Living With Dying articles
Discovering the Patient's Goals - online extras
By Leah Carey
Aug. 16, 2016
Dr. Dawn Gross meant to be a lab scientist. She had no ambition to be a palliative care doctor.
But, as she says, “Life happens.”
“There were moments of my own self-reflection where I found myself quiet, alone in the lab, with time to think,” she said. “I was asking myself, When am I most happy? And I was really surprised when the spontaneous answer was Mondays. I was really struck – who says Monday?!”
Then she realized that Mondays were the only days that she had contact with patients.
“I realized that I really love having end-of-life conversations,” Gross said. “I don’t know where that came from.”
That was about 10 years ago.
Now she is training others to have those end-of-life conversations at University of California, San Francisco.
“We’re not taught to communicate at all. That’s not part of our core training,” Gross said. “Just this morning I came from starting to facilitate a new curriculum that is just being created for the first-year internal medicine and transitional-year interns in communication, specifically.”
In their entire year of training, Gross gets exactly two hours with them to talk about communicating with patients. “One hour last month and one hours this month,” she said with some frustration.
She does see signs of hope, though. “They’re coming in with a far greater level of sophistication, and even awareness that communication might make sense to be part of their curriculum.”
Many of them end up doing a two-week rotation through palliative care during their fourth year and it’s an eye-opening experience for the doctors-in-training.
“They come away saying, This isn’t like anything else I’ve ever seen,” Gross said. “It’s not like they come away converted to wanting to be a palliative care doctor, but they come away seeing there are other ways of dealing with families and patients that they can integrate.”
But it’s not just the students who need to be educated. Practicing doctors and patients need to be brought into the fold as well.
Discovering the patient’s goals
One of the problems, as was voiced by Dr. Joshua Lakin in the previous entry in this series as well, is that doctors are taught that if they’re not winning against a disease, they’re losing. The perception, even among doctors, is that palliative care is only for when people die. Calling in palliative care, therefore, is viewed by many clinicians as an admittance of defeat.
“We try to find ways to be non-threatening and just be there to support,” Gross said. “But there are such perceptions…”
So what is palliative care? According to Gross, it’s all about discovering the patient’s goals and then finding ways to fulfill them.
For example, a med student might become frustrated that a patient isn’t taking the medication that will stabilize her condition. “Have we asked her why she doesn’t want to take the Prednisone?” Gross prompts them to ask. “The student says, ‘She says that all she wants to do is sweep and clean and cook for her family and doesn’t like how the Prednisone makes her feel.’ We’ve just elicited what her goals of care are – she wants to be able to take care of her family and we’re getting in the way … Is there something we can do in medicine to make that better? And if we can’t, we have to begin to realign goals.”
She gives another example of a father who wants to stay alive so he can walk his daughter down the wedding aisle, even though doctors don’t believe he’ll live that long.
“If you can’t walk down the aisle with your daughter at her marriage, what can we do to make sure that you’re there?” Gross asked, potentially suggesting the bride could carry a photo of her father on her bouquet. “It’s powerful medicine. It’s not something that Pfizer makes, but it’s powerful medicine.”
A revolution from the outside in
“We have so much education to do,” Gross said. “I honestly feel that the revolution that needs to happen is going to happen from the outside in – it will have to come from people wanting a different kind of care.”
The problem, she said, is that palliative care (versus aggressive treatment of disease) isn’t automatically triggered by anything or anyone in the system. It only comes into play when a perceptive doctor suggests it or a patient requests it.
“We’re making people ask at the moment that they’re most vulnerable, most scared,” she said. “Is that really the only option? More chemo? We’re waiting for them to open that door. That’s asking too much of them. That’s crazy.”
Death is for the living
Ultimately, she said, the death event is more about the living than it is about the dying, Gross said.
“Death is for the living. I have been by the side of many people who I’ve cared for who have died and not one of them has come back to tell me how I did,” she said with a twinkle in her voice. “But I absolutely know how it was for their family. So much of what we do in this field is to support the legacy – to support generations to come.”
“More than ever, you need the medical system to show up as your advocate and not the opposite,” she continued. “We will poor money at transplantation, Medicare will cover whatever your deductible is – hundreds of thousands, millions. But get you a trained communicative team in your house? Forget it! You’re on your own!”
“We really need help. It’s really broken,” Gross concluded. “I just keep waiting for the people who write the laws to experience this themselves because then the laws will change.”