En español | Bob Samuels, a 76-year-old leadership consultant in Lake Oswego, Ore., has undergone six different kinds of chemotherapy to combat the leukemia he's been fighting since 2003. After one of those rounds caused life-threatening congestive heart failure, his primary care physician sat down to talk with him about his wishes for care near the end of life. "No other doctor had ever brought this up, but the conversation gave me comfort that dying doesn't have to be painful — and more importantly, the likelihood of my end-of-life wishes actually being followed is now quite high," Samuels says.
Now more people will be able to have these conversations. As of Jan. 1, Medicare has begun reimbursing physicians and other health care professionals for talking with patients about future medical decisions and their priorities for care at the end of life.
"The fact that the largest health insurer in the country is paying [doctors] to do this sends the signal that such conversations are important," says Diane E. Meier, M.D., director of the Center to Advance Palliative Care at Mount Sinai Health Systems in New York and a member of the national panel that made the recommendation for Medicare reimbursement.
Although this has been a controversial subject in the past, these talks can help ensure that patients' wishes are followed if they become critically ill, says Ira Byock, a palliative care physician and author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life. It also can help surviving friends and family. "It's better," he says, "to work this through when people are still alive so that others can look back and feel like they did it right."
If your doctor doesn't initiate an end-of-life talk with you, here are some ways to get one started and some of the topics you should cover. In addition, there are important legal documents that you will need to make your decisions binding.
Having the talk
Harvard Medical School professor and researcher Angelo Volandes, author of a book on these talks called The Conversation: A Revolutionary Plan for End-of-Life Care, encourages patients to initiate end-of-life conversations with their doctors. "Physicians are often hesitant to bring up the subject and are often relieved when patients do it first," he says.
The Conversation Project, a website begun by Pulitzer Prize-winning writer Ellen Goodman, has an excellent, free online starter kit with suggestions for ways to break the ice with your doctor and what topics to discuss. Calling ahead to say you want an appointment with your doctor to discuss your end-of-life care is the first step.
Volandes, an internal medicine physician, says patients and their doctors should discuss questions such as: What is most important to you? What fears do you have about getting sick or needing medical care? If you were very sick, are there any specific medical treatments that might be too much for you? Do you have any beliefs that guide you when you make medical decisions?
The legal forms you need
There are two kinds of forms people need to ensure they get the care they desire at the end of life: legal documents and medical orders.
Advance directives are legal documents and include a health care proxy (also called health care or medical power of attorney) and a living will. They spell out what a person wants done if she is unable to speak for herself, as well as who is delegated to speak for her. In some states the proxy and the living will are part of one document, but it can vary from state to state. State-specific advance directive forms can be found at www.caringinfo.org.
People often hire lawyers to prepare these forms for them, but it's not required. Forms can be downloaded and filled out by individuals, but must be notarized and witnessed to be valid.
You should know that advance directives may not always be followed by medical personnel, especially in an emergency. That's why you also need a medical order.
A medical order, called a POLST (Physician Orders for Life-Sustaining Treatment), makes those advance directives binding on all medical staff, including those in the emergency room and in the ambulance. The medical order is also what indicates whether a patient has a do-not-resuscitate (DNR) order.
Here are more details you should know.
Health care proxy: If you want to make sure you have control over what happens to you medically once you can no longer express your own wishes, the first step is to legally name a proxy or someone you trust to speak for you if you become unable to speak for yourself. Without a proxy, the default action will be to do everything possible to keep you alive.
Before you name that proxy or surrogate, you need to speak with that person to determine whether he is willing to honor your preferences, even if they differ from his own. Your proxy needs to know, for example, whether you wish to pursue every possible treatment, no matter the side effects, or whether you only want comfort care.
Most people name a family member or members, but others choose a friend, neighbor or minister. Some parents are hesitant to single out one child as their proxy. It is possible to list a number of proxy decision-makers and to say in your document that all should be consulted in arriving at the best decision for you. The important factor is to choose the person or persons you trust who will accurately represent you and your preferences, Meier says.
Living will: This is a general guide that explains your values and priorities and spells out the treatments you would want — for example, resuscitation, mechanical ventilators, dialysis, organ donation, comfort care, doing everything possible to keep you alive. Meier recommends that patients ask their health care provider questions about these or any other specific treatments "and then weigh whether the risks outweigh the benefits."
Medical orders: The Physician Orders for Life-Sustaining Treatments program, cofounded by Susan Tolle, a physician and director of the Center for Ethics at Oregon Health & Science University, should be considered if you have an advanced chronic disease or are becoming more frail.
POLSTs are medical orders signed by physicians (and in some states nurse practitioners) and are kept in the patient's electronic medical records. They indicate whether or not you have a do-not-resuscitate or do-not-attempt-resuscitation order, and must be followed by health care providers as well as emergency medical personnel. They are more specific about acceptable treatments and more binding than an advance directive.
"POLSTs are needed to turn advance directives into action," Tolle says. Simply having an advance directive "may not keep you from dying in the hospital," she adds. "Medical orders are what can allow people to die comfortably at home, if that is their wish."
Tolle says that POLSTs are not available in every state and that the forms vary from state to state. At polst.org, you can view a national map to see where they are available and for contact information.
What to do next
Once you have completed your advance directives, copies should be given to your spouse or significant other, children, doctor, lawyer or other appropriate relatives and friends. The documents should be scanned into the electronic health records of your doctor's office and hospital.
As you age and circumstances change, you should revisit your health care proxy and living will. You may choose to change your proxy, your proxy may no longer be living, your marital status or health situation may have changed and your priorities may have shifted. Meier says the health care system relies heavily on the person you have selected as your proxy decision-maker, so revisiting the documents and conversations should be done periodically.
Barbara Sadick is a freelance health writer based in New York.
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