Kill them with Kindness
Written by Dr. Ninada, Medical Officer, Namma Clinic, DHFW Karnataka
As doctors, among the hardest things we’ll ever do is watch our patients die. But an even harder task would be watching our patients suffer with no foreseeable cure at the end of their lives. While euthanasia is not legal in India, there are numerous ways we could make the last few days painless and dignifiable for patients under our care. End of life care should be balanced on the fine ropes of ethical, emotional, religious and practical considerations. Death is an inevitable certainty for all. Enabling our patients to understand this and opt for a dignified death with minimal pain and suffering is the goal of palliative care.
Putting an end to the 38 year misery of Aruna Shanbhag, the supreme court of India, for the first time allowed for passive euthanasia keeping the patient’s best interests in view. In 2018, a Constitution Bench of the Supreme Court, hearing a petition filed by the non-governmental organisation, Common Cause (and intervention applications by the two collaborators of this report), reconsidered the legal permissibility of withholding or withdrawal of life-sustaining treatment discussed in Aruna Shanbaug.
The Court unanimously held that the right to refuse life-sustaining medical treatment is an exercise of the rights to autonomy, dignity and privacy that make up the right to life under Article 21.
However the exercise of end of life care in India comes with several implications and complications. Despite the supreme court recognising a dignifiable death and measures towards it, it is still a rarity to see effective palliative care in India. In the Indian set-up it is an unfortunate claim and a devious reality that several doctors continue intensive care despite little or no benefit to the patient purely for personal financial gain.
Active euthanasia and physician assisted suicide continues to remain illegal in India. Accommodations are made only to withdraw or withhold life saving treatments, only on the request of patients who are medically beyond improvement or by a unanimous medical decision in a patient in permanent vegetative state lacking decision making capacity, both with due protocols involving the patient/ family, the medical and legal bodies.
The framework is designed to minimise unfair manipulation or devious involvement of any party by involving various neutral parties in the approval of end of life care.
The 7 step approval of end of care is a lengthy one which may take months or longer to come through. It can very rarely be used while making critical decisions pertaining to the care of patients.
It adds to the burden of the already overburdened judiciary by requiring the involvement of the judicial magistrates and making provisions of appeal to higher courts. The need for involvement of medical experts, a second neutral board only adds on to the expenses of a dying man.
While loose ends do remain, it has been established beyond conflict that the right to die with dignity is a component of the right to live with dignity. Indian judiciary also recognises advance directives, lasting power of attorney and DNRs. it is imperative that as doctors we know what measures can be employed to alleviate pain and sufferings of terminally ill patients.
Also called as a living will it is a legally binding document prepared and presented by a patient who is mentally fit to make decisions. It needs to specify the wishes of the patient clearly and needs to be countersigned by a gazetted notary. As opposed to earlier, it no longer requires the approval of a magistrate. It will also mention names of 2 individuals permitted to make decisions on behalf of the patient if need be.
An AD may be modified or cancelled at any time and it is a legal binding to the treating doctor to provide or withhold treatments/ care as mentioned in the AD.
However, an AD is not applicable to emergency life saving situations. The AD is also bound to the law and guidelines prevalent at the time of execution and NOT at the time of formulating the AD.
Lasting Power of Attorney:
It is an individual who is given authority to make medical decisions on behalf of the patient under the circumstances that the patient is unable to do so for themselves.
The decisions of the LPA are to be considered as good as the decisions of the patient themselves.
An LPA needs to be formally documented and can not be assumed to be the spouse, children or immediate family in the absence of a document.
In case both AD and LPA exist, whichever is more recent (latest) will be the binding document.
In a situation where neither an LPA nor an AD is available, the treating group of doctors may take a medical decision in the best interest of the patient with due deliberation with the family.
Ceiling of Care:
This is the highest degree to which the patient is to receive care. It is a discussion to be undertaken in the anticipation of an escalation of disease. That is, a doctor may discuss with the patient the extent to which the patient would want the doctor to go in order to save his/ her life. For example, a patient admitted with pneumonia may cap the treatment at ward based care, without wanting to go beyond that. This rules out procedures or care including ICU admission, intubation, ventilatory support, ECMO etc.
A Do Not Resuscitate form that may either be filled by the patient or the LPA in an event when the patient’s heart stops. A DNR may also be advised or filled in by the treating group of doctors if they feel a resuscitation is not likely to improve the chances of survival or quality of life of the patient.
DNRs do not extend to unforeseen emergencies requiring life saving procedures.
DNR does NOT mean the withdrawal of medical care or attention. The patient will continue to receive the full care required in accordance to their treatment plan, but a resuscitation will not be initiated in the event of cardiac collapse.
Doctrine of Double Effect:
The doctrine justifies the unintended bad effects that occur as a collateral of the intended good effect. This is relevant mostly while minimising pain at the end of life. For example, a dose of opioid higher than the safe threshold may be administered to a patient under palliative care experiencing severe pain that remains intolerable. Though a high dose of opioid is known to cause respiratory depression that may lead to death, the fact that pain alleviation was the primary intent and not death justifies the act of increasing the breakthrough pain relief.
It is the obligation of the doctor to minimise harm to the patient. It includes components of “do not kill”, “do not harm”, “do not cause pain”, “do not cause suffering”. Under this, a doctor is obliged to weigh the burden of treatment upon the patient. This further substantiates the Doctrine of Double Effect by requiring the treating doctor’s obligation to reduce pain and suffering.
The treating doctors are obligated to act in favour of the patient with the intent of positive reinforcement of health, wellness and welfare. In distinction to Non-Maleficence, Beneficence demands not only the prevention of harm, but the permission of benefit to the patient.
Despite all the legal provisions in place, decision making in end of life care takes an immense toll on the doctor and treating staff. The ethical dilemma to deliberately commit or omit actions knowing it may amount to deterioration or death of the patient is unfathomable. However, as doctors, it remains our duty to ensure a quality in life and dignity in death. Besides, it is imperative to realise the burden of intensive care on the healthcare infrastructure as well as the financial implications on the patient party. Thus, the continuation of full fledged care in a patient with poor outcomes is almost as unethical as it is to opt for end of life care.
Putting a patient on palliative care will also give the patient and the family time to come to terms with matters, allowing for a psychosocial and spiritual development.
It further goes without saying that any end of life care decisions must be made only after due deliberations with a group of senior doctors, and the patient or family members.
I would end this piece with a popular statement my professor loved to tweak and quote.
A good doctor knows to diagnose, a better one knows the treatment, an excellent one knows when to palliate.
- End of Life Care in India: A Model Legal Framework November 2019 https://vidhilegalpolicy.in/research/end-of-life-care-in-india-a-model-legal-framework/
- Principles of Clinical Ethics and Their Application to Practice Med Princ Pract (2021) 30 (1): 17–28. https://doi.org/10.1159/000509119
- Plabable guides https://plabable.com/
- Images: Google