Living With Dying articles

As Dr. Joshua Lakin acknowledges, doctors are often nervous that they will take hope away from their patients if they acknowledge end-of-life issues.

But, he said, in his experience patients are capable of holding two potential futures in their mind.

“My experience with people who are seriously ill is that most people can hold both. They can sit there with their hopes – the things that even if they know it’s a long shot or a miracle that they’re hoping for – they can hope for that, but they can also process a Plan B. They can think, if I don’t get what I hope for, then what do I hope for?”

“I hope that you get cured too. That’s what we all hope for. But in case that doesn’t happen, what else do you hope for? And how can we prepare for those hopes? Or even if we get nothing that we hope for, how can we make sure that we’re ready in case that happens? Because it could.”

It’s important for a doctor to be able to follow this duality of thinking.

“You should be doing your best to [cure the disease], no doubt about it,” Lakin said. “It’s important for patients to leave no stone unturned. But at the same time, recognize that sometimes it’s a disease that’s out of control … You can always leave it as a hypothetical. You can be like, ‘In case this happens. We’ll hope for this, but in case that happens, let’s plan’.”

“My experience is that most people, unless they have a real significant anxiety disorder or something, or a past history of trauma – most people can put a wall up between those two and be like, Yes, I’m hoping for all this great stuff. I want to get to this wedding, I want to be here for this summer.”

Lakin said he recently met a patient who knew he was going to die. The patient said, “I’m really sick and I know I’m not going to make it, but I hope I can work this summer. I’m already retired, but I want to go back and work for one more summer.”

Lakin’s response? “Okay. I hope for that too. That would be awesome, we can work for that goal. If you really want to go back to work this summer, that’s fantastic … In the meantime, let’s talk about what happens in case that doesn’t happen. And he said, Perfect let’s do it.”

“People are able to do both. And doing this doesn’t mean to most people you have to give up. They go back and forth. ‘I feel sad that I’m not going to get there and I feel sad about that.’ And other times they’re like, ‘I’m going to make it!’ So it’s an ebb and flow, waves kind of experience for most people.”

Teaching doctors to communicate

After my in-person interview with Dr. Lakin, I realized that I hadn’t asked one of the most important questions: How do you train clinicians to be better communicators?

He emailed me this response (edited for length):

You bring up a good question and something that I am learning now out of a fire hose – how to teach clinicians (all types) to communicate better about advancing serious illness.

The short answer is that I do believe it is a skill and that it can be taught. There are core elements of skills, knowledge, and attitudes in good communication that people can learn, practice, and improve upon. Some examples include the use of silence, repeating and clarifying information, addressing emotion rather than spewing facts, and plenty of words to be used as tools and as medicines.

Certainly, some people are more natural at learning it than others but I do strongly believe that we can teach people to be better. I am learning to teach (and to communicate) from a number of master communicator teachers here in Boston – Vicki Jackson, Susan Block, and James Tulsky (and many people that they have in turn trained) – some of the methods we use to teach these skills. These methods include some lecture but mostly a lot of time practicing through drills and in role play situations using tested structures and core concepts in communication.

Ego is a complicated thing in medicine; it has an important place and creates complex barriers.

We have to recognize that communication is core to what we do and we should pride ourselves on getting better and being good at it as that is what is good for our patients. A frame shift for our ego to feel good about getting better, rather than feeling bad about not being perfect.

Yes, it might be a more scary task to think about learning than, say, the life cycle of a relevant human parasite, but it is an important learning point nonetheless.

I do believe medical schools are working hard to teach communication and my understanding is that they are continuing to recognize the importance of this and are emphasizing it more and more. I wish I had data to back that up but I don’t, just what I hear.

I think though that there is another challenge around touchier subjects such as end-of-life in that it also brings in the aspect of emotional intelligence – how well we are able to know our emotions, read those of the person with whom we are communicating, and modulate both in order to guide that information transfer and the experience of both parties within that exchange is another level deeper in the communication challenge.

Also I think a skill than can be taught, but a tougher one. These extra emotional elements are really the piece I see (and hear about) doctors struggling with. It is a hard task to do – handle the science, handle the emotion, make that into a coherent plan, and then communicate that plan in ways that many diverse types of people can hear it. A daunting task.