An Intruder to Hope

Our job, so said the doctor, is to not take away hope.

That was how a physician summarized the reasons for decisions made about a hospice patient.

Hope?

Hope . . .

Hope floats.

Hope springs eternal.

Always look on the sunny side.

Hope is passion for what is possible.

However long the night, the dawn will break.

Let your hopes not your hurts shape your future.

When you’re at the end of a rope, tie a knot and hold on.

I could continue the quotes, clichés, and truthful longings. Do you have a personal mantra for hope? One of the more familiar (and a favorite I’ve happily used) is Emily Dickinson’s, “Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.”

So, what were the decisions made or considered by the doctor for the patient?

More chemo for the patient’s cancer. It might work this time. Trying radiation again. The insurance would cover it. There was apparently a mention of an upcoming trial for a new (hopeful) drug. The doctor had also avoided scheduling a next appointment with the patient (because when you have no good news to share, what’s the point of sharing anything?)

Don’t we hate it when a doctor exhausts the options? I sat in an orthopedist’s office not long ago, informed that my choices for a “cure” were becoming limited. I’ve been struggling with Achilles tendonitis—such a trivial, irritating problem. I’ve tried medication, physical therapy, stuck my heel into a million melting ice cubes, have worn a we’re-having-fun-tonight night splint, and other medical mojo over a long, achy stretch of time. The tendonitis got better. It got worse. It got better again. It got . . . well, sometimes it’s not easy to accept that certain ailments are linked to an accumulation of birthdays.

I don’t want to have surgery!

I don’t want to give up hope!

I’m gonna try something new and different next week.

Isn’t there always one more option? That’s the physician’s task, isn’t it? Do no harm. Have one more option. Offer hope.

And this particular doctor, who is a little like all doctors, and who is really a composite of many doctors, had informed one of our new hospice patients (who could be old or young, male or female) that there was still . . .

Hope.

The possibility of cure equals hope. Isn’t that true?

On the other grim hand, hospice care equals hopelessness. Isn’t that true?

One of the lesser known options for a hospice patient is to leave hospice care. While on hospice, which is always based on two doctors agreeing that a patient’s illness means there’s likely six months or less to live, treatments to cure the “terminal” disease are not covered by your health insurance and/or Medicare. But wait! What if you hear about, or your doctor mentions, a “hopeful” new surgical procedure, or a “hopeful” new drug regime that may add months/years to your life? Well, you would have to leave hospice care for that.

And please, leave!

And then, if (sadly), it doesn’t work or (gladly) a procedure or medication extends your life, you can again be evaluated for hospice care “down the road.” While there are forms to fill out, and other hoops to leap through, it’s not that difficult to depart and then return to hospice care. After all, one of hospice’s core values is giving a patient control.

Or, giving a patient hope.

It’s easy to write about hope, to want (and to hope) that every current and potential hospice patient knows they can keep their options open. It’s far less easy for me to write about being a hospice patient “without medical options” and claiming hope.

If you’re the patient, you do have six months or less to live. (Often much less . . . nationally, nearly one third of all hospice patients die in the first week of care.) If you’re the friend or family member, you can no longer play the role of cheerleader, encouraging your loved one to suffer through the pain of treatment because there will be the gain of better health.

Hospice can seem as far away from hope as the lovely, sandy beaches of Hawaii are from the sunbaked sands of the Gobi Desert.

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I remember, as a hospice chaplain, visiting a dying mother. She lived in a modest, well-kept suburban house. Her daughter welcomed me and then led me through a hall and into a room. She introduced me to her mother—a tiny woman lying in an immense bed, with the covers nestled close to her chin. The daughter waved me to a chair angled in a corner. Easing onto the bed, she lay beside her mother. Simultaneously, the daughter’s and mother’s hands reached for each other. As we talked, they held hands. There was a little laughter. A few tears. Silences. I asked if they’d like me to pray, and we did.

Not much happened.

The mother quickly grew tired and I soon left, promising to return.

Why do I recall this simple moment?

I felt a little like an intruder! The mother and daughter were so comfortable with each other. They lay, side by side, holding hands, casually sharing, paying attention to each other, but never ignoring me. It was intimate. Tender.

And second, I witnessed hope. Hope not based on the number of days left, or there will always be a tomorrow, but hope in this moment. With this person. In this conversation. Hope was holding hands and finishing each other’s sentences and welcoming a visitor.

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I think most doctors understand and appreciate hospice. They aren’t afraid to explain that one of the options, long before the radiation or chemotherapy literally destroys the body, is to enter into hospice care and have a quality of life. Time with family. Time to be honest. Time to say goodbye. That is hope.

But there are still too many physicians (and non-physicians), that resist being open to what it means to say no to a cure and yes to hope. Our job, all of us, is to become the thing with feathers for another.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

  1. The account from the hospice chaplain at the end there, visiting mother and daughter, is familiar to me. With my mother, I shared that “hope in the moment,” at the end of her days. Just her and I (her husband gone the month before, and in between carer visits) enjoying our moments together. We had that hope.

  2. Interesting read (once again). More often than not, my experience has been doctors doing treatments for way way way too long not willing to discuss a no treatment or palliative treatment regime– and cynical me says it’s because if they aren’t giving you chemo, doing that cardiac surgery, doing that radiation then they aren’t making money. Jaded? Yes. Hopeful the “system” can change? Yes. We need to do a better job of being gently honest and guide our patients toward better quality and let go of quantity. A mom and daughter holding hands is quality. Give me that. That’s my hope. Just give me that.

    • Hey, thanks Denise. Sadly, you are correct. Our health care system “rewards” doctors with payments for many specific procedures. As I recall, it was only recently that Medicare added a “paid” option for physicians to spend time talking to a patient about end of life issues. Talking! Yikes!

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