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Learning The Value Of Palliative Care Too Late

Waiting too long to initiate palliative care or hospice may lead to regrets later.

As I headed down to DC for work the other day, my cab driver pointed out something I’d never seen. “See that limo over there?” he said, pointing to a white stretch Towncar emblazoned with a green logo. “It’s from a cancer treatment center. They bring their patients to and from the train station in a limo. Isn’t that nice?”

As he spoke, a tall frail woman struggled out of the car, assisted by the driver and an older female companion. She carried the telltale oxygen tank of a lung cancer patient. As she and her companion moved slowly toward the door of the train station, I was instantly thrown back into my mother’s last weeks. The woman bent over and reached for the doorframe, gasping for breath. As she sucked in air as best she could, I could hear the same raspy rattle my mother would make as she struggled to open every square inch of lung capacity in a desperate effort to catch her breath.

Shortly after my mother reached this point, her doctor told her that there was nothing left that he could do. She was too weak for chemo, he said, and so he sent her home with home-hospice care. Having home-hospice care was probably the best decision we made in the course of my mom’s illness, and my only regret is that we didn’t get that type of support sooner.

In an article in the New Yorker by Atul Gawande that came out right around my mother’s diagnosis, he explains that most people don’t access hospice care until their last weeks of life, when actually hospice is available to patients with six months left to live. But there’s the rub: who wants to admit that they’ve got only six months left to live? Certainly not my mother.

That’s where palliative care can come in. Palliative care, which has been scientifically demonstrated to extend life when engaged with early, is an option for anyone facing serious illness. What most people don’t know is that palliative care is available to patients regardless of where they are in their treatment and whether or not they have a terminal illness. You don’t need to “give up” on treatment to access the support of a palliative care specialist; palliative care is often delivered in conjunction with regular medical treatments, such as chemo or dialysis.

Think of palliative care as a team effort: the oncologist treats the cancer, and the palliative care specialist treats the symptoms and side effects. Doctors are busy people, I explained to my mom. Why not have a team of experts working to help you stay as healthy and as comfortable as possible, for as long as possible?

She never responded to my suggestions, but the more I learned about palliation, the more clearly I understood its value. So much of our experience with a disease happens outside of the fifteen minute doctor’s visit, and when things get complicated—as they invariably do with life-threatening diseases—it is always better to have as many knowledgeable people working together as possible.

While my mom never did pursue palliative care, our whole family saw the benefit of hospice. Our hospice nurse provided the perfect combination of gentle support and stern management of care. She cleared out unnecessary medications, set up pill boxes to help us stay organized, and established a medication schedule so that we all knew what mom needed, and when. She had all of us working together to care for my mom, and she did all this with a sweet Southern accent and a calm demeanor. She provided tremendous support for our family. She helped us understand what the last few weeks would be like. And when my mom finally slipped away, she tended to her gently and beautifully.

The level of care and support our hospice nurse provided made me acutely understand what good-quality palliative care could have given my mother and our whole family. And maybe we could have gotten just a little more time with her if we’d started out with palliative support.

  • Advance Directive
  • Aging Care
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