|
 
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| REVIEW ARTICLE |
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| Year : 2023 | Volume
: 13
| Issue : 1 | Page : 32-39 |
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Legal issues in end-of-life care: Current status in India and the road ahead
Anjali Gera, Bimla Sharma, Jayashree Sood
Institute of Anaesthesiology, Pain and Perioperative Medicine, Sir Ganga Ram Hospital, New Delhi, India
| Date of Submission | 02-Nov-2022 |
| Date of Decision | 31-Jan-2023 |
| Date of Acceptance | 01-Feb-2023 |
| Date of Web Publication | 24-Feb-2023 |
Correspondence Address:
Dr. Anjali Gera
Senior Consultant, Institute of Anaesthesiology, Pain and Perioperative Medicine, Sir Ganga Ram Hospital, New Delhi - 110 060
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/cmrp.cmrp_108_22
End-of-life (EOL) care is a multidisciplinary approach to provide 'whole person care' to individuals with advanced, progressive, incurable or life-limiting illnesses to prevent or relieve suffering with a goal to reduce suffering as much as possible while respecting the patient's wishes. The focus is on comfort, symptom control and quality of death (QOD) rather than actual treatment or prolonging life. It includes withholding or withdrawing life support treatments and initiating palliative care in terminally ill patients. However, lack of awareness amongst people and healthcare workers and inadequate legal framework are barriers to ensuring good QOD. All these issues result in a prolonged stay of terminally ill patients in intensive care units, high financial costs and emotional stress to the family, resulting in an excessive burden on the healthcare system. EOL care poses numerous legal and ethical problems for physicians. It is critical in therapeutic decision-making to protect the rights, dignity and vigour of all individuals concerned, including the patient's family members and the society. Physicians must comprehend the concepts of relevant legal and biomedical ethics to solve EOL care issues.
Keywords: Advance care planning, end-of-life care, euthanasia, legal issues, physician-assisted death
How to cite this article:
Gera A, Sharma B, Sood J. Legal issues in end-of-life care: Current status in India and the road ahead. Curr Med Res Pract 2023;13:32-9 |
| Introduction | |  |
End-of-life (EOL) care is a multidisciplinary approach to providing 'whole person care' to individuals with advanced, progressive, incurable or life-limiting illnesses to live as well as possible before they die. In addition to the affected individual, the care process extends to their family and caregivers.[1]
Less than 1% of people in India have access to pain management and palliative care.[2] The Lien Foundation of Singapore commissioned the Economist Intelligence Unit to create a 'Quality of Death' (QOD) score that would allow comparisons across nations and their healthcare systems. India ranked the lowest in QOD outcomes, 40 out of 40 in EOL care score, and scored poorly regarding palliative care knowledge, indicating a lack of awareness in 2010.[3] In 2015, India ranked 67 amongst 80 countries.[4] Eric A Finkelstein (Lien Centre) conducted a cross-country comparison of expert assessments of QOD in 2021, and India ranked 59 amongst 81 countries.[5] However, the parameters used in both evaluations differed; thus, the results may not be comparable. In this overview, an attempt has been made to highlight EOL care and its legal issues. The current status and the road ahead in India will also be discussed.
| Legal Framework | | |
Only the Human Organ Transplant Act (1994 and 2011) deals with the EOL issues in India. It validates the concept of brain death for the sole purpose of organ donation.[6],[7] Apart from this, there are no legal frameworks or guidelines for clinicians on moral/ethical dilemmas in EOL care in India, even though the right to life, euthanasia and suicide have been subjected to much debate. As a result, most physicians adopt defensive medicine because of fear of litigation, and patients with terminal illnesses receive unnecessary medical interventions rather than a smooth transition to death with dignity and grace.
The first suggestion of withholding medical interventions from terminally ill patients dates back to the Hippocrates era, which says that medicine is powerless in patients who are 'overmastered' by their disease.[8] Subsequently, it has been contended that withholding treatment from dying persons may be appropriate in certain situations. First, it is crucial to understand the difference between EOL care and euthanasia. Euthanasia entails hastening death in patients who are in severe pain. It is an illicit act that intends to kill the patient. On the contrary, all efforts are to provide symptom relief to the patient in EOL, and palliative care is initiated to give good QOD to the patient.
| Euthanasia | | |
The definition of euthanasia offered by the House of Lords Select Committee on Medical Ethics is as follows: 'a deliberate intervention undertaken with the express intention of ending a life, to relieve intractable suffering'.[9]
It seems that euthanasia started being practised sometime in the early 17th century. It meant a pleasant or peaceful passing away. Assisted suicide, or euthanasia, occurs when a doctor or third party gives a terminally ill patient a fatal dose of medication to end the patient's life.[10] It has been further defined as 'active' or 'passive'. In active euthanasia, lethal injection is given (generally by a physician) to terminate life. Conventionally, the physician's motivation is merciful and aimed at alleviating suffering. Passive euthanasia refers to withholding or discontinuing life-sustaining treatment.
Euthanasia has also been classified as voluntary, involuntary and non-voluntary. In voluntary euthanasia, a competent person makes voluntary and enduring requests for life-terminating events due to terminal illness or intolerable pain. Both, active and passive euthanasia are its parts.
Involuntary euthanasia is the termination of a person's life without their knowledge or consent (a paternalistic decision regarding what is best for the victim of disease or political reasons). Therefore, involuntary euthanasia is illegal everywhere.
Non-voluntary euthanasia is when a person is not competent to decide and gives consent to end life.[11] Here, a surrogate or proxy decides to end life in the person's best interests. In the Netherlands, it is called life ending acts without explicit request (LAWER).[12]
Active euthanasia comprises physician-assisted death (PAD) and voluntary active euthanasia (VAE). In PAD, a doctor fills a prescription or gives medication to a patient upon their express request, knowing that they intend to use the drugs to end their lives.
VAE differs from PAD in that the physician administers lethal injection at the patient's request. In countries where PAD/VAE is legal, it is generally required that the patient is suffering from unbearable suffering not attenuated by any means acceptable to the patient and does not require the person to be terminally ill or close to death.
In Canada, VAE and PAD are referred to as 'medical assistance or aid in dying'.[13] In many countries, the 'right to die' group favours assisted death and calls it dignified death, but the 'right to life' group opposes 'medical assistance in dying'. VAE or PAD is legal in Belgium, Netherlands, Canada, Columbia, Luxembourg, New Zealand and Spain.[14]
| Right to Life | | |
The right to life is a fundamental natural right of all humans. Article 21 of the Indian Constitution guarantees that no one shall be deprived of his life or personal liberty.[15] The right not only obligates the state to ensure good quality of life for its people but also, over the years, has included various rights under its ambit-like the right to livelihood, sleep, shelter and life with dignity. Whether the 'right to die' comes under the 'right to life' or not was a question of debate earlier but has been settled in 2018.
This issue of the right to die was discussed for the first time in Delhi High Court in State vs. Sanjay Kumar Bhatia case in 1985.[16] A young boy had committed suicide out of frustration and was charged under section 309 (attempt to commit suicide) of the Indian Penal Code (IPC).[17] The court discussed the system's inadequacy, and it was said that the continuation of section 309 was anachronistic and unworthy of a humane society.
After this, two more cases followed with conflicting decisions in Bombay High Court and Andhra Pradesh High Court in Maruti Shripati Dubal vs. the State of Maharashtra (1987) and Chenna Jagadeeswar vs. State of Andhra Pradesh (1983), respectively[18],[19] In the first case, section 309 was considered violative of the right to life under article 21. In contrast, it was constitutionally valid in the second case.
A challenge was raised to the constitutionality of section 306 of IPC (abetment to suicide) in Gian Kaur vs. the State of Punjab.[20] It was argued that abetment to suicide could not be penalised as the abettor only assisted in enforcing a fundamental right, i.e., the right to life. The court opined that Article 21 could not be interpreted to include the unnatural termination of life. The Supreme Court (SC) upheld the constitutional validity of sections 306 and 309 IPC. However, the court referred to the judgement of the House of Lords in Airedale NHS vs. Anthony Blande and distinguished between 'right to die' and right to die with dignity.[21]
| Law Commission Report | | |
In 2006, the Law Commission of India, in its 196th report, recommended a law to protect terminally ill patients who refuse medical treatment, artificial nutrition or hydration from section 309 of IPC. The doctors who manage terminally ill patients or make decisions for incompetent patients in their best interest must be protected from punishment under 306 of IPC. The Law Commission suggested the law be called the Medical Treatment of Terminally-ill Patients (Protection of Patients and Medical Practitioners) Act'. The report observed that euthanasia is a criminal offence. However, withholding or withdrawing treatment in EOL care does not amount to an 'attempt to commit' suicide. The report also differentiated between a competent and an incompetent patient. An incompetent patient is either a minor or an adult with an unsound mind who cannot make decisions after giving appropriate information or cannot communicate his or her decision. The Law Commission gave clear definitions of informed consent and best interests. It was recommended that the treating doctor must not withhold or withdraw treatment unless the opinion of three medical practitioners has been obtained.[22]
| Aruna Shanbaug Case | | |
In 2011, the SC addressed euthanasia or mercy killing for the first time in the Aruna Shanbaug case.[23] Aruna Shanbaug was a sexual assault victim who remained permanently vegetative from the time of assault till her death. In this landmark judgement, the apex court discussed euthanasia at length and allowed passive euthanasia in certain conditions subject to approval by the High Court following a recommendation by a committee of three doctors. It defined 'passive euthanasia' as the deliberate withdrawal of treatment causing a patient's death. It held that the court is the Parens Patriae (parent of the nation) and has the power to decide what is best for the patient and extended the power to the High Court under Article 226.[24] However, till date, there have been no discussions on patient self-determination, futility, brain death, safeguarding rights during incapacity, death in dignity and withdrawal of nutrition and hydration. The Indian physician, therefore, finds himself in an ambiguous position concerning civil, criminal or consumer protection laws.
After the Aruna Shanbaug case, the Law Commission of India analysed the subject of euthanasia in its 241st report.[25] It clarified that euthanasia and assisted suicide must continue as offences under our law. The 196th report had suggested that the three medical expert's opinion is essential for withholding or withdrawing life-sustaining treatment, whereas the SC in the Aruna Shanbaug case recommended expert opinion from an expert panel approved by the High Court.[22] The court also recommended repealing Section 309 of IPC. It was a landmark judgement in the domain of euthanasia as it provided a mechanism to be followed since there is no legislation in the country. This pronouncement is vital as it cemented the way for a liberal society.
| Advance Care Planning and Living Will | | |
Advance care planning (ACP) is a procedure that assists persons of any age or stage of health in understanding and sharing their values, life objectives and choices for future medical treatment. ACP seeks to assist people in receiving medical treatment compatible with their values, goals and preferences.[26] Living wills are instruments derived from the ethical principle of patient autonomy and have been approved by the Mental Health Act 2017.[27]
If a person becomes incapable of making decisions and communicating, the living will provides instructions about his or her future medical care. It should be frequently updated and documented. It reduces uncertainty and conflict through a process rather than an event. Regardless of the clinical situation, ACP should be proactive, timely and integrated into standard care. ACP should also be reviewed each time a person's medical state alters.[28],[29],[30],[31] A living will take effect when the patient loses the ability to make decisions.
Even though the joint family trend is declining in India, the family often comes together during a health crisis. Unfortunately, this makes EOL decisions difficult, especially if the patient had not made an explicit wish in advance or had not appointed a proxy for him/herself. In the United States, the majority of people inadvertently rely mainly on their State's default surrogate consent laws. These statutes provide default authority to a relative or a close friend in the order of kinship preference to make a healthcare decision for a loved one when he/she loses the ability to take appropriate decisions. In India, the 'Transplantation of Human Organs (Amendment) Act' recognises people who may be called for organ donation but does not categorise them in the order of priority, leading to frequent issues in clinical practice.[32]
| Common Cause Versus Union of India | | |
In 2018, the SC held that Article 21 of the Constitution guarantees a person's right to die with dignity.[33] The court allowed withholding the life support system or medical treatment of the patient without the hope of recovery. The court also recognised the need for creating a living will and thus laid down specific guidelines regarding the procedure for the execution of Advance Directives (ADs)/living will and guidelines related to passive euthanasia. The court also said there is a need for proper legislation on passive euthanasia and related aspects. Therefore, the court's directive and guidelines shall remain in force until Parliament brings legislation into the field.
Patients with terminal illnesses are referred to a medical board composed of the head of their treating department and three critical care experts from general medicine, cardiology, neurology, nephrology, psychiatry or oncology. As the decision of the medical board is communicated to the jurisdictional collector, he or she shall form a medical board with the District's Chief Medical Officer (CMO) as the chairman and three expert doctors in the same field, as mentioned earlier. A medical board chairperson will communicate his decision to the jurisdictional judicial magistrate first class after obtaining the consent of the executor of the AD or guardian named therein [Figure 1]. The court has laid out procedures for modifying ADs and cases without ADs. | Figure 1: Flow chart showing guidelines given by the Supreme Court for withdrawal/withholding of treatment
Click here to view |
The procedure outlined by the court is also relevant when treating doctors and family members are of conflicting opinions. Doctors and family members may agree to follow guidelines that have been established by the Indian Society of Critical Care Medicine (ISCCM).[34],[35]
| The Problem with the Supreme Court Judgment 2018 | | |
The verdict has a highly complex implementation procedure, which makes it very time consuming and impractical. The system was designed to prevent abuse but has prevented practical use. Judicial Magistrates of the First Class, in whose presence an advance medical directive must be carried out, are unaware of their responsibilities under this decision. The decision establishes a three-tiered process before life-sustaining treatment can be withheld or withdrawn. As a result, no hospital has been able to follow the SC-mandated protocol to the letter, to the best of our knowledge. Healthcare experts are unsure of the appropriate course of action near the EOL because there is no viable protocol for withholding or discontinuing life-sustaining therapy.
| Developments Since the Supreme Court Judgment | | |
Several medical bodies, such as ISCCM and Indian Association of Palliative Care (IAPC), also laid guidelines before the SC judgement. The ISCCM published the consensus ethical position statement on guidelines for EOL and palliative care in intensive care unit in 2012 and 2014.[34],[35] The Indian Council of Medical Research (ICMR) document published in 2018 discussed the terminologies and bioethical issues related to EOL care and focussed on empowering and educating clinicians, patients and their families.[36] A policy document for 'do not attempt resuscitation' (DNAR) was published in 2020 by ICMR, providing an algorithm and format for implementing it and frequently asked questions.[37] The National Accreditation Board of Hospitals and Healthcare (NABH) also mandates the Quality EOL care.[38] Kasturba Medical College, Manipal, published a document named Blue Maple by Salins et al. on 'Guidelines on limitation of life-sustaining treatment'.[39]
After the common cause judgement, a survey was done on 2400 Indians regarding awareness of living wills/AD which revealed that 88% wanted to decide about their medical management in the last days of their lives, 27% knew about living wills and only 6% had created one. Equal numbers of men and women participated in the survey across seven cities. The survey was guided by the End-of-Life Care in India Taskforce (ELICIT), a group of senior specialists from three medical associations - the IAPC, the ISCCM and the Indian Academy of Neurology.[40] In collaboration with a group of lawyers, the ELICIT has drafted a model bill that lays down a right-based implementable legal framework that addresses the gaps in existing guidelines[41] [Figure 2]. | Figure 2: End of life care: A model bill by collaborative efforts of ELICIT and Vidhi Centre for Legal Policy. ELICIT: End of Life Care in India Taskforce
Click here to view |
In Kerala, palliative care has been integrated into general healthcare services. The Kerala government's ruling in late 2019 that developed a due process for certifying brain death in individuals who were not organ donors was a step forward.[42] In addition, several hospitals, including the Manipal Group of Hospitals and the All India Institute of Medical Sciences in New Delhi, have created EOL care standards.[35] Furthermore, the ICMR expert group had issued Consensus Guidelines on DNAR to guide healthcare professionals on the appropriate use of cardiopulmonary resuscitation and the process to be followed when it had been decided not to attempt cardiopulmonary resuscitation.[39] On the other hand, the ISCCM has petitioned the SC for clarity, demanding a change of the SC's rules in Common Cause vs. Union of India.[43]
| Current Legal Status | | |
The use of an AD has been validated, noting that a person's autonomy may be protected. Through AD, a person with a sound mind and capacity can communicate that the treatment can be withheld or withdrawn under certain circumstances. As there is no law covering EOL care on withholding or withdrawing artificial life support, the SC's verdict on 9th March 2018 would be valid and binding on Medical System.[43] By preserving dignity through life's end, the verdict reinforces the value of life and avoids death as an inevitable consequence.
Recently, in January 2023, a constitution bench of the SC agreed to modify the guidelines on living will in response to the petition filed by the ISCCM. According to the modified guidelines, the process will now be a 2-tiered procedure in contrast to the 3-tier previously.[44] Once the treating physician confirms that the patient is suffering from an incurable disease, the hospital will form a primary board with subject expert doctors and the board will have to respond within 48 h. The hospital will then set up a secondary board with at least two subject experts and one doctor will be nominated by the District CMO to review the primary board's decision. The secondary board committee will also get 48 h to respond. After the board's approval, doctors and the patient's family can withdraw or withhold treatment. Approval by the Judicial Magistrate is not required; however, the hospital will have to inform the magistrate in writing about the procedure.
For AD, a gazetted officer or public notary can authorise the document in the presence of two witnesses. A digital copy of AD can be linked with the person's unique health ID under the Ayushman Bharat Digital Health Mission.
The final order is still awaited; however, the Apex court has reiterated that these guidelines will remain in effect till the time legislature enacts a law.[44]
| The Road Ahead | | |
Healthcare providers should receive education and communication skills regarding EOL care and include them in the medical curriculum. The World Health Association has asked all the member states to integrate palliative care with the routine healthcare system. We need a comprehensive legal framework for EOL decision-making and its practical implementation and strict adherence. Explicit guidelines for surrogate hierarchy should be established. The society must be made aware of the existing ADs. It is also desirable that the insurance industry should cover palliative care and EOL care services. We should have a good QOD in the future comparable to the developed world by taking steps such as providing free home palliative care, hospice admissions when needed, affordable medical costs and actionable AD. A comprehensive EOL care law can help in achieving this goal.
Acknowledgement
The authors would like to thank Ms. Priya Yadav, our research officer, and our secretary, Mr. Prakash for their help in the preparation of the manuscript.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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