Living With Dying articles
By Leah Carey
Aug. 2, 2016
“People are afraid in this country. Number one, we’re afraid of talking about death. It’s our culture. We celebrate youth and beauty.”
~ Dr. Joshua Lakin
Dr. Joshua Lakin has spent a lot of time thinking about how doctors and patients communicate, especially around life-ending illnesses.
Lakin is a palliative care specialist at Dana Farber Cancer Institute in Boston. He is also a research team leader at Ariadne Labs in Boston, a joint venture of Brigham and Women’s Hospital and the Harvard T. H Chan School of Public Health, created by Dr. Atul Gawande and Dr. Susan Block. “They essentially set themselves a very easy goal of improving communication for people everywhere,” Lakin said with a chuckle. “Piece of cake!”
“When I started, they were doing a scientific randomized control trial at Dana Farber,” Lakin said, “to learn what [communication] does for families and patients around anxiety, depression, their experience with their illness.”
Lakin is furthering this work with implementation trials, teaching clinicians why communication is important, and how to improve their skills.
Medical school classes didn’t offer Lakin much training in communicating with patients, especially around end-of-life issues. In fact, it didn’t offer much training in end-of-life issues at all.
“I did medical school and got very shallow experience. I had about a half a day of hospice. I didn’t even really know what palliative care was. And then in residency I ran up against clinically working with so many people who were really struggling with incurable illnesses, didn’t really understand it and were getting churned by the medical system,” he said. “So they were getting a lot of treatment, but a lot of it they were getting really frustrated with.”
Lakin discovered that he had a knack for talking with people in that situation. “We’re doing everything we can for you right now and you seem frustrated, things don’t seem to be going well. Tell me more about that and let’s talk about what’s important,” he would say. “Because basically when there is no right answer, the best we can do is try and provide what we can that lines up with your goals, give you the best time for as much time as we can.”
About halfway through his residency program, Lakin was introduced to palliative care as a specialty, and he pursued it with a passion.
“I realized that I derive a lot of personal satisfaction with my work,” he said.
He also realized that there was a big gap between what patients need and what doctors are trained to provide.
The perfect conspiracy
“Most people want to have these conversations. They’re good for both patients and health care systems,” Lakin said. But the research shows a gap between what everyone knows is beneficial and what is actually done.
“We don’t do them. And if we do, we do it late and we don’t do it very well. We focus on medical details and we don’t talk about goals and priorities and stressors like families and patients want to.”
In addition to a lack of clinical training on end-of-life issues and communication, doctors often struggle with very human issues when they talk with patients.
“Doctors worry that they’re going to hurt people or they’re going to take away someone’s hope,” Lakin explained. “Or that it’s not the right time. Or maybe they’re going to get better. And I think the doctors worry that the patients won’t like them or trust them. We’re people too.”
What happens when patients don’t want to think about end-of-life issues and clinicians aren’t trained to talk about it?
“It’s a perfect conspiracy,” Lakin said. “We conspire together. [Patients] don’t want to do it. The clinician doesn’t want to do it. ‘It makes me uncomfortable, I’m worried I’ll get it wrong, I’m afraid I’ll hurt them’.”
The doctor’s side of the conspiracy is elevated by the way we think and speak about illness.
“Clinicians worry that their patients will see them as failing,” Lakin said. “We set up disease treatment as a battle. There’s a winner and a loser. And they’re afraid that they’re going to lose the battle. There’s a lot of things that work against them wanting to do this.”
“I think it’s all pretty well-intentioned for the most part. But it does result in a culture of avoidance.”
Dosages of communication
Lakin credits his colleague Dr. Vicki Jackson, internist and Chief of Palliative Care at Massachusetts General Hospital, with a metaphor for communication that may work for many clinicians.
“She says, I have doses in my communication, just like you have doses to your medicine. There’s different levels of skills and push. So for people early on, I’m very gentle. I just plant seeds. I just name things and let people think about them.”
As time goes on, Lakin can increase the “dosage” of information. And, just like a disease that is discovered at an advanced stage, in some cases a high dosage is required right away
“When you have someone who has a couple days left and they have no idea, and their family is just churning, you sit down and you have a big intense conversation,” Lakin said.
In those cases, there is a specific protocol that Lakin and his palliative care colleagues use.
“We treat those meetings and those big conversations almost like procedures. We have steps we don’t skip and we talk about it.”
The communication procedure
Lakin laid out the procedure that his team uses for the bigger conversations. It’s a procedure they teach the fellows who work with them.
“There are tools that we use to move through these conversations,” he said. “It’s an art and a science.”
1. Make sure you’ve got a quiet space.
2. Make sure you’ve got the information you need before you walk in the room.
3. Make sure you’ve talked to all the specialists and teams that you need to.
4. Make sure the person has their family or whoever they want there for them.
5. Make sure that you fire a warning shot before you tell them any bad news – “We have scary stuff to talk about. This is going to be a scary thing, but we’re all here to support you.”
6. If someone starts crying, don’t provide more facts. Sit with them. Acknowledge that they’re crying, talk about their sadness before you provide more information.
According to Lakin, the hardest part for many doctors is step #6 – when patients get emotional.
“For a lot of doctors, it’s not intuitive to deal with emotions. A lot of doctors, if someone starts crying, they want to retract what they said to make them cry. Or they want to tell them something that’s going to make them feel better. But there are situations where you can’t make someone feel better. You just need to sit with them while they process,” Lakin said. “And sometimes that’s it. You just sit quietly and wait for them to take in what you’ve told them. Make sure they know you’re not going anywhere. And then, when they’re ready, you keep talking.”
With practice, Lakin said, the process becomes pretty natural. “It’s not rocket science.”
Takeaways for the caregiver
Throughout the conversation, Lakin continually refers to his team – in palliative care that may include the primary doctor, surgeon, specialists, mental health professionals, spiritual guides and more.
It’s a concept that can be of use to caregivers as they navigate the system – find people you trust and form a team to get through the experience. Some may be medical clinicians, but there are also the people who can help cook, walk the dog, and sit quietly while your loved one sleeps and you go out for dinner.
“That’s the palliative care model for us – rely on the team,” Lakin said. “We each have individual personal strengths and individual professional strengths. When you know your team’s professional roles and their personal roles, you can work together in great ways to get this stuff unknotted.”
“Underneath most challenging dynamics in families is fear or sadness. So surfacing that and trying to deal with that and process that is usually rule number one. And do it as a team,” Lakin said. “And then the other behind-the-door rule of palliative care is: you can’t fix everything.”
In the previous entry in this series, I highlighted Dr. Lakin’s encouragement for us, as caregivers, to forgive ourselves.
I’m making progress with that. But I’m still struggling with the other side of forgiveness: forgiving the clinicians who made the experience more devastating through their words and actions.
I’m still working through my anger about this – clinicians who spoke at length but didn’t listen; people who made promises they could not fulfill; people who painted a rosy picture when the circumstances were dire.
But there were also some wonderful clinicians at the very highest end of the communication spectrum.
One of them is a colleague of Dr. Lakin’s at Dana Farber Cancer Institute in Boston.
Dr. Joyce Liu was Mom’s oncologist. She exemplified the communication skills that Lakin described and it made a world of difference in some really hard moments.
She spoke clearly and compassionately, with no waffling or BS, and always made sure that we were keeping up. She trusted that we could handle the information even when it was hard, and she never shied away from telling us the truth. If she sensed that we were lost in the weeds or caught in our emotions, she made sure we caught up before going any further.
I will never forget the day when Dr. Liu told us that Mom was no longer in remission.
“This is life-limiting,” she said. In that moment, the dreaded possibility became hard reality. I broke down in sobs.
Dr. Liu stopped. She let me cry. She didn’t say anything. She put her hand on my leg. She let me know without words that she was there and wasn’t going anywhere until I was ready.
After a minute or two, I was able to gather my wits and she continued on.
Dr. Liu’s response was crucial in my ability to keep moving forward. In giving me a minute of silent presence, Dr. Liu gave me the space to process my emotion and then hear the rest of the information she had to give us.
I had always trusted her, but in that moment my admiration for her skyrocketed.
During my conversation with Dr. Lakin, Liu’s name came up.
“She’s lovely and she’s also effective,” Lakin said. “She’s got a good balance in my opinion of the softness that I think is required for oncology and also the effectiveness – being firm in guiding people through the hard stuff. Finding that blend is really tough. She does a very good job and I’m always impressed with that.”
A different person might have needed a different response in that awful moment, but for me, that response was perfect.
For those of you who are in the medical system dealing with life-threatening issues, my hope is that you find your own version of Dr. Liu – someone who can meet you where you are, with the communication that you need.