These thoughts come M R Rajagopal (known to all as Raj), who is a member of the Commission, a palliative care physician, and the founder chairman of Pallium India, a palliative care non-governmental organisation based in Kerala.
About dying well
One significant negative influence of the high-tech over-medicalisation of death by today’s health care industry is that it changes public perception also. Today, atleast in cities and among the affluent, death in an intensive care unit (ICU) is seen as the norm. It is as if almost everyone feels, yes, that is the way it should be. This suits the health care industry. As health care is privatised in much of the developed as well as developing world, the out-of-pocket expenditure to the family is enormous. A recent frightening statistic from India shows that in one year, 55 million people are pushed below poverty line by out-of-pocket catastrophic health expenditure.
Death in the ICU suits health care professionals also because, with the rapidly changing dynamics during the dying process, the families would be worried and may pester the nurses and doctors with complaints on behalf of the patient. By isolating the person in an ICU, we are completly preventing such complaints from families.
The consequence is that when the person needs a human touch most, that is denied to the person. That human touch and care by relatives is replaced by treatment in an ICU at an enormous cost to the person and the family, both in terms of suffering and money.
Despite such public acceptance of high-tech death as the norm, there is substantial discontent with this way of doing things in a growing section of the society. Many lone voices have been heard, but as they were disorganised, most had very little impact.
For the people who feel the injustice of it, the obvious way in which they can protect themselves and their loved ones from such misery is by preparing advance medical directives (AMDs). This is a paradox because for all practical purposes, people are preparing legally valid documents to protect themselves against a perceived onslaught by the medical profession. Clearly, if the medical profession were giving ethically appropriate end-of-life care, such an advance directive would not be necessary!
But things seem to be changing. A consequence of today’s unethical, inappropriate, inhumane end of life care practice is a growing number of activists who are trying to create legal solutionx for end of life issues. But legal solutions tend to be rigid and complicated and often add on to the problem as happened in 2018 in Inda. By a verdict in March 2018 on a public interest litigation by a non-government organization by name “Common Causes”, the Supreme court accepted that the individual had a right over his own life and that advance medical directives (AMD) need to be respected. Nevertheless, fearing abuse of such a provision, the court put in the following safeguards:
The AMD must be countersigned by a judicial magistrate of the first class.
Before deciding to act on the AMD in terms of withdrawal of life support, the following steps are to be taken.
A three-member board of specified specialist doctors must recommend acting on the AMD.
Their decision is conveyed to the district collector (the chief of executive of the district).
The district collector appoints another three-member board of specialist doctors who recommend acting on the AMD.
This matter is conveyed to the judicial first class magistrate who personally visits the patient.
The judicial first class magistrate passes an order permitting acting on the AMD.
The above process is so complicated that in the 10 months following the verdict, there is no known instance of a withdrawal of artificial life support following this procedure.
As the above shows, unless the ethical course of action is widely discussed and accepted by professionals and the public, laws cannot work to the people’s advantage. As Isi Breen writes:
“Yes. Crossing the border without documentation is illegal. Being black without a white owner was illegal. Walking into a whites only restaurant was illegal. In Germany, being a Jewish person was illegal. Without ethics, laws are just the stories we tell to justify horror.”
Medical science seems to have grown into a monster successful at defeating the very purpose of the medical profession, ‘to cure sometimes, to relieve often and to comfort always.’ Instead it has turned out, in a large percentage of clinical circumstances to inflict suffering particularly towards the end of life.
The only reasonable solution seems to be generating public discussions about death. Surely, we should be discussing about humane end of life care way more than we discuss euthanasia? We should be discussing access to palliative care which would look after not only the physical needs, but also the emotional, social and spiritual needs of the patient and the family. If we facilitate it, the phase of dying could even be a rich experience during which past grievences and quarrels can be washed away with forgiveness and love. And then perhaps the person could face the inevitable end with some peace of mind and a sense of fulfilment. And then, the family could live with the memories of their loved ones, atleast with some little pleasure thinking of the good times they have spent together and the love and care that they have shared between them.
In “The Tibetan Book of Living and Dying”, Sogyal Rimpoche writes, ”One of the things I hope for from this book is that doctors all over the world will take extremely seriously the need to allow the dying person to die in silence and serenity. I want to appeal to the goodwill of the medical profession and hope to inspire it to find ways to make the very difficult transition of death as easy, painless, and peaceful as possible. Peaceful death is really an essential human right, more essential perhaps than even the right to vote or the right to justice; it is a right on which, all religious traditions tell us, a great deal depends for the well-being and spiritual future of the dying person. There is no greater gift of charity you can give than helping a person to die well”.