Advances in medical technology and healthcare have created a plethora of choices that need to be made as people approach the end of life. At times, these choices can no longer be made by the patients themselves, leaving two options for surrogate decision-making.
One standard asserts that someone else, typically a loved one, should make “substitute judgment” to determine what the patient would want. A second model asserts that decisions should follow a “best interest standard” to promote the patient’s welfare and make the decision that “most reasonable people” can make.
Each model has advantages and disadvantages, but both operate under the hope that the surrogate decision-maker will accurately predict the desires of the patient.
Matters can become complicated, however. A few months ago, for example, a young British baby, Alta Fixsler, was removed from life support despite the protests of her ultra-Orthodox parents. Without getting into the merits of each side, the British authorities clearly were acting against the wishes of the family even as they asserted that they were acting in her best interests.
In general, within many Western countries, there is a growing concern that the default choice of action – i.e., what the government decides is in the “best interest” – will not coincide with Jewish values. For this reason, it’s important for Jews to engage in political discourse and advocate for Jewish ethics while protecting interests of Jewish citizens.
On other occasions, family members, acting as surrogates, may disagree about the wishes of the patient. This most famously occurred with Terri Schiavo, whose parents and husband spatted if she’d want continued treatment while in an irreversible persistent vegetative state. If a person wisely chooses to put into writing their desires for end-of-life decision-making, there is a much greater chance for them to be implemented.
In general, it’s good for adults to make this decision at any age. For example, following the lead of Israel’s Chief Rabbinate, many religious Jews, including me, have wisely signed organ donor cards. Indeed, Israel’s Terminally Ill Law allows anyone over 17 to provide preliminary medical directives for all end-of-life decisions. Yet these decisions should particularly be made (and regularly updated) by those over 50.
People sign a “last will and testament” to take care of their financial matters. So, too, should they clearly express their desires regarding end-of-life treatment. The approach should follow the dictum of the Sages, “If not now, when?” For as the midrash teaches, the Angel of Death does not wait for us to settle our affairs before making his fateful visit.
Some people superstitiously express concern that discussing end-of-life matters will bring upon them an “evil eye.” Similarly, some historically worried that purchasing life insurance might reflect a lack of faith in God. Such sentiments are not supported by classical Jewish sources.
Traditional Jewish law permits and even encourages people to purchase in advance burial plots, tombstones, and burial shrouds. In fact, the famed Rabbi Joseph Karo even allowed people to dig their own graves, provided that they were not in such a mental state that thinking about death could harm them physically or emotionally (Beit Yosef Yoreh Deah 339). These traditions highlight that advanced planning is the most prudent way to receive one’s desired wishes while also avoiding unnecessary family strife.
THE MOST basic decision one must make is to designate a healthcare proxy who will make decisions in case one cannot choose for themselves. Such a declaration, however, can put the proxy in a difficult place if the designation is not accompanied by more specific wishes. Most countries allow for people to sign a formal, legal document that allows them to make several critical decisions. These include orders such as Do Not Resuscitate (DNR) through CPR or Do Not Intubate (DNI) through artificial respiration.
In general, such a declaration might be mandated by Jewish law under the following conditions: 1) the patient is terminally ill with no chance of a cure, and intervention serving only to minimally prolong life; 2) the patient is suffering physically or emotionally; 3) the patient does not want to undergo resuscitation, and/or the resuscitation process might inflict greater pain or discomfort. Each situation, however, has its unique nuances. All decisions should be addressed on a case-by-case basis with proper rabbinic and medical consultation.
Partly for this reason, some decisors recommend not filling out a formal legal directive. They additionally fear that a DNR might be treated as a generic DNT (“Do Not Treat), so to speak. Such a recommendation is dependent on the medical and legal culture in a person’s country of residence as well as the patient’s condition.
Either way, it remains an imperative for people to discuss their specific wishes with their loved ones and, in particular, their healthcare proxy. Because of the sensitivity of these decisions and dependency on a person’s health situation, the directives (whether formal or informal) should be reviewed every few years.
According to one rabbinic midrash, the biblical forefather Jacob prayed for the opportunity to deliver his final wishes to his family. In his case, these included providing both blessings and rebuke to his sons, alongside expressing his desire to be buried in the Land of Israel. We need to follow the example that he set while updating these directives for our own technological era. ■
The author is co-dean of the Tikvah Online Academy and a postdoctoral fellow at Bar-Ilan University Law School. He is the author of the award-winning A Guide to the Complex: Contemporary Halakhic Debates (Maggid).