Over the last 15 years, my nursing practice has been in palliative oncology. And when I describe my work to friends or family, I am often asked the same question: “How do you do it?” The question they are actually asking is, “How do you deal with the emotional aspect of that kind of work.” I’ve had nurses, both those who work in a different area of nursing and those with less experience in oncology, ask the same question. Their question is less about emotion and more about the logistics of it.
Measuring nurse proficiency is easier using hard skills, such as starting an IV or calculating dosage for an infusion, than measuring the softer skills, such as how to answer challenging questions. I thought asking myself and a close colleague, “How do you answer difficult questions?” would be an interesting communication challenge. In particular, we sought to focus not just on the times when our communication was effective, but when it was flawed and how we recovered.
Colleen Roohan, a geriatric NP, and I are co-owners of a nurse consulting business that focuses on support of patients and families facing a new diagnosis, a change in condition, or end of life. We get a lot of questions. Recently, we sat down together and posed to each other some of the questions that challenged us.
Question: A patient with advanced cancer who is hospitalized and dying asks, “Should I have my daughter come now? She lives far away, and I don’t know when she should come.”
Ann: This is always a tough question because embedded in the question is a request for a prediction of how much time remains. If I tell the patient that her daughter should come now, am I predicting that she will die soon? If I say it’s okay to wait, am I predicting she has more time? How much time a patient has is truly impossible to know.
Another part of the question is a request for permission. Sometimes the patient is asking us to tell them what to do. I try to give objective details. “The fact that you are not eating, that you are in bed all of the time, tells me that the end is getting close. Have you asked your daughter what she wants to do?”
I once had a patient who was trying to figure out if she should have her daughter come back from college. Her son was at the bedside, and became confrontational when I noted his mother’s condition. “You are not God,” he said. “You can’t tell me she won’t get better.” My response was this: “I’m not telling you this. Her body is telling me.” He remained confrontational but was able to take that information and incorporate it into his understanding of his mother’s condition.
Colleen: When I get this question, I always have to take a deep breath. I really want to answer the question, but like Ann said, it is impossible to predict an actual timeline. I ask how the daughter will feel if she misses seeing her mom before she dies.
There have been times when a loved one is comfortable with having said their goodbyes and prefer to wait and travel for the funeral. I think this is a time to question the question: Why are you asking me this? Are you worried about your daughter? Have you told her what you want to say?
Question: Have you had a patient where 2 family members were in an entirely different place? How do you answer those questions?
Colleen: When family members have very different understandings of the patient’s condition is never easy. On one hand, the last thing I want to do is force someone to come to grips with something they just aren’t ready to accept. When someone says something like, “We just need to feed her and get her stronger,” I know they are afraid of losing their loved one. Fear can make it impossible to take in reality.
What may be obvious to us clinically may not be obvious to the nonclinical family member. I try to gently point out what I see. For example, ‘I see how much weight your mom has lost even though we’ve tried to get her enough nutrition, and while she has been so weak, she hasn’t had chemo so her cancer has continued to grow.’
I always try to think of the saying “inquiry before advocacy.” Considering why the family member is asking the question helps me figure out the best way to answer it.
Ann: It can be mind boggling sometimes! Recently, I was working with the daughter and son of a woman with widely metastatic colon cancer. She had been through the wringer with several lines of treatment and now had no more treatment options. The oncologist recommended hospice. When I spoke to them, the son immediately told me the hospice nurse had said some patients get better when they go on hospice. Of course, there is some truth to that. Back in their own homes with familiar sounds and smells and family around them, patients may look and feel as if they are better. But in his mind, he meant she was actually going to get better, as in her cancer was going to go away. He was very sweet and sincere, and obviously loved his mom and wanted her to live.
I could have been blunt and told him he had misunderstood, there was no way the hospice nurse would say that. Instead, I asked what he thought “getting better” meant. And then, as in Colleen’s example, I went through all the things I saw happening and put it in context. I explained that she might have more energy than in the hospital and so may appear stronger, but her cancer was continuing to grow without treatment. Hospice was not going to make her better.
Question: What do you say when 1 family member wants to hold back on giving morphine, even though the patient is uncomfortable, while another family member wants you to give more?
Ann: This conflict is not all that unusual. There are so many misconceptions about the use of morphine at end of life. I approach the issue through the lens of managing symptoms but also take into consideration what the patient may have said about how they wanted their pain managed. A patient may forego or delay the use of morphine so they can be more alert. One patient I had insisted on waiting to start morphine until her brother arrived so she could say goodbye.
But I believe the conflict between family members is usually a matter of clearer education. Ensuring that everyone understands that morphine is used not just for pain but for breathlessness is important, and educating them on how uncomfortable breathlessness can be. The situation can get confrontational, and I have to remind myself sometimes that the anger and confusion is more about fear and grief than it is about the use of morphine. But keeping the focus on addressing symptoms sometimes lessens their resistance.
Colleen: Often I spend time explaining the double effect. I try to help them see that while our focus is on symptom management at the same time we accept that giving morphine for pain may also lead to more sedation and respiratory depression. I agree with Ann and emphasize that our focus is always on symptoms.
Recently we had a family where 2 of the adult children were in conflict. They had a history of personal conflict before their mother was at end-of-life but it became magnified at that time. One insisted their sibling was trying to speed up their mother’s death, while the sibling insisted that they were deliberately making it so that their mother suffered. I explained why morphine is used and that the focus at this time was on keeping their mom comfortable. In spite of their personal conflict, they both truly wanted what was best for their mom. By explaining when and why morphine would help her took their personal dynamics out of the equation and focused it back on their mom.
These are just a few of the many situations that can be tricky to manage. One of the most important things to remember when faced with a complicated or difficult question is to be certain you have a clear understanding of what is being asked. Sometimes I get so busy figuring out the right answer that I haven’t made sure I know what the question really is. That is the genesis of the saying “Inquiry before Advocacy.”
Some other things I remind myself of are: If I’m not certain of how to answer a question, it is okay to say ‘I don’t know.’ It is okay to ask why they are asking a question, in fact asking why can clarify the question. Finally, it is okay to go back and say ‘I don’t think I answered your question very well. May I try again?’
Unlike the TV show “Jeopardy,” there is more than one way to answer a question. And, the buzzer is not going to go off and keep you from figuring things out.