Quote of the month:
“The great gift of human beings is that we have the power of empathy.” Meryl Streep
Last year, during one of my lectures about end of life communication, a doctor asked me some questions about hospice care. He explained that his question was about his wife who had end-stage lung cancer. They were still trying to fight the disease but the disease was winning. He wanted to know more about the option of hospice and if it would be appropriate for his wife. I told him I would speak to him in greater detail after the lecture.
After the lecture, he began to tell me about the medical condition and the medical treatments that his wife was going through. This was a man who loved his wife and was desperate to keep her alive. After listening to the story, I asked what his wife would say about continuing with the treatments vs. going on hospice. I wanted to hear her point of view. I asked him directly, “What would your wife tell me about what it is like to be going through this and how does she feel about it.” He then began to tell me about what he was experiencing and how exhausted and overwhelmed he was. I realized I was talking to someone with incredible caregiver fatigue. I listened and tried to be supportive. I recommended support group options and other services that might help him with his fatigue.
Then once again, I asked about how his wife perceived her experience. He couldn’t answer. Again it became about medicine. It was as if he was reporting on an intriguing patient. I found it fascinating that he could not begin to explain or to experience what his wife was feeling. In the hour I spent with him, he could never say my wife would say … or my wife would want… This was not because he didn’t care about what she was experiencing, it was because he cared too much that he couldn’t begin to comprehend what was going on inside her.
So many things were going on. The first issue I was dealing with was denial. He didn’t want to believe that he couldn’t fix this for his wife. Doctors want to heal and even more so, they want to heal the ones they love. He was trapped inside his profession and could only focus on what medicine had to offer his wife. He kept dancing on the edge of the topic of death by asking about what hospice might have to offer but ran away from it as I described the benefits of hospice. To choose hospice felt like choosing death. And he couldn’t begin to accept that death would be taking his young wife very soon.
The second issue was that he was treating his own wife. He was one of her doctors so he had disconnected from her by making her the patient. This is why doctors aren’t supposed to treat their own family or close friends. When a doctor treats their own loved one, he can become blind to what is in front of him. This gentleman was a good doctor and he would have put any of his other patients in this end-stage condition on hospice. But he couldn’t see that as a valid option for his own wife. He was blinded by his love.
The third issue was that he couldn’t empathize with what his wife was feeling. It hurt him too much to begin to imagine what this was like for his wife. This was not a man who couldn’t speak of emotions. He expressed his own emotions about the situation freely. But he couldn’t tap into his empathy for “his patient” or “his wife” because it was too painful. Our brain can only feel what it can survive feeling. It shuts down when it becomes too much. His deep and profound pain was palpable and I hurt for him.
My heart hurt for his wife as well. I tried to explain that his desperate need to cure her was limiting her option of having good end of life support. (Okay, I didn’t say it quite that way.) He told me her pain was not being managed (in technical terms), even though he was trying to help her. I explained that hospice is really good at pain management and he should use them as a resource. I also explained that hospice provide the intangibles such as support for the family, support for him and a safe person for his wife to talk to about her hopes and fears. When communicating about the upcoming death is forbidden, the patient misses out when they are unable to say what they need to say. Her voice wasn’t being heard in the treatment decisions and her existential suffering wasn’t being addressed.
This is one of the best gifts of a hospice. The person has a safe person to talk to when she can’t talk to her own loved one. Or if they don’t have a hospice worker, a good friend or family member can be this person. I wish that the spouse could be this person, but often it is too painful. This doctor/husband was not unusual. He could not bear his wife’s suffering. I meet many people who can not talk to their own loved own about dying. That is why I am there. That is why we have social workers and chaplains in hospitals. Doctors can also be this safe person if they have the courage to take on this role.
I don’t know if he was able to get some support for himself and his wife and if her pain is being managed. I hope so. I know that I can only go so far with someone in denial. I can only dance on the edge of subject with them so they won’t feel so alone or afraid. Eventually, the person will come closer when he or she is ready.
When we want to help others we need to have the courage to:
See the suffering
Acknowledge the suffering
Do something about the suffering, then
Heal our own suffering