When Joan Graham's father had his first stroke at age 79 and began having trouble driving, ultimately losing his license, and her 76-year-old mother started having memory problems and was reluctant to drive, Graham and her brothers found their family roles shifting from child to parent. Graham began traveling from her home in Orange County, CA, to her parents' in Los Angeles one or two days a week to help with transportation, but her father refused to give up the car keys. The siblings eventually resorted to disabling the vehicle in 2000, which made their father furious.

Within another two years, their father had had another stroke and their mother had been diagnosed with Alzheimer's disease. But despite these setbacks, the siblings had no idea what their parents wanted to do about their living situation, who would manage their medical care when they were no longer able to, and whether they had any end-of-life wishes—partly, Graham says, because their parents were adamant about remaining independent.

"We really should have initiated a discussion after my father had his first stroke, but he was determined to get back to his life and had a fairly quick and complete recovery. And up to that point, both he and my mom had led full, active lives. They had always enjoyed good physical and mental health. We were still in denial."

That denial ended with her mother's Alzheimer's disease diagnosis, but the family started slowly, focusing first on their parents' living situation. "We told them the most important thing for us was to make this season of life as pleasurable as possible and adhere to their wishes about how they wanted to be treated," recalls Graham, now 57. "Slowly, my parents became less resistant to our intervention and more willing to discuss their end-of-life needs."

Unlike the Grahams, however, many families never actually discuss these topics, says Harriet Warshaw, executive director of The Conversation Project, a nonprofit organization devoted to helping people talk with family members about end-of-life details. "It's important for all of us to have these conversations early and often," she says. "Life is fragile, and you never know what will happen when you get up in the morning."

Reluctant to Talk

While 90 percent of Americans say that talking to their parents or relatives about end-of-life logistics is important, only 27 percent have actually done it, according to a survey from The Conversation Project. Meanwhile, a 2011 survey of 1,669 Californians aged 18 and older by the California HealthCare Foundation found that 60 percent did not want their family saddled with tough decisions at the end of life, but more than half—56 percent—had not talked to their family about what they actually wanted.

Even fewer Americans put their wishes in writing as part of a legal or medical document, such as a living will, which specifies what medical treatments you do or don't want in the event that you become permanently unconscious, terminally ill, or otherwise incapable of making decisions for yourself, says Russell Rososky, a legal assistant with Legacy Counsellors, PC, in Easthampton, MA, a law firm specializing in estate planning. (To learn more, see "Terms You Should Know" below.)

A survey of nearly 8,000 adults aged 18 and older published in 2014 in the American Journal of Preventive Medicine found that just one in four had a living will. And a study of patients with Alzheimer's disease conducted by researchers at the University of Pittsburgh and published in the American Journal of Geriatric Psychiatry in 2011 found that only 15 percent had completed a living will and just 39 percent had granted someone health care power of attorney.

Yet a 2014 study in the Journal of the American Geriatrics Society by researchers from the University of California, San Francisco found that having those documents in place improves the last years of life, reduces the risk of dying in a hospital, and increases the likelihood of hospice care.

Dialogue Obstacles

If multiple surveys reveal that the majority of Americans believe end-of-life conversations are important, then why aren't more people having these conversations and putting plans in place?

The reasons are many, says Warshaw. "Parents don't want to upset their adult children, adult children don't want their parents to think they want them to die, and for many people there is fear that if you talk about death with a loved one, it will hasten death."

Others just keep putting it off, says Farrah N. Daly, MD, a palliative care specialist in Northern Virginia and a member of the American Academy of Neurology (AAN). She gently encourages her patients to broach the topic. "I tell them that we talk about other potential emergencies, like how to handle a weather emergency or a fire. Just having the discussion doesn't mean a fire will happen or that you're hoping it comes; it just means that you'll be more prepared for what might happen, and you and your family will be better equipped to handle it if it does happen."

Know Your Family Member's Wishes

Families who avoid talking about end-of-life details may misrepresent their relative's wishes during a time of crisis, says Alan Carver, MD, an attending neurologist who specializes in palliative care and pain management for patients with neurologic cancers at Memorial Sloan Kettering Cancer Center in New York, a member of the AAN, and chair of the AAN Pain and Palliative Care Section.

"I can't tell you how many times I've heard a doctor say, 'I didn't want to give the chemotherapy or that drug, but the daughter talked me into it,'" he says. He routinely reminds physicians-in-training that patients and families seek their expertise not only because of the therapies they can provide, but because they can judge which interventions may help and which may cause more harm than good.

For that reason, Dr. Carver believes physicians should help guide end-of-life conversations and ensure they occur. The talk doesn't have to be about death and dying, he says. "In palliative care circles, we say it's not about dying, but about how you want to live until you die." Once you've had the conversation, you can speak up for a family member when she is unable to do so herself. "When the time comes and the disease advances to the point that she can no longer advocate for herself, you can stand in her place and say, 'I know what my mother's wishes are,'" says Dr. Carver.

Make Sure Everyone Knows What You Want

A conversation about how you want to live out your later years or the time you have left may start with your spouse or partner, but it should also include your children and your doctor, says Warshaw. "You want multiple people to know and have a picture of what is important to you and what your values are." She calls such discussions a "gift" to your family. "You're relieving them of the burden of indecision. You never want your children or partner or other family members wondering if they honored your wishes or questioning if they made the right decision."

That was so essential to Graham and her siblings that they didn't just have one conversation with their parents, but several over the years. "One of the most important things was allowing our parents to talk through scenarios and understand how they differed in their desires and their sense of what they would want in that last season," she says. Making the conversation a part of everyday discussions "normalized" the topic and created a safe environment for her and her brothers and parents to express their fears, she adds.

Graham took copious notes during these conversations, even recording parts, and found herself returning to them over and over again. "We wanted to be sure that as a family we could go back to what their desires were, not our desires. We agreed as siblings that the final decision would be to adhere as closely as possible to what our parents requested." As a result of these conversations, Graham's parents completed a living will and granted Graham health care power of attorney—and they kept talking.

Graham's father, who knew his time was limited, told her, "If I don't live another day, I will have lived a full life, and I don't want any intervention." He died in the hospital just before his 90th birthday after a bad fall that resulted in internal bleeding. Although doctors recommended surgery, the family refused, knowing their father wouldn't have wanted it.

They did the same for their mother when, 13 years after her diagnosis, she stopped eating and the doctor recommended a feeding tube. "We complied with what our mother requested, and that meant no feeding tube. Having made that decision earlier was immensely helpful," Graham says. She died at age 91 in the hospital, one week after entering hospice.

Look for Examples to Start the Conversation

The death of a family friend may present an opportunity to discuss what you want for your own death, or what elderly parents or ill family members might want for theirs. When Richard (Dick) Vandermark's sister was diagnosed with amyotrophic lateral sclerosis (ALS) and moved in with him and his partner, Tina Lee, the couple began discussing their own wishes. "At night after we put her to bed, Dick would say, 'I'm never going to get a stomach tube if I get like that,'" recalls Lee, 53, of Tuscon, AZ.

Sadly, a year after his sister died, Vandermark was diagnosed with bulbar ALS, a form of the disease that destroys the part of the brain that controls the facial, neck, and head muscles. Once diagnosed, Vandermark insisted that he and Lee, who had been together for 23 years, marry so that Lee would be protected financially. Their wedding gift to each other was putting their medical house in order, including granting health care powers of attorney and creating living wills.

Lee then knew what her husband wanted. A former Vietnam veteran who struggled with post-traumatic stress disorder, "Dick knew the value of life and how it should be lived. That made things clearer when it came to how he wanted to die." Although Vandermark was angry that he was going to die, "having some control over how he died helped," Lee says.

Vandermark clearly stated that he wanted no ventilator or tracheotomy to help him breathe. Once the time came, he told Lee, he wanted to stop all food and water—a voluntary way of ending his life.

Which is exactly what he did.

"Dick made a choice to die with autonomy and integrity," Lee says. That allowed him to be at home surrounded by friends and family. "He died with the window open and the hummingbirds just outside," she says.

Enlist Your Physician

Paula Houston's father prepared a living will when he was 65. When he was diagnosed with Parkinson's disease in the spring of 2013, at age 86, she suggested he update his legal documents. "My dad had always been a planner," says Houston, 53, who lives in Williamsburg, VA. "It was difficult in the sense that it was sad to think about my dad's death, but I appreciate the fact that he did it."

Similar to his earlier document, the updated one stated that he did not want nutrition or hydration, including a feeding tube, at the end; no surgery or other invasive procedures; no cardiopulmonary resuscitation, including chest compressions or electroshock resuscitation; and no antibiotics, dialysis, or intubation (inserting a tube down the throat to allow a mechanical ventilator or respirator to breathe for the patient). Nothing, says Houston, "intended merely to keep him alive."

His doctor, however, never discussed these wishes with him. Instead, the doctor just handed him a packet with information about health care directives.

That's not unusual. The same 2011 survey by the California HealthCare Foundation found that while more than 80 percent of Californians would like to talk to their doctors about their end-of-life wishes, just 7 percent had a doctor bring up the topic.

"Physicians can be just as uncomfortable talking about the end of life as family members," says Dr. Daly. Yet studies show that people are more likely to complete end-of-life documents—and to have better quality of life in their last months—if their doctors discuss these issues with them. Doctors say they don't have enough time during appointments to discuss the topic, and they worry that such discussions will make patients feel hopeless.

"Sometimes it is the physician who has difficulty making the transition to a more supportive role," says Dr. Carver. "This is something we're addressing and trying to make obsolete." Indeed, more medical schools and residency programs are adding training about end-of-life concerns, including palliative care and hospice, and the AAN offers workshops on the topic at its Annual Meetings. And just recently Medicare announced that it would reimburse doctors for counseling their patients about end-of-life care, starting January 1, 2016.

Until then, Dr. Carver says, patients and their families need to be proactive and bring up the subject. "These conversations with your doctors are not only a value, they are your right. You have a right to have a doctor who is competent around end-of-life issues," he says.

Ask About Documents

Even the most airtight living will does not guarantee the death people may want, says Ferdinando L. Mirarchi, DO, medical director of the department of emergency medicine at the University of Pittsburgh Medical Center in Erie, PA, and the author of Understanding Your Living Will (Addicus Books 2006). In a series of studies he conducted, Dr. Mirarchi found that emergency medical technicians and physicians are often confused about the difference between a living will, a do not resuscitate (DNR) directive, and Physician Orders for Life-Sustaining Treatment, or POLST.

That's why it's so important that family members, particularly the person who has health care power of attorney, know the wishes of their relative and advocate on his or her behalf, especially if the illness is terminal.

If, for example, your mother is near the end of her life but wants to live long enough to see a special event—the wedding or birth of a relative, for instance—be sure to elicit that information and let all other family members and providers know about it, says Dr. Mirarchi. "Often, that messaging doesn't come out in these documents," he says. Even if your mother is dying, he adds, there may be treatments that prolong her life enough to allow her to meet her personal goals.

Dr. Mirarchi recommends developing a living will with an attorney rather than simply completing a checklist. But what's most important, Dr. Mirarchi says, is that patients not fill out a form someone hands them at the hospital—something that is happening more and more. He also warns family members not to bring a living will to the hospital unless their relative is in a terminal or vegetative state, defined as a wakeful, unconscious state with little or no cognitive function. "Otherwise, their care and treatment can become compromised because of medical personnel misunderstandings."

And make sure family members know about the documents. "The worst thing that happens is that a patient has instructions in place that would withdraw life support, but the family isn't even aware that the document exists."

Why? Because they haven't had the conversation.

Terms You Should Know

There are various medical and legal terms you'll need to be familiar with once you start planning for the end of your life or that of a family member. For more details, visit The Conversation Project or consult the book Understanding Your Living Will by Ferdinando L. Mirarchi, DO.

Advance care planning: The process of thinking about and discussing end-of-life care, clarifying your related values and goals, and making your wishes known through written documents and medical orders, including a living will and health care power of attorney.

Do not intubate: A document stating that you don't want to be on a respirator.

Do not resuscitate (DNR): A document stating that you don't want any artificial breathing apparatus, such as a ventilator, if you don't have a pulse or aren't breathing. There are also options for stating that you don't want chest compressions, electric shock (defibrillation), or medications specifically designed to increase and maintain blood pressure and circulation.

Health care power of attorney: This legal document designates a person to make medical decisions for you if you become incapacitated. To allow the person who has health care power of attorney access to your medical records, you also need to complete a form authorizing release of protected health information as part of the Health Insurance Portability and Accountability Act, or HIPAA.

Hospice: Supportive care designed to relieve pain and suffering at the end of life that does not include any life-prolonging treatments.

Living will: This document specifies what medical treatments you do or don't want if you become permanently unconscious, terminally ill, or otherwise incapable of making decisions for yourself.

Palliative care: A comprehensive approach for treating the discomfort, stress, and symptoms of a life-threatening disease, including emotional and social support. Palliative specialists also help coordinate care among patients' doctors, ensuring that treatment is in accord with the patients' wishes.

Physician Orders for Life-Sustaining Treatment (POLST): A document you or your family members complete with your doctor when you are seriously ill, typically in the last year of life. It covers the care you want and don't want in more detail than a living will and is entered into the medical record.

Tips for Talking

To help family members begin end-of-life discussions, The Conversation Project offers a free starter kit. Here are some of its recommendations and sample questions.

Spend some time thinking about the conversation you want to have, and bear in mind that you can revisit the topic as often as is necessary.

Encourage your family member to write a letter about his end-of-life wishes to himself, a spouse or partner, or a friend.

Practice the conversation with a friend.

Don't shy away from disagreements once the conversation starts. The conversation should be an ongoing dialogue, not a one-time discussion.

Consider initiating the conversation with one of these openers:

• "I need your help with something."
• "Remember how someone in the family died? Was it a 'good' death or a 'hard' death? How will yours be different?"
• "I was thinking about what happened to our close family friend, and it made me realize ..."
• "Even though I'm okay right now, I'm worried that my situation might get worse, and I want to be prepared."
• "I need to think about the future. Will you help me?"
• "I just answered some questions about how I want the end of my life to be. I want you to see my answers. And I'm wondering what your answers would be."

To probe more deeply, consider these questions:

• What matters most to you at the end of your life?
• How much do you want to know about your condition?
• How do you want your doctors to treat you?
• How involved do you want to be in treatment decisions?
• How long do you want to receive medical care?
• What are your concerns about treatment?
• Where do you want to die?
• How much information do you want your medical team to share with your family?
• Is there an event or occasion you want to live long enough to see or participate in?

End-of-Life Resources

• The Conversation Project: A nonprofit devoted to helping families have conversations about end-of-life wishes.
• Caring Advocates: A membership site for preparing and storing a living will.
• My Directives: An online portal for creating a free emergency medical care plan. Many hospitals link to the site and can access the plan.
• The National POLST Paradigm: A website that provides information about Physician Orders for Life-Sustaining Treatment.