A recent article I read on the way two rational scientists decided to leave the world was very interesting. (http://www.theage.com.au/interactive/2016/the-big-sleep/) The 87 year old husband and 83 year old wife, with family and friends in the know, took their own life in a planned manner. It was something they had thought about, decided with a rational mind and for which they found support from Exit International, an organization that supports and works for legalizing euthanasia.
In sharp contrast, dying with dignity is becoming difficult for Indians. In the recent issue of Caravan, Jean Jacob writes that “India is a bad place to die in” – which has been my sentiment for a while now (the link does not give full article). Its a painful article to read but highlights a very pertinent issue for any ageing society, and for each one of us who are care givers to those older than us, and are part of the one inevitable truth -“time and tide waits for no man”. Jacob recounts the painful story of an 83 year old man who was making the fourth trip to the ICU in a serious state and when the family was asked about advanced life support (ventilator care and other intensive methods) they said they wanted it and could afford it.
Palliative care, a branch of medicine focused on improving quality of life of people with life-limiting illness, is almost non-existent in our country. As per this article on the quality of death index, (yes, there is a methodology to even measure death!!) India ranked 67 among 80 countries. In spite of a WHO directive, we have no national palliative care policy. Geriatrics as a specialty has no status and there are no efforts to promote it. There is a a slow awakening for the need to have the care givers (doctors, nurses, physiotherapists, home attendants) for an ageing population, but the active efforts are few and far between.
And like so many other uncomfortable issues, this is a conversation that individuals, families, society and of course the Government does not want to look in the eye! In a mature system, individual autonomy of the patient would be respected, and the patient is allowed to discuss and take decisions as to his/her preference for the terminal days of life. This may include accessing ventilator assistance when breathing fails, or intravenous support for drugs etc. or not. These choices are recorded in a living will, a legal instrument that does not exist in our system. On the other hand, what we see is a frantic, do-all-you-can efforts to which the fragmented family structure subscribes (for often the wrong reasons) and the over-aggressive health system supports. The overall result is that most Indians, have a ‘bad death’, that is dying alone (inside the ICU), often in pain and after a life that has been prolonged by aggressive and de-humanising care rather than a ‘good death’ – peacefully, without pain among loved ones and often at home.
To change this, we need change in the law, change in society, more trained personnel and infrastructure – namely, homes offering palliative care. As this article highlights, Kerala is the only State which has a palliative care policy and has over 200 facilities that offer such case as against 100 in the rest of the country. There is an urgent need to address these issues and I for one would like to have the ‘good death’. And the end, for our 83 year old man –
‘An hour later, the code blue was announced. Two doctors were taking turns giving him chest compressions when we reached the ICU, and every alarm on his monitor was crying for attention. A nurse was breaking ampoules of drugs for injections from an emergency trolley, and another was charging a defibrillator. A rib broke. Frothy red fluid leaked out from the ventilator tube in the patient’s mouth. We delivered 360 joules of electricity electricity over his heart. Someone had forgotten to draw the curtains shut, so the last moments of his life became a public spectacle. We continued for half an hour before we declared him dead.
The death-care began. THe curtains were finally drawn around the bed, the nurses started removing his plastic tubes. Besides the one in his mouth, there was one in a vein in his neck, that had sent medicines to his heart; one in his nose, that went down to his stomach, another in his penis, that drained his urinary bladder. After these were all out, the patient’s nasal and anal orifices were packed with cotton. His hands were tied together at the front, so that when the body became rigid it would maintain a posture of dignity. A roll of gauze was wound around his jaw to shut it, and tied into a neat bow over his head. A nurse applied tincture of benzoin to his lips, so that they would stick together and forever seal him in peace.
The body was cleaned and wrapped in a shroud, and a white sheet was placed over it. Later, it was sent to the mortuary. The bed was cleaned ans fresh sheets were laid. THe curtians were pulled open”