System Failure

She was not yet 22. She was dying of Pancreatic Cancer. She had a 2 year old. She had been hospitalized at a local hospital for over a month. She came to our inpatient hospice late on a Thursday. I met her early on a Friday. She was ashen and thin, yet bloated around her abdomen from the growth of so many tumors. I didn't expect her to live more than a week. But I figured we had a little time.

I called the Social Worker from the hospital that referred her to us. I wanted to get a sense of what kind of legacy building they had done with this young mom. What efforts had they put forth to help this mom leave behind a legacy for her young daughter who would have no memory of her Mommy. I asked, "Did you help her to write letters? Or make a video?" Her response, "Oh, we don't do that that kind of thing." Oh, I thought. You don't do that kind of thing? Then, what is it you do?

I called this young woman's father to get to know her family. He had been at our facility late the night before when she was admitted. He wasn't planning to come in until around 5:30 when I would already be gone for the day. We had a wonderful chat. We talked about his daughter. What she liked to do, who she was, what she was like. I asked if they had any video of her. He said, "No. I don't think anyone we know has ever owned a video camera." I asked if he thought his daughter might be interested in making a video for her own daughter. I wanted to make sure she wouldn't be upset by the idea, given that it was so late and she hadn't yet done it. He said she would love the idea and I should definitely ask her about it.

So, I did. She immediately lit up. She loved the idea. But she wanted to "look good!" She wanted to wait until tomorrow when she would have everything she needed to "do it right." Her cousin (who was also her best friend) was visiting with her when we talked. She started to assign tasks to her cousin: Bring my favorite jeans. And I want a wig; My mom will know the one I like. Bring my make up, especially lots of eye shadow. Get me a purple shirt...Her cousin had a better idea, "I'll make you a shirt with a picture of you and N (her daughter)." She loved that idea. We had a plan. Her best friend was thrilled to have "something to do." I called her dad back and he too was thrilled to be able to be a part of this. He was going to make sure her daughter would be here in the early afternoon so that her mom would be most alert. Her dad said, "That's her best time of day."

I went home that night confident that I was going to help this woman die well. That her daughter would be able to "see" her mom when she was older. That she would hear her voice.

The next morning she wasn't coherent. She was no longer speaking. She died later that night. The video was never made.

The system failed her. No one made this important task of legacy building a priority when she was still healthy enough to do it. She was kept in a hospital for too long before the idea of hospice was ever brought up. The system failed her little girl. She will never again hear her Mommy's voice. That is unacceptable. We must change the system.

(Names have been excluded and identifying details have been changed so as to protect confidentiality).