The empowering potential of end-of-life care

When we scan the medical journals for research to report, we often ask ourselves whether an article suggests something many of us can do to improve our health or well-being. It might come as a surprise, but the articles on end-of-life care in recent issues of the Journal of the American Medical Association and The New England Journal of Medicine actually fit that bill. And they delivered good news.

These articles’ collective message is that there is much that medical teams can do to ensure that people have the best days possible in their final months and weeks, and that they die without undue suffering. The takeaway: palliative care and good communication can make all the difference between a difficult death and a peaceful passing. Even if you’re young and healthy, it’s good information to have if a loved one is facing a terminal illness.

What palliative care can do

Palliative care isn’t designed to treat disease, but to improve the quality of life for people with life-threatening illnesses and their families. A palliative care team concentrates on relieving symptoms and stressors and helps the ill person articulate his or her preferences and set goals. The team may also help explain what to expect as the disease progresses. In one study, people with metastatic cancer who began palliative care early — while they were still undergoing chemotherapy — reported less pain, had lower rates of depression, and even lived longer than people who didn’t receive palliative care until their last few weeks.

Comfort care is a form of palliative care that focuses on easing a person’s suffering in his or her final days by relieving symptoms often associated with dying, including pain, anxiety, breathlessness, coughing, and dry mouth. While the care team does everything possible to reduce the person’s pain and stress, they also refrain from administering medications, monitoring vital signs, using feeding tubes, and doing other uncomfortable procedures that are unlikely to benefit the person. In effect, people can spend their last days without being tethered to IV lines and monitors.

Why communication with the health care team is so important

Dr. Jennifer Temel is an oncologist at Harvard-affiliated Massachusetts General Hospital who treats people with advanced lung cancer. She emphasizes that the medical team will support each person’s decisions — whether to undergo aggressive treatment in the hope of a recovery along with palliative care, or to receive only palliative care — but that the person should make those decisions based on a realistic sense of the severity of their illness. “When people are diagnosed with a life-threatening illness, it’s important that they understand what their condition is, what the treatments are, the purpose of each treatment, and what they might expect to gain,” she says. If you or a loved one is facing a life-threatening illness, it’s important to let the care team know what’s important to you or your loved one so they can help you make decisions that are in line with the person’s preferences, she adds.

Whether you or a loved one is the person facing a serious illness, you may want to let the care team know the following:

• Your own understanding of the illness and prognosis, so they can clear up any misconceptions you may have. In particular, ask the team to explain any medical terms that aren’t clear and have them describe the risks and potential benefits of any therapies they propose.
• The kinds of information you want to have, and what (if anything) you would rather not know.
• Who should be involved in discussions about care, and whether decisions will be made alone or collaboratively.
• Your, and your family’s, main worries or fears about the situation.
• Your values, goals, and preferences.
• What you consider “unacceptable states” — for example, being fed through a tube or being on a ventilator indefinitely.

Have the conversation with your family early

It’s always a good idea to explore these questions before you or a loved one develops a serious illness. According to the Centers for Disease Control and Prevention, more than half of us haven’t let our family members know how we’d like to be cared for at the end of our lives. If you want help broaching the subject, The Conversation Project, a collaboration of columnist Ellen Goodman and the Institute for Healthcare Improvement, offers a starter kit of suggestions.