What my chronically ill daughter taught me about failure

When my chronically ill daughter was about five years old, a (hopefully) well-meaning family member got very angry at me for taking what they called unacceptable risks with her and her health. My family member went on to tell me all about a friend of theirs who had a similar-aged child who had a heart transplant and had since that time lived in a bubble. They were very proud of the friend because her son had never had so much as a cold since his transplant. His family had completely transformed their lives to keep him safe, showering in the garage, quarantining everything that came into the house, and building a safe environment for him, one that he never left except to go to the doctor.

I, on the other hand, took my child everywhere. We went to the park, the beach, McDonald’s, Disneyland, and on cruises. We traveled to other states and even went on the germ-infested airplane to get there. My daughter spent several weeks a year in the hospital with complications of her underlying disease. According to my family member this was a parenting and personal failure on my part. I was not doing enough, or maybe I was doing too much, and my daughter was not safe.

I was bothered by this at the time. I had made many choices regarding my daughter and her health. I had decided when she was a complexly ill newborn and later, even more complexly ill toddler, that she was not going to be defined by her limits, nor would she be a disease that clinicians talked about and wrote articles regarding. She was going to be a little girl, and she was going to live her life, every minute of it, for as many days as we had. I made a choice not to spend her life protecting her but rather to take calculated risks and let her live. My family member’s friend made a different choice; they wanted to focus on keeping their son alive no matter what for as many days as possible, to isolate him to make that time longer. I focused on quality; they focused on quantity. According to my family, my choice was obviously wrong and the other was right.

I have returned to this thought many times over the years. I now teach students, residents, and fellows on a palliative medicine service. We discuss this topic of quality and quantity all day long. We talk about goals and how we cannot define what is right and what is wrong for any given patient; it is something they need to figure out on their own. We have tools, many tools, to help facilitate these “difficult discussions,” but at the end of the day the patient themselves needs to answer the question of what they value more, quantity or quality.

Recently, my fellows and I were discussing goals of care conversations and why they are so difficult for clinicians of all types. We talked a lot about physicians being drawn to problems they can fix, and how when we can no longer fix people, we feel that we have failed.

This got me thinking about my daughter and the discussion I had with my family member many years ago. I shared the story with my fellows and we continued our discussion. I asked them which parents were right and which parents were wrong.

There is no right answer to that question. We were both, in our own situation and our own circumstances, correct. We both did what we thought was best for our child at the time. But I think the bigger question, and the one we discussed the longest, was, did one parent fail?

Did I fail because my child had been in and out of the hospital, had needed surgeries and procedures, or did I succeed because she had friends, she played, she got dirt under her fingernails, she shook hands with Mickey Mouse? Did the other parents fail because their son had no friends, he never was allowed outside of the house, he had never touched dirt? Or did they succeed because he had never spent another night in the hospital, they had kept him safe from all germs?

Failure is hard to define, yet we as clinicians define it all the time:

• Our patients fail to comply.
• They fail to follow their diet.
• They fail to use their insulin correctly.
• They fail to keep their many follow-up appointments.
• Their chemotherapy fails to put them in remission.
• Their disease fails to respond.
• The antibiotics fail to work.
• They fail to lose weight.

The list of their failures goes on and on.

I think one of the big questions is, are these things really failures, or are they unrealistic expectations, are they impossible tasks? How do we reframe how we view patients and their “failures”? Should we reframe?

I have a hands-on learning project I do with my learners. I give them each a set of building blocks, and they are all different: one gets Lincoln Logs, one Magna-Tiles, one standard square blocks, one a set of irregularly shaped blocks. They have two minutes to build a tall tower, they must build the entire time, and they must use all the materials they are given. Some have a large pile of materials and some small. They all struggle to accomplish the task. Some because they have too few blocks and cannot stay busy, some because they have too much to use and cannot in the time frame provided, and some because, honestly, Lincoln Logs were not made to build a tall tower. I deliberately set them all up to fail. And then we talk about how we define failure, and how we can reframe that.

Our patients come in all shapes and sizes, with vastly different tools and abilities. Some have too few resources, some have too much treatment burden, some have medical literacy issues; they all have struggles that we are often not aware of. None of them want to fail. Yet they do, and like my family member, their actions are judged based on how we define failure.

And what of our failures? Do we deserve the same grace to reframe? How should we define failure?

Is it failure when we:

• Offer patients interventions that are futile
• Don’t accurately prognosticate
• Give false hope
• Do not respond to our patient’s cognitive dissonance
• Have a patient who does not respond to treatment the way we expect
• Have a patient who chooses hospice or comfort-focused care
• Have a dying patient who wants to remain a full code

How do we decide which of these is a failure? Is it our choice?

How do we frameshift so that we acknowledge the patient’s goals and wishes, so that we are giving them all of the information in a way they truly understand, giving them the tools to figure out what their goals actually are, what they are and are not willing to give up?

But more importantly, with our desire to fix everyone, our type A personalities, our records for success, how do we reframe how we feel about failure? How do we learn to understand that a good death is just as much a success as someone ringing the bell after chemotherapy? Allowing someone to build a memory and a legacy for their child is just as much a success as keeping them alive in the ICU for another week until they die following an unsuccessful code blue. Letting someone go home and die in their garden surrounded by the flowers they spent a lifetime nurturing is as much a success as continuing TPN so they might be able to tolerate another round of chemotherapy.

Medicine is complicated. It is a hard job. That will never change. As technology gets better and better, decisions and choices will become harder and harder. Ethical dilemmas will become more common. We will continue to need to ask if we are harming or hurting. We will continue to need to define failure, perhaps through a very different lens.

Circling back, I have few regrets about how I raised my daughter. Although she has spent at least a thousand days in the hospital, had several massive surgeries, lives with a port, and takes handfuls of medicines, we have spent as much time having fun as we have in the hospital. She has been to 50 states and 11 different countries. She has been cage diving with sharks, SCUBA diving, and parasailing. She has gone to school. She has swum in multiple oceans. She has danced in the rain. She has lived. And despite what my (hopefully) well-intentioned family member thinks, I have not failed. She and I succeeded. I hope the same for my patients. Every single one.

Christine Marie Deeths is a family physician.