Speaking up about hospice is not a betrayal of our family members

I loved my father. His doctor was fond of him, too. Three times we nearly lost him, and each time he pulled through, weaker, but enjoying life.  When the magical recovery didn’t materialize, it was hard to believe that this was really going to be the end — hard for my family, and maybe harder for his doctor.

No one wanted time with my dad more than I did. I wanted it for myself and for my young sons. For them, Grandpa Hy was a relative newcomer on the scene. For years, he had been the faraway California grandpa they hardly saw. The one who couldn’t hear well on the phone. The one who was a bit shy, but had so much to offer if they could only get to know him.  That seemed unlikely until his health declined and my parents moved to an assisted living residence just ten minutes away.

Too soon to say goodbye

My boys would have 24 months to make memories with Grandpa Hy. They soaked in his stories about growing up in the “old country,” and he radiated joy simply being in their presence.  A deepening grandfatherly love fueled his desire to keep going. It may have been the magic that pulled him through those close calls, but even magic has its limits.

After yet another grim illness, grandpa moved in with us as he struggled to recuperate. Now he had a feeding tube — a way to pour liquid nutrition directly into his stomach when swallowing became too hard. So many systems were failing. The treatment for one ailment worsened another or caused some new malady.  Dad knew what was happening.

“The problem is,” he confided, “I moved East and fell in love with your boys.” By “problem,” he meant that he’d just started an important connection with his youngest grandchildren, and he wasn’t ready to say goodbye. Not yet.

I wasn’t ready to say goodbye either. Not even on the morning I found him sweating and short of breath in the middle of his third heart attack.  Later in the hospital, he pulled me close and whispered, “I don’t want to come here again.” But our conversation was cut short when he suffered a drug reaction that left him delirious for several days.

Accepting the inevitable

In the hospital, treatment continued for infection, for breathing problems, for anemia.  All of them failed. His body couldn’t absorb nutrients from the liquid the nurses dripped into his stomach on the days it didn’t make him sick.

Doctors poked their heads through the door to ask, “How’s he doing?”  None of them spoke frankly about what was happening to the gentle, 89-year-old man fading away in the big hospital bed. Their willingness to continue treatment fed my family false hope until we could no longer absorb it.

We could see my dad was dying. It was time to bring him home for the last time with hospice care to help us. Even he had said as much. But who was going to tell the doctor.

If his doctor was still willing to treat him, who were we to say stop? But not to stop was cruel.  Still, how could we be first to bring up hospice? Were we denying my father some faint hope that medicine still offered?

Initiating the hospice talk

Doctors are trained to make people better. I get that. And I get that sometimes families have the clearest insight about how they need to approach the end of life. Still, I hated what I was going to say. My heart squeezed hard when I told the doctor, “We feel it’s time for hospice.” She looked at me with naked surprise. “I had no idea you were thinking that way.” My insides collapsed. Was I a horrible daughter?

The doctor and I reviewed all the medical facts together to see the big picture  — something she simply hadn’t taken time to consider. And she confessed, “I guess he pulled through so many times, I thought maybe he’d do it again. But I can see it’s different this time.”

A sweeter ending

My dad lived with us for two months. Hospice care provided the essential support we needed to keep him comfortable in our home. We were away from the glare of hospitals. We were out of range from the misfires of medicine’s “big guns.” We were free to focus wholly on being together in our unbroken family circle for the few final weeks before it would be broken.

My father showed incredible grace. He showed us how to love until the very last of life. The time in hospice gave him the space to leave his family with poignant memories — the kind that change how you choose to live.

In a perfect world, every physician would have the wisdom to know when and how to discuss hospice care. Until the world is perfect, families need to know that speaking up first is not a betrayal of our family members. Starting that difficult conversation is a sign of just how much we love them.

Sherry Reisner is a health education writer and video producer. 

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