We are talking with professionals – experts who deal with end-of-life issues with patients and their families, to get their perspective on the all-important “conversation”. Below is a Q&A with Dr. Gary Lee, Physician specializing in Palliative and Hospice Care for over 25 years, and Coda Alliance Board Member:
Thank you so much Dr. Lee for helping us to understand how physicians approach the “conversation” with patients and their families. It is such a tough subject for all concerned. It looks like making it easier for everyone to have that conversation can inform more thoughtful treatment options and family communications.
Interviewer: Dr. Lee, what are the greatest challenges you face as a physician in having end-of-life conversations?
GL: The availability of time. Most physicians are not allowed to take time in a leisurely way to talk about it. And lack training about how to have that conversation. It is a skill that takes time, that takes practice to do well. Palliative care specializes in communication, understanding how difficult and emotional those conversations are.
Time to have a conversation is probably the biggest challenge experienced by the average physician in the clinic or hospital setting. As palliative care and hospice providers, we build time into our visits and work with a team of other specialists – chaplains, social workers, nurses – who have the time to talk with the patient and their loved ones. Most physicians also don’t realize that good communication is a skill that needs to be learned and practiced, just like other procedures they learn in medical school and residency.
Interviewer: Do you recall any particularly tough cases?
GL: I recently cared for a hospice patient with very advanced Parkinson’s disease and dementia. He was still living at home with his wife as his full time caregiver and support from his children and the hospice team. His family still wanted him to receive CPR and all the treatments associated with it if he died at home. He was unable to speak for himself, and unable to take care of any of his own basic needs. He needed to be fed puréed food one bite at a time so that he wouldn’t choke. I’m sure that CPR would have only caused him more pain and suffering; he probably wouldn’t survive CPR, and if he did, he would likely be even more disabled than he was. I had to find a way to help his wife understand that. I asked her why she would choose that for him, and she said that when a neighbor had a heart attack, she had CPR, survived it, and now she’s back to normal.
So I talked with her about how CPR was originally intended for people who are basically healthy to begin with, not for those who are debilitated from chronic illness. Then I asked her if she could tell me what things currently give her husband joy in his life. (I asked this as much for myself and the hospice nurse as for her, as it’s something that can be hard for us, as health care providers, to see.) Her response was that he still could enjoy sports on TV, especially watching the Warriors, and he enjoyed visits from his children and grandchildren.
I told her that our goal was to help him be able to do those things for as long as possible. I also advised her that doing CPR on him would not bring him back to the condition where he could enjoy these things, but it would cause him more suffering. She listened, but didn’t make a decision at the time. Our hospice team continued working with her and her family, though, and the patient did have a peaceful death without CPR a few weeks later.
Interviewer: Are there steps or processes you use to help you have the conversations?
GL: I am now doing Hospice, where some important decisions have already been made. But these steps are very helpful with any life-threatening health situation.
The most important principle is to listen more than you speak.
• Find out what their (Patients, Families) understanding is of their illness – what have they been told about their condition?
• What are they hoping that medical treatment will achieve?
• What’s most important? What gives meaning to the patient’s life? (This is where tools like the GoWish cards can be really helpful.)
• Set a specific time for a meeting of about 45 minutes to an hour with key people: Patient, Family Members
Then for the meeting itself, follow these guidelines:
• The setting is really important. (Find a quiet place, with comfortable seating for everyone. Unless it’s a private room, but patient’s bedside might not be the best place.)
• I prepare for the meeting – I review the medical history, talk with the other physicians taking care of the patient to know what treatments are being offered, and learn as much as I can about the patient and family. (Who is the patient’s decision maker, how are they coping with the illness, are there conflicts within the family, etc.)
• Make sure everyone who needs to be there is there
• Have folks turn off their phones / pagers
• Have Kleenex and water handy
After we’ve listened to the patient and family, then we have a sense of what they understand and what they’re hoping for. Then it’s time to transition and provide our perspective. We can fill in gaps in their understanding and clarify misconceptions. I try to use non-medical language and short sentences, leaving lots of space for people to digest what I’m trying to say.
Interviewer: Any specific learnings (aha moments?) that you have had about the process?
GL: As someone trained in the sciences and someone who lives in his head a lot, I had to learn, that at some point, folks have enough information – and train myself to recognize when people were responding at an emotional level. At that point, it does no good to plow ahead with giving more information, or with trying to provide reasons for pursuing or not pursuing a certain course. I had to learn to say things like, ‘It seems like this is really difficult for you to talk about,’ or ‘it looks like you might be angry.’ Or even, ‘help me understand how you’re feeling right now.’ That did not come naturally to me.
And that sometimes we need to take a break, allow some time for things to be digested, and schedule a later session to talk more.
Interviewer: How important is the conversation to you as you navigate the next steps for the patient?
GL: Medical care is so complex, with many choices. That makes the conversation critical to care. Our goal as medical providers, and that of patients and their families, should be to provide treatment that matches with the patient’s overall goals. That can’t happen unless there’s a conversation — in fact it often takes several ongoing conversations.
Interviewer: Thank you so much Dr. Lee. Communication is definitely key to helping patients, their families and their doctors thoughtfully and compassionately make end-of-life health care decisions.
For more information on end-of-life conversations, including the GoWish card game for use anytime, visit the Coda Alliance Website, www.codaalliance.org.