Too Young to Think About Dying?

When you are young, you tend to think you’re invincible. Death is what happens to your grandparents or your parents — but certainly not to you. And if or when it does occur, it won’t be for a really long time. Right?

Certainly, that’s the hope and, for many, the likely outcome. But it’s also true that young people die for all sorts of reasons: fatal illnesses, tragic accidents, suicides, overdoses and, yes, the corona virus.

While Covid-19 hits older people much harder, the disease kills younger people too. An analysis by the Washington Post found that at least 759 people under the age of 50 in the U.S. had died as of mid-April. At least 413 deaths occurred among people in their 40s, 190 among those in their 30s, and 45 among those in their 20s.

So, Gen-Xers, Millennials and Post-Millennials, you are not immune to the deadly effects of Covid-19, just as you are not invulnerable to other deadly diseases, accidents, shootings, overdoses and additional causes of death. You can hope it doesn’t happen, but you can also prepare in case it does.

It is not easy to think about the death of someone you love, let alone your own death. Many Baby Boomers put advance directives in place to lay out their wishes for treatment that they do or do not want to receive at or near the end of life; younger people should think about doing it too. Having a ventilator or feeding tube, only to be left to linger indefinitely, unresponsive and unaware with no likelihood of recovery, may not be your end-of-life preference.

Famous Cases

Some may remember the famous case of Terry Schiavo, the young Florida woman who suffered irreversible brain damage following cardiac arrest in 1990. All attempts at treatment failed, and her husband finally decided that her feeding tube should be removed. He believed that his wife would not want to be kept alive in a persistent vegetative state without any prospect of recovery. But her parents disagreed, and a lengthy, acrimonious legal battle followed involving the media, state and federal politicians and even the President of the United States. It took seven more years for the feeding tube to finally be removed.

It probably was not what Schiavo would have wanted, based on her husband’s knowledge of her wishes, but there was no legal basis to support that argument. The case was not the first or last to test a young person’s right to die. In the 1970s, Karen Ann Quinlan’s parents wanted their 21-year-old, comatose daughter taken off life support after she fell into a persistent vegetative state after taking high doses of Valium and alcohol while on a crash diet. And in the 1990’s the case of Nancy Beth Cruzan, a 25-year-old woman who suffered severe injuries following a car crash, established the argument for advance health directives.

More recently, many may be familiar with Brittany Maynard, a young woman with terminal brain cancer who successfully made a compelling case for her right to die on her own terms.

The cases are all heartbreaking for the loss of young life. But ones that involve lengthy, bitter battles can tear families apart and add further anguish to already agonizing situations.

Advance Directives

Nonetheless, a lack of written, legal documentation about personal wishes can lead to just that. So advance directives aren’t just for people in their 50s, 60s and beyond. They are for any adult who wants to have their own say about end-of-life decisions. In fact, some younger people with terminal illnesses have them too.

These documents include specific wishes for what patients want in end-of-life decision making. Do you want a feeding tube, hydration or ventilator if there is no hope for independent, quality of life? Do you want to be kept alive in an indefinite and persistent, vegetative state? Some people have Do Not Resuscitate Orders which mean that if their heart stops or they can’t breathe, and there is no hope of reasonable recovery, medical staff will not perform cardiopulmonary resuscitation and will let them die naturally. Or do you want your life preserved no matter what? That’s your right too, and you may want those wishes in writing as well.

Medical Power of Attorney

In addition to an advance directive, many people also designate someone they trust to serve as their proxy or agent to make health care decisions if they are unable to speak for themselves. This is often called a durable medical power of attorney or health care surrogate. Whatever term is used, the document helps ensure your wishes are honored. But you must have meaningful conversation in advance with the person who will be acting for you to be certain they understand what you do and do want and under what circumstances.

There are a number of free online resources for designating a medical power of attorney. One is LegalZoom, but there are plenty of others. You can do an online search; just make sure you find one specific to your state as legal requirements can vary.

Resources to Help You

These are deeply personal and often difficult questions. You don’t have to tackle them alone. Your physician, nurse practitioner or family members may be able to help you. There are also a number of organizations that provide resources to assist with decision making including the American Academy of Family Physicians which offers a medical perspective on end-of-life planning, the Conversation Project which has a conversation tool kit, Compassion and Choices which provides free counseling and resources, and Everplans which has state-by-state planning guides.

There are other groups and resources that can be found in an online search. Make sure you are accessing reputable organizations and not providing personal details on insecure sites or paying for information that is readily available free of charge.

Bottom Line

Franca Posner, a grief therapist in the Washington, DC, area says that, “Families that have had these discussions are able to grieve with the knowledge that they honored their loved one’s end-of-life wishes. Grieving a loss is difficult enough,” she says, “without the added burden of making a decision and not knowing what a loved one would have wanted.”

The bottom line is this: It is your life. You have the right to make your own decisions about how you want to live or die, especially under dire circumstances. You don’t want those decisions made for you without your involvement. You want to live on your own terms, and you have the right to die on your own terms too.

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Bonnie Friedman is passionate about the need for patient advocacy. Her book, Hospital Warrior: How to Get the Best Care for Your Loved One, provides hands-on advice and tips for navigating the hospital environment. Her podcast, Advocates & Experts, offers conversations tailored to the interests of advocates. She also blogs and speaks regularly on healthcare and advocacy issues.

You can follow her on Twitter, Facebook and Instagram or check out her website: Hospital Warrior.