- Jeanne Lee
Post 3: The Secret Sauce in Palliative Care...
Updated: Dec 19, 2022
...is not empathy.
I sit down to have my first conversation with Mrs. A about her husband. Mr. A is a 73 year old gentleman undergoing third line chemotherapy (meaning, cancer grew with each of the two prior types of chemotherapy) for lung cancer that has spread to areas outside the lungs. Mr. A had received intravenous (IV) fluids one week prior for weakness and dehydration side effects following his last cycle of chemotherapy. He settles into his chair, quiet, staring out a window, occasionally turning to smile at me as his wife speaks for him.
I ask Mrs. A, "How are you coping with all of this?"
Mrs. A stares at me with a blank expression, then her face crumples and she cries out, "I'm so worried about him! What if he gets sick because he gets chemotherapy again?"
Now this is the turning point in a palliative care visit. How a palliative care specialist responds to "what if" questions can completely change the course of a person's medical treatment. And how a palliative care specialist chooses to respond can hinge on one factor - TIME.
Time is the secret sauce in palliative care.
In the case of palliative care (and other physicians' visits), time pressure is frequently indirectly proportional to empathy.
When a healthcare provider's focus shifts entirely to "productivity" (i.e. seeing as many patients as possible in a day), there is only time to do and to take action. There is no time to pause, reflect, and address how a person is feeling emotionally. There is no time to step back and look at the "big picture."
A palliative care specialist's day is usually structured much differently from other specialists' schedules. Palliative care specialists are asked to see people who have just received life altering bad news, people and family who are not coping well living with a serious illness, and people whose diseases are advancing and chipping away at their quality of life. Palliative care specialists are able to provide valuable input primarily because they are given the time to do so (Read Post 1: What Exactly Does a Palliative Care Specialist Do?).
When palliative care specialists are asked to prioritize "productivity," they lose the ability to provide real value.
Let me show you what I mean.
Facing time pressure, I respond to Mrs. A, "Can I ask what you are most worried about?"
"I'm worried that with the next chemotherapy, he'll get sick. He has the last two times. Maybe he'll have to go back to the hospital like he did the first time. What if something bad happens then?"
"It makes sense that you would feel worry. You and your husband have been through so much. Know that we're here to support you in any way we can. If your husband becomes sick again, we can help treat his nausea. We can arrange for him to receive IV fluids if he gets dehydrated. I'm thankful he's feeling stronger right now."
"Yes, thank you, he's very good today. Thank you for offering to help with the IV fluids."
Time pressure results in a 40 minute new patient palliative care visit. I hear about changes in Mr. and Mrs. A's lives in the past year. I assess Mr. A's symptoms, review each of his medications, complete his advance directives, and reassure his wife. Mr. A undergoes chemotherapy for two more cycles, each time becoming severely nauseated and dehydrated, requiring hospitalization after the second cycle. The medical team has a conversation with Mrs. A. They tell her this will likely happen again. Mrs. A decides to pause with the chemotherapy and brings her husband home with hospice support. He dies two days later at home.
Without time pressure, I respond to Mrs. A, "Can I ask what you are most worried about?"
"I'm worried that with the next chemotherapy, he will get sick. He has the last two times. Maybe he'll have to go back to the hospital like he did the first time. What if something bad happens then?"
"By 'something bad,'...do you mean 'die'?"
"Yeees? My husband hasn't been able to really understand what's going on for at least a year, since he started chemotherapy. 'Chemo brain' is what they tell me. What if I make the decision to continue chemotherapy, and I make the wrong decision?"
"Mrs. A...there is no wrong decision. All you can do is make the best possible decision with all the facts you have in a horrible, terrible situation...Can I ask you, what do you want most for him right now?"
"I want him to be comfortable and safe. He keeps telling me he doesn't want more chemotherapy, but I don't think he really understands. Maybe we could just stop... but his oncologist showed us his scans, and the cancer is disappearing! The chemotherapy is making my husband better, so how could I say no?"
"Have you and the oncologist talked about the purpose of the chemotherapy? And other details, like how long your husband is expected to continue the chemotherapy?"
Mrs. A shakes her head.
"How about prognosis? Would it be helpful for you to know what the average life expectancy is for people with the same disease your husband has, both for people whose cancer shrinks with the chemotherapy and for people who decide to stop the chemotherapy? If the difference is several weeks or several months, is this worth it?"
Stunned, Mrs. A pauses. "I need to know the answers to those questions."
"Yes, I think as much information as possible would help you make the best possible decision for your husband. When is his next oncology appointment?"
"Okay, let's write down the list of questions together, and you bring this list with you on Monday."
"Thank you. I don't want to make the wrong decision that ends up with him getting hurt!"
"Mrs. A, your husband getting sick or having a setback would only be because of his cancer. It's never because of you, and it's never your fault. It's the cancer's fault. You can only make the best possible decision you can make for your husband with all the information you have from specialists.
That being said...I have a difficult question for you."
"Okay. Go ahead."
"I know whatever decision you make, you will have to live with it even after your husband is gone. What would give you more regret - your husband stopping chemotherapy while you focus on comfort and safety at home, with the help of hospice folks coming to your house, until he eventually died at home? OR, your husband continuing chemotherapy, potentially requiring hospitalization for severe side effects, and worst case scenario, becoming so sick, he cannot get better in the hospital and he dies in the hospital?"
We sit in the silence that follows.
"I think I would regret it more if we stopped the chemotherapy and he were to die at home. I would regret it more because he's doing so much better with chemotherapy."
"And can you tell me what you mean by your husband "doing better"? You described your husband last year, how active he was, how he still played baseball, how he liked to drive his truck, before he started chemotherapy. Now you say your husband spends his days sitting on the couch and staring into space. He can do simple activities like wash his hands if he leans on you to walk to the bathroom and you show him how to turn on the faucet.
Sometimes chemotherapy is so strong, it doesn't just kill cancer cells. It hurts the good cells in the body and brain too. The CT scan might look better. Your husband as a person, as a human being, may not be better. He seems like he is a very different person now than he was before chemotherapy. I think when the oncologist says your husband is doing better, he's talking about the CT scan. What do you think?"
Mrs. A shakes her head in response. "I need to speak with his oncologist."
"Yes, please have a heart to heart with his oncologist. Make sure you go through your list of questions. Get all the information you need to make the best possible decision you can make for your husband's comfort and safety.
We discussed a lot today. Can I ask, how are you feeling about what we've talked about so far?"
"Honestly, I feel relief. You showed me a new way to think about this. It's a lot to process, so I still need to think about it."
"Yes. Please call the office if you think of anything else or if anything comes up with your husband. I want to support you and your husband any way I can."
"Thank you. Thank you very much for your time."
Absence of time pressure results in a 1 hour 40 minute new patient palliative care visit. I hear about changes in Mr. and Mrs. A's lives in the past year. I assess Mr. A's symptoms, review each of his medications, complete his advance directives, reassure his wife, initiate a "big picture" conversation, and explain when a person may consider transitioning to hospice support at home (Read Post 2: Five Major Ways Palliative Care Differs from Hospice). Mr. A goes to his oncologist the following Monday. His wife brings her list of questions, and she has a conversation with Mr. A's oncologist. The next day, Mrs. A meets with a hospice agency and realizes their goals are in line with what she now wants for her husband. She accepts hospice support at home. Mr. A does not return to the hospital nor the clinic. He remains comfortable in the peaceful environment of his home until he dies four months later.
After years of participating in and observing conversations with people who are given terrible news or struggling to cope with severe illness or asked to make difficult decisions, I have witnessed examples of impressively nuanced communication, expert explanations of complex medical situations, and moments of true empathy and connection even among people meeting for the first time. Sometimes, palliative care specialists were never involved. Always, though, these conversations took place when time pressure was set aside. Always, everyone involved allowed these conversations the time needed to come to fruition.