The theme of the National Bioethics Conference held recently and titled, 'Healing and Dying with Dignity: Ethical Issues in Palliative Care, End-of-life Care and Euthanasia' evoked tremendous response from all sections of the society including health professionals. Care of the dying has not received its due attention in India despite growing numbers of aged and terminally ill population.
For the most part, hospice and palliative care is left to charitable/religious organisations whose dedicated work is limited only by resource. Very few tertiary hospitals have fully staffed and trained palliative care departments. A 2010 study ranked India abysmally low, 67 out of 80 countries, in `access to end-of-life care'.
If we are to provide humane choices for the dying, palliative care must compliment mainstream health services at every level, offering patients the right to die with dignity. The duty to care for the patient does not end when clinical interventions prove futile. Dying patients are entitled to basic physical comfort and freedom from pain, two important pillars of palliation, and respect of personal choice in refusal of surgery or invasive procedures. The doctor has a central role in providing compassionate care in end-of-life situations.
In some cases, doctors are programmed to provide aggressive solutions, no matter how distressing that is to the patient. Other times, it is the family, pleading with the doctor to 'do all that is possible' to reverse the dying process. At the heart of this dilemma is a collective denial of the inevitability of death and imminence of loss that can cause unnecessary suffering for patients and an undignified end, strung from tubes and tethered to blinking monitors.
Refusal of treatment is a valid option that patients can exercise consciously once the outcomes of available interventions are explained. This has been largely ignored in the Indian setting where patients are often discharged when all treatments fail, and the family left to manage the patient as best they can until the end. Ironically, these are the very situations where care is most needed.
The World Health Organisation (WHO) defines palliative care as 'an approach that improves the quality of life of patients and their families facing the problem 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, psychological and spiritual'.
It highlights the families of dying patients as much in need of support and counselling as the patients. Palliative units equip family members with skills to care for the patient at home, allowing the patient the comfort of a familiar space, surrounded by family at the end. Of importance is attending to the spiritual and psychological needs of the dying person.
Religious rituals, prayers, reconciliations and farewells can ease the dying process even in hospitals. Most of all, health personnel need training to consciously include palliative care into practice so that dying patients do not feel abandoned.
A cultural barrier could be the discomfort to talk about death and dying. It is considered inauspicious to talk about death, a collective social denial, so that individuals cannot share their idea of a 'good death' nor can they express medical preferences regarding invasive or aggressive treatment in case of terminal illness. This leads to confusion and emotional distress when the family of an incapacitated patient is faced with a difficult medical decision.
End of life decisions
It is easier for the doctor and family if there is some idea of the patient's wish. Even when the patient is competent, there could be differences of opinion, but in such cases, the doctor is obliged to respect the wishes of the patient, if the patient is fully aware of the consequences.
Some countries permit legal documents that make end of life decisions easier. A 'Living Will' is a written statement of a person's preference regarding future medical treatment when they may not be able to give consent. An 'Advance Directive for Health' gives power-of-attorney to a surrogate decision maker in case a person becomes unconscious. Although these instruments are not yet legal in India, they are useful to understand the wishes of the patient.
The Medical Treatment of Terminally Ill Patients Bill 2016 seeks to protect the right of every competent adult patient to take decisions regarding withdrawing or withholding medical treatment. It cautions that these patients should not be denied palliative care when they refuse treatment. While the Bill is focused on protection of doctors and patients in end-of-life decisions, it highlights this neglected area in healthcare. Unfortunately, debates on euthanasia obfuscate all discussions on terminal care in this country, totally neglecting dying patients and palliative care.
The Indian Society of Critical Care Medicine (ISCCM) and Indian Association of Palliative Care (IAPC) jointly released an 'Integrated Care Plan for the Dying' in 2014, bringing together doctors from critical care and palliative care to work together for better patient outcomes. The plan recognises medical futility and calls for professional honesty and sensitive communication with patients and caregivers, advocating support of the patient and the family when medical goals shift from cure to comfort.
Through Pallium India' (1993), Dr M R Rajagopal pioneered palliative care units throughout Kerala and other states over 20 years. Today, Kerala is the only state with a working Palliative Care Policy that reaches every district in the state.
Commitment to care for the dying requires inclusion of this subject in the medical curriculum, elevation of palliative care to a speciality like geriatric care, and establishment of palliative care units in every hospital. As a society, we need to get comfortable about discussing death, sharing our wishes and concerns with our family.
(The writer is Adjunct Professor, Department of Health and Humanities, St Johns Research Institute, Bengaluru)