Uncomfortable though it may be, doctors strongly recommend knowing what treatments you would accept or reject in a medical emergency, and discussing your preferences with your loved ones and medical team.
Drafting a living will and appointing a health care agent by means of a medical power of attorney can help ensure that your wishes are followed if you become seriously ill and unable to communicate them yourself.
Most people with ALS stay conscious and able to communicate to the end, but this isn’t always the case, says MDA Medical Director Valerie Cwik. Thinking through the possibilities and leaving instructions is a way to stay in control of your medical care and your life.
"Talking about these things earlier rather than later is so important. These are not easy issues to discuss, and family members may be in denial and not want to hear it," says Cwik, a neurologist who was director of the MDA/ALS Center at the University of Arizona in Tucson.
"But the last thing we as medical professionals want to do is something that is against the patient’s wishes — either too much or too little."
The tough qestions
A big question in ALS is whether to use mechanical ventilation when the diaphragm and other muscles required for breathing have weakened. Sometimes this decision is forced by a sudden respiratory crisis. When a patient doesn’t have enough breath to speak, it’s helpful if his or her wishes can be voiced by a significant other.
Other issues to consider are artificial nutrition and hydration, cardiopulmonary resuscitation (CPR), IV fluids and antibiotics. If a ventilator or feeding tube already is in place, under what circumstances might you want it removed?
Talk with your ALS doctor about emergency treatment options, as well as the types of emergencies that might arise at various stage in ALS.
"For example, in the early stages of ALS a patient having a heart attack might want to be resuscitated, but later on in the disease, no," Cwik says.
Equally as important as gathering medical information is taking stock of your values and beliefs. These subjects should be discussed with the people who’ll be helping with your care. (See "Making Your Wishes Known," below.)
Make it legal
To ensure you get your way and to take the burden off caregivers, you can create advance directives — instructions about your care and designation of a decision maker.
As long as you’re making your own medical decisions, your advance directives are unused and you can accept or refuse any medical treatment, regardless of what you’ve indicated in the directives. But if you become unable to make decisions, the directives will provide a road map for others.
Two forms of advance directives are a living will (also called a directive to physicians or medical directive) and a medical power of attorney (sometimes called a durable power of attorney for health care, or a health proxy).
Wills and agents
Anyone who’s been in the hospital recently has been given a living will — a standard checkoff sheet listing treatment options you’d accept or reject. A living will can be this simple, or as specific as you want.
Usually, the immediate next of kin has the right to make medical decisions when a loved one is incapacitated. But there are reasons to legally designate a decision maker. For example, if your adult children might disagree or if you don’t have a competent next of kin, or if your decisions may change over time based on your health and circumstances, it’s useful to confer a medical power of attorney.
This means naming someone you trust (called a health care agent), who knows your wishes and is willing to make tough medical decisions. This person would make decisions when a doctor has certified in writing that you’re unable to do so.
You may cancel a medical power of attorney at any time, based on your state’s guidelines.
Do you need both?
Having a living will and designated decision maker(s) gives you structure and the flexibility to adapt to changing circumstances.
A living will provides the basic blueprint of your wishes, which your health care agent can flexibly apply to the specific situation. Is it early or late in the disease? What will be the quality of life after receiving the treatment in question? How do other recent events color the decision?
If the circumstances warrant, a trusted agent with medical power of attorney can override your living will decisions. By contrast, a next of kin without medical power of attorney must abide by your living will, although he or she could make decisions about things not covered by the will.
Do you need a lawyer?
An attorney isn’t necessary to execute advance directives. Forms are available at hospitals, doctors’ offices, or through state health, medical or bar associations. They’re also available online or in bookstores.
States usually honor out-of-state advance directives but if you regularly spend time elsewhere, fill out the forms for that location as well. Have documents notarized in the presence of two witnesses, neither of whom is named as health care agent.
See an attorney if you’re concerned that your directives might be challenged or if you’re worried about their legal effect.
Worth the effort
The emergency room is no place to make life-or-death decisions or to guess what someone else would do. Although advance directives might never be used, there’s comfort and control in knowing you’re as prepared as possible.
"The decisions you make in a crisis situation are so different from the ones you make in a noncrisis setting," Cwik says. "We really encourage people to think and talk about these issues early on."
Chicago attorney Tim Halleron, who specializes in estates and trusts, provided guidance for this article. For information about setting up a nonmedical power of attorney, see "Plan Ahead for Disability," March 2004.