10 Things Doctors Want You to Know About End-of-Life Care
Medically Reviewed By William C. Lloyd III, MD, FACS
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It’s going to happen to all of us.Thanks to modern medicine, more people are living longer with serious and chronic illnesses like cancer, heart disease, and Alzheimer’s disease. Despite all these advances in extending life, palliative care specialist Dr. Steven Pantilat, MD, notes, "The death rate has remained remarkably stable at 100%." So, as difficult as it can be to think about or talk about, we all need to prepare for the end-of-life care we may need or want, as well as care for our loved ones. Dr. Pantilat and two oncologists offer more advice about end-of-life care based on their experiences with caring for terminal patients. -
1. “Don't wait for a medical crisis to think about your end-of-life care.”Nobody likes to imagine themselves becoming terminally ill, much less make plans for what to do if it happens. "People wait too long to consider the what-ifs: ‘What if I had some illness and I wasn't going to recover; how would I want to be treated?’" says Dr. Mary Mulcahy, MD, an oncologist at Northwestern Memorial Hospital. "’Would I want to be in the hospital or be kept comfortable at home?’" Too often, she says, people wait until medical problems are upon them to figure out what they want, or become too ill to make decisions for themselves.
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2. “Talk to your loved ones about what you want done.”Dr. Pantilat has seen it happen all too often in his practice at the University of California, San Francisco Medical Center. A family must make medical decisions for a very ill family member but, when he asks what that person would have wanted, nobody can answer. "They just look with blank faces--and all the weight of the responsibility of making that medical decision is on their shoulders," he says. By contrast, families who have had clear directives from their loved ones have a relatively easier time during this sad situation, he says. "It's really a gift you give to your family to speak about [end-of-life care]."
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3. “Every adult should have a healthcare power-of-attorney established.”Dr. Mulcahy advises everybody 18 or older, healthy or not, to assign a healthcare power of attorney; that is, to name the person who legally can make medical decisions for you if needed. Then, "Have a conversation with that person to make sure they know what is important to you and what your values and goals are," she says. If you don't give a healthcare power of attorney to someone, your state will determine who can make decisions for you (your "surrogate") based on a standard formula, but this might result in someone you don't want in this important role.
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4. “You can use online resources to put end-of-life wishes in place.”Dr. Pantilat recommends the Prepare for Your Care website, which walks you through the process of deciding on a medical decision-maker and determining what's most important to you in your treatment. If you have a serious illness, you also may want to talk to your doctor about having medical orders in place when it comes to whether and when to use life-saving treatment. Thirty-four states plus the District of Columbia allow these standing orders, says Dr. Pantilat.
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5. “Find a doctor you're comfortable with so you openly share your concerns.”Talking frankly about your prognosis and treatment options with your doctor used to be "kind of a taboo conversation," says Dr. Laurie Matt-Amaral, an oncologist at Cleveland Clinic's Akron General Medical Center. Today, most doctors "are better at those conversations." She advises asking your doctor what treatment entails, including your life expectancy if you do or don't take the treatment, as well as your quality of life. "If you don't feel like you can have those kind of scary discussions with the person who is taking care of you,” then you need to find another doctor—and don't worry about hurting your doctor's feelings if you seek other care, Dr. Matt-Amaral says.
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6. “Don't be afraid to tell us to stop talking while you process what we've said.”Getting a serious medical diagnosis or a devastating prognosis can be a deeply shocking experience and can cause patients to lose the ability to focus on what's being said, says Dr. Pantilat. "Often the doctors will just keep talking because they are as uncomfortable with silence as the patients are. So I recommend patients put a hand up and ask the doctor to just wait, to give you a minute or two to gather your thoughts, because you can't hear anything they say." He also suggests having a friend or family member come along to appointments to act as a second set of ears, or even tape-recording visits if needed.
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7. “Seek out a palliative care specialist when you are hospitalized with a serious condition.”Dr. Pantilat says you can ask for a palliative care specialist as soon as you are diagnosed with a serious condition; you don't need to wait until the illness has reached its end stages, nor do you need to discontinue treating your illness in order to receive palliative care. Palliative care physicians can help alleviate pain, shortness of breath, and other troubling symptoms, plus provide help with spiritual, emotional, psychological and practical concerns. If a palliative care physician isn't available at your hospital, ask for a hospitalist, who also is trained to address these issues.
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8. “Hospice and palliative care can help you feel better and live longer.”Hospice is a type of palliative care that people have when their prognosis is six months or less, and involves stopping active treatment of the disease. Studies show the earlier people go into hospice care, the longer they live, says Dr. Matt-Amaral. Similar results have been shown for non-hospice palliative care. Dr. Pantilat points to a 2010 Harvard study that showed people with incurable lung cancer who got palliative care in addition to chemotherapy "had less pain, better satisfaction with their care, less depression, better quality of life and they lived longer by three months."
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9. “I haven't given up on you just because I recommend hospice care.”Many people have the misconception that when a doctor recommends palliative or hospice care, it means their death is imminent, says Dr. Matt-Amaral. "They go, 'Oh my God, my doctor is giving up on me and I am just going to die.' And I go, 'No, that's not the case—I'm just changing the focus from treating your cancer to focusing on you as a person.'" Instead of battling your illness, says Dr. Matt-Amaral, she fights to provide "whatever you need to make you comfortable so that during whatever time you have left, you're happy and not suffering."
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10. “You have to keep hopeful—but it needs to be realistic hope.”Sometimes, patients are protected by family members or even doctors from understanding what their prognosis really is, which can lead to false expectations and prevent patients from living their final days as they would wish. For example, says Dr. Pantilat, he has had patients who think they have several years to live, when realistically they may only have a couple of months. Being honest with these patients, he says, helped them "focus on what is most important," which for some patients might mean being at home with family and loved ones rather than pursuing more hospital treatments.
10 Things Doctors Want You to Know About End-of-Life Care
