As a teenager, Heather Rubesch lost an aunt who died in need of a kidney transplant. She recalls later family discussions, when her mother, Linda, expressed some of her views about end-of-life care—for instance, her belief in organ donation.
But as an adult, Heather found that starting a conversation about end-of-life care with family members was uncomfortable. It forced her and her loved ones to confront the potential of serious incapacity and death.
Those conversations are worth having, however. Putting your wishes about end-of-life care in writing—with documents known as advance directives—can make a big difference in situations like these:
- A severe accident or injury, or an acute condition like stroke, may require immediate, unexpected decisions about life-support treatment, feeding tubes and organ donation.
- When disability or severe chronic disease — such as Alzheimer's disease or amyotrophic lateral sclerosis (ALS) — is expected to keep getting worse until death, the patient, family members or friends will need to make decisions about end-of-life care.
- In advanced stages of cancer or even in the natural course of aging, end-of-life care might involve choices about pain relief and nursing or hospice care.
More than two-thirds of today's 65-year-olds will require long-term care assistance at home or in a facility, according to 2005 data from researchers at The Pennsylvania State and Georgetown Universities.
Despite that reality, many don't make provisions for end-of-life care. A small survey of 900 adults over age 25 found that only 30 percent of those surveyed named a health proxy and only 46 percent had a living will.
"It is only human nature not to want to anticipate or plan in advance for distressing circumstances. It's not something we want to plan on. We like to live in a certain amount of denial. Appointing an agent means acknowledging that some time or another we are going to get sick, may lose the ability to communicate, may die," said Diane E. Meier, M.D, director of the Center to Advance Palliative Care in New York City.
Others may be reluctant to use advance health care planning because they fear losing control of health care decision making. Some may be fearful that defining their end-of-life wishes means they won't receive medical treatment at all.
Overcoming these fears can be difficult. But having an advanced directive increases the likelihood that you'll receive the care you want and may give your loved ones comfort and guidance at a time they may desperately need it.
"Advance care planning improves end-of-life care and patent and family satisfaction and reduces stress, anxiety and depression in surviving relatives," found a recent small study of Australian hospital patients ages 80 and older, in the latest issue of BMJ.
Advance Directives: What Are They?
The first place you might hear about advance directives—and be asked if you have one—is at the hospital, a nursing home or a home health care facility.
In 1990, Congress passed the Patient Self-Determination Act. As a result, all facilities that receive Medicare and Medicaid funding are required to ask whether patients have an advance care directive and offer information in writing about advance directives and patient medical decision-making rights in their state.
"Patients often confuse advance directives with a will for possessions," said Cari Levy, M.D., an assistant professor of medicine at Denver Veterans Affairs Medical Center and a board-certified internist, geriatrician, and health services researcher.
But while a will handles who will inherit your material goods, an advance directive is a term for several documents that state your choices about health care if you're unable to speak for yourself. Two types of advance directives are living wills and durable power of attorney for health care, sometimes called medical power of attorney, health care agent or health care proxy.
With a living will, you can note what type of medical care you'd want if you were in a coma, whether you'd want life-support treatment if you had permanent and severe brain damage, and circumstances under which you do not want to be kept alive. Living wills can be very specific. You can say whether you want or do not want breathing assistance, artificial hydration or feeding, CPR or blood transfusions or even certain medications.
With a durable power of attorney for health care, you name a person—generally a spouse, family member, or close friend—to make medical decisions for you if you're unable, at the end of your life or any time you're unable.
For example, this person might work with health care professionals to decide if you need medicine or surgery, consent to your transfer to a nursing home or hospice facility or donate your organs or tissues after death.
"Appointing people to make medical decisions if you are unable to is by far the most important aspect of advance care planning. As your doctor, if I need to speak to someone to help make decisions on your behalf if you are unable to make them yourself, I would much prefer to be working with someone I know you trusted and thought could fairly represent who you are and what you care about," Meier said. "This person that you appoint doesn't have to be a family member. It does need to be someone who you trust."
Naming a health care decision maker helps doctors and loved ones consider the specific medical circumstances, which allows for both flexibility and cooperation in times of medical crisis.
"Appointing a person or persons to work with your doctor allows people real-time consultation with the health care team to consider all of the facts on the ground ... A living will does not allow for those nuances," Meier said.
In some states, an advance directive offers same-sex couples the opportunity to designate their partners to make medical decisions for them as part of the durable power of attorney for health care.
Have a Say in Your Care
An advance directive is only used when you cannot make decisions for yourself. It serves as a blueprint for health care professionals and your family to make medical decisions in line with your values when you are unable to say what you want. Preparing an advance directive can ensure your personal choices about medical care are followed. And you're not the only one who benefits: an advance directive can reduce suffering for your loved ones, too.
"This is a way of caring for and supporting your family when they may be left to make critical decisions about your medical treatments," said Ira Byock, M.D., director of palliative medicine at Dartmouth-Hitchcock Medical Center.
In the event of a medical emergency, "my wife and daughters will struggle with decisions about my treatment and care," Byock said. "In a sense, I can't stop that. What I can do is give them clear authority to speak for me. Secondly, I can tell them what I think I would want in those circumstances so that I can shoulder some of the burden that they're likely to feel about those decisions."
The Paper Trail
So, who needs an advance directive?
"For anybody that has a serious or chronic illness—heart failure, chronic obstructive pulmonary disorder, chronic lung disease, any cancer, really any serious or life-limiting illness—it's very important to articulate what you don't want or want," Levy said.
Even people in good health should have an advance directive in place when they're scheduled for surgery: "Any procedure that requires informed consent ought to also include completion of an advance directive," Byock said.
Because a serious accident or sudden-onset illness can befall anybody, Byock recommends that anyone over age 18 prepare these important medical documents. For people under 18, parents or guardians are expected to direct medical care.
You should find out how your hospital or doctor's office records and stores advance directives. The process may be different if they use electronic medical records or paper charts. Generally, medical directives are placed in the chart that documents a patient's history and care. However, once a patient leaves the hospital, that chart is usually filed or stored. This can make it difficult or impossible to access the person's instructions in the future, Meier said.
If a living will is available, health care professionals then work with the person named in the durable power of attorney for health care to make decisions and ensure the patient's wishes are carried out. According to one 2009 survey of physicians, 90 percent said they considered the wishes in a living will when making health care recommendations to the patient's family.
At age 55, Linda Rubesch developed a blood clot that caused a fatal aneurysm. Unknown to her daughter, she had created an advance directive a year earlier, as part of the hospital preadmission process for a minor ankle surgery. At that time, she named Heather as her health care decision maker, but hadn't told Rubesch, her siblings or even her husband that she'd done so.
In Rubesch's case, the hospital where her mother had ankle surgery had maintained the hospital file containing the advance directive naming Heather as the appointed health care decision maker. They used it to contact her a year later.
The take-home message is anyone who appoints a medical decision-maker needs to make sure someone knows about it, Meier said: "Tell the person you appointed and the other people in your family. Even if we can't find a piece of paper, it's helpful to know someone was appointed."
Rubesch wishes her mother had provided her with a copy of her advance directive. But because her mom talked openly about her wishes with all of her family members, there was no disagreement about how to handle her mother's end-of-life care.
"I'm still confident in the decisions that I made," Rubesch said. "Because of her directive and the fact that she had spoken with me about her personal wishes prior to her aneurysm, she was able to be an organ donor for nine people, plus countless others through tissue that was used for research." This was exactly what she wanted, Rubesch said.
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