The control you want over medical decisions
No one likes to think about it, but at some point you may not be able to make medical decisions for yourself. According to the National Institutes of Health, more than one out of four older Americans face questions about medical treatment near the end of life but are not capable of making those decisions. That’s where advance directives come in.
“An advance directive can include one or both of two legal documents,” says Michael A. Williams, M.D., medical director of The Sandra and Malcolm Berman Brain & Spine Institute of LifeBridge Health in Baltimore, Md., and former chair of the American Academy of Neurology’s Ethics, Law, and Humanities committee. “The first document is commonly known as a living will, in which you write down your treatment preferences if you are in a certain condition; and the second is a durable power of attorney for health care decisions, in which you name a surrogate to make medical decisions for you if you are not able to.”
Keep your goals in mind
“You can’t anticipate every medical scenario,” Williams says. “It’s easy to be overwhelmed by the numerous medical treatment options such as ventilators, intravenous fluids, and feeding tubes.”
By writing down only a list of measures you don’t want, you may be shortchanging yourself. “Even if you have an end-stage condition, a situation may arise in which you need one of these treatments for a short time to recover from an episode of illness,” Williams says.
“Write down what your goals of care and your values are,” Williams advises. “For instance, some people may want to stay alive no matter the circumstances, and others may want treatment even if it is expected that they would survive with impairments such as a loss of power of speech or paralysis. Others may only want treatment measures that will keep them comfortable if their condition, for example, persistent vegetative state, is not consistent with their goals of care. By focusing on your goals instead of specific treatments, your surrogate and doctors can determine whether to initiate, continue, or stop a particular treatment depending on whether or not they think it will help you to achieve your goals of care.”
Decide what you want before you get sick. “Your doctor can be your partner in putting your advance care planning into place,” says Shaveta Kotwal, M.D., medical director at Ashby Ponds, an Erickson Living community in Ashburn, Va. “I can help give them more information based upon what I know about their health.”
Consider your loved ones. “Having a living will makes it much easier for them to make hard decisions and abide by your wishes,” Kotwal adds.
Your health care surrogate
A durable power of attorney for health care decisions is a different document from a durable power of attorney for legal and financial decisions. Your health care surrogate should be someone you trust who has been informed of your values and wishes.
“If you don’t name a surrogate, the law in most states will determine who has the authority to make your medical decisions,” Williams explains. “State law may also place restrictions on the types of decisions that can be made; whereas, your legal surrogate is likely to have more flexibility.”
You can give your surrogate permission to make all necessary decisions or only specific ones. “Having regular conversations about your preferences will help give your surrogate peace of mind if the time comes,” Williams says.
Mind the details
Living wills and powers of attorney may be separate or on one form. Most states have their own documents available online, and some require a witness’s signature or notarization. Getting a lawyer to help is a matter of preference and usually not required to make the documents legal.
Once everything is in place, tell essential people where the forms are kept. Include your doctor, surrogate and alternate surrogate (if you have one), and key family and friends. If you spend a lot of time in more than one state, consider preparing documents for each state. “Most advance directives are recognized as valid from state to state,” Williams says. “But treatment decisions still have to adhere to state law. If you are in another country, you also have to abide by their laws and prevailing culture.”
Some states are developing supplementary forms such as Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST). “These documents fix a gap that exists in some hospital systems now,” Williams explains. “Essentially, they make sure that doctor’s orders based on your advance directives will be honored if you are transferred to another facility, such as a nursing home.”
“The court system shouldn’t make your medical decisions, such as in the Terry Schiavo case,” Williams says. “You never know what the future holds, and your advance directives are your opportunity to have your own say.”
Where to find advance directives
Your local area agency on aging can help you obtain the right forms. Contact the Eldercare Locator at 1-800-677-1116 or visit eldercare.gov.
National Hospice and Palliative Care Organization
Consumer’s Tool Kit for Health Care Advance Planning
American Bar Association
321 North Clark Street, Chicago, IL 60654
Put It in Writing
American Hospital Association
155 North Wacker Drive, Chicago, IL 60606