A Deep and Abiding Love

The story that I want to share with you today happened during my fellowship as a hospice and palliative medicine doctor. We were rounding on the adult inpatient consult service, and the patient was a woman in her early 20s who had a developmental disorder. She had cognitive delay. And I remember that she had the mentation of about, I feel like a seven or eight year old. So she was cared for by her father who was a physician. Bio-mom was not in the picture. And she had gone on to develop metastatic ovarian cancer, which was not an unknown thing with her condition, very unfortunate. And she had come into the hospital with a small bowel obstruction related to her underlying malignancy. The medical team had been talking to dad about the fact that she was not a candidate for systemic chemotherapies and that we were entering the terminal stages of the disease. She was in the hospital, was on TPN and sort of ongoing conversations about what her care would look like moving forward, knowing that we couldn't cure her cancer. 

Adam Marks, MD, MPH

And dad, maybe not too surprisingly, was very, very protective of her and sort of the information that was shared with her. Early on in our following, he said, I don't want my daughter to know anything about the fact that her cancer could no longer be treated. She knew that she had cancer and had been undergoing treatment prior to this admission. I think she had the diagnosis about a year at this point, but he did not want her to hear the words terminal, did not want her to hear the words hospice, certainly. And at this point, she was not comfort care. She was continuing to receive the hospital-based treatments as they were. 

And so he would come outside of the room to round with us when we came by. We would discuss some of the planning for the day, hear from him what was happening, and then we would go together to the bedside to chat with her. And again, he was very, very, I don't want to say controlling, but definitely tried to be a gatekeeper for the communication that was shared with her. 

One morning, as we came by to do our morning rounds, he came out and said, she caught me crying last night. She woke up and I was crying and she asked me why I was crying and I lied to her. You know, I said, oh I'm frustrated about something at work or there's this other thing that happened. You know, I didn't want to say I was crying because they can't treat your cancer anymore. You're dying. And so his question to us was, what do I do? Right. What do I do if this happens again? I'm obviously very sad about my daughter. And this could happen again. What do I, what do I tell her? And I, you know as a fellow, I certainly didn't have the words then to explore this with him, but one of our team members did. One of the NPs (nurse practitioners) on our team was able to guide him through what it would mean to do some gentle truth telling. And I remember she said, you know, you don't have to tell her that she's dying. You don't have to tell her that she's terminal. But you can be honest about what you're feeling. You could say, you know, I'm crying because I'm a doctor and I'm used to helping people and I wish that I could make you better. And I'm really sad that I can't. That's a way that you can be honest without having to engage her in sort of a frank conversation about her dying process. Because again, with this cognitive delay, he was worried about what she could and couldn't understand and of course, was wanting to protect her from scary information. 

So things continued in this fashion. She stayed in the hospital. We would follow for symptom management and sort of psychosocial support while we were plotting out some different options for her care moving forward. And a few days later, he came out again and he said, it happened again. She woke up and she found me crying and I used your words. I said, you know, honey, I'm a doctor and I'm so sorry that I can't get you better. I wish I could get you better. And she responded. She said, Dad, it's okay. I know that when I go to heaven that I'll see you again there. And he said, and then we had, then we cried together. She made this tacit expression of understanding. I know that I'm dying. I'm thinking about going to heaven, right? Like with a lot of our pediatric patients, she knew more than we thought that she did. But he said, this was such a moment of connection and intimacy between my daughter and I that we hadn't had before. Being able to share that was one of the most meaningful experiences that we had. 

And afterward, after continued conversation, she was supported at home on TPN for a while, and then transitioned to hospice care. And one of the things that we heard later from the hospice team is he mentioned this story again and again, as being this opportunity that he wouldn't have had, had the nurse practitioner on our team not given him words to use to open that door. And I think about this a lot, because not uncommonly we have family members who will say, you know, I don't want to tell my loved one what's happening or how do I tell my loved one, be it a child, be it a family member, be it something else. And, you know, and I'll use those words, right? We don't have to, you know, if we're worried about what someone's ability to understand something is, right? Then we should think about how can we provide the best information? I never obviously want to lie to patients, but there's always space to acknowledge sort of the emotional reality. 

And I think about what a gift it is to allow people in a family to be vulnerable with each other. Because my job is for however long someone has left, I want them to be able to engage with the people in their lives in a meaningful way. Almost everyone I meet says that, you know, for however long I have left, I want to focus on my friends, my family, for some people, faith. And if we're hiding things from people that we love, especially big things, that sets up a big barrier. And I think that can lead to alienation and I don't want that. And so this is a story I tell a lot to trainees, but sometimes to patients and families, you know, again, who are, in a very loving way, trying to protect their loved ones from some scary information, when in fact, I think that could be a barrier to being close during a really difficult time.