The dictionary defines a living will as “a written statement detailing a person’s desires regarding future medical treatment in circumstances in which they are no longer able to express informed consent, especially an advance directive”
The debate on the living will and the connected issues of euthanasia seem to surface at regular intervals only to be debated and then “put to bed” as a topic to be discussed later, as if the logic or the need of the affected families will change to a more acceptable narrative. Passive euthanasia was accepted as a legitimate option to end the lives of those in a permanent vegetative state more than six years ago in India.
The Supreme Court, on 10 October 2017 decided to examine the concept of a living will. The Government says it is yet to examine the pros and cons of the living will because it feels that given India’s cultural, religious and legal systems, this matter of the living will is very complex. Therefore, like so many previous Governments, this one too believes that taking an “ostrich like” approach on this subject is best suited for today’s reality.
While the best legal luminaries will examine and debate the pros and cons and hopefully, arrive at an answer for all those families who do not have the financial means to continue to support their loved ones, let us examine the concept of a living will from an emotional perspective given our cultural and religious realities. Further, the family members have to bear huge medical costs. In addition, they have to pay significant legal costs as well to try and get approval from our already overburdened courts.
When a family member goes into a coma families lose most of their savings and in several cases have to sell off their assets to sustain this life sustaining treatment. They recognize that there is no hope for their loved one but the social stigma of not providing medical support drives them to financial destruction. Would the unwell patient, young or old, want the family members to spend all their savings and sell their assets? There will be thousands of examples of unethical chemists outside Government owned medical colleges who focus on how to acquire the property of these relatives in return for the much needed but futile medication for the patients. In addition to the financial drain, we should also look at the significant time commitment of members of the family as well as emotional impact on the affected family members.
If a set of doctors certify that, a person is unlikely to recover and come out of a coma, should this not be acceptable to release the person from suffering and the family from financial ruin?
While we debate the merits of a living will, we should also look at a living will document as a set of instructions that we would like to leave behind for our loved ones. For the benefit of our legal luminaries and our Government, we can also define our living will as our “Advance Directive for Healthcare and Appointment of Healthcare Representative.” This document comes into force in the event one of us has a terminal or incurable injury or illness or if one of us is permanently unconscious, as certified by two physicians.
We added our Advance Directive for Healthcare and Appointment of Healthcare Representative document to our regular will and sent a copy of the document to our sons for their knowledge and record.
This document authorizes members of our family to become our healthcare representative and outlines the following points:
- Most Indian families do not address the matter of death with their elders. This is considered a taboo. Therefore, when a person passes away, no one knows how the last rites should be performed. How those who are to be cremated, family members are now aware whether the cremation should happen using the traditional wood pyre or the electric crematorium. A living will can define how I wish to be cremated and what I want done with my ashes.
- Organ and eye donation is gaining acceptance in our country. Donation forms are signed but a communication is not made to families. More often than not, relatives of the deceased do not know and therefore do not take timely action. A living will can define these instructions carefully.
- This document can also define the source of funds to meet medical expenses. IT can clearly state that our savings and wealth is used instead of burdening family members.
It is important to take quick decisions on the matter of living wills and embody these conditions into a legislation. While it is easy to delay decision making under the excuse of “misuse and abuse” lawmakers need to look at those families suffering under the crushing financial and emotional burden of a sick relative. The law must focus on managing abuse of the system rather than the system itself. Care should be taken so that undue powers of sanction and approval are not given to bureaucrats or judiciary who can make this into yet another power center to the detriment of the suffering families.
Yes, miracles do happen. A miracle is defined as “an extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency”.
But what is the cost of waiting for such miracles?
The author is the founder Chairman of Guardian Pharmacies and the author of 5 best-selling books, Reboot. Reinvent. Rewire: Managing Retirement in the 21st Century; The Corner Office; An Eye for an Eye; The Buck Stops Here – Learnings of a #Startup Entrepreneur and The Buck Stops Here – My Journey from a Manager to an Entrepreneur.
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