Living All the Way: How Hospice Care Informed Three End-Of-Life Journeys

By Barbara Victoria

When a hospice nurse explained the physical and emotional benchmarks in the end stages of life that my mother-in-law would experience after her cancer metastasized, a light went on in my head. I had been schooled in the physical and emotional phases of birth with Lamaze; dying is the journey at the other end of life! Both are wrought on sacred ground, accompanied by pain and awe and the unexpected. And both can reveal true miracles that cannot be foreseen unless we get out of the way and allow the process to reveal itself.

Fifteen years later—eleven as a hospice volunteer and four on an interdisciplinary team—I appreciate the practical factors, financial and physical, of hospice care. The spiritual dimensions make this work I can’t NOT do. If we put away our fear, we can make choices for ourselves and with our loved ones that allow living all the way to the end with grace and dignity and peace.

• Language: English
• Publisher: iUniverse
• Release date: Oct 11, 2018
• ISBN: 9781532059575

Barbara Victoria

Barbara Victoria is a graduate of Stephens College, and the University of Kentucky where she received a B.A. from the College of Fine Arts. She is mother of a grown daughter and son, and has two grandsons and two granddaughters. She has been committed to hospice care for 15 years.

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Copyright © 2018 Barbara Victoria.

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ISBN: 978-1-5320-5956-8 (sc)

ISBN: 978-1-5320-5957-5 (e)

Library of Congress Control Number: 2018911944

iUniverse rev. date:  10/24/2018

Contents

Foreword

Mary

Bouquet

September Soup

Victoria

Visiting Victoria

Robert

Islands in the Snow

Barbara Victoria

Resurrection

Notes from the Field

Hospice for Raymond

Hospice Mate

Hospice Clowning

Patricia and Nicholas

Hospice: Second Sunday

Hospice Work

Carrey and Me

Acknowledgements

About the Author

To Naomi Yolanda Lowman, my first Hospice patient, her husband, Johnny, children Kathy, Little John, Dana and Cheryl and their families and to Spirit Mountain Hospice, Cody, Wyoming.

Foreword

W ith respect to Charles Dickens, I have often paraphrased his epic opener to A TALE OF TWO CITIES when referring to hospice care as the worst of times and the best of times.

Death is final and fraught with loss; dying is a dynamic journey that can be dark and, at the same time, illuminating. Driven by real labor, death is inevitable. The end of life, informed and guided by hospice care, can be a revelatory. We cannot choose the former, but we can choose the latter.

The end of life with hospice begins by accepting the reality of where a patient is in their life journey given the medical constraints he or she is facing. When medical problems begin coming hard and fast with more steps backward than forward, patients and families can face head-on where they are by asking the attending physician for a no-holds-barred prognosis. If, based on the normal progression of the disease(es) a patient is battling, a physician determines that he or she has six months or less to live, the patient can be admitted to hospice care with written confirmation from the physician.

Admission to hospice means that curative measures stop, and palliative care begins by managing, first of all, pain, and disease symptoms. The patient and family decide whether to remain at a family home or enter a nursing facility or assisted living, a hospice inpatient care center or hospital, depending on progression of the disease. An interdisciplinary team of hospice professionals is assigned including a palliative care physician, a registered nurse or advanced nurse practitioner, a certified nursing assistant for physical care, social worker and grief counselor, chaplain, and a hospice volunteer to offer respite for family and caregivers. Any or all of these supports are available depending on what the patient requests. Durable medical equipment (hospital bed, potty chair, walker…) and medicine are provided at no cost to the patient.

Hospice support at the end of life provides better coordination of care, better management of treatments and medications, assistance with daily living, better access to social services, and counseling for patients and families with difficult-to-manage illnesses that enable quality of life for as long as possible where and how the patient directs.

Financially speaking, Hospice care offers quality of life at the end of life at less cost to the health care system and to patients and families. A study by Duke university in 2007 found that hospice care saves Medicare just over $2,300 per hospice patient. Increasing the length of hospice care by only three days would increase savings the savings due to hospice care by nearly 10 percent, from approximately $2,300 to $2,500 per hospice user. Medicare costs would be reduced for seven out of ten hospice patients if hospice had been used for a longer period of time, that is, if the patient had been admitted to hospice care earlier

The National Hospice and Palliative Care Organization notes that thirty percent of Medicare’s annual costs are spent on the five percent of beneficiaries who will die each year, about one-third of dollars spent in the last year of life being spent in the last month. With the average time in hospice care estimated at two weeks by Hosparus Health, Louisville KY, for example, cost savings clearly escalate with hospice care.

However persuasive dollars and cents can be, they are not what make hospice work something I can’t NOT do. With my mother-in-law’s passing in 1971, I knew I was on sacred ground, the same sacred space of birth but facing a different direction. Bearing witness to the full circle life changed me forever, and informed the next twelve months as my parents passed. Their transitions were different, particular to them, but their destination was the same. Hospice gave me grace and resolve for their journeys that I could not have known any other way.

Being part of the journey, bearing witness whether close or from afar, is an exquisite privilege, and has turned hospice work for me into spiritual practice. I want to always serve that sacredness, and encourage others to choose living all the way to the end when their time comes. Serendipity, miracles, and gifts are revealed when we say YES to life. All of it.

I t is the 11 th day of January 1991. My mother-in-law of twenty-three years has just been diagnosed with terminal cancer.

I first met Mary Fontaine Scott Foote on Easter Sunday of 1967, and we have been friends since. Her youngest son and I were married the following October and moved back to the family farm in central Kentucky seven years later—after graduate school, after Vietnam, after finishing graduate school, after three years in Pennsylvania where a daughter and son were born to us. We farmed with Mary and my father-in-law, Gerard Moore Foote, for three years, then bought them out with Jim’s brother, Phillip. As part of the transaction, we deeded them twenty acres of adjoining land, land originally owned by Footes seven generations before us. It had been called Saratoga, and became Saratoga once again with a refurbished barn and the new home that Mary had always wanted. The folks moved into their new house in the fall of 1977 and we moved into the 100+ year-old farmhouse at Basin Spring, our children the fourth generation of the Foote family to live therein. Mary and Gerard looked after our pre-school son, Gerard, and first-grade daughter, Tessa, when I returned to work in the fall of 1978; we neighbored across the fields. By 1991 the children were in high school and college, almost grown. We had seen a lot together, now this.

This was the beginning of a watershed year. Mary’s passage was the first of three odysseys of life and death that I would experience within twelve months. Informing each passage to include both of my parents was the substance of three singular lives.

Mary

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1917-1991

Bouquet

                At 1:15 I awaken,

                her son breathing softly beside me.

                He handles it well by day

                but at night his body constricts

                ever so often as if he is battling

                    the cancer that overtakes her

                    daily

                and I am awake wondering

                what kind of night is she having

                and did her headache subside and

                is she awake wondering

                    where is the headache coming from

                    and will her daughter arrive

                in time? Does she know —

                I have always admired

                    the way she sets a table

                    the plants that flourish