Common Cause and Lokniti Programme of the Centre for the Study of Developing Societies (CSDS), launched India’s first Status of Policing in India Report (SPIR 2018) at the India Habitat Centre on May 9.Read More+
The Answer is Palliative Care
RIGHT TO DIE IN PEACE
The Real Answer Lies in Compassionate Palliative Care
Dr M. R. Rajagopal*
A landmark ruling by the honourable Supreme Court of India on March 9, 2018 recognised a person’s right to die with dignity. It also validated the citizens’ right to prepare Advance Medical Directives and the medical system’s obligation to respect it.
This is a huge milestone in many ways, and while it still leaves a few areas quite grey, the fact that a person’s dignity in life and death is upheld as a fundamental guiding factor is reassuring and heartening. This can potentially apply to at least some of the 8.2 million people who die in India every year
" Euthanasia is the intentional act of killing a dying patient with terminal illness by the direct intervention of a doctor, for the purpose of good of the patient. “
However, medical practice cannot depend on law alone. It has to be tempered with and guided by acceptable ethical practices. There are three basic issues to be considered here.
First: The term ‘passive euthanasia’ has been used to describe the process of allowing natural death by withdrawing life-prolonging treatment. As the Indian Council of Medical Research points out, Euthanasia is the intentional act of killing a dying patient with terminal illness by the direct intervention of a doctor, for the purpose of good of the patient. However, allowing natural death, withholding and withdrawing of life sustaining treatment to limit harm and suffering in a dying patient should not be construed as euthanasia.
The term passive euthanasia is an obsolete terminology and should be avoided. Euthanasia cannot be passive and withholding or withdrawing a potentially inappropriate treatment in a patient dying with a terminal illness that only prolongs the dying process, cannot be construed as an intention to kill.
The terminology does matter. The term euthanasia often leaves the patient and family with guilt. It also brings in religious objections. It is necessary to be accurate with terminology and clarify that permitting a natural death cannot be called euthanasia.
Second: The procedures prescribed as safeguards are not only unwieldy in their bureaucracy but are also unfathomable in how they may be navigated by a family for whom time translates into a matter of life and death. As it stands now, implementation of the Living Will has to involve the following steps: 1) decision on futility of treatment by the attending physician, 2) decision on futility of treatment by a three-doctor-board convened by the hospital, 3) involvement of the district collector and the district medical officer, 4) appointment of and action by an independent three-doctor-board and 5) personal visit to the patient by the judicial first-class magistrate. How long will all that take? Every moment of life on a ventilator in an intensive care unit can be absolute torture for the patient.
Third: The palliative care discipline is conspicuous by its absence. End-of-life care is not only a matter of law. It is also about humanity, compassion and providing of comfort. As an example, take the case of a person with advanced chronic pulmonary disease. Typically, this patient would have had breathlessness, possibly due to asthma or emphysema (a long-term lung disease), for years or decades. In this condition, as time passes, the lungs gradually worsen and the reserve capacity for breathing becomes less. The person becomes unable to exert much. Still later, there would be some breathlessness even at rest and chances of superadded infections increase.
For such a person at a certain point of time, life may become a continual journey between the home and hospital. As respiratory functions worsen, care in the hospital is typically given in the intensive care unit (ICU). He goes on a ventilator for artificial breathing. He is isolated from his family, in a room typically artificially lit where there’s no difference between night and day. The room comes with no windows and the patient has for company strange bleeps, noises and masked professionals. Every aspect of his body chemistry as well as every organ gets attention, but not his feeling of hopelessness, fear and the wish that he were dead. Intensive care is very physical – typically organ and disease-centred. Typically, again, the person gets disoriented in the intensive care unit. It happens to one-third of all people treated in an intensive care unit within 48 hours, and to two-thirds of the elderly patients. Such disorientation is often accompanied with intense suffering. Hallucinations cause panic and the person tries to tear away the tubes and cables. Then the hands and feet are physically tied up. With every admission to the ICU, the person’s duration of artificial ventilation tends to get longer and the psyche gets mortally wounded. The person’s autonomy and dignity are violated in the worst possible way The legal and public thinking seems to be centred around vegetative existence like the sad case of the late Aruna Shanbaug. But more realistically, the above is what happens to tens of thousands of patients every year in Indian hospitals.
The humane and viable alternative would be an open discussion with the person and the family, a switch over from aggressive intensive care to humane palliative care. It is then that the comfort level and exercise tolerance improve. As a result, life, albeit limited, can become enjoyable with time spent on what one enjoys the most. At this point of time many material possessions – car, house, degrees, professional positions – tend to become irrelevant. What is significant thereafter turns out to be the love that the person gives and the love that he receives.
This is precisely what aggressive and intensive care denies to the dying person. And typically this is what palliative care can provide as an alternative.
The effectiveness of palliative care has been clearly showcased in the context of cancer. End-of-life care integrated with disease-specific treatment can not only improve the quality of life, but also prolong a person’s life by an average of three months (Temel et al, 2010).
Our Plan of Action for Palliative Care
Most importantly, a person in palliative care would not be isolated from the family. Certainly, we would look for any correctible factors and rectify them. We would try graded oxygen therapy after an agreement with the patient and family that it would be continued only if it provides relief to the patient. Realistic reassurance will be very valuable, as will avoiding meaningless phrases like ‘Don’t worry’ or ‘Everything is going to be all right.’
Such words do not bring relief because the patient knows the truth. Instead, a reassurance that someone will be staying to look after him or her till the patient feels better is likely to bring some relief. This goes a long way in reducing anxiety and making breathing easier.
When indicated, the necessary medicines like corticosteroids would be tried and any infection treated. However, our mainstay of management would be opioid therapy to reduce the sensation of breathlessness. In the absence of pain, the treatment would be with a starting dose of 2-5mg of oral morphine, given every four to six hours. If the patient is unable to swallow, the opioid medicine may be administered subcutaneously. While at one time, breathlessness was considered an absolute contraindication for morphine, today it has been clearly proved that morphine is the drug of choice for symptom control in terminal breathlessness.
Concurrently, there should be adequate communication with the patient. For most of us, communication is a matter of instinct. However, it is much more complicated than that. As in Western countries, it is necessary for healthcare professionals to have some basic training in communication skills, if we are to give some solace to the patient and the family. Depending on how much they want to know, they should be informed-
It would be important to check whether the recipient of the information has really understood what was communicated. Owing to stressed mental conditions, misunderstandings tend to be common.
The objective of such communication should be to reach an understanding of the person’s emotional status (anxiety, depression, fear, guilt etc.), social issues (financial hardships, issues of relationship within the family and with the outside world, stigma against the disease, isolation etc.) and spiritual issues (connectedness with one’s own faith and family, meaning and purpose of life etc.).
All issues cannot obviously be addressed. But a concerted effort needs to be made to mitigate as many problems as possible and to make life enjoyable. To this end, a conducive environment at home is the best solution. In case that is elusive, a hospice or hospital room, where the patient is surrounded by his or her caring family, works well too. In addition, communication, when undertaken with sensitivity and honesty, can lead to a dignified and comfortable end-of-life planning .
The Evolving Role of Palliation in Healthcare
The above example illustrates how the focus of management needs to shift from a totally disease–oriented approach to one focused on mitigating the patient’s agony. The physical, psychological, social and spiritual domains of suffering need to be addressed to improve quality of life.
The concept of palliative care pioneered by Dame Cicely Saunders in the 1980s, had concentrated on people dying with cancer. Today, it is universally accepted that discrimination in the name of a diagnosis is unfair. Anyone who has Serious Healthrelated Suffering (SHS) should receive palliative care (Knaul et al, 2017). It is also a globally accepted principle that palliative care is not only for those with incurable illness or for the terminally ill, but for everyone who has SHS.
In fact, in 2014, the World Health Assembly asked all member countries to integrate palliative care into their healthcare plans at all levels (primary, secondary and tertiary) across the continuum of care (from the beginning of the suffering to the end). It is also important to remember that the subject is not only the person with the disease, but also the family. For that reason, palliative care would include support for the bereaved persons as well.
Unless palliative care becomes an integral part of medical and nursing education and medical, nursing and allied professionals adopt the palliative approach in their dayto-day practice, end-of-life care will remain an uphill task. As a result, the vast burden of serious health-related suffering in India will continue to plague patients and their families.
What Can Be Done?
Compassionate intensive care and end-of-life care can become a reality only when they are integrated with the principles of palliative care. Imagine a person with breathing difficulty who is dependent on an artificial ventilator. When he is disconnected from the ventilator, he should not be left to suffer in agony. He needs proper symptom control and psychological support. Such integration of intensive care with palliative care would necessitate three areas of action:
Change is always resisted. Existence of proof of scientific advances does not always get translated to change in practice. Persistent efforts are needed to effect change. Barriers to palliative care like lack of awareness among professionals, administrators and public will have to be over come.
It is essential to educate the public and make them aware of the possibilities of a humane end of life care, which can be realised through the adoption of palliative care. The media hence, has an important role to play in this regard.
Simultaneous educational programmes will be necessary for professionals. Many institutions in India offer a six-week course in palliative care to doctors and nurses as well as volunteers’ training programmes. One to two-year postgraduate programmes for doctors have been recently started too. Even more importantly, palliative care must be included in the curriculum of undergraduate medical and nursing education.
2. Drug Availability
Morphine is the mainstay of cancer pain management as well as that of intractable breathlessness. Its availability has been eased in some states up to a point, but for the vast majority of the needy, there is still no access. And the reality of poverty in our country mandates that the majority of patients will get pain relief only if essential drugs are dispensed free of cost. Owing to advocacy for over 19 years, the Narcotic Drugs and Psychotropic Substances (NDPS) Act has been amended, thus easing the legal barriers to access opioids. But this is yet to be implemented by all state governments so that all hospitals can become Recognised Medical Institutions (RMI) and can procure essential opioids with a simple, yet safe, single window system.
3. Policy and its Implementation
In India, like much of the world, palliative care came into being because of individual initiatives and action by non-government organisations. However, to achieve national coverage, palliative care needs to be integrated into general healthcare delivery system. Experience from countries like Uganda has shown that even in resource-poor countries, government efforts can result in effective action, aimed at achieving coverage. India’s National Program for Palliative Care (NPPC) is a step in the right direction.
Significant progress has been achieved in Kerala by bringing in a state palliative care policy in 2008. A national palliative care policy is the need of the day. But the bulk of healthcare in India is in the private sector, and unless the private healthcare system also embraces palliative care, coverage will be difficult.
Ethical End-Of-Life Care and Law
The Bolam test which has been advocated in the UK states, “A doctor is not guilty of negligence if he has acted in accordance with a practice accepted as proper by a responsible body of medical men skilled in that particular art. Putting it in another way, a doctor is not negligent if he is acting in accordance with such a practice, merely because there is a body of opinion that takes a contrary view” (Jones, 2000).
It is then up to the professional bodies and the society to recognise that the physician’s duty of care comes first and that he is not bound to provide any treatment that is in conflict with the duty of care.
As a person who is almost sure to need palliative care at a certain stage of my life (like everyone else), I hope application of the Supreme Court judgment needs to be relevant only to those situations in which it is doubtful or contested what the “duty of care” comprises. And I hope that at that time, the healthcare system will permit a humane transition from diseasefocused care to compassionate care, aimed primarily at quality of life.
Indian Council of Medical Research. 2018. “Definition of terms used in limitation of treatment and providing palliative care at end of life”. Available at https://palliumindia.org/cms/wp-content/ uploads/2018/06/Definition-of-terms-usedin-limitation-of-treatment-and-providingpalliative-care-at-end-of-life.pdf
Jones, JW. 2000. “Law & Ethics: The Healthcare Professional and the Bolam Test.” British Dental Journal 2000. 188.
Knaul, FM, Farmer, PE, Krakeur, EL et al. 2017. “Alleviating the Access Abyss in Palliative Care and Pain Relief—An Imperative of Universal Health Coverage: The Lancet Commission report.” The Lancet, 391:10128
Scottish Palliative Care Guidelines. Undated. Breathlessness. Available at http:// www.palliativecareguidelines.scot.nhs.uk/ guidelines/symptom-control/breathlessness. aspx. (Accessed on 24 June 2018)
Supreme Court of India. 09 March 2018. Common Cause (A Regd. Society) vs Union of India and Ors. MANU/SC/0232/2018 Available at https://supremecourtofindia.nic. in/supremecourt/2005/9123/9123_2005_ Judgement_09-Mar-2018.pdf (Accessed 24 June 2018)
Temel, JS, Greer, JA, Muzikansky, MA, Gallagher, ER et al. 2010. “Early Palliative Care for Patients with Metastatic Non– Small-Cell Lung Cancer.” The New England Journal of Medicine. 2010;363:733-42.
The Logical Indian Crew. 2018. “Aruna Shanbaug: Her Life Was So Unbearable That We Are Happy She Is No More.” The Logical Indian March 09, 2018. Available at https://thelogicalindian.com/exclusive/ aruna-shanbaug/ (Accessed 24 June 2018)