Begin hospice? Or try a promising-but-unproven therapy? It's an agonizing decision for patients who have no standard options and are ineligible for trials. How you present those options plays a major role in their ability to make informed decisions in keeping with their values. The fictional soliloquy below, based on a true story, illustrates how your words may guide and support patients throughout their lonely journey of decision-making.
SETTING: Dusk. A middle-aged patient sits at his kitchen table all alone, staring at the spiral notebook with notes from his doctor visit earlier that day. A few wadded tissues are off to the side. He hears his doctor's voice in his head.
DR. ATZ (voiceover)
Power lies in choosing how we play the hand life deals us. You can choose what you do now.
How do I make this overwhelming decision? Impossible! (He sets down the notebook and looks out the window at the setting sun.)
The drug is my last hope—if it really is a hope. It's too new to know if it helps or hurts patients like me. I don't wanna be a guinea pig. But if I don't take it…we're talking hospice. I'm not ready to die; I guess I have to take the drug.
The drug is promising—not like trying some kooky cancer cure. And it won't be like taking chemo, because side effects are mild in most people. (grunt) Most people. That treatment has made some patients sick…sick enough to die.
Oh, God. (He clasps his head in his hands.)
How am I supposed to figure out what to do? More than I don't want hospice, I don't want to take the drug, get sick, and die anyway. There must be something better….
DR. ATZ (voiceover)
I wish we had something better to offer.
Dr. Atz told me to focus on making the best decision. I've made difficult decisions before. She said this is just one more decision. Nuh uh, this is not like any decision I've ever made. Before today, we never mentioned hospice. I…(sniff)…want…(sniff) to live. (sobs, briefly) I'm just not ready…to give up…to stop fighting.
She tried to say there are different ways to fight cancer. Sometimes patients fight by doing treatment. Other times patients fight by optimizing quality of life. Both sound like losing ways for me to fight my cancer. I've never felt so powerless. (He looks at his spiral notebook.)
"Power lies in choosing how we play the hand life deals us." Dr. Atz is right: I have the power to choose. I can weigh the pros and cons of each option, giving extra weight to things that matter most to me.
(He gets up to flick on the wall light switch. He sits back down, turns to a blank page, draws a vertical line down the center, and writes at the top, "drug" on one side and "hospice" on the other.)
First, the pros of taking the drug. If it works, I get my life back. (Under the "drug" column he jots down, "It may work.")
Dr. Atz wouldn't have mentioned the drug if she didn't have hope it might work. Right? The man in the magazine article went from death's door to clear scans and good health. That could be me. (He smiles weakly for a moment while adding stars next to, "It may work.")
Besides, if I go for the drug I won't have to think about the "H" word (hospice), let alone have the "H" discussion at home, with those sad faces that make me feel awful, like I let everyone down. (Under "drug," he scribbles, "No 'H' talk.")
Dr. Atz warned me talking about hospice is sad, even for patients confident it's their best choice. She emphatically insisted hospice is about living and encouraged me to make a list of things I'd do if I stopped treatments. Wow, it's hard to remember life without treatment. (faint smile) So many things I'd love to do! (Under "hospice," patient starts writing a list of activities he's postponed or abandoned because of treatment. He freezes mid-word. His smile fades.)
I'd rather feel crummy and go to the clinic every day, if treatment gave me a chance to survive. That's the kicker, eh? Nobody knows if the drug increases my chance of survival. Oh, I hate the uncertainty.
Although…uncertainty means there's hope, which means uncertainty is good. Ah, maybe now I know what to do. I'm pretty sure I'd rather live with the uncertainty of treatment than live with the certainty of hospice. The minute I start hospice, I'm dying.
DR. ATZ (voiceover)
(firmly) You are not dying now, whatever you decide about treatment.
Fine. I'm not dying today. I'm dying within 6 months. That's the official life expectancy in hospice. How can I enjoy life while expecting to die? I can't imagine living without some hope of surviving. (He flips back to his doctor-visit notes)
DR. ATZ (voiceover)
You can expect one thing and hope for another.
I always thought hospice patients were hopeless. Then she told me stories of patients in hospice who prepared their funerals down to the readings and songs yet kept hoping to recover. Expecting the likely outcome while hoping for the best, they thumbed their nose at cancer by enjoying life in ways they couldn't while in treatment.
Most of those patients ended up dying. But not all. One of her patients recovered, unexpectedly and inexplicably. A few patients stopped hospice to enter newly opened clinical trials. Many lived longer than expected, surely longer than had they continued treatment that didn't work.
DR. ATZ (voiceover)
In hospice, the only hope patients must let go is hope that treatment can help their cancer.
I get it. There's always hope. Good to know. (sigh) Now I'm back at square one.
Maybe I should try the "regret" exercise Dr. Atz mentioned. It's designed to stir emotions that might help me decide. I'm supposed to think about each option separately, imagining how I'd feel if I had the worst outcome and if I had the most likely outcome.
Which worst outcome would make me regret my choice more: Getting sick from the drug without it helping my cancer or getting sick from my cancer in hospice too quickly for any quality time? Hmmm….
Lemme try that exercise again, only this time looking at the most likely outcomes. After all, according to statistics, the most likely outcome is the most likely. In hospice, the likely outcome is dying. In treatment, the likely outcome is, ugh, dying. At the end in hospice, would I regret not trying the drug? Hmmm…. At the end in treatment, would I regret the time I'd spent at the cancer clinic or being sick from treatment? Hmmm….
(His eye catches the large refrigerator magnet with block letters that say "Triumph over cancer is measured by how I live, not how long.")
Since our first meeting, Dr. Atz kept telling me her goal was to help me live my best life every step of the way. Whatever my test results, she always reminded me clear scans were not the goal…they were only a means to our goal. Cancer made me realize that "now" is all any of us really has—sick or healthy...that every day is a gift. How do I want to use this gift of today? Clearly, there's no right answer…or easy answer.
Dr. Atz believes there is a best answer for me—and I'm the only person who can find it. The last thing she said before I left her office was to listen to my hopes, because "Where there is hope, there is life."
Maybe the key to solving my dilemma is figuring out which hopes can help me live my best life now. Will I find the most meaning and most happiness by holding on to any sliver of hope of treatment? Or by letting go of that hope and by making quality of life my number one hope?
I wish I could have both hopes. I can't. It comes down to deciding which hope takes priority, which one I hope for more. (long pause)
Given my chances with each option, and the pros and cons of each option, I think I know. As much as I want to stop thinking about this and be done, I'll wait at least a day before doing anything. Then I'll call Dr. Atz's office with my decision.
This view from the other side of the stethoscope doesn't reveal what the patient decided. Without knowing his top-priority hope, it's impossible to deduce from the soliloquy. That scripted ambiguity highlights that the best decision is not determined by statistics or medical information, but by patients' ability to weigh the pros and cons of each option in the context of their values.
The best you can do in the face of uncertainty is to facilitate your patients' efforts to choose. By sharing insights and decision-making tips along with medical information, you help them process the information and reflect on their values throughout the decision-making. Then, whatever the outcome, everyone can take comfort in knowing patients took the best path for them, a path lined with the hope that enabled them to live as well as possible.