This year approximately 56 million people will die globally, roughly 2/3rds of them in hospitals. More people are dying today of chronic diseases, and the average person can expect to spend the last decade of his life being seriously ill and under constant medical treatment. This is the unfortunate downside of extended life spans: the life expectancy in 1900 was 32 years, today it is 71.80 years. Studies world wide, however, have shown that end of life medical interventions are largely unnecessary and ineffective, as, of those who die in hospitals fully 1/3rd will do so in ICUs and 1/5th will have undergone redundant operations in the last month of their lives. The conventional aggressive interventions at this stage do not help. How have things come to such a sorry pass with all the advances in modern medicine?
Today, end of life care has become synonymous with hospitalisation; in more seriously terminal cases a second alternative is gradually emerging- assisted dying, what we in India erroneously term euthanasia. These are the only two choices available. But it need not be so, for there is a third choice – palliative care. This option means engaging with the terminally ill to provide care ( not just medical interventions) outside hospitals, at home or in a hospice. Studies world wide have established firmly that those who die in hospitals experience more pain, trauma and depression than those who pass away at home. Studies also show that palliative care increases terminal life spans by as much as a third compared to hospital care. Why, then, does medicine continue to dictate the last days of our lives?
The answer lies partially in the way our doctors are trained and conditioned. Their education and the Hippocrates oath conditions them to save lives at all costs, even when they are acutely aware that this is futile. This blind spot is compounded by the fact that, ever since the demise of the institution of the “family doctor” and its substitution by corporate hospitals, doctors have forgotten the fine art of having a conversation with their patients. The “consultation” today consists of peering at the medical records of the patient on the computer and unilateral prescription of medicines or tests. There is no effort made to find out what the patient’s fears are, what he wants. Doctors now talk AT their patients( if they talk at all) rather than TO them. There has been no better exposition of this dilemma and changed paradigm than in the books of two Indian-American doctors: “ Being Mortal” by Atul Gawande and “When Breath Turns to Air” by Paul Kalanithi, both being presented with this quandry in their personal lives ( Kalanithi succumbed to an incurable neurological condition before he could complete his book). Both realise that aggressive medical interventions at the end of life stage, and the lack of any meaningful dialogue, does grave injustice to patients by lowering the quality of their final days, traumatises and pauperises families, that such terminal patients should be allowed to exit life with dignity, surrounded by family and friends, spiritually at peace. Gawande has formulated the “ Serious Illness Conversation Guide”- a compendium of questions/ issues that he feels all doctors should use to have a conversation with end of life patients, to ascertain what they want. This is now being adopted as standard protocol in many hospitals abroad, including Britain’s NHS. The medical fraternity, they plead, should accept that mortality and death are a fact of life, of living itself, that doctors should learn to stop fighting at some stage , to be humble “ambassadors of death” and not just its enemy. As Gawande writes: “ Death is not a failure. It is normal.” The real failure lies in our responses to it- and this has to change.
The second hurdle to a more humane approach to end of life care are the policies adopted by governments and insurers. All of them fund, and reimburse, only treatment procedures in hospitals and nursing homes, and not prevention or palliative care at home. They do not pay for conversations that do not result in medical procedures. But even this rigid attitude is beginning to change. In 2014 the World Health Organisation has recommended that palliative care at homes or hospices be included in health care systems. Medicare in the USA has now started paying for doctors’ conversations with terminally ill patients, treating them as legitimate consultations. Both governments and insurers are also beginning to realise that paying for palliative care or minimal treatment at home may be cheaper than hospitalisation, and that this is perhaps what their patients want.
There is a third dimension to this issue. One reason why the demand to make euthanasia- whether passive or assisted- legitimate is picking up globally is the sheer prospect of almost mandatory hospitalisation, with all its attendant pain, trauma, expense and depression. The end of life patient really has no choice today. Incorporating palliative care as a part of health care systems and medical protocol will not cure him, but it will certainly enable him to spend his final weeks and days in the comfort of his home, his family around him, without aggressive medical interventions that cause more pain than good, and without having to opt for euthanasia. Standardising palliative care and mainstreaming it as legitimate “medical treatment” would offer a third option to the terminally ill and obviate to some extent the desperate need to opt for euthanasia. Society and families could then be spared a difficult moral choice and there would then perhaps be no need for “death clinics” like the one in Belgium where patients come for the sole purpose of being able to legally kill themselves.
The medical establishment in India- both governmental and private- need to initiate a dialogue on the subject so that we could adopt a more humane approach to the inevitability of death. The Insurance Regulator should mandate palliative, end of life care as a permissible item for reimbursement under Health insurance policies. In terminal cases the medical fraternity should not regard death as a challenge but as a release, and should prepare their patient for it. That final battle should not be fought at the cost of the patient. Medicine and mortality should not be implacable foes.