“I’m Just Not Ready”: Helping a Patient and Her Family Find Common Ground Regarding Hospice

“I’m Just Not Ready”: Helping a Patient and Her Family Find Common Ground Regarding Hospice

Don S. Dizon, MD, FACP, FASCO

@drdonsdizon
Oct 06, 2016

I had seen her as a consult a year earlier. At that time, Milly* was 82 years old and had been diagnosed with a recurrent ovarian stromal tumor—one that is typically seen in much younger women. Surgery was ruled out and a colleague from outside of Boston sent Milly to me for an opinion about medical treatment. I reviewed her case before I met her: no significant medical problems, apparently very active, and still living independently. Still, I was worried about her age, knowing that chemotherapy could be a double-edged proposition, meant to control her disease, but placing her at risk for significant toxicity.

I remember thinking to myself, Well, she is 82; she’s lived a good life. She’s probably ready to die. I prepared to talk to her about supportive care, and “letting nature take its course.” In my mind, doing nothing was a kinder option than treatment.

Then we met. I discovered that despite her chronologic age, she was in excellent condition and sharp as a tack. In fact, she looked several decades younger than her age. We talked about her life, her family, her home. She enjoyed walks on the beach, dancing, and her independence. Her family came to visit often and we laughed as she told stories from her life. I decided it would be inherently unethical to not present treatment options, so I brought up chemotherapy and other treatments we could try, including hormone therapies or even newer biologic agents. I still felt it important to talk about doing nothing, though, so I broached the idea of treating symptoms only, in order to avoid exposing her to risks from systemic therapy.

She looked at me with eyebrows furrowed. “You can’t expect me not to do anything,” she replied. “I have so much more to do. I am not ready to sit back and die.”

With that, I gave her some ideas and asked her to discuss it further with her local doctor. I concluded treatment would be reasonable, and in keeping with her goals and preferences. She had never received  systemic therapy, and I agreed that we owed it to her to try.

Over the course of the next year, her doctor would regularly reach out to me for an update on how our mutual patient was doing. Unfortunately, Milly’s tumor had not responded to the first trial of therapy, nor to the second trial. A third trial of antiestrogen treatment also had not worked, and she had embarked on a trial of bevacizumab. Through all treatments, she continued to do well, living independently and sustaining very few treatment toxicities—except on bevacizumab.

Whether the disease progressed or the treatment was too much for her, she had started to decline. There were falls in her home and increased forgetfulness, both of which alarmed her family. There was also evidence of disease progression as her abdomen swelled due to the accumulation of fluid. An abdominal paracentesis for symptom relief also showed evidence of cancer within the fluid.

Given these changes, and in light of her family’s concerns, her doctor reached out to me for my opinion. We talked and it really felt we had exhausted options and that continuing bevacizumab would be a bad idea. I agreed that hospice would be the best next step.

Soon after that, her son had reached out to me: “Mom would like to see you as soon as you can. Her doctor recommended hospice, but she wants to know if there is anything else we can do.”

Milly arrived at that appointment with her family. Although they were together, I could sense there was significant tension. Her daughter-in-law was the first to speak. “Mom is here because she wants to know her options, but we need to be realistic. I want her to be comfortable, now that she is at the end of life.”

“We want what is best for her,” they all said, making clear where the family stood.

As she spoke, I noticed that Milly had not met her daughter-in-law’s eyes. Instead, she stared at me and then the wall. She didn’t speak, she didn’t argue. Instead, she crossed her arms and “let” her family talk about her, as if she wasn’t even there.

I stopped the family from speaking and directed questions to her.  “Milly, what do you think about all of this?”

“Well, I want to know if there is anything else we can try? I know I cannot be cured, but I feel well. I can’t believe there are no other options.”

I started to talk about other hormone treatments, and then about clinical trials. I told her that none had any chance to cure her, that the likelihood of a response was very low, and the chances that one would hurt her was very real. Still, I persisted, and as we talked, Milly’s eyes lit up and she became more animated, even engaged, much to the chagrin of her family, who became increasingly uncomfortable that the conversation had turned from “hospice as the only option” to “here are a few options still available.”

At the end of our talk I turned to her and tried to place our conversation in the big picture: “Now, Milly, I need to be clear. This is not curable, and someday, it will likely take your life.”

“Yes,” Milly responded. “But, there is hope, right? Hope that I won’t die of this?”

I realized then what I was seeing: a family accepting that their mom was at the end of life and committed to making this time comfortable for her so she could live the rest of her life with dignity. But they had reached this point without Milly, who, despite her age, wanted desperately to live and who, in her heart, had not agreed to hospice care. She had not accepted the inevitability of her death. In fact, she needed to know that it was not a foregone conclusion.

For the next 30 minutes, I discussed this particular elephant in this particular room. Addressing Milly, I aimed to frame the family’s perspective—that she had declined, that treatments had been inactive, that she was facing terminal cancer, and that they wanted to do everything for her to preserve, if not improve, her quality of life. They saw hospice as a service to help them help her live, not to expedite her death. Her daughter-in-law started to cry, and then others did too. In their eyes I saw anguish and frustration give way to relief, that their feelings were being acknowledged, the situation brought out so starkly.

Then, addressing the family, I spoke as Milly’s advocate—she was not ready to stop. Their insistence on comfort measures and hospice was a sign to Milly that they had given up on her. That, because she was 85 years old, she should be ready to die. It was Milly’s turn then to cry. “It’s true—I feel like you’ve all given up on me,” she said. “I don’t want to die. I am not ready.”

As they cried and talked, I realized that sometimes, this is the best we can do. We can help families like this one and patients like Milly recognize each other’s perspectives, especially when it comes to advanced illness. Doing so can help families navigate a very difficult time, and hopefully, forge a common way forward.

I realized that there is not an age when one is ready to die. As an oncologist, I’ve spoken with women in their 40s, 50s, and 60s who have met the end of life with grace and with relief—relief from the suffering that often accompanies terminal cancer. But, I’ve also met women like Milly, who are just not ready. To assume that as we get older we become more ready is a mistake. I also realized that as much as I wanted to give Milly a good option, there were none.

Ultimately, I don’t want patients to die of their cancers. Like everyone who has been touched by cancer, I want cures, and short of that, I want to convert this illness from “terminal” to “chronic.” Fortunately, I think we are making progress in this, especially within gynecologic cancers. But for some, like Milly, this progress will not happen quickly enough.

*Name and identifying details changed for patient privacy.

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