Please, talk to someone you love about your death and dying. That conversation, coupled with an advanced directive or living will, is the most foolproof (and free) way to take control over your last hours and days. Choosing whether to be sick or well is not a luxury that we are granted. But one thing that we can do is share our wishes and values with our loved ones before it is too late. You can prepare yourself and your family for when the time comes, no matter what condition you arrive there.
That is why, as a graduate student in bioethics, I encourage you to give mortality some thought. The conversation may not be comfortable or easy, but it is the best way that we have to ensure comfort and ease when it matters most, for ourselves and for those who surround us and care about us.
Bioethicists are regularly enlisted to sort out end-of-life situations that turn complicated. In my experience, these often take place in a hospital setting, with exhausted and grief-ridden family members who are left to grapple with tough questions. Would mom have wanted to be comfortable in her last moments? Would she want to fight until the bitter end? Seeing such family conferences in action has driven me to write this piece.
Regardless of where you currently fall along the spectrum of health, I am willing to bet my life that yours will one day come to an end. Don’t assume that your spouse knows what you want or that your children will understand unspoken words. Talk to them. Be open to conversations. Help your loved ones talk to you. It is never too early to begin having these discussions with one important caveat: that it be an ongoing one.
Let’s face it: entering into such a conversation is challenging. Organizations such as Vital Talk and Five Wishes can be helpful resources for getting the ball rolling. They provide a framework for you to follow for goals of care and advanced directive planning. Your physician can also assist in explaining what questions to consider in filling out an advanced directive form, which serves to record what kind of medical treatments you are willing to undergo in the final stretch of your life.
Keep in mind that these conversations and forms are not binding, because as long as you are able to make decisions you are allowed to change your mind. What is an unimaginable circumstance from your perspective today may shift with time and physical changes, and that is absolutely allowed, even encouraged.
Planning is a great way to ensure that the values you hold dear during your life are maintained during the hours preceding your death. In addition to the broader resources mentioned above, there are people and places within your community that you can turn to for guidance in navigating these sensitive and personal matters.
Many Orthodox Jewish families will feel that it is important to involve a trusted rabbinic figure in these end-of-life discussions. That is a great idea. Keep in mind that your rabbi is not your doctor and your doctor is not your rabbi, but it is often helpful if the two can have a direct conversation. This way, everyone has a clear picture of the situation, expectations can be realistic, and you and your family will have the support that you need.
The system that we have is far from perfect. Even if you put together a comprehensive advanced directive that states your wishes, spoken to your loved ones about how you want to be taken care of, and checked it all with your rabbi, unexpected circumstances can arise. Advanced directives and living wills are often structured with an if-then clause, so that you can indicate what kind of treatments you would and would not want in a given situation. While the concept of deciding if this happens, I want that, or I never want that, even if this happens, seems simple, actually determining whether a given situation qualifies as a particular “if” can get messy. Family members may disagree, and in cases of sudden illness, it can seem too jarring to be true.
Even if you open this line of communication with loved ones and caregivers, these decisions will still loom large. When the time comes, it will be really difficult for those close to you no matter what, but taking these steps may help ease or limit the burden. Understandably, you may not want to sadden your loved ones. Remember that the goal of talking to your family about what you want at the end of your life is kindness, coming from a place of good intentions. The reality may indeed be sad to confront, but not as sad as your family will feel not knowing how to best honor your wishes.
Your loved ones will thank you, when the time comes, for making their job as a healthcare proxy or surrogate decision maker more straightforward. They can accurately respect your wishes with confidence. Strategizing in this way alleviates potential guilt and lightens the burden somewhat, as your loved ones don’t have to wonder what it is that you would have wanted. But how can they know if you don’t tell them?
Talya is a bioethics M.S. degree candidate at the Einstein-Cardozo Bioethics graduate program. She holds a B.A. in philosophy from Yeshiva University and is an incoming student at Albert Einstein College of Medicine.
