Molly Bartlett decided to enjoy the short time she had left. Now she had to get her doctors on the same page. For her, what worked was writing a letter.
“My time is precious, and I still have much to enjoy,” she wrote in a recent essay published in the British Medical Journal. She wasn’t sure that she could explain her decisions verbally, face-to-face.
Bartlett had been diagnosed with kidney cancer about 20 years ago, and now it had returned. Sitting in the doctor’s office talking about how to move forward, she said she felt pressure to “do battle.” She decided it was time to “jump off the medical treadmill.”
Writing that kind of letter is not something many people think about before they absolutely have to, but having tough discussions about medical care is something that most people will encounter eventually.
“I can see why she felt the need to do this, and there wasn’t any space for her to do this in a normal clinical encounter,” says Dr. BJ Miller, a palliative care doctor and author of the recently published book “A Beginner’s Guide to the End,” in an interview with ABC News.
“For many of us, sitting down and composing a letter — you can get a lot more across,” he said. “Molly’s idea is perfect, accessible, anyone can do it, and it resets the power dynamic.”
It sends a signal to Molly’s doctors that she is “engaged” and “in charge” of her care, he added. It also removes “a lot of their guesswork in starting these difficult discussions.”
Dr. Miller had his own personal experience of coming close to death that resulted in a triple amputation as a young man. He then went on to become a doctor and an advocate helping people to think about their lives and their deaths differently.
“These tend to be very large and dynamic conversations,” he says about end-of-life discussions. “You sit down and you cultivate a safe space to have difficult discussions, and you just wade in with people,” he says of his role as a doctor.
There are many different approaches to these conversations, but Dr. Miller makes one thing clear: “It’s not something you ram down peoples’ throats.”
Instead, he says, it’s better to meet people where they are and encourage them to express their thoughts in various ways — like writing a letter.
“Don’t wait until you have a terminal illness to think about these things,” says Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine. “Even before we’re sick or have a serious illness, we should sit down with the people important to us, and talk about what we would want to happen.”
Dr. Rotella poses some questions for people to consider when writing a letter to their doctors.
- – What do you understand about your condition?
- – What is important to you? These are the things that matter most to me when I’m very sick…
- – What do you dread or fear?
- – What are your hopes?
- – Who do you want to support you and to participate in your medical decisions?
- – What are all the treatment options available to you?
- – Write down all questions you have, and what you still need answered.
Another resource Dr. Rotella recommended is the Stanford Letter Project, an online tool to help people write such a letter, with templates in eight different languages.
“One of the problems with going into a doctor visit without a letter, without having collected your thoughts, without enough time, and without bringing people important to you, is that you will have a rushed visit, and the doctor will make assumptions,” says Dr. Rotella.
Dr. Miller has some advice for doctors on what they can do for their patients.
“My first 10 answers are: listen,” he says. “Listen, listen, listen. If there’s one skill we all need to get better at, it’s that — listen.”
“Shared decision making is the best way for these tough decisions to occur,” says Dr. Rotella, “but that means it starts with patients having a clear sense of what matters most to them.”
Aaron Cook MD, MPH, is a third year internal medicine resident working with ABC News.
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