Historic Living Will court cases you should know

Living Will was rarely used prior 1970s worldwide. California was the first state to provide for living wills as a matter of law in 1975, and Texas was the second state to do so in 1976. It's unbelievable that the absence of a Living Will can end up in court, but there are many true stories that you should know to appreciate the importance of making a Living Will. The involvement of family members and relatives in decision-making is sometimes inevitable. The complexity surfaces when there is a disagreement among close family members in the absence of a medical or advance directive. In these historic Living Will court cases, you will learn about the implications of not having medical directives. In some cultures and traditions, family influences are strong in decision-making, and this happens in most countries irrespective of education due to cultural and personal ego. We will present cases that have influenced the decisions in developed countries. The decision-making goes to family members mostly because of a lack of awareness of creating a Living Will. The absence of medical directives leaves the open ground for family members to debate and discuss, putting everyone, including medical practitioners, in dire situations during the decision-making.

In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young children, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem. His book "The Driving Bell and the Butterfly: A Memoir of Life in Death" has been inspirational for many.

The Diving Bell and the Butterfly: A Memoir of Life in Death a book written by Jean-Dominique Bauby, wrote this book one letter at a time while he was in the locked-in state. Born in 1952, he became locked in as a result of stroke on December 8, 1995, and died on March 9, 1997. A therapist set up a letter board with the letters of the alphabet arranged in the order they are most commonly used in the French language. The therapist then pointed to one letter at a time on this chart until Jean-Dominique blinked, indicating the letter he wanted. The book is an extraordinary tale of the desire to survive and live in this condition.

Jessie Koochin from Utah, USA, a 6-year-old boy with a brain tumor, met all of the standard criteria for brain death and was declared brain dead by multiple doctors. His family rejected the entire notion of brain death and persuaded a state judge in Utah to declare that he be kept alive on a mechanical ventilator despite meeting the legal criteria for brain death. This represents a striking example of a judge rejecting established law in an effort to placate social and political pressures. (REF. From Quinlan to Schiavo: medical, ethical, and legal issues in severe brain injury by ROBERT L. FINE, MD)

Lee Kuan Yew, Singapore’s former prime minister, faced serious illnesses in 2015. He had to rely on life support in the intensive care unit. Lee Kuan Yew had stated in his Advance medical directive document that if he loses consciousness and recovery is seen as unlikely, he will refuse to continue living by depending on life support. He preferred to be allowed to die naturally without invasive intervention. Since Kuan Yew’s case in Malaysia, the local press started covering the importance of AMD in healthcare. The Malaysian Consultative Council of Buddhism, Christianity, Hinduism, Sikhism, and Taoism (MCCBHST) also expressed their support for implementing AMD. (REF. The Star. Group calls for guidelines on issuance of directive (Internet) 2014. Dec 8, Retrieved 2020 Mar 12).

Karen Ann Quinlan, from the USA in 1975, was hospitalized in a persistent vegetative state for ten years without any prospect of recovering. Quinlan’s adoptive parents and the doctors had conflicting opinions regarding her care. Her adoptive parents believed that the life-sustaining treatment should be withdrawn to allow their daughter to die peacefully. The doctors, in contrast, opposed the adoptive parents’ opinion, saying that withdrawing life support conflicted with their professional judgment. The court found that Quinlan had the right to choose regarding her care, and this right can be transferred to her adoptive parents as her surrogate decision-maker (REF. Wolf SM, Berlinger N, Jennings B. Forty years of work on end-of-life care—from patients’ rights to systemic reform. N Engl J Med. 2015;372(7):678–682. doi: 10.1056/NEJMms1410321, REF. JUSTIA US Law. In re Quinlan, 70 NJ 10, 355 A2d 647 (NJ 1976))

In the legal documents, the doctors indicated that they thought removing life-sustaining treatment was the equivalent of murder; they felt they had an inherent duty to protect life and specifically to keep Ms. Quinlan alive. Although the judges ruled in favor of the family and the mechanical ventilator was withdrawn, Karen Quinlan turned out not to be dependent on the ventilator. Remember that she was in the vegetative state, and such patients do not require mechanical ventilation in the absence of heart or lung disease. Her parents did not request removal of her “feeding tube,” and thus she lived for 10 years in a nursing home supported by ANH before dying from pneumonia. (REF. From Quinlan to Schiavo: medical, ethical, and legal issues in severe brain injury by ROBERT L. FINE, MD)

Nancy Cruzan, from the USA in 1983, was in a persistent vegetative state due to her severe injuries in a car accident. Although she could breathe independently, she needed help from the feeding tube to receive nutrients and water. Cruzan’s parents thought their daughter should be allowed to ‘go in peace’. In their opinion, the feeding tube only served to delay the passing of Cruzan. According to them, if it were withdrawn, she would be able to go and rest peacefully. However, the medical practitioners refused to withdraw the feeding tube. Thus, Cruzan’s parents went to court. After seven years of a legal trial in 1990, the Supreme Court found that Cruzan did not want to survive by relying continuously on life aid. The feeding tube was withdrawn, and Cruzan died a few days later. (REF. Taub S. Departed, Jan 11, 1983; at peace, Dec 26, 1990. The Virtual Mentor. 2001;3(11):1. REF. Skelton C. Cruzan v. Director, Missouri Department of Health, 497 U.S. 261. 1990) The case of Nancy Cruzan was the first right-to-die case to make it to the US Supreme Court.

Terri Schiavo, a woman from Florida, USA case is one of the historic case regarding medical ethics in the world. Mrs Schiavo had been in a “persistent vegetative state” since 1990. Mrs Schiavo’s was died after withdrawal of feeding tube for nutrition and hydration to allow natural death. (REF. Drager P. Terri Schiavo: Facts. manipulation. .. innuendo. .. bias. .. truth. American Society for Bioethics and the Humanities Annual Meeting, Montreal, PQ, 22–26 October 2003). Upon the death of Mrs Schiavo, it was argued and challenged that her condition deteriorated and came to “end-stage” and “terminal” when hydration and nutrition were removed. She would have survived if kept her with feeding Tube for nutrition and hydration and also, her persistent vegetation state was questionable. She did not leave the Living Will and there were disagreement between her husband and parents. The parents challenged her husband in court for decades after her death. She left no advance directive and in its absence her husband says one thing and her parents another.