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Why You Should Talk About End-of-Life Care

Why You Should Talk About End-of-Life Care

It may be uncomfortable to think about your final days but it’s never too early to start.

Whether you’re the picture of health or battling a chronic disease, welcoming your first baby or watching your grandchildren graduate from college, making end-of-life plans is usually last on the list of topics anyone wants to talk about. In fact, only one in three U.S. adults has such plans in place, according to a July 2017 review of 150 studies involving more than 795,00 people published in HealthAffairs.

But creating and sharing your vision for end-of-life care—even years before you’ll ever need to implement it—should be on everyone’s to-do list, advises Lara Raquel Clary-Lantis, DO, a hospice and palliative care specialist at Saint Joseph Mercy Health System in Ypsilanti, Michigan.

“No one wants to talk about dying, but we have no problem discussing life insurance when we’re young,” Dr. Clary-Lantis points out. “Creating an advance directive is like having insurance that when you reach the last stages of your life, your healthcare providers will do things for you that you do want and won’t do things to you that you don’t want.” She points out that it’s never too early to start having these discussions. “It’s better to talk about when you’re not under the stress of an illness, accident or new diagnosis,” she says.

What end-of-life plans include
End-of-life plans can be as simple or as detailed as you wish, and they should be revisited every few years, Clary-Lantis says. She recommends speaking with a lawyer or simply searching online. Several websites, including PrepareForYourCare.org, have videos and articles that walk you through the process of filling out the papers. Many states also have their own advance directive forms. Your local Area Agency on Aging can help you find the correct documents.

At the very least, you should name the person who you trust to make medical decisions for you in the event that you become incapacitated—even while you’re still young and healthy. You can also list specific or general instructions about whether or not you’d wish to receive life-sustaining treatments (including intubation and dialysis), if you’d like to be an organ donor and where you would prefer to spend your final moments—at home or in the hospital. “It’s not just about dying, it’s about making sure you are living the life you want in your last days,” Clary-Lantis notes.

Printing out end-of-life documents and initiating discussions about these topics may be uncomfortable at first, but having these conversations and initiating the process could be one of the greatest gifts that you give your loved ones, and yourself. Here’s why:

It relieves stress, conflict, and guilt
If your family tends to bicker about everything from who should host Thanksgiving to who should be the next James Bond, imagine what would happen if they were faced with making a medical decision for you. Research suggests that many relatives of a critically ill patient experience moderate or high levels of stress when they do not have an end-of-life plan to follow, and that having discussions about end-of-life plans makes the bereavement process easier for loved ones since they feel less guilt, anxiety, and regret over their decisions.

“If your loved ones know exactly what you want, it helps alleviates stress and empowers them to do what you would want,” Clary-Lantis says.

You’ll experience fewer unwanted hospitalizations and treatments 
“Healthcare providers will sometimes offer everything available to keep the patient alive—even if we don’t think it will help,” Clary-Lantis says. “And in some cases, that could mean additional unwanted side effects and suffering.” One example of this is CPR, she explains.

Though resuscitation with chest thrusts and electrical shocks can be life-saving for someone who has stopped breathing or gone into cardiac arrest, it can also cause serious pain and injury to an older person. If you specify in your advanced care directive that you don’t want life-extending treatments or to extend your hospitalization—and that you would prefer to pass away at home—your family and healthcare team will know when to say enough is enough.

Research also suggests that having these discussions leads to less aggressive medical care at the end of life and earlier referrals to hospice, where the focus is on helping people live out their final days as comfortably and peacefully as possible.

It allows you to have some control over your final hours
“We plan how we want childbirth to go, and we plan for our weddings, so why shouldn’t you plan for how you want your final days to go?” Clary-Lantis says. Your end-of-life plan shouldn’t just list medical decisions; it can also include details like where you would like to stay, which religious or spiritual traditions you’d like to follow (or not follow), and who you would like to speak at your memorial.

You should also consider what your family should do if you become one of the millions of Americans who are living with Alzheimer’s disease or other forms of dementia, or if you develop another chronic, debilitating condition that requires full-time care. An end-of-life plan can also let your loved ones and healthcare team know if you would prefer to live at home with a relative, hire an aide, or move to an assisted living facility.

It’s okay to change your mind
Keep in mind, once you sign your advanced care directive, it is not set in stone. Think of it as a living document, Clary-Lantis explains. When you’re younger and healthier, you may very well wish to have your healthcare team try for any possible miracle to save your life—especially if you have children. “But as you get older, your feelings about living and dying may change, and it’s easier to discuss it if you’ve already begun that conversation.”

Medically reviewed in August 2019.

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