Maria had lived a good life. The 81-year-old Californian raised a family, enjoyed a happy 50-year marriage and ran a secondary school. But now she was suffering from crippling arthritis and congestive heart failure. She signed legal documents declining resuscitation efforts and extraordinary life-sustaining measures.
A year later, Maria was sleeping in a hospital bed—she was receiving treatment for a stomach problem—when her heart and breathing stopped. It was the peaceful death she had hoped for…until the hospital staff shocked her heart back to life and put her on a mechanical ventilator, despite her wishes. Unable to speak, Maria expressed her desire to be taken off the machine through a series of yes/no hand squeezes with her son, but the hospital persisted. Maria eventually died after more than a week of suffering. The hospital staff ignored Maria’s legal documents because those documents began, “If I am terminally ill…” and the doctors said she had a slim chance of survival. They ignored her hand-squeeze instructions because they thought Maria was no longer competent to make her own decisions.
Most people have thoughts about how and where they would prefer their lives to end. And more than one-third of American adults have proactively formalized their end-of-life preferences in legal documents known as “advance directives.” Yet, like Marie, many of these people will unnecessarily endure deaths very different from what they desired.
Here’s how to increase the odds that your priorities will be honored when the end approaches…
The Limitations of Advance Directives
Advance directives typically include a living will, which lists health-care treatments you would and would not want and a durable medical power of attorney, also known as a health-care proxy, which empowers a trusted loved one to make medical decisions on your behalf.
These documents are supposed to let people dictate the medical treatments they will and will not receive when they cannot speak for themselves. But the documents typically take effect in only two very specific situations—when someone is terminally ill…and/or when he/she is permanently unconscious. Doctors often are unwilling to conclude that either of these conditions applies, holding out hope that there’s still a sliver of a chance that the patient could pull through and, in turn, discouraging families from enacting the patient’s wishes, thereby negating the advance directive. As with Maria, occasionally doctors ignore advance directives even when it’s clear to others that these documents should apply.
Advance directives also can go unheeded because either no one knows about them or they are inaccessible. Warning: A widely used DIY living will called “Five Wishes” includes the phrase, “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life.” That can be interpreted as contradicting attempts elsewhere in the living will to decline life-extending treatments under certain circumstances. Be sure all instructions are consistent and clear. Working with a knowledgeable attorney is the safest way to do that…or use Compassion & Choice’s free End-of-Life Decisions Guide & Toolkit. You also can fill out an advance directive form at PrepareForYourCare.org.
Improve the Odds You’ll Get the End of Life You Want
In addition to having an advance directive, you also need to…
Be sure your documents are accessible. File copies of advance directives with your local hospitals. Give copies to family members. Ask them to store copies on their mobile phones for easy access in an emergency. Make sure your preferences in these documents are clear.
Tell your loved ones what you want—repeatedly. Initiate conversations with your close relatives about your end-of-life priorities. Do not be deterred by relatives who insist that you still have many years left…or that it’s not an appropriate moment for such a macabre conversation—their discomfort with death doesn’t make these discussions any less important.
Do this on multiple occasions to ensure your words are remembered. Include all of your descendants, plus your siblings, your spouse and any other close relatives in these conversations—ideally while everyone is together—to reduce the odds that one of your relatives later misrepresents your end-of-life priorities. Be clear with your family who your designated health-care proxy is, as well as his back-up, so that there is no confusion or argument if he is called on for decisions. Your family’s knowledge and unanimous support of your end-of-life wishes increase the odds that all will honor your advance directives.
Warning: Don’t exclude adult children who live far away from these conversations. Far-off offspring are likely to insist that health-care providers take unwanted life-prolonging measures. These descendants are especially prone to want to extend their parents’ lives because they feel guilty about not being around at the end.
Gauge your doctor’s willingness to respect your decisions. Share your end-of-life priorities with your doctor, then ask for his feelings on the matter. The doctor should voice respect for your priorities. If he does, ask him to add your advance directives to your medical file. If he dismisses the topic or expounds on his own end-of-life philosophy, it might be time to look for a different doctor. Example: It’s a troubling sign if your doctor dismisses the topic with, “We’ll deal with that when the time comes” or “Let’s hope that never happens.”
Film yourself explaining your end-of-life preferences. Look directly into a digital video camera, such as the one in a smartphone, and calmly and clearly explain what’s most important to you in your life—being capable of thinking clearly enough to have coherent conversations with my friends…living in my own home…enjoying meals with my family…reading and understanding the newspaper or works of literature…being fit and mobile enough to enjoy the outdoors…being present enough to watch my loved ones enjoy their lives. Note whatever it is that you cannot live without and what you hope will be done if you can no longer do these things. Let several trusted loved ones know how to gain access to this video in your records when the time comes…and e-mail copies of it to those loved ones, including your health-care proxy and your estate attorney. This video won’t carry the legal weight of your advance directive, but it will have a very real emotional weight—it’s very difficult to ignore someone’s deeply held desires after looking into his eyes while he explains them. Instruct family members to play the video for any family members, friends or medical professionals who attempt to contradict your wishes.
Dig for the truth about your actual medical situation. Often people don’t get the end of life they want because they agree to medical treatments that contradict their own priorities. Why would they do this? Because of poor communication, patients frequently don’t fully understand their medical conditions or the treatments they are agreeing to. Example: A doctor tells his patient that her condition is “treatable.” The patient agrees to the treatment he recommends because, like many patients, she thinks “treatable” means “curable.” What the doctor fails to explain is that treatable doesn’t mean curable—it only means that there is a course of treatment that can be applied.
If you have health issues serious enough that end-of-life decision-making could be a factor, ask your doctor the following questions when he recommends a treatment or refers to your condition as treatable…
“What’s the likelihood that this treatment will cure me?”
“What are the odds that it will prolong my life?”
“How long is it likely to prolong my life?”
“What will my life be like during that remaining time? What will I be able to do or not do?”
“What’s the reasonable goal of this treatment?”
Ask these questions even if you are repeating a course of treatment you have gone through in the past—the answers might be different this time. Example: When cancer returns after a period of remission, an oncologist might prescribe a new round of chemotherapy. But often chemo is less likely to produce a cure—or even an extended stretch of good health—when cancer returns.
Sign up for hospice care if your condition is terminal. Hospice care helps make the patient as comfortable as possible during end of life with pain-relief and other palliative treatments. It often can be provided in the patient’s home, and it is well-covered by Medicare Part A as long as the patient’s life expectancy is six months or less. Private insurance generally covers hospice, too. Find local hospice providers in your area at Medicare.gov/HospiceCompare.