The power of family at the end of life

asco-logoI consider myself lucky to be the father to three wonderful kids: My oldest is now 15 and my twins are 9. They are indeed the light of my life. I get asked every so often, why did you want kids? It is a fair question, I suppose. After all, my partner and I relied on modern technology: egg donors, IVF, and gestational surrogacy. We thought long and hard about our own motivations and considered the expenses. Ultimately, we wanted kids for the same reasons my straight and married friends wanted kids — to love them and to watch them grow, and to become a family.

Family. I have been thinking a lot about that too. We all hope (dare I say, expect) that our families will stick together through thick and thin, be there to celebrate in each other’s joy, and be the people who will catch us when we fall. But, I know that there is no rule book when it comes to this, and I have known many friends and colleagues whose families were not the ones they were born into, but the ones they created for themselves. I have even borne witness to my own patients who either chose to go it alone, rather than have their blood relatives involved in their own care, or else went through their cancer journeys with their friends but not their family, simply because their family chose not to come. It seems like these more tragic circumstances are the ones that I recall, but then, I remember Rose.

Rose had been diagnosed with uterine cancer years ago. She had come in alone to hear her diagnosis and was alone when we made a treatment plan. She always asked appropriate questions and made sure I knew that the most important thing to her was her independence: “I live alone, and I like it that way. As long as I can do that, I am happy.”

I had assumed Rose was single, no kids, but eventually she told me she had been widowed, and most of her friends had already passed on. She also had a daughter who lived nearby, which surprised me.

“Why doesn’t she ever come with you,” I inquired.

“Why should she?” Rose answered, almost miffed.

And so it went — Rose would come in, I would examine her, clear her for treatment, and she would go to the Infusion unit. We got through six cycles, and if anything, Rose looked even stronger than when we met. She came in regularly for follow-up, and each time, I’d tell her she looked great, she would say, “Thank you for your kindness,” and she’d walk out the door.

Almost eight months later, however, things had drastically changed. She had presented to the ER with a distended abdomen and diffuse tenderness. She had developed a bowel obstruction, in the context of a large pelvic mass. Surgery was deemed not possible, and she was admitted to the floor, in the hope that her bowels would open up.

When I saw her, she was unrecognizable. She was thinner, and she was weak. I told her that this could not be cured. I had hoped she could get strong enough for treatment, for tumor control. “Will my life be like this?” she asked.

“Hopefully, if treatment works, it will be better. But, I cannot guarantee that chemotherapy will help the bowels return to normal.”

“Well then, I think I’ll pass. If I am going to die of this, I’d rather not prolong the suffering.” We talked some more, and we made plans to do as she wished. I changed her status to “do not resuscitate” and ensured everyone on my team was aware of her wishes not to have any further therapy. We talked about where she would like to be at the end of her life. She admitted to paralyzing anxiety at the thought of going home, and she requested to go to inpatient hospice.

When a suitable hospice facility had been identified, I made plans to see her again and finalize our next steps. Strolling in, I noticed Rose was not alone. There was a younger woman sitting by her bed.

“Hello, I am Dr. Dizon, Rose’s oncologist.” I said.

“Oh, hello. My mom has told me so many nice things about you,” she said. “I’m Lulu.”

I did my best to hide my surprise at meeting Lulu. All this time, I had assumed Rose’s relationship with her family was strained, yet here was her daughter, holding her hand.

“It’s nice to meet you too, Lulu.” Rose gave me permission to bring Lulu up to speed, to which she replied, “I know. I’ve seen the abdominal distention, the weakness. I knew the cancer was back.”

We talked about the plan: that Rose did not want to return home to live alone and preferred to live out the rest of her life in an inpatient hospice. I had assumed it would be met with agreement all around, but then I noticed Lulu becoming visibly upset.

Lulu then turned to her mom, with tears in her eyes. “Mom, I told you we would do this your way. I respected your independence, and as long as you were doing well, I held off on any offer to help, resisted the urge to call you and come over, and gave you the space you needed. But this is different.”

She went on to describe the sacrifices Rose had made for her, the struggles she bore so Lulu could be happy and successful. “I know you never want to be a burden to me. You never have, and you never will be. And now it’s time I put my own foot down. You are coming home, and I am moving in with you. Let me be with you not because I have to, but because I want to.”

They both cried as Lulu spoke — happy and sad tears mixed in the same moment. Rose agreed to come home and to let her daughter help. For a brief moment, I saw it — the reason I wanted children — it was in the look of unconditional love, and of pride, expressed by a mother nearing her end of life, and the daughter who, more than anything else, wanted to be by her side.

Don S. Dizon is an oncologist who blogs at ASCO Connection.  This article originally appeared in the Oncologist.

Image credit: Shutterstock.com

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