Hospice is the primary system to provide care for the terminally ill and their families. Warm, compassionate, and absolutely practical, this definitive resource from the National Hospice Organization will answer all your questions about hospice care and will show you how to make this comprehensive and flexible system work for you and your family.The Hospice Choiceillustrates the gamut of situations dying people and their families may face and suggests ways to manage them. Throughout is information on the broad range of services hospice can provide: Physicians and Nursing Services:to help with care specifically designed to keep the patient comfortable and at home Counseling Services:to help families and patients sort out their needs and responses Respite Services:to allow caregivers needed breaks Bereavement Counseling:to provide support for surviving family members and significant others for as much as a full year after lossThe Hospice Choicealso addresses sensitive issues like methods of payment, issues of ethnicity, the special problems raised by sudden death, and the realities of caregiver exhaustion. It will give you the concrete information, support, and encouragement that will help you make wise, compassionate decisions for yourself and for your loved ones.

Maria Lattanzi-Light is an internationally known educator and speaker and a pioneer in the field of hospice care.

Introduction

9

(6)

Acknowledgments

15

(4)

Chapter One SAYING GOOD-BYE TO DAD: A Family Journeys Together

19

(22)

Chapter Two HOSPICE CARE: An Informed Choice

41

(17)

Chapter Three SO LITTLE TIME, SO MANY PEOPLE: A Single Woman Accepts Support

58

(28)

Chapter Four MY LITTLE ONE: A Mother Remembers Her Baby's Brief Life

86

(23)

Chapter Five THE COMMITMENT: Facing the End of Life His Own Way

109

(27)

Chapter Six THE HEART HAS REASONS: What It Means to Be a Hospice Volunteer

136

(25)

Chapter Seven IF WISHES WERE HORSES: A Girl's Special Relationship with Her Sick Mother

161

(17)

Chapter Eight WAITING TO LIVE: A Couple's Retirement Dream Changes

178

(10)

Chapter Nine IT DOESN'T SEEM LIKE SUCH A LONG TIME NOW: Two Families Face the End Together

188

(25)

Chapter Ten SHATTERED DREAMS: A Community Responds to a Tragic Accident

213

(16)

Chapter Eleven "I'M A HOSPICE NURSE": The Costs and Rewards of Working with Hospice

229

(19)

Postscript

248

(3)

Endnotes

251

(5)

Hospice Q and A

256

(9)

Consumer Information and Resources

265

(7)

Resource Groups

272

(5)

Additional Reading

277

(4)

Index

281

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From Chapter One:Saying Good-Bye to Dad—A Family Journeys Together

Everything is changing for Garfield Platt and his family. Just two weeks before he was diagnosed with inoperable lung cancer, Garfield Platt was out in deep snow saving the newborn calves on his small cattle ranch. Now, five months later, at 71, his life is slipping away as quickly as the morning mist on the prairie he has always called home.

Proud of his hard work and modest successes, Garfield Platt is dedicated to his ranch and his family. His wife, Norma, has been with him for forty-seven years, and their relationship reflects their quiet, steady natures. Norma and Garfield have two grown children, Melanie and Bob. Busy with demands of their careers and families, both Melanie and Bob keep in close contact with their parents but are less close to each other.

Melanie, the oldest, lives 700 miles away and visits two or three times a year. A corporate attorney, she is divorced and has no children. Bob, his parent's favorite as a child, is a program manager for a large computer manufacturer. He lives sixty miles away with his wife and 10-year-old son. Since his father has become more ill, Bob visits at least once a week. Garfield would like Bob to visit more frequently and stay longer, and often chides him about being in such a hurry.

In spite of the radiation treatments, Garfield's breathing is becoming more and more difficult. For the past ten weeks, he has needed constant oxygen and he finds wheeling around the tank bothersome. His weight is dropping rapidly and he's increasingly tired and depleted. An independent rancher who could handle the crises of severe winter storms and drought, Garfield feels his life is out of control.

At Garfield's visit to the oncologist, Dr. Miller recommended the care of the local hospice. While Garfield did not fully understand the services, he trusts Dr. Miller. And, Norma is needing more help and time to do errands. One of the ways that Norma copes with the pressures of ranch life is by visiting with the local store merchants and neighbors that she would see while shopping.

When the hospice nurse and social worker come by for the initial visit, both Norma and Garfield are apprehensive. They listen as the nurse and social worker describe the homecare services and the support that hospice offers. Norma is openly relieved and eager for some help. Garfield has numerous questions and is concerned about the people who will be coming into their home. While they are friendly with neighbors, the Platts are private and independent people who do little formal socializing.

As the hospice nurse, Doris, examines Garfield physically, she soon discovers through careful assessment that he is experiencing a fairly constant low-level pain. Garfield describes his pain to the nurse as a gnawing pressure in his lungs and ranks it as a three or four on a ten-point scale that ranges from a mild headache (one) to unbearable pain (ten). They also discuss his shortness of breath, which is creating restlessness and difficulty sleeping.

The hospice nurse continues to ask Mr. Platt about his other concerns. Reluctantly, he admits that he is also having difficulty with constipation, and that he does not enjoy eating much because it seems like too much effort lately. When they talk about the seriousness of his illness, Mr. Platt speaks about licking the cancer. He then concedes that he is very tired. "Sometimes it's hard to go on. One of the things I know from ranching is how to deal with difficult times, but this has thrown me for a loop. I just don't know what to do."

At the same time, out in the living room, Susan, the hospice social worker, asks Norma about how she is handling the physical demands of Garfield's illness, and what types of support she would find helpful. Norma says that she is feeling overwhelmed by Garfield's weakness and irritability, and tearfully admits that sometimes it is hard not to snap back at him. The social worker agrees that fulltime caregiving creates a level of distress that most people find difficult to tolerate without an occasional break. She offers the availability of a hospice volunteer to come by once or twice a week. Norma thinks it would be good for Garfield to have someone to talk to or play cards with while she does her errands.

Norma and Garfield are members of the local Methodist church. They had attended regularly in the past, but have not been to church for the past four months. Inquiring about support from the church, the social worker learns that their pastor knows of Garfield's illness, but not of his decline. Norma hopes that he will come out for a visit to their home and agrees to have the hospice chaplain contact their pastor and arrange for him to visit.

The nurse and social worker explain the services to the family, and give them a written pamphlet outlining the Medicare Hospice Benefit. Garfield questions the costs of hospice and Norma is interested to know what nursing services will be available. Even though Garfield is still mobile, he only leaves home for his appointments with the oncologist. "I've always been a man who loved his home, and this is the only place where I want to be now."

After a brief planning discussion, the family and the hospice professionals decide upon twice-weekly nursing visits at the outset. The volunteer will visit once or twice a week, and the social worker will be involved if needed.

Within the first seventy-two hours of hospice's involvement, Garfield begins taking regular doses of an oral narcotic analgesic that Dr. Miller has prescribed. It is adjusted to his specific needs and soon controls his pain. When Garfield initially expressed concern about the addictive nature of the medication, Doris, the hospice nurse, explained that morphine has few side effects and would allow Garfield to stay awake and alert. She went over the possible side effects, and pointed out that it was most important for Garfield to feel comfortable.

Norma is able to help Garfield with his shower for the first two weeks of hospice care. After that, a nursing assistant, Cathy, is assigned to assist Garfield three times a week with personal care.

The hospice volunteer, Dave, comes by once or twice a week for a couple of hours to play rummy or blackjack with Garfield for as long as his energy holds up. Dave teases Garfield about quitting when Dave is winning, so they are keeping a running score of the game. Usually, after a half hour, they sit together and listen to a local radio station, commenting to each other on items of interest. Three weeks later, Garfield is too weak to play cards, and finds it hard to engage in even small bits of conversation. Short of breath even with increased oxygen, Garfield tells Dave, "I feel like I can't say too much anymore. I do like to have you here, though." Dave continues to visit and reads the local paper to Garfield, or watches television with him.

The following week, Melanie comes out for a three-day weekend visit and attends to her parent's legal affairs and will. During the visit, Melanie and Bob have harsh words with each other about their relationships with their parents. Longstanding resentments boil over, and afterward, Bob and Melanie are not speaking to each other.

Both parents are distressed over the conflict, but feel powerless to know how to make things better. After the second day of Melanie's stay, Mr. Platt speaks openly to the hospice nurse during her regular visit. "Things are just too complicated, and this is too hard on Norma and the family." Listening, the nurse reassures Garfield that his family will work things out, with the hospice team available to help make things smoother.

The hospice nurse remarks to Melanie that the stresses of seeing her father so ill may be greater than she realizes. She suggests that since Melanie will be in town for one more day that she and Bob meet with the hospice social worker to discuss family decisions, their father's care, and any other concerns or questions. Reluctantly, Melanie and Bob agree, and Susan, the hospice social worker, spends time with them clarifying their concerns for their father and their roles in helping the family navigate this difficult time. Both acknowledge that they feel helpless and are struggling to deal with the loss of their favorite parent. "There's no one like Dad," Melanie tells Susan. "He always seemed so strong and invincible, and he made everything right for us when we were upset or discouraged. It's hard to imagine this family without him. He's the glue that holds us together."

Recognizing the extra burden of responsibility that Bob must feel, Melanie thanks him for being available to their parents. While there is still tension, some of the overt conflicts are eased. Melanie promises to come back at whatever point Bob feels she would be needed, asking that he give her a couple of days notice if possible. Knowing he has some backup with their parents is the most important thing for Bob because he does not want to be criticized or blamed for decisions after the fact. Bob and Melanie decide to speak on the phone every other day to keep up with the changes.

When Bob visits his parents every weekend, he feels a sense of shock at his father's physical condition and diminished appearance. Garfield looks weaker, even though he is still four inches taller and outweighs Bob. Spending his time checking on the maintenance of the ranch and other tangible business needs his mother has, Bob usually avoids significant contact with his father. He lingers in the kitchen, typically avoiding the bedroom where his father spends his time watching television or dozing on and off. Each visit, Bob goes back for a couple of brief exchanges with his dad.

This Friday, Cathy, the hospice nursing assistant, comes into the kitchen after she has finished Garfield's bath and asks Bob if he would like to shave his father. Looking as if he is too embarrassed to say no, Bob reluctantly walks back to the bedroom where his father is resting. It takes only a few minutes with his hands applying shaving cream and stroking the razor across Garfield's withered face for Bob to realize that his father is still here, still the man he knows. They talk about the ranch and retell the stories that are a family's richest inheritance. Bob jokes with his father about whether this shave would meet the strict standards Garfield had always set for the chores on the ranch. When they are finished, Garfield asks Bob to take him in the wheelchair to the living room so that he can look out on his herd and the fields.

As they sit near the window in silence, Garfield looks over at his son and tells him that although he had wished Bob would have taken over the ranch, Garfield is proud of the man Bob is, and of his successes. Then Garfield asks Bob to take care of his mother, to make sure that she will be all right. Looking straight at his father, Bob promises "You can count on me, Dad." Those few moments hold a lifetime's worth of importance to Bob, who could now be the strong one, the one to help his dad.

Bob asks Garfield about being in the living room, and he admits that he enjoys looking out on the fields he had walked and worked for more than fifty years. "I've always loved to watch the sun draw shadows on the grasses. There's magic in the way light changes the face of the prairie," Garfield tells his son. Bob promises to call hospice and ask for a hospital bed to be delivered, and to have it put by the living room window.

Bob feels different as he drives home, as if he had visited an emotional place he hadn't known before today. He can't picture life without his father. It will be hard to explain to his wife, Nancy, and his son, Paul, what this visit has meant. How could they prepare for the days ahead, for Garfield's death?

Excerpted from The Hospice Choice: In Pursuit of a Peaceful Death by Marcia Lattanzi-Licht, John J. Mahoney
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