Making decisions about end-of-life care can feel emotionally and spiritually overwhelming, especially when the decisions are for someone else.
Here are seven steps for making the best decision possible, recommended by ethicists and people who have recently cared for loved ones.
1. Get as much information as you can.
When Ray Clemons of Sacramento, California was diagnosed with multiple myeloma, a type of blood cell cancer, his wife, Rose Mary, and their eight adult children all sat down with Clemons' doctor. They asked him every question they had about Clemons' condition and the potential risks and benefits of each treatment option. Not every doctor is as accessible or communicative with families, but make the effort to ask all your questions-and make sure to write down the answers, adds Patrick Clemons, Ray's son.
2. Work as a team.
"These are very complicated issues with medical, legal, ethical, and religious layers," says James J. Walter, professor of bioethics at Loyola Marymount University and clinical bioethicist in the intensive care unit and on the palliative care service at Providence Little Company of Mary Medical Center in Torrance, California. "Whenever patients and families have to face these situations they need a team approach."
Joseph Quinn (not his real name) of South Bend, Indiana, cared for his wife, Maria, who was in hospitals and nursing facilities for six months after she suffered a massive stroke. He advises families to get in contact with as many resources as possible, including hospital case workers, elder care lawyers, nursing and chaplaincy staff, hospice, and one's pastor.
3. Make decisions for the person facing the end of life-not for those who may be left behind.
While the imminent death of a loved one can be a chance for families to come together, more often than not it strains family dynamics. Unresolved issues, high emotions, difficult relationships, and differences of opinion can cause families to reach a standoff about what course of action to take. When Walter meets with family members facing a difficult decision about their father, for instance, he starts with, "Tell me about your dad." The stories illuminate dad's beliefs, values, and things he did and didn't find worthwhile. Then when families consider their options, they're often more comfortable making a decision, whether it's "Dad wouldn't want this," or "Dad's a fighter, let's give it a shot."
"What you're being asked to do is decide what your dad would want," Walter says.
4. As the situation changes, reassess the benefits and burdens.
"You have to be willing to say, ‘What is the situation right now? If this were the initial situation, what would I be willing to do or not do?'" Quinn says. Maria was placed on a ventilator during the emergency surgery after her stroke-something she had said she wouldn't want-but once she was on it, she stayed on until the doctor determined she didn't need it. "When she came off the vent, we made a plan that she wouldn't ever be put back on," Quinn says. "And when we realized that she had months rather than years, we decided our goal was to make her as comfortable as possible."
5. Care.
Regardless of treatment choices, one can always provide the kind of care that increases a suffering person's comfort-and indeed, one is morally required to do so. "We decided to make Maria as comfortable as possible even if that meant lengthening or shortening her life," Quinn says. When she battled infections and pneumonia during the time she was in a coma, for instance, some medical staffers questioned the family's choice to give her antibiotics; they thought it would just delay the inevitable. "If comfort is that important, you have to put some of that aside," he says. "What we kept asking ourselves is, ‘What do we need to do to help her feel better now?'"
Other choices about care were easier for the family to make: "We read to Maria as often as we could. We played detective shows and The Gilmore Girls-her favorite TV shows-on DVD, and we played her extensive collection of jazz CDs when we were out of the room," Quinn says. "Nurses at the hospital were known to take their breaks in Maria's room to listen to the music."
6. Talk with your family about what you want.
Of course, the most helpful-and most often neglected-step takes place long before the end is near. "One thing that's too often not done in our country is talk about death," says Father Thomas Nairn, O.F.M., senior director of ethics for the Catholic Health Association. "Spend an evening together as a family and find out each person's wishes and expectations." He recommends writing your thoughts down before you talk. Online resources such as the end-of-life decision-making guide at caregiver.org can help get you started. "We're dealing with our most important values and situations we're not used to talking about. It may be easier for an elderly patient to do, but even people in their 20s need to do it."
Having a living will is a good step, but it's not enough. Documents vary from state to state and often don't say exactly what someone might want. When Irene Bradley marked on her living will that she made no decision regarding artificial nutrition and hydration (one of three choices offered, along with definitely wanting ANH or definitely not) her lawyer asked her to explain-while her daughter was in the room-what exactly she did want. And while Maria Quinn had made her wishes known in her living will, they were especially difficult at first for one of her daughters because she hadn't read through the document before Quinn was in the hospital.
When Nairn asked a fellow Franciscan to be his health care proxy agent, he took his friend out to lunch and opened their conversation by saying, "Let's talk about what I want to do when I die."
7. Pray.
In the jumble of medical information and emotions, it's essential to hand the situation over to God. Ray Clemons had a binder full of his favorite prayers that allowed his loved ones to pray along with him. The Jankowskis' pastor came to their home to pray with them twice during Bradley's illness. While some parish pastoral staff members and hospital chaplains will seem heaven-sent during this time, others may not. As with medical care or advice about end-of-life decisions, if you don't feel comfortable with the pastoral care or spiritual advice someone is offering during this time, "it would be wise to think of others to talk with," Walter says.
Prayer can also be an opportunity to remember that there's more than suffering and death on the horizon for our loved ones, and for us. As Cardinal Justin Rigali and Bishop William Lori wrote in America magazine last year, "Earthly life is not the highest of all goods, and our hope in eternal life puts in proper perspective all disproportionate and burdensome efforts to sustain life."
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