My Daughter's Palliative Care Doctor Gave Me Permission to Hope
Hope, by its very nature, is never false
In 2016, we admitted my daughter to a hospice program. It was roughly eight months before she died and she looked strong and healthy. She’d been fighting a rare form of pediatric cancer for four years. Her lungs, abdomen, and bowel were filled with tumors and her oncologist was out of ideas.
Beside him, two computer screens displayed CT images of Ana’s abdomen and pelvis. Even I could see the dark shadows that shouldn’t be there. There were so many of them. “I’m sorry,” the doctor said in the tiny exam room on one of Ana’s final visits with him. “Do you have any questions?”
Ana had a question. “Will dying hurt?” She asked. She’d just turned 15.
The adults in the room exchanged silent, tormented looks. “We have all kinds of things that help with pain,” he told Ana gently and gave me the contact information of the hospital’s head of pediatric palliative care.
We had an initial in-person consult with him and some of his staff, then we’d gone on with life. There were no more scans for Ana, few medication changes, and no more talk of the next surgery. We were finally free from the hospital — at least while she was well enough to function — but this brought no relief.
In spite of her rapidly advancing disease, Ana was excited to start 10th grade.
She didn’t want to talk about cancer, so we avoided the topic, quietly reordering our schedules and lives to accommodate whatever she needed.
She had profound anemia. This made her weak, breathless, and exhausted. She was so tired that she slept constantly throughout the day. She’d begun having trouble breathing as the tumors in her lungs grew. She had fevers and night sweats — another symptom of cancer. The new doctor, the one who cares for dying children, advised me to give her a cocktail of Advil and Tylenol for the fevers.
She went to parties with her friends, performed in shows, and began talking about what colleges she was interested in even as she grew sicker.
I wanted to talk to Ana about the reality of her illness. I didn’t want to give her false hope. Listening to her plan for college when I knew she likely wouldn’t live to graduate high school felt dishonest. But whenever I mustered the courage to bring up hospice, she shut the conversation down quickly.
“Do you think I have a chance to grow up?” Ana asked one day. Before I could respond, she’d said, “Do you think I’m going to die?”
I was incredulous and furious at the universe for putting me in the position of having to answer questions like these from my child. I could never muster the strength to say that yes, she was probably going to die.
“I don’t know, Ana,” I said. “I have so much hope that the new drug combination your doctors are trying will work.”
I defaulted to hope because I did have hope, even though I’d clearly seen what was happening inside her body. And hope seemed like something she needed from me. It was definitely something I needed to express. Still, I worried about misleading her. We’d always been honest about her illness. Then in its final stages, after years of treatment, pain, and heartbreak, it appeared she was going to die after all.
I had no idea how to talk to her about dying, so I turned to the one person who could potentially answer my questions about how to help Ana — her palliative care physician, Dr. Elisha Waldman. At the time, Dr. Waldman was the head of the pediatric palliative care team at Morgan Stanley Children’s Hospital in NY.
I sent him an email. “She’s talking about her junior and senior year of high school. She’s even planning to visit some colleges. I don’t want to give her false hope, but I don’t want to force her to confront her own mortality or to somehow be okay with the fact that she’s dying,” I wrote. His response gave me a tiny bit of solace during my darkest hour.
“One of the most wonderful and amazing attributes of the human soul is the near impossibility of crushing all hope. This is a gift. I don’t know if it’s God, or nature, or evolution, nor do I care — it is a beautiful and vital part of what makes us human.
We have actual published data that people (patients and parents alike) can (and want to) hear frank, stark information about their prognosis, are able to internalize the fact that they are going to die of their disease, and yet still simultaneously maintain some sort of hope.
This often befuddles clinicians, and I am often called to help because a parent or a child doesn’t “get it.” I find myself in those situations explaining to my colleagues that the ability to simultaneously grasp one’s own mortality while still hoping for something is one of the beautiful paradoxes that makes us human and that allows us to function.” — Dr. Elisha Waldman
This was eye opening advice that shaped the way I approached helping Ana through the final months of her life.
I encounter the term “false hope” often. It pops into conversations or creeps into my Facebook feed. It’s a common way of explaining denial. But it’s often accusatory, judgmental, shaming. Hope is not the same as denial. When someone is going through something they might not survive, saying I think everything will work out or I know you will survive this health scare or of course you won’t lose your house is not the same as saying, “I’m sorry you’re going through this. I hope you get some relief.”
That last statement isn’t a platitude. Does it allow someone to remain in denial rather than fully confront the thing they’re facing? Perhaps. It’s true that denial can be destructive, but there are some things in life that are impossible to face head on. You have to come at them sideways, especially when the potential outcome is horrific and unimaginable.
I hope that the medication will work, I’d told Ana. Dr. Waldman’s words gave me permission to be carried by Ana’s own unwavering hope that she would live. Because, why not? We weren’t denying that her illness was serious. She was admitted to a palliative care program, after all. We were following her lead. We were carefully balancing hope with despair.
Healthy, normal hope — the kind the lets you function in the face of incredible adversity — is never false. I needed Dr. Waldman, a man whose daily work existed beneath the umbrella of this contradiction, to point this out. Once he did, I became much better at letting Ana take the lead about what she wanted to talk about during those final months.
Dr. Waldman made it clear that being enrolled in hospice did not mean that all hope was lost for Ana. His team simply provided another layer of support during a time when her health and future were incredibly uncertain.
I think of him whenever I hear or read the term “false hope” and I cringe at the phrase, particularly when it’s obvious it has more to do with denial than hope. Having hope in spite of terrible odds is part of being human. Hope, by its very nature, can’t be false.
Watching Ana live every minute of her life up until the moment she couldn’t proved this to me. We hoped she would beat cancer and so did she. Her hope was so powerful that her death took many people by surprise. She’d pushed on without complaint. She’d been angry at the disease and her way of showing it was to live her life to the fullest, cancer be damned.
Remembering this period of my life, of Ana’s life, makes me incredibly sad. It also makes me fiercely proud of her. It reminds me that I can hold onto hope even when I’m feeling exhausted and heartsick and scared. I remain profoundly grateful for Dr. Waldman’s advice which helped me be present for Ana in exactly the way she needed me to be.
Your doctor's insights should be part of all doctors' medical training. Hearing something wise and thoughtful like that early on in our journey would have been very helpful for us.
Thank you for sharing all of this. So beautiful.