Need to weigh the burdens vs benefits of medical intervention

Moral dilemmas are inevitable for a physician who takes his job seriously. One cannot always find easy solutions but there is no shying away either. I was once witness to a particularly heart rending predicament of a dying man’s family. The elderly gentleman had undergone cardiac surgery but ended up having failure of several organs. He had remained on respiratory support, cardiac support and dialysis for an agonising two weeks. The doctors pronounced a ‘no hopes’ prognosis. His distraught family requested that all his supports be removed so that his death does not get slow and painful. The doctors believed that they were obliged to continue all the supports as Indian law did not permit ‘euthanasia.’ Bills were mounting by the hour, pushing the family to the edge. They found themselves in a position where they could neither take the patient home nor continue to pay the bills.

This account is straight out of an everyday scene in any busy Indian ICU. It just shows how little our early professional training has prepared us to understand and meet the needs of a dying patient and his or her family. Doctors took a defensive position largely because of the ambiguous legal opinions prevailing in the country that misinforms us that limiting therapy in any situation is a form of euthanasia. This canard only makes sure that there is little ‘Karuna’ and no ‘Lakshman Rekha’ of reasonable resetting of goals for the dying patient.

In a country where central healthcare allocation is one of the lowest in the world and out of pocket payments constitute more than 75 per cent of healthcare expenses, costs in a dying patient can be crippling. In meeting these expenses the family may, more frequently than not, be driven to empty out a lifetime’s savings or to sell off their property or valuables. Much of this expense is sheer wastage that could be avoided by pragmatic decisions. To top it all, instead of a quick resolution all that the patient gets is more pointless medical intervention.  A medicalised death is not what he would have wanted.  But who is listening or who cares?

Returning to the story, the family at one point pleaded that the patient be freed from his support so that they can take him home. To convince the treating team of the reasonableness of their stand they cited the example of a relative who died in the US having had all his supports removed at his family’s request. They wanted to know why the laws are so different in this country where the bills are paid mostly out of pocket.
The doctors replied that in our country such withdrawal of support is equated with euthanasia and all that they can do is to let the family take the patient against medical advice. The latter deed embodied in the well-known acronym ‘LAMA’ is highly prevalent in our country, in situations similar to the one described. What does it mean to be sent LAMA? It means that the healthcare system has nothing to do with managing a patient facing death, once the family cannot pay for continued unwanted treatment. We take refuge in the lack of clarity in our law separating euthanasia from legitimate and appropriate holding back of expensive therapies, only to find an easy way out of morally challenging situations.

Compassionate approach

Our society and indeed our legal opinion appear oblivious to issues that touch our lives so deeply while indulging in opinionated discussions on euthanasia. The dying only need a compassionate approach that carefully weighs the burdens versus benefits of medical interventions, not euthanasia. When we clear the air of vague opinions we can get logical and set ourselves free for meaningful care of the dying.

No civilised nation on this planet would fail to address the vital issue of social justice around healthcare allocation. The new separation between the haves and the have nots is the access to modern healthcare. The right to live or die amounts to nothing when there exists neither money nor access to such care. There appears to be no obligation of the State to ensure that every salvageable patient gets best available care. Private healthcare which dominates the tertiary level is out of reach for all but a handful. Social security exists only for government employees and health insurance has only touched 25 per cent of the urban population. In the above context the allocation of limited resources for healthcare has been skewed heavily against the have not.

These issues are fairly well settled in the ‘American model’ that we try to adopt in the technological but strangely not in the humanitarian side of healthcare. Most countries are rewriting their laws to reduce the impact of ethical complications that technology has created towards the end of our lives. Care of the dying and their families is being refined more and more in the world that we choose not to see. The paradigm shift in improving the quality of dying is reflected in the steady growth of the hospice movement. More and more are opting for hospices where only nursing and spiritual support is deemed appropriate for patients who because of advanced age or disease are unlikely to benefit from interventional medicine. Why have we fallen behind in conceptual clarity in a country that prides itself in human values?

We have chosen to misread the needs of the dying. We are much too worried about possible misuse of a legal provision that would allow treatment limitation. Our mindset is paranoid and defensive rather than caring. We have not yet grasped the enormity of suffering that disproportionate treatment can cause to patients, families and, make no mistake --to caregivers as well who take their calling seriously.