Goodbye with Dignity

Amit Kanti Sarkar

Passive Euthanasia and Living Will
In a milestone verdict on 9th March 2018 the Supreme court has upheld passive euthanasia and the right to give advance medical directives or ‘Living Wills’ to smoothen the dying process as part of the fundamental right to live with dignity under Article 21 of the Constitution includes the ‘right to die’. Passive euthanasia is the act of withdrawing or withholding medical support to a dying patient who has no hope for revival or cure.

A valid ‘Living Will’ facilitates passive euthanasia. While recognizing passive euthanasia, the Supreme Court allowed advanced directive or living will, by which patient can spell out whether treatment can be withdrawn if they fall terminally ill or incompetent to express their opinion. Before discussing euthanasia, its implication, limitation as well as menace we may look through the ‘Living Will’.

The key points of ‘Living Will’:

* An adult with sound mind and health to make a ‘living will’ specifying that his/her life should not be prolonged through a life support system have slipped into a persistent vegetative state in order to allow them to die.

* It should be voluntarily executed based on informed consent.

* The will shall be attested by two witnesses and countersigned by 1st class judicial magistrate

* The magistrate shall preserve one hard copy and soft copy each and forward it to the district court registry

* Copy will have to forward to local govt. official e. g. Municipal Corporation, Municipality, Panchayat office; they will nominate a competent official who will be the custodian of such documents.

* The doctor/hospital should ascertain the genuineness of the document from above mentioned Govt. authority.

* The hospital shall constitute a medical board consisting of at least three experts and this board will give their opinion and certify the document.

* The hospital should immediately inform Municipal Corporation/ District magistrate about it, they in turn constitute a medical board comprise of CMOH and three experts.

* If this board after examining the patient in person too concurs with the decision of the hospital’s medical board then only the magistrate has to be informed of the decision to withdraw the life support system.

* The magistrate then has to visit the patient and authorize it.

* A person can always withdraw ‘Living Will’ by writing at any time. Moreover, the medical board need not follow the ‘Living Will’ if it is unclear.

The fear of death; uncertainty, intolerable unnecessary sufferings at dying condition; failure or limitation of the treatment at this stage, as well as patient’s individuality and autonomy make the ‘Euthanasia’ issue relevant. The seventeenth century philosopher Francis Bacon used this word first, which comes from the Greek word ‘Eu’ means good, beautiful; and ‘Thanatos’ means ‘death’. Though in ancient era of Greece, the ‘Hemlock Society’ pleaded for the right of death, but in later period Socrates, Plato, Pythagoras as well as common Greeks were against that advocacy.  As per medical definition, ‘Euthanasia’ is the act or practice of causing or permitting the death of hopelessly sick or injured individuals by a relatively painless way for reasons of mercy. In practical sense, it is the work performed by a self-motivated individual to help a patient with unbearable suffering to terminate his or her life at his or her request. It may be voluntary, involuntary or non-voluntary depending upon the decision-making capacity, willingness and acknowledgement of the patient.

It is accepted generally that a physician should always take care for the beneficence of the patient and exert his best effort for the betterment of the patient; therefore ‘Physician Assisted Suicide’ (PAS) may be considered as against the ethics of ‘Doctor Patient Relationship’.

Euthanasia in Different Countries
It is first introduced in Netherlands in 1984 for the patients, who were able to make decision. In  later period ,euthanasia, assisted suicide or mercy killing have received the legal validity  in different countries e.g. Colombia, ,Switzerland, Japan, Germany, Belgium, Luxemburg, Estonia, Albania; different  states of U.S.A. as Washington, Oregon, Vermont ,New Mexico  and Quebec of Canada.

 On the basis of ‘Aruna Shanbaug Case’, March 2011, the Supreme Court of India has given the legal
validity of conditional ‘Passive Euthanasia’, which can be applicable to coma patients with permanent vegetative state by withdrawing of different life supports and it should be permissible in the rarest of the rare circumstances.  Later on, 25 February2014, an NGO named ‘Common Cause’ filed petition, in favor of the right to die with dignity. The Union Health Ministry, Government of India released a ‘The Medical Treatment of Terminally Ill Patients Draft Bill’ in the public domain on May 2016 for consultation with stakeholders, about patient’s right to take decision and express his/her desire to attending physician on this issue. Thereafter ‘The Treatment of Terminally Ill Patients Bill, 2016’ tabled by MP Baijayant Panda in Parliament on 25th July, 2016.  Recently 9th March, 2018 legalized ‘Passive Euthanasia’ and approved ‘Living Will’ by verdict delivered by Constitution bench of Chief Justice Dipak Misra and other justices of Supreme Court.

Different Aspects of Euthanasia
A patient or his/her close associates think about Euthanasia for the following reasons:

* The unknown fear towards sufferings at last stage of dying condition
* Loss of all physical ability and self-control
* Become fully dependent on others
* Financial constraints i.e. cost of care and who should bear the cost

On the other hand, some legal precautionary measures have been advised for Euthanasia, those are,

* Patients’ written consent
* Physicians’ report in every step of treatment
* Always a physician will administer the injection, never a nurse at any situation in case of PAS.
* In case of ‘PAS’, how it would be implemented should be written clearly and categorically in the prescription by the physician.

Euthanasia in countries, where the law already exists also needs some precautionary measures for implementation; following relevant questions include:

* Whether the degree of suffering has been determined properly.
* Whether the caregivers try to create bond with the patient and his/her suffering empathetically.
* Whether doctors or family members pay sufficient attention to alleviate pain and sufferings.

Actually, pain and sufferings are always measured by biomedical model; therefore, the disease and curability of the disease have been emphasized primarily, but not the patient as a ‘Whole Person’.

Most of the cases the discussion on Euthanasia was made by considering   the view of physicians, family members and common people, dying patient discretion has get little prominence. As a result, the discussion and research on the subject has remained inconclusive. Doctors should be careful, about this, because euthanasia either it is ‘Active ’or ‘Passive’ has been committed through them.

Therefore, it is very needful towards patients, family and caregivers to give importance on determination of death, quality of life of the patient at dying condition, autonomy of the patient, at the same time honor the last wishes of the patient.

Determination of Death: Physician responsibility
‘Brain death’ was accepted as the definition of death in medical science since 1959; which was expressed by the French word ‘coma de’passe’, the situation beyond coma instead of the past definition of irreversible cessation of respiration and heartbeat. In 1968, Harvard medical school created the outline, how and when the determination of Brain death would be ascertained. Although there is some variation of the tests in death determination in different countries, grossly it is confirmed by measuring the spontaneous normal breathing, all activities of brain, electrolyte balance, body temperature etc. at two hours interval by two different physicians.  In India, Brain Death has received legal recognition under ‘The Transplantation of Human Organ Act 1994’.

A physician declares a person dead and issues a death certificate after a determination of death is made in accordance with accepted medical standards. Whether the physicians restrict themselves only on the issuance of certificate? Physician should inform and prepare the family regarding death and dying condition of the patient.  It is difficult for the family members to accept the patient as ‘dead’ while the heart beat is still going on with the help of supportive devices even after ‘Brain Death’. ‘Truth telling’ is very important in this situation from the ethical point of view. In this situation the physicians should discuss condition sensitively by which the family members can make decision, reset goals and choose appropriate supportive treatment.

 Passive euthanasia implies withdrawing life support to coma patients with vegetative state when he/she is not mentally alert. Mental alertness is assessed by the Glasgow Coma Scale score, which tells us the level of consciousness. In normal individuals, the score is 15, if it is less than 8 that means the patient is not conscious, the chances of recovery are less. But if that score is 3, the possibility of recovery is practically zero, and then the patient has been declared as ‘Brain Dead’.

The Crisis at Dying Condition                                           
How a man dies; how he/ she accepts the death; whether he/she stays his/her last days in preferred place with dignity; whether he/she is prepared to accept the death: whether his/her last wishes are being uphold – there is no such system to maintain these data properly. ‘Modern death’ is nothing but a ‘War’ to control the suffering of the dying patient. A physician always thinks that it is his/her personal as well as professional failure if he fails to control the sufferings or is unable to cure the patient. The attitudes of escapism of the family members from taking responsibility at dying condition also make the situation complex. As a result, the autonomy, willingness, opinion of the patient is undermined. The treatment, future planning all is settled according to the opinion and wishes of the physician and family members. According to Glaser and Strauss the prognosis at dying condition influence the decision making and interrelationship amongst patient, caregivers and family members as well as shaped their experience differently either open, closed or no discussion made by physician.

Some relevant questions on Supreme Court verdict:

* But stringent guidelines need to be in place to prevent misuse. Moreover, a special clause should be incorporated in all life insurance policies that passive euthanasia would also be tantamount to natural death and   declaration from the policy holder regarding his decision on passive euthanasia obtained at the time of issuance of the policy.

* This judgment serves the purpose of a modern, production-oriented society by giving the non-productive individuals with a terminal illness to refuse medication the ‘autonomy’ to die. It is a sociological reality that many people in their old age start feeling worthless due to a lack of direct contribution towards the “process of production” in society. After this judgment, such a feeling of worthlessness, if compounded by the person suffering from a terminal illness, is bound to become much worse.

* The court has said “the individual interest has to be given priority over the state interest”. By translating the judgment into law this ‘State’ takes off its moral obligation to give the health care facility to its’ citizen specially at his/her physically as well economically distressed condition.

* The right to life under Article 21 has been interpreted by SC as the right to live with dignity. When a person chooses to end his/her life because he/she can no longer live with dignity, the question to be asked whether he/she can waive his/her   constitutional right to life, but, whether he/she has the right to choose. Therefore, question arises, whether right to life extends to right to choose.

* It is inhuman to sustain an individual’s suffering through artificial means. However, the ruling has wider connotations in its applicability. It will be morally challenging for the stakeholders executing the process, especially for the physicians who are expected to sustain the patient’s life.  The moral, religious and personal beliefs of an individual on life and death can play a significant role in the decision-making process.

* Though it was said in different times the need of care, treatment and rehabilitation of those persons having severe stress and attempting to commit suicide, but whether this verdict takes the first step towards decriminalization of suicide and the state takes off its responsibility of mental care of them in excuse of ‘right to choose ‘of the person.

*  Above all, there will every chance of its abuse at this stage due to animosity among family members in   property, money, succession right question and that will be aggravated by the corrupted judicial and political system.

* This ‘Living will’ can be valid legal document; actually, it should be a process of open end conversation of a patient about his/her desires with the physicians and family members.

In this backdrop, it is going to be established that euthanasia has become the option for terminally ill persons, in order to die with dignity. On the other hand, palliative care seeks to reassure people with terminal or chronic ailments that they are still worthy of living.

Palliative Care: The Alternative
Palliative care is becoming acceptable increasingly to ensure a good death. Palliative care is a term   derived from Latin word ‘Palliare’ which means ‘to cloak’, i.e. cloaking the illness by relieving the pain. According to the definition of World Health Organization, “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment, and treatment of pain and other problems - physical, psychosocial and spiritual.”

The book ‘On Death and Dying’ written by Swiss psychiatrist Elisabeth Kubler-Ross and the five stages of grief (denial, anger, bargaining, depression and acceptance.), model is the backbone Palliative Care philosophy and its movement.  In 1967, Cicely Saunders took the pioneer initiative to introduce the effective team work in palliative care in the ‘Christopher Hospice Centre ‘at London. Thereafter, the palliative centre were built not only in the developed countries like France, Australia, Scotland, UK, USA etc.; but developing and undeveloped countries like South Africa, Kenya, Tanzania etc., have also included palliative care as a part of their National Health Policy and take initiative to train the physicians to champion the issue.  Though no distinct National Palliative Care policy present in India, but few states like Maharashtra, Kerala, Karnataka, Tripura are having palliative care policy of their own.

 According to the study report of WHO, 40million of patients need palliative care, amongst them 78% patients from low or middle-income countries; within 234 participant countries only 20 countries are having integrated palliative care system,42% of those countries have no palliative care facility and 32% countries are having some facilities.

Previously palliative care service restricted in cancer and old age diseases, but now it becomes widen at different incurable diseases also. In modern palliative care approach, the care should not restrict for terminal condition only; it should be delivered before that, from the very beginning to get the optimum effectiveness.

 The Palliative care aims to address the following problems:

* Physical problems (Pain, Nausea and Vomiting, Dry Mouth, Breathlessness, Pleural effusion, Loss of appetite, Ulceration etc.)
* Psychosocial problems (Change of relationship among family members, Communication problem, Financial problem, Dependency on others, Loneliness, Depression, Emotional isolation etc.)
* Spiritual problems (Self accuse for the disease e.g. Why me? What is the point of my being alive, Loss of self-confidence, Crisis on cultural and religious values)

 Palliative care not only offers a support system to help patients, but also the family to cope up during    the patient’s illness and in their own bereavement. Palliative care also makes the family members courageous to end of life decision and educate them to accept death as a normal process. It is evidence based holistic approach. ‘The Treatment of Terminally Ill Patients Bill, 2016’ bill also emphasizes the need to account for palliative care when making end of life care decision. It can be the choice of treatment for terminally ill patients in a low or middle-income country like India.

For effective palliative care there is a need to change some basic attitudes of physicians, patients as well as the society.   The inclusion of family members in the care provider team comprise of physician, nurse, health worker etc., participation of community, trustworthiness of physician, and standardization of treatment protocol based on evidence-based knowledge; integration into public health system will make the palliative care effective. India needs enabling legislation for end of life and palliative care.

Dr. Amit Kanti Sarkar, Secretary,ONCOLINK -A Society for Cancer Mass Education, Prevention, Early Detection, Treatment, Rehabilitation & Research  
Vill. Teghari, PO. Madanpur, Dist. Nadia, Pin. 741245

Mar 23, 2017

Dr. Amit Kanti Sarkar [email protected]

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