You may spend hours with your family debating where to have dinner on Friday night or which TV series to livestream. But if you’re like the majority of Americans, you may have never discussed what kind care you would prefer to receive should you become critically ill, and how far you would like your healthcare team to go in order to keep you alive.
Only about one-third of Americans have an advance directive, according to a July 2017 review of 150 studies published in HealthAffairs. The analysis, which included more than 795,000 people, found the numbers were only slightly higher for those with chronic illnesses—38 percent had the document, compared with 32 percent of healthy adults.
Why end-of-life plans may be avoided
Talking about illness and death may be uncomfortable, but there are a few other reasons why some people may avoid putting their end-of-life plans on paper, according to Lara Raquel Clary-Lantis, DO, a hospice and palliative care specialist at Saint Joseph Mercy Health System in Ypsilanti, Michigan. They may falsely assume that if they have a living will stating they are a DNAR (do not attempt resuscitation), they won’t get any care, Dr. Clary-Lantis explains.
“Your medical team will do everything they can that they think will help, including treating your illness and trying to prevent death. If you request a DNAR, it simply means that if despite all these measures your heart stops, they will not perform CPR to try and restart your heart, allowing a natural, and often peaceful, death,” she says.
Cost doesn’t have to be an issue
Another reason people may delay making end-of life plans is that they are wary of legal fees, Clary-Lantis adds. “A lot of people think you have to hire an attorney and it costs a lot of money, but you can do it yourself,” she says. Also, keep in mind that for people older than 65, Medicare now pays healthcare providers to discuss end-of-life plans. If you qualify, you could always start the process by making an appointment with your doctor.
Consult with a lawyer or search online to print free documents specific to your state, Clary-Lantis recommends. Several websites, including PrepareForYourCare.org, have videos and articles that walk you through the process of filling them out, including access to forms for various states as many also have their own advance directive forms. Your local Area Agency on Aging can help you find the correct forms.
“Everyone older than 18 should have at least a basic plan,” Clary-Lantis advises. Here is what yours should include:
Durable power of attorney for healthcare: One of your most important decisions is choosing the person who should speak for you when you can’t speak for yourself. This document names your chosen proxy, who may be asked to make critical decisions such as agreeing to or refusing life-support measures. Your proxy may also have to choose whether to keep you in the hospital or begin hospice care, allow doctors to perform an autopsy, or donate your organs. “You should be careful to choose someone who will honor your choices and what you want for yourself—not what they want for you,” Clary-Lantis points out.
When choosing who will be your healthcare surrogate, ask yourself these questions:
- Does this person share my values about quality-of-life and medical care?
- Can I have honest conversations with this person about my preferences?
- Can I trust him or her to make decisions based on these conversations?
- Will this person be confident enough to speak up to doctors and other medical professionals and ask important questions?
Whether you choose your child, sibling, spouse, or someone else, make sure that person feels comfortable taking on this important responsibility. You should also consider choosing a backup in case your first choice is not available.
A living will: As generally or specifically as you wish, a living will outlines the life-saving measures you would like your medical team to take if you become incapacitated. This document will serve as a guide for your healthcare proxy. Some of the decisions may include: Under what circumstances do you want the medical team to use CPR, intubation, or IV nutrition to keep you alive?
Whether or not you have a living will, you may also be asked by your doctor to complete a Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) before you undergo surgery or other medical care, so your doctor has the most updated version of your wishes in hand.
Keep in mind, your ideas about life-saving measures may change as you get older and your health status changes, Clary-Lantis notes. End-of-life plans are a reflection of you—what is important to you to make your life worth living.
“What does a good day look like for you?” she says. “Is it getting out of bed, being in your own home?” These are the things you need to consider when envisioning your final days. If your preferences do change, make sure your doctor, proxy, and loved ones are aware.
Decisions about organ donation: When you die, do you want any healthy organs—your heart, lungs, pancreas, kidneys, corneas, liver, or skin—to be donated to a patient who needs them, or would you prefer to be buried with all of your body parts intact?
This is a very personal decision, and you should be sure that you have your wishes in writing. In many states, you can check a box on your driver’s license if you wish to be an organ donor, but you should also let your healthcare proxy know about your preference and include instructions on organ donation in your advanced directive.
Religious, spiritual, and ritual plans: When you are in critical care, would you want a priest to perform last rites? It’s as important to clarify in writing what you don’t want as well as what you do want, Clary-Lantis stresses.
“Some healthcare providers may assume you will want certain rituals—even if you don’t,” she says. Your end-of-life plans can also include whether you would like to be buried or cremated, where you want to be buried and according to which religious tradition, and plans for a funeral or memorial.
Once you complete and sign your advance care directive, make sure your family members and physician have copies, and print one out for the medical care team any time you start a new treatment or have surgery.
Clary-Lantis adds that your medical plans should be revisited any time one of the five D’s happens: a decade has passed, you have gone through a divorce, you’ve experienced the death of a loved one or if something happens to your healthcare proxy, you have a new medical diagnosis, or there has been a decline in your health.
