What to Do

How can you make your own wishes known when you might not be able to communicate them in a time of medical crisis? Should you write them down now, while you’re still sentient? Tell a friend, a relative, your partner, your doctor? Experts answer: All of the above.

When writing an “advance directive,” be cautious about the specifics.

Some experts suggest, as does Carol E. Sieger of Partnership for Caring, that you fill out a highly specific advance directive. She advises that to ensure that you doctor or health care surrogate will comply with your wishes, you should describe exactly what medical treatments you want performed or withheld. Familiarize yourself with medical technologies, she advises, such as mechanical ventilation and artificial nutrition, so you can request what you want – and what you don’t. Others take the opposite tack, advising people to appoint a trusted health-care surrogate but not to spell out in detail what procedure you want followed or avoided, precisely because, alerts bioethicist Dr. Marion Danis of the National Institutes of Health, you cannot predict what medical situation you’ll encounter. You may have instructed, for example, that you do not want to be put on a ventilator. But some drugs administered may have a side effect that requires very short term use of a ventilator – a day, say – after which you will be fine. Under such circumstances, would you really want not to have that intervention? Highly specific directives written in advance may not match your wishes at the time of medical decision-making. The best current advice, according to Carol Levine, director of the Families and Health Care Project at the United Hospital Fund, is to use a health care proxy, because the specific advance directives you’ve written down in advance may be constructed in ways that just don’t fit the exact situation. “The more you spell out the more likely the hospital will say, ‘Well, this is not spelled out,'” so they will do the procedure not mentioned in the directive. Levine cautions that “There’s a sense of security in filling out advance directives, but it is a false security.”

Review your advance directive with your doctors.

Give you physician a copy of any advance directive and the name and number of anyone you have appointed to act for you should you become incapacitated. Discuss your wishes with your physician. Make sure that she understands your decisions and will comply with your advance directive, says Ann Moliver Ruben after her own sad experience. Some doctors will not honor a “Do Not Resuscitate” order; others will remove artificial ventilation but not a feeding tube. Ask.

Keep a copy of your advance directive, or instructions on where to find it, in your wallet along with the name of your surrogate.

If disaster strikes when you are away from your regular doctor or health care surrogate, your wishes can still be honored.

Discuss your wishes with your family.

Much like the decision to become an organ donor, your end-of-life preferences are more likely to be honored if those closest to you know about them, says Naomi Naierman of the American Hospice Foundation. These are often difficult conversations to initiate, but there are many situations where family members are confused about what a relative’s desires really are, so you are sparing those you care for by clarifying your position for them while you are able.

Choose an assertive surrogate.

Your health care proxy may have to challenge doctors and make tough decisions, so it is important to pick someone who will be a strong advocate for you. Remember that the laws on how to designate your surrogate differ state by state.

Appoint only one health care surrogate.

Multiple surrogates may disagree on how best to carry out your requests. Try to designate one or more alternate surrogates, to be consulted if your primary choice is incapacitated or absent.

Prepare for the task, if you can.

A reassuring map through the process of accepting – and acting on – the responsibility of making decisions for someone else’s well-being is a pamphlet on Making Health Care Decisions for Others: A Guide to being a Health Care Proxy or Surrogate. (There is also a companion booklet to give your doctor – same title, with the subhead A Quick Reference for Physicians, and it comes with a handy wallet-sized card.) Here you’re coached in how to make decisions for another – by following explicit statements, figuring out the patient’s wishes, or deciding how to act in the patient’s best interest when there are no clear guidelines. The suggestions are clear and compassionate, reminding the surrogate that “People often have the capacity to make some decisions and not others….Discussions in moments of clear thinking can yield ethically and legally valid decisions” even if the patient’s capacity for understanding fluctuates. One important clue is “start making decisions before the patient loses capacity,” meeting the doctors and letting the medical staff know your role. Another welcome piece of advice comes when there are conflicts with the patient’s family or disputes with the medical team: “A legally appointed proxy’s authority supersedes that of any other self-declared decision makes, including family members.” These were created by the Division of Bioethics, Montefiore Medical Center, New York; (718) 920-6226; www.bioethicsmontefiore.org.

Choose hospitals wisely.

If you are acting as a health care surrogate for someone and the doctors treating her refuse to honor her advance directive, you have the right to take her to another hospital. For those with terminal illnesses, hospice care may be a viable choice.

All accredited hospitals have medical ethics committees; they can help.

If the treating physician will not honor your loved one’s living will, you can bring your case before the ethics committee. If you need help making decisions or resolving disputes, ask to see the bioethics consultant, patient representative, ombudsman, social worker or rabbi.

What to do when you have to make health care decisions for others.

Many of us tend to think about medical decision-making only in times of crisis. We slough off the issue, sometimes by imagining that a parent, a child, a spouse or a close friend will take over and do the right thing for us if we are incapacitated. Working through their own reluctance and denial, a group of six women friends in their 50s gathered recently to prepare and sign a sit of mutual (or nearly mutual health-care proxy agreements. One of them is an attorney who crafted the language of the documents, one pair was a lesbian couple concerned that their relationship did not give them legal standing to make health care decisions for one another. All were friends of longstanding, unmarried, had no children, and had almost no surviving relatives of an older generation on whom they could depend.

“People really were their true selves,” reported one of the women. “I wanted someone who would decide to pull the plug on me immediately, but I did not want to make that decision for anybody else. So I didn’t agree to be anyone’s surrogate. You have to be honest, the way you would be when someone asks if you will be the legal guardian for a child. We took the choosing and the signing very seriously, then marked the event with Champagne and salmon mousse.” When asked where they put the documents, one woman said that hers was filed away with all her other important papers. Then she realized, when pressed, that all her careful preparation would be for naught unless she stashed at least the name and phone numbers of her designated health care proxy in her wallet.

– Susan Weidman Schneider

Reporting on caregiving issues made possible by the Grotta Foundation for Senior Care.