nurse and 41.7% of them had professional experience of six to fifteen years (Table 1).

Among the study participants, 26.3% and 24.1% have encountered a situation where the patient and the family members respectively, had asked for euthanasia. 94% of the participants have never attended any conference or a scientific meeting on the subjects of either euthanasia or MAD (medical assistance in dying) or EOLC (end of life care) (Table 2).

About 16% and 38.3% of the doctors and nurses respectively, answered correctly for the definition of AD. About 82% of the doctors and more than half (55.6%) of nurses correctly knew the definition of passive euthanasia as per supreme court of India. The doctors had a higher level of awareness towards the procedure to be followed for passive euthanasia and regarding advanced medical directive (AMD) as compared to the staff nurses (Table 3).

Under the domain of ‘perception towards the application of AD/VE’, majority of the respondents (74.3%), agreed that the patient with a terminal illness should not be hopelessly suffering.

About 65.3% of the participants agreed to the statement that it is helping the patient to die and not killing them.

Nearly half (46.3%) of the participants responded that CPR (cardio pulmonary resuscitation) is not a convenient method during the terminal period. Also, 19% of health care professionals agreed that elderly people (>75 years) should be allowed to die who feels their life is complete. Another major finding was that around 39% of them were undecided about the routes of administration to practice euthanasia. Around 46% of the participants wanted euthanasia for themselves, if legalized.

Major proportion of the participants (61.5%), believed that the decision regarding termination of life should come from the patient’s side. Under the domain of ‘family participation in decision making’, 70.2% said family decision should be considered when the patient cannot decide for himself/herself.

*Incorrect statements.

The domain ‘social cost’ showed that 42.8%, 52% and 58.3% of health care professionals disagreed that. ‘It is a burden for a relative, health care organization and medical staff respectively to take care of patient who is expected to die soon’.

Under the domain ‘the right to live with dignity’, 74.5% of the respondents said that the person should decide his own right to live and 61.8% agreed that advanced medical directives is the step towards right to die with dignity. Around 61% of health care professionals agreed that religious belief affects the decision towards AD and VE (Table 4).

DISCUSSION

The current study suggests mixed responses towards application of AD and VE. Since the study population among the existing studies was heterogeneous, the methodological comparison was difficult. Also, this study might differ in interpretation of results as the definitions of euthanasia used nationally or internationally and their forms show variations hitherto.

Although AD and VE is illegal in India, it was found that health care professionals have encountered situations where 26.3% of the patients and 24.1% of the family member of the patient have made an explicit request. This was similar to a study conducted in South India by Subba et al.⁵ Also, another study in Belgium revealed that more than half (53%) of the patients had requested for euthanasia to the psychiatric nurses.⁶ This could be perhaps due to the fact that the country where the study was conducted does legalise some form of euthanasia and hence the patient may be outspoken about their request which is hard to see in our country.

Only a small proportion (6%) of the health care professionals had attended any scientific meeting regarding the end of life care or euthanasia. Similarly, a study in Turkey by Kaptan et al, reported that only 8.5% of health professionals had attended any meeting about euthanasia.⁷ This indicates that there is little or no interest showed in the subject of euthanasia which is an integral part of palliative care. In context to advanced medical directive (AMD), previously a study conducted in India reported that 60% of the doctors and 59% of the nurses had a view that ‘there should be some legal avenue where the patient can pre-authorize his/her death’.⁸ However, in the present study, there was lack of awareness among the health professionals about AMD.

Out of the twenty four (24) questions, the health care professionals gave favourable responses for half of the questions whereas Kamath et al, reported that 69.3% of health professionals were in favour of euthanasia as a means to relieve unbearable chronic pain.⁹ Other studies also favoured euthanasia with a 60:40 ratio.^5,10 However, on the contrary, one of the study did not support euthanasia and considered it as unethical since we are emotional and care driven society and probably it is still considered a taboo to discuss death and end of life.⁸ Also, the fear of its misuse is high due to ‘rampant corruption and mass commercialization’ as quoted by supreme court of India. Majority (65.3%) of the participants perceived that AD and VE is helping a person with a terminal illness to die. Similar results were reported in a study conducted in Belgium among nurses in paediatric intensive care unit where 74% of the nurses said that ‘it is not ethically wrong to hasten the death of the child by administrating drugs’ and ‘should not suffer hopelessly’.¹¹

In the current study, 42% of the respondents said that the patient with persistent vegetative state should be allowed to die similar to a study where majority (82%) of the oncologists were against in keeping a brain-dead patient alive.⁸ Around 63% of the respondents did not favour for the statement that the elderly people above 75 years of age who thought their life was complete, can be considered for AD/VE as it challenges our morals and values. More importantly, the issue regarding the mode of administering euthanasia is still unanswered as many of respondents gave a neutral response (38.8%). Injecting a drug and deliberately ending a life is still considered as unethical parallel to present findings.^12,13 Overall there is more reluctance among Nurses as they spend more time with the patients and relatives. They are experienced to provide quality care rather than killing them. Also, their profession will never allow them to practice and administer euthanasia drugs.^6,14,15

However, an international study conducted among nurses, favoured for AD which is in contrast to the current study findings. This probably can be attributed to the difference in ethnic, cultural and religious makeup.¹² In this study, more than half (57%) of the respondents favoured for AD/VE for terminally ill patients who show no sign of recovery. A study by Abbas et al, reported that majority of the participants supported euthanasia in exclusive conditions such as motor neuron disease and terminal cancers.¹⁶

Math and Chaturvedi said, ‘doctors do suggest to the family members to have the patient discharged from the hospital and wait for death to come if the family or patient so desires’, but in the present study, 32.2% of the participants felt that it is a burden for the family to take care of the patient with a terminal illness which was similar to other study findings.^7,17,18

This can be attributed to reasons such as poverty and non-availability of the resources. It was a mandate from the present and other studies that patient’s autonomy should be respected with respect to their right to live. About 62% of the professionals said that the AMD (advance medical directives) is a step towards the right to die with dignity. An increase in knowledge about AMD has demonstrated that patients do not wish for artificially prolonging of life which lessens the financial burden.¹⁹

Majority of responders (61.2%) agreed that religion plays an important role in deciding for AD and VE which is similar to the findings reported in other studies.⁵ In India, deliberate intention to kill a patient is equivalent to murder. Most of the religion doesn’t allow euthanasia or mercy killing, for example, Hinduism believes in the concept of ‘Prarabdha karma’. Also, in a meta-analysis by Charlotte et al, it was reported that stronger the religious faith, higher the chances of opposing euthanasia and its legalization.²⁰

CONCLUSION

Although the current legislation does legalize passive euthanasia yet the image of the term ‘euthanasia’ is creating a misconception among majority of the stakeholders. Nonetheless, standardizing the terminologies, relook into the verdict by the supreme court of India and garnering opinions from health care professionals would be worthwhile. Framing protocols and stringent guidelines for advanced medical directive would aid to combat with the ‘slippery slope’.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

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