Hospice Isn’t the Opposite of Hope

mother.daughter

A daughter called about her mother . . .

My obvious hope on this website is to inform people about hospice.

I speak personally. A hospice cared for Dad. My mother, though never a hospice patient, received feedback from a hospice nurse that proved crucial to my family’s decisions. (We also “rejected” another potential hospice because their admitting nurse was—being polite—not very professional.)

I speak professionally from my past. On numerous occasions, visiting patients as their chaplain, I witnessed the importance of quiet time with loved ones in the final days. As hard as it was to admit, one more round of chemotherapy or another frantic trip to the emergency room would only put off the inevitable for a brief, painful time. Wasn’t it better to remain home?

I speak professionally from my present position in bereavement support. On numerous occasions, the ones grieving have shared with me how life changing the final days became with a parent or spouse or child or mentor or best friend. They learned about themselves (and liked what they learned about their strength and patience) as they focused on being a caregiver.

I speak realistically about hospice and our mortality. Modern medication, fervent prayers, high-tech treatments, the skilled hands of a surgeon, or the healing properties of an exotic herb may lead to remission or even complete cures . . .

But do you think your ill parent or spouse is somehow immortal?

Do you think you are?

But forget all any fancy or fanciful philosophy about human limitations. Hope, after all, matters!

If you’re a person of faith, won’t choosing hospice twist your hopeful prayers for healing into lies? How can you claim to trust God if you “give up?” If you’re a person that relies on modern science and has hopeful confidence in an oncologist or neurosurgeon’s arsenal of cutting edge tools, aren’t you yanking away the proverbial rug on their expertise by choosing hospice?

Doesn’t God answer prayers? The “Good Book”—whichever sacred text you cherish—says so!

When the physician offers a new drug regime with a 20% success rate, why wouldn’t you be among the 1 in 5 patients with good results? Someone wins . . . why not you?

How can you not hope?

In Shawshank Redemption, a film based on a Stephen King novella, the character Red bluntly tells his prison pal Andy, “Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.”

From "Shawshank Redemption."

From “Shawshank Redemption.”

In Andy’s case, after playing music through the prison’s sound system, and then paying the price for his misdeeds with a stint in solitary confinement, he still embraced the value of hope. To have hope, even with a life sentence in prison. To have hope, just to make it through another miserable day. The iron bars and the angry guards may keep the body contained, but within your heart and mind—in those places no one else controls—you still have . . . hope!

But wasn’t Red right?

Isn’t hope dangerous?

Of course! But isn’t hope better than complacency or procrastination or self-doubt or a legion of other negatives that only encourage futility?

And so I hope you or your loved one avoids hospice as long as possible. I hope you seek every cure, get every second—and third and fourth—opinion, pray every prayer, swallow every pill, and achieve that extra day and month and year of life. [Warning: movie spoiler.] Isn’t Shawshank Redemption such a beloved film because Andy’s hope, persistence, and hard work lead him to freedom? Without his “dangerous” hope, he’d have died behind bars.

So please, keep hoping as you and your loved one wait in another doctor’s office. Keep hoping as you prowl the web for the newest experimental drug trial. Keep hoping while advocating for your beloved . . . for if you give up, they may also surrender.

But hospice isn’t the opposite of hope.

Hospice care isn’t giving up, failing, losing, or any other dreary phrase of grim comparison.

The hope found in hospice isn’t based on treatment statistics or—I will be blunt—thinking you’ll never die. We all crave a large quantity of many days, but the quality of this day also matters. It is scary, even dangerous, to choose the comfort care of hospice over a medical or miracle cure because then only the patient controls her or his hope. Hope becomes precious time with loved ones. Hope becomes resting rather than restless planning. Hope becomes creating intimate memories rather than scheming for a splashy “bucket list” trip to Paris. Hope becomes—and this is so difficult for stubborn humans—letting others care for you.

But who am I kidding?

Won’t dying and hospice always be equated with hopelessness?

When serving a church years ago, I received an out-of-the-blue call. Not a member, the caller immediately (and bluntly) announced she was Buddhist. But her mother was a Christian and dying from cancer. Could I visit her? Soon after, I arrived at the home of a “stranger.” The mother had stopped treatments. Hospice would soon be contacted. Was there any hope left? I visited several times. We chatted, held hands, prayed, and joked with her daughter about how easily they irritated each other and how they loved each other more than words could express.

Nothing much happened; everything happened.

Hope, dangerous and essential, was part of their conversation until a mother and child shared a final laugh and tear and kiss.

(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. Thank you so much for this post. A close loved one just joined hospice after a year of something not being quite right and sadly, the medical community missing the mark. It was a crazy making year and now we have a diagnosis, a sad one but what I know of hospice, our loved one is in the hands of compassion and the best our society can currently offer. Family is gathering, not for a funeral, but to remember the joys and laughs that are what family is. We will remember these visits and and I know that quiet person gently checking vitals and adjusting blankets made this time possible.

    In what seems like a hundred lifetimes ago, another close family member was in a similar situation; but considering hospice was still, as you described, giving up (we just did not know better then). Our treasured family member lingered for a little over a week in a semi-comatose state in hospital while the doctors continued to treat, explaining procedures and assuring us that there was always hope. We wanted to believe and the doctors knew that. Our loved one suffered both from the treatments and the growing tumors but they would not consider increasing pain because they worried about addiction and once the treatment process began, we were told we could not refuse any course of treatment the doctor deemed necessary. I sincerely hope those doctors have become more enlightened because, in my opinion, what they gave us was shame, not hope.

    Hospice offers so much to the patient and their family. The peace of mind that professionals who understand the process can help my loved one get the most from the time they have and then slip into the next part of their journey as gently as possible.

  2. Hospice is by far giving up. It’s allowing us to take care of our loved ones through end of life with the best loving care, they have all the answers, and the support is amazing.
    Due to Hospice I will have no regrets when my dad passes.

    • Diane – I’m glad that the hospice helping you is allowing you to help your father, in part to also be a child taking care of a parent. Thanks for sharing!

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