Just before Thanksgiving in 2010, I was diagnosed with breast cancer. It was a sobering way to start the holiday season. My doctors recommended that I have surgery, which was quickly scheduled for the second week of December.
From a purely medical standpoint, having the surgery as soon as possible was the right move. But when I hung up the phone with the scheduler, I started to cry. I was worried that it might be my last Christmas. I didn’t have a Christmas tree. I hadn’t bought any presents for my children, and I wasn’t even sure if I’d be able to celebrate my youngest son’s upcoming birthday. No one on my medical team had asked me what was most important to me, or inquired about my worries, my fears, or my hopes.
Right then, nothing was more important to me than spending the holidays with my family. Dealing with cancer would have to wait. I called back and rescheduled the surgery for Dec. 30.
My treatment was successful. Like many cancer survivors, I am grateful for the many “gifts” I received on that journey. One of the greatest of these was the insight and inspiration for leading a new approach to end-of-life care at Novant Health — an approach that focuses on engaging with patients early in their medical journey so their care is guided by their personal values and goals.
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In 2014, we launched Choices and Champions, a program dedicated to transforming end-of-life care. It begins with healthy adults. None of us knows what the future holds or what possible medical decisions we may have to make. The most important thing anyone can do today is to choose who you would trust to speak for you if you are ever unable to make your own medical decisions. We call this person a health care champion.
Once you choose that person, it’s essential to talk with him or her about the things that are most important to you. What makes your life worth living? Do you have deeply held religious beliefs that influence the kinds of medical care you want to receive? These are the kinds of things that can help someone else speak for you when you are unable to make your own medical decisions.
After this conversation, it’s important to write down the name of your health care champion and your wishes, goals, and values. You can do this in a legal document, such as a health care power of attorney. Committing your wishes to writing is the best way to ensure that they are known and honored — even if you can no longer speak for yourself.
Through Choices and Champions, we are making it easier for patients to make their wishes known and have them honored by their medical team. We are helping our clinicians become more comfortable with having conversations with their patients about the care they’d like to receive and to raise issues earlier related to end-of-life care.
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We encourage the use of portable medical orders — physician orders that can be honored by emergency medical services — to ensure that the wishes of critically ill patients are honored even outside the hospital. We’re also improving the way patients’ wishes are documented and stored in our system so they are easily accessible when they are needed most. Lastly, we are partnering with other organizations to increase engagement around advance care planning and end-of-life care, including tackling legal, regulatory, and financial barriers.
A cancer diagnosis didn’t change who I was or what was important to me. I was still a mother trying to make the holidays happen for my family — all the while afraid it would be my last one. But it made me realize that we owe it to everyone to provide treatment based not only on what’s best for their medical condition but also on what is best for them as whole people. When people don’t plan for illness and end-of-life care, though, their families and their medical team can be left guessing about what they would have wanted. This adds exponential stress to an already difficult situation.
This holiday season, I urge you to take time to make sure that the people in your family have conversations about what is important to them at the end of life. Choose a health care champion to speak for you when you cannot, and commit your values and wishes to writing. These conversations may not be Hallmark card material, but they can be one of the best gifts you’ll ever give to those you love.
Melissa Perrell Phipps is vice president and patient advocacy officer at Novant Health.