THE BLOG
10/11/2013 10:13 am ET Updated Jan 23, 2014

Hospice Voices

According to a Kaiser Health News article dated Jan. 16, 2013, re-printed by AARP, approximately 1.65 million Americans utilize hospice each year, so chances are, you or someone you love will at some point experience hospice. For myself, I was 33 when I reached out to hospice after my late husband was diagnosed with terminal cancer.

Still, to this day, I remember exactly where I was standing when a compassionate nurse at the University of Michigan hospital led me to a private office and explained that I needed to telephone hospice. I asked, "What do I say?"

With a kind, maternal tone, she said, "They are expecting your phone call."

I didn't think to even get the name of the nurse, or ask whom I should thank for arranging this. I just stood there, lump in my throat, trying to hold back tears while looking outside and noticing a perfect autumn day. I just stood by the desk and the nurse pulled out the chair. She said, "You will need to sit down here."

Many have lost loved ones in the hospital and others, like my late husband, had in-home hospice care. Rather often, when I talk about my upcoming book, I am asked whether I would again engage hospice. This answer is yes. Hospice is a difficult decision for anyone, but it allowed me to bring my late husband home, somewhere he desperately wanted to be.

Nurses and doctors help people understand the nature of hospice. Dr. Gary Hammer, the Millie Schembechler Professor of Adrenal Cancer at the University of Michigan Cancer Center, helped me. His patients have an ultra-rare type of cancer: adrenal. Sadly, nearly all of the patients Dr. Hammer treats have advanced cancer. My husband was treated at this cancer center, and six years after his death, I met with Dr. Hammer. I told him that I felt guilty for having my husband undergo numerous biopsies, other procedures and doctor visits, and spending so much of his remaining time in the hospital, when the best solution was hospice. With great patience and kindness, Dr. Hammer explained that many times adrenal cancer is diagnosed only after it has metastasized and said, "You did the best you could do."

Many others wait unduly long as well, I'm told by J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, which represents some 50,000 providers and professionals. Schumacher has spear-headed National Hospice Day: Oct. 12, 2013. This day is about expanding awareness, Don tells me, as "one-third of all patients enter hospice and die within seven days. We hope more people will see the value and select hospice sooner."

Dr. Hammer speaks to such value in his opening letter to patients:

In this vulnerable place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. And these truths are indeed the very reflections of the word presence: conscious engagement, the experience of present time -- the razor sharp NOW, and a gift -- the gift of emotional authenticity.

One of those places of emotional authenticity is found in the book Hospice Voices: Lessons for Living at the End of Life. Author Eric Lindner's debut is somewhat like an Irish wake. There are tears, but also joy and surprising levity. His writing honors and gives voice to those intensely personal moments that patients and their loved ones endure and find reasons to celebrate. I use the word endure because there is pain: physical, psychological, and spiritual.

Letting go often gives rise to an intense, raw, cold, sharp pain from which moments of great warmth and even laughter spring forth. Laughter? Yes, and these moments of touching irony remind us all of this universal truth: Life -- and death -- is replete with paradox and juxtaposition.

Lindner urges us to be still, present and listen with all our sensory antennae to the winks and whispers, hugs and mumbles, sighs and chuckles of those on the cusp of the Hereafter. The unspoken, the look, the long deep breath, the tear in the corner of the eye, and the tight grip of the hand -- these are the unspoken things that speak volumes. As a "companion caregiver," he ushers us into the lives of seven special patients, illuminating what's relevant to and for the dying -- and the living. As far as the dying are concerned, Lindner observes, one of the most relevant things "is preserving a shred of privacy and dignity, which can be tough when you're incontinent, your wig's on backward, or you can't find your false teeth."

None of Lindner's patients left a stronger imprint on me than Mary Louise Burris, aka "Little One." An entire book could be devoted to this cantankerous and beautiful woman. She was widowed twice, mother to one adult child, and Native American. She said to Lindner, "Life was hard as a quarter-breed. But I made something of myself."

It doesn't take a psychologist to figure out that this Mono Indian's manifold roughness comprises her protective bunker, akin to the nukes she helped hide as a top aide to the Top Brass at Strategic Air Command. Little One was expert at burying her secrets, deep, especially from those she loved the most. She struggles to unearth and heal her self-inflicted wounds, but can't beat the clock. Little One is truly an enigma wrapped in a mystery. After her death, her secrets define her identity.

Lindner is an honest teacher, not one to shy away from highlighting his own foibles. Yet he demonstrates how all of us, even the most "unskilled," can help alleviate pain and suffering -- while learning great lessons in the process. He brings to us patients with whom we can all sympathize and identify. Lindner's stories echo Khalil Gibran, who said, "Pain breaks the shell that encloses understanding."

To learn more about Hospice Voices, you can go here: http://www.hospicevoices.com/
To follow author Eric Lindner on Twitter: @EricLindner1
To view Dr. Hammer's complete letter, go here: http://www.annarbor.com/health/the-roller-coaster-chronicles-an-open-letter-to-cancer-patients-everywhere/
To learn more about adrenal cancer, you can go here:
http://www.uofmhealth.org/medical-services/cancer/adrenal-cancer

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