The advances made by medical science have not only increased life spans, it is now possible to ensure good symptom relief right till the end. Why then are we debating the right to end our lives prematurely? The awful truth is that while it may be possible to keep death at bay for a longer period today, it comes at a terrible price. By and large, we are condemned to breathe our last in unfamiliar surroundings, separated from those we love, strapped to machines that keep us artificially alive. Where is the good death?The modern hospice movement, which is now more than four decades old and exists world wide, originated in an attempt to provide an answer to this question. Those in the forefront of administering care to people who were dying in hospitals were appalled by what they saw and heard. Cicely Saunders, a nurse at one such hospital in Britain, coined the term “total pain” to describe the condition of her patients; pain which transcends the physical to encompass the psychological, social and spiritual dimensions of human existence and to which no attention is paid.Palliative care, a medical sub-specialty, grew as a handmaiden to the hospice movement. There was need to find better and more effective means by which people who were dying could be relieved of their “total pain”. It is not surprising, therefore, that care to the dying began to be administered by a multi-disciplinary team comprising doctors, nurses, psychologists and the clergy, among others. In keeping with the focus of palliative care, the dying person and family members were also considered part of the team as no one knows us better than we do, while our families are our most committed caregivers. After working in palliative care for the past seven years, as a member of the CanSupport home care programme in Delhi, I know that given the right kind of care it is possible to help people to continue to live with dignity in the face of encroaching death. Besides a skilled team, it requires attributes like patience, a non-judgemental attitude and courage. Communication is the key. This is not just about instructing people but listening to them with attention and respect. For what is meant is often not voiced; while what is said is not necessarily what is meant.Elizabeth Kubler-Ross, the renowned psychiatrist, drew our attention to the emotional stages that a person dying goes through: denial, isolation, anger, bargaining, depression, acceptance and hope. In reality, people go in and out of these stages, even experiencing more than one simultaneously. Through this, there is a real struggle to hold on to hope and our business is to respect this even as we gently move the person on to accept the reality. This does not mean, however, that we lie or make false promises.Wanting to set one’s affairs in order, writing a will, meeting people to mend relationships or to say goodbye are requests that are often not entertained because they are too painful. And yet, unresolved issues can cause people more physical pain than one can imagine. This again is where a neutral third person, trained in communication, can play a pivotal role as an advocate for the dying person and help educate the family.This is not to say that the physical side of dying is to be ignored. Far from it. Symptoms that cause pain and discomfort must be dealt with speedily. The value of following the WHO ladder for pain control cannot be over-emphasised, with opioids such as oral morphine playing a critical role. The family, too, need to be instructed about the nursing aspects of care. Our nurses at CanSupport spend time teaching the family wound management, catheter and mouth care, prevention of pressure ulcers and even how to administer simple injections. Surely the spiritual questions are the most challenging. Who am I? What will happen to me after I die? Such questions have no easy answers and neither should we pretend to have them. Each one of us will have to make his or her sense of it all and find our own meaning. What we as concerned caregivers can do is offer our constant presence and understanding to facilitate this.To summarise, the preparation for dying must extend to all aspects of a human life. Only then will we depart feeling whole and with a sense of completion. This can only become a reality if palliative care enters the medical curriculum in India, if oral morphine becomes more accessible, if doctors are trained to use it and if policy makers incorporate palliative care into the health system at all levels. Otherwise, there will be no good death. There will only be waiting and the waiting is long.
