Getting diagnosed with a life-threatening illness can feel like flying along at 36,000 feet and suddenly you’re plummeting toward the ground with the plane’s engine on fire. Your life is spiraling out of control, and it’s unstoppable.
But it doesn’t have to be. No matter how dire the diagnosis, you can regain control and pilot your life’s flight to a smooth landing.
That’s the message from longtime palliative care physician Dr. Steven Pantilat, a University of California, San Francisco, School of Medicine professor who believes there are better ways to confront and cope with serious illness, whether it’s cancer, lung disease, heart failure, Alzheimer’s or other life-changing maladies.
His new book, “Life After the Diagnosis” ($16.99, Da Capo Press), is based on 27 years of providing end-of-life, palliative care for seriously ill patients and their families. Filled with anecdotes of real Bay Area patients, he walks readers through how to ask the right questions, face their fears and be able to “live well longer” for as long as possible after diagnosis. We talked with Pantilat during a recent palliative care conference in Sacramento. Here’s an edited excerpt:
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Q: There’s a lot of confusion over the terms “hospice care” and “palliative care.” Would you explain the difference?
A: Pallative care is medical care that’s focused on improving quality of life for people with serious illness. It’s care that thinks about the whole person, their experience of illness and how to help people have the best quality of life. It helps with anxiety, depression, pain management and decision making. … Hospice is a particular kind of palliative care that most people in the U.S. get at home. It requires a six-month prognosis. … All hospice is palliative care, but not all palliative care is hospice.
Q: You say there’s no sugar-coating bad medical news, but how do you advise handling it?
A: Take time to let it sink in. If the doctor keeps talking, put up your hand and ask him or her to wait while you gather your thoughts. When you receive bad news, your brain may freeze and you may not hear or understand anything else that’s said. Ask explicit questions to pin your doctor down.
Schedule a follow-up appointment to review what you heard. Bring a list of questions with you. Bring a friend or family member to help hear all the information. Don’t be afraid to ask the difficult questions: Am I going to die? How long do I have? Are you sure? Knowing the truth lets you plan realistically.
Life after your diagnosis is the rest of your life, and the goal is to live as well as possible for as long as possible. By being an active participant, a co-pilot instead of a passenger, you can get the best care consistent with your values, goals, hopes and preferences. A key step going forward is to find a doctor you trust who will be a good partner.
Q: Too many people diagnosed with serious illness blame themselves: They didn’t eat healthy, smoked too much, drank too often. How do you dissuade people from getting bogged down by guilt?
A: Bad news is bad enough with making yourself feel bad. It’s important to recognize that it’s not fair this happened to you, but it doesn’t help to blame ourselves.
Q: What should patients ask about treatments?
A: It’s really important to ask your doctor about what’s on your mind. You have to ask lots of questions. Feel free to explain your goals and discuss what treatments will help you achieve them. We have patients who say: “What do I have to lose? How could it be worse?” My answer is: “Yes, it can be worse.”
As you get sicker, treatments may not actually help you live longer. They may even make your life shorter and ruin the life you hoped to extend. I encourage people to talk about their hopes and worries and let that guide their treatments.
Q: Why do you urge patients to push their doctors for a prognosis?
A: The kind of decisions you make will be very different if you have two to three weeks or if you have a year or more. Having a plan won’t change the diagnosis but it will change how you feel. All of us would live our lives differently if we knew we only had six months to live.
“What do you hope for?” That’s one of the golden questions we should be asking. I had a patient, a 64-year-old woman, who was in (the intensive care unit) dying of lung disease. Marion was so sick she couldn’t leave the hospital. When I asked what she hoped for, she said she wanted to see her daughter get married in Napa, in 10 months. I didn’t think she would make it that long.
We talked with her family. A week later, her daughter walks in, in a wedding dress and her (husband-to-be) in a tuxedo and they were married by a priest in front of Marion’s hospital bed. Everyone in the room was crying. Was it the wedding she imagined? No, but it was meaningful. She got to see her daughter get married.
Q: You’ve said there’s a lot of miscommunication in medicine that can harm a patient’s well-being. Can you explain?
A: I hear this question in the hospital all the time: “Do you want us to do everything possible?” I teach my students never to ask that because there’s usually only one answer.
We had a patient, an elderly Chinese woman who was dying of ovarian cancer and under hospice care at home. She started having trouble breathing; her family panicked and called 911. She was brought into (the emergency room) and the doctor asked the family: “Do you want us to do everything possible?” The family, of course, said, “Yes.”
The medical team was prepared to do battle – IV, oxygen, ventilator – but a (palliative care) colleague was in the hospital and rushed down to see the family. He asked her son: “Your mom is very sick. How were you hoping we could help?” The answer: They had a paper bag with new clothes and wanted to dress her for her journey to the next world.
She died a few hours later in a comfort care suite, surrounded by 20 family members, looking lovely in her new clothes. When you ask the right question, you get the right answer. And that is what is most important.
Q: Your book ends on a hopeful note.
A: Even with serious illness there is a lot of life to live. There can be great joy along with the sadness and grief and many things to hope for and achieve.
The fact that time is limited puts a premium on making the most of the time we have left. While all of us may understand this intellectually, those who are seriously ill feel it every day. That is the key lesson: to live fully every day.