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Why I Distill all the 'tricks of the trade' as a Hospice Nurse in Final Journeys
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
“I Don’t Know How to Do This”
My father was second-generation Irish American, a proud, meticulous man.
He was a career diplomat for the State Department, and honor and dignity were his core values. He was introspective by nature, a man of few words, but the things he did say to me in our private talks became anchors in my life. His introspection intensified in 1981 as he became sicker and more debilitated from the emphysema and heart disease that would eventually take his life.
I lived in a neighboring state, a forty-five-minute drive from my parents’ home. I had two young children at this point and worked full time, but I visited my parents as often as I could to help them as they dealt with my father’s illness. They had hired a private nurse’s aide, Sela, who lovingly tended to his personal care. My mother spent her time cooking, running up and down the stairs to meet my father’s many fastidious requests, and worrying—after being married for forty-five years—about how she would cope with the rest of her life alone.
I just wanted to be there and do whatever I could to make my father know how important he was to me, and to share with my mother in our common grief. I cleaned, shopped, cooked, and rubbed my father’s back—when he let me. Often I just sat on the bed near him and held his hand, grateful for each moment we were together. But it never felt like enough. I wasn’t ready to let him go, even as his inner focus intensified and he seemed to be getting further and further away from us.
Holding his hand, I thought of what I had learned from him throughout my life. So much was by example rather than by words. I never ceased to be moved by the image of this brilliant and successful man kneeling humbly in prayer like a child by the side of his bed every night. It was never discussed, and we were never told we had to do the same. But my father’s nightly ritual of prayer was important to him, and he never missed it—until the awful night when he was too weak to get up and my mother had to call for a neighbor’s help to lift him into bed. That was when we knew that his life had really started to unravel. He never knelt again, but he seemed to be lost in thought, or possibly prayer, much more often as the days and weeks went by. I recall wondering what could be important enough to rob us of his attention. And yet I had a strong sense that I should not intrude: he was clearly busy, mentally and emotionally, on something very important. I had the feeling that when he finally shared it with me it would change my life.
So it was with excitement and anticipation that I ascended the stairs to his bedroom near the end of his illness when my mother said he wanted to talk to me. He patted the chair next to his bed, inviting me to sit near him. He seemed to have a particularly purposeful gaze that afternoon. He put his hand over mine. This is it! I thought, and I felt my heart race.
He spoke with a determination that was my father’s to the end. “Listen to me,” he said. “This is important. I’ve figured it out.” He paused.
“What, Dad? Tell me,” I finally said hesitantly.
“The odds are against us,” he said. “One out of one dies.” I felt an almost comical disbelief. That’s it? I thought. That’s what he’s been working on all this time?
Then he continued: “There are classes in parenting, financial planning, maintaining your house, building a deck. Why aren’t there how-to classes in dying? Why don’t we talk about death? I don’t know how to do this.” He looked deep into my eyes. “I want to do it right. How can I be a good example to all of you in my dying? I have tried to live my life right, and now I want to die right!” He gripped my hand with surprising strength. “What does it feel like to die?” he asked with an urgency that I had never before heard in his voice.
I was unnerved by his profound questions, but the good nurse in me fumbled for an answer. I explained what I’d learned in school about vital signs, electrolytes, and other bodily processes. But my father just shook his head and asked again, “But what does it feel like to die—not the physical part, the feeling part? If no one gets out of this world alive, why don’t we know these things? Why do we go in fear?” At that moment my personal and professional journey changed.
The fibers that weave the cloth of who I have become were formed in large part by my hospice experiences. Hospice has never been just work for me; rather, it has become a philosophy—not of dying but of living. Much of what you read here will refer to hospice because that is how I understand the world. But I am also aware that even today, only about 30 percent of people in the United States die under the care of hospice, and no matter what circumstances have brought you to these pages, I believe that what I have learned can be of comfort and use to you. I am writing this book for anybody and everybody who faces the profound journey called dying. I am writing this book for all of us.
When my father reached the final stage of his illness, I had already been a nurse for eighteen years, but I had been with hospice for only a year and a half. Hospice, which is now a huge worldwide movement, began in the Middle Ages when Irish convents on pilgrimage routes opened their doors as places of shelter where the tired, sick, or dying could rest and receive food and care. Centuries later, hospice still refers to a safe place of shelter that provides care and comfort for travelers on a journey.
In 1967, Dame Cicely Saunders, a British physician, opened the first modern-day hospice, St. Christopher’s, outside London. She and her staff implemented a sophisticated approach to the care of the terminally ill using a new concept called palliative care. The treatments they provided sought not to cure the patient but rather to control the symptoms of discomfort, especially pain. St. Christopher’s continues to be the prototype for the thousands of hospices today.
I loved the challenge of working in this field of specialized care for the dying. I was amazed at what could be done to keep people free of physical pain and suffering in the last stages of their life, while they were in familiar and comforting surroundings, often at home, and being cared for by their friends and families. I found that the hospice philosophy blended the best of modern medicine with true compassion and creativity.
But my training did not address the questions that my father had so urgently asked. His concerns haunted me, and I set out to find the answers. I recognized that the true experts were my dying patients and their families, and I began quietly to learn from them. In this book, I pass along the lessons that they have taught me. They have taught me that dying is hard work. It is, perhaps, our most challenging and difficult experience. But they have also taught me that facing death can be affirming and enriching, a creative time of closeness, growth, and memory making, despite all its difficulty and grief.
Final Journeys distills all the “tricks of the trade” that I’ve learned since 1981 as a hospice nurse who has been privileged to care for more than two thousand dying people and their families. I hope it will be your companion and your advocate, a source of understanding and support throughout the time ahead. I have tried to touch on all the challenges you may face—medical, emotional, spiritual, practical, legal, ethical, and creative. However, not every chapter fits every journey, so please feel free to choose the topics and issues that match your situation and skip the rest. Some of my chapters are addressed primarily to the dying person, others primarily to caregivers, family, and friends; most of us will play more than one of these roles. Above all, I have tried to make Final Journeys the “how-to guide” that my father wished for.
As you will discover in the stories of my patients, the dying person can be in charge. You can make choices that will help you control your comfort, your alertness, and other important aspects of this journey. You can teach your family and friends how to do this with dignity. As uniquely as you have lived your life, you can write this last chapter of your life’s story in a manner that is uniquely yours, and that will be treasured by those who care about you. Final Journeys will help guide you.
Ultimately, I hope this book will make the journey of dying less frightening for all of us. When we’re afraid, we tend to shut down, becoming quiet and withdrawn. Some of us freeze and hunker down like small animals in the dark, trying to make ourselves invisible. Perhaps we think that if we do, death will pass us by. Others turn to anger and rage, or quiet desperation and depression.
It does not have to be that way. After all, as my father asked, “If no one gets out of this world alive, why do we go in fear?” This book offers other possibilities.
REFRAMING THE JOURNEY
“TOOLS, NOT TISSUES”
How beautiful these leaves were just last week, I thought. How ironic that they’re the most vibrant right before they fall and die. Now all we’re left with is big piles of wet drabness and this bone-chilling weather.
This is how so many patients feel, I thought. One moment your life is going along beautifully, and the next your doctor walks in with your tests in his or her hand and says, “I have bad news.”
Once you or someone you love receives that diagnosis, your lives will never be the same. A good friend, diagnosed with cancer, told me, “The disease took away life’s innocence. I always feel like there’s a stranger lurking in the shadows now, ready to jump out and do me harm again. The shadow person—that negative presence—is always there.”
I thought of my friend and the end of innocence as I steered my car past the leaf piles toward the only stretch of visible curb in a neighborhood of wide lawns and large colonial-style homes. Then I quietly reviewed the intake information sheet on the new patient I was about to meet.
Jake was barely sixty years old, diagnosed with pancreatic cancer just three months before, and already terminally ill. He and his wife of many years had two married children, both living nearby, both with babies of their own. How sad, I thought: just as life was getting easier—kids launched, retirement around the corner, time to travel and enjoy the benefits of all those years of hard work, grandbabies to spoil—this happened. How unfair!
I suspected that this family, like so many others I meet, had held off calling hospice for as long as possible, and now they were near crisis. As I climbed the steps to the front door, I noticed a woman glancing through the bay window of the living room. Was this Jake’s wife, Julie? I rang the bell and sensed her presence behind the front door, but it was a long minute before she opened it, her face puffy from crying.
Even after so many years as a hospice nurse, I’m still in awe of the raw courage it takes to open the door and let someone like me in for the first time. Most of the patients and families that I work with have clung to the hope of a miracle, a medical breakthrough, or even a misdiagnosis until the eleventh hour. My presence means that the end is unavoidable. Those who have acknowledged the truth often feel that the limited time they have left together is private and fear that my visits will be an intrusion. I know that everything I represent is frightening. Nobody ever wants to have to deal with me. Yet I knock on front doors again and again because in my heart I know I can make these last weeks or months better and more meaningful.
Julie introduced herself and escorted me into a sun-filled kitchen decorated with blue Delft tiles.
“Tell me about your husband,” I said to Julie as we sat down at the kitchen table.
It always interests me what people do with that question. It’s like asking someone you meet, “What’s going on in your life?” instead of “How are you?” The first question allows for real information to be shared; the second almost always elicits a perfunctory response. My first goal when I visit a new patient and his or her family is to connect in a genuine way. I need to know their focus, concerns, and fears. Julie’s answer would tell me these things.
Julie gave me a list of her husband’s symptoms and problems, and details of the treatments he had undergone. They had been in and out of hospitals for tests. They had traveled out of state to major cancer centers for second, third, and fourth opinions. The treatments they had chosen quickly overwhelmed Jake and had to be discontinued. Julie described a regimen that sounded truly hellish. And now they were finally back at home and having to deal with me. They were out of hope and running out of time. I took a deep breath, now knowing what direction to take. Julie was totally focused on the physical part of Jake’s illness, so that’s where we would start.
“I can see how much you and your husband have gone through in the past months. You must be physically and emotionally exhausted. I’m sure I’ll have some very specific suggestions for better relief of his physical problems, but what else can I do today to help you?”
Julie’s face quivered as she attempted to keep her composure. I wanted to reach across the table and put my hand on her arm to comfort her. My concern must have showed, because she suddenly drew herself up and almost fiercely said, “Please don’t be nice to me! I feel like I’m made of bits of paper that are barely held together. The slightest kindness and I will fall apart and blow away. I must be strong for him. He’s depending on me. I don’t know how to do this! I need strength, not sympathy. I need tools, not tissues. I’m terrified! Help me!”
“That is exactly why I am here,” I said. “Of course you don’t know how to do it. No wonder you’re terrified. Your husband’s illness is being carried in his body, but its devastation is rippling through his life, your life, and the lives of your children and grandchildren, his colleagues, and your neighbors and friends. Everyone feels the turmoil. Hearts start breaking the moment the word incurable is uttered. What’s vitally important is to focus on what you can do, rather than on what has been done and failed or how little time is left.”
“It’s just so overwhelming,” Julie said. “I don’t know what I need anymore.”
I’ve heard these words so many times—the first words on the journey of dying. I reassured Julie. “I can tell you’ve done a great job of staying involved and informed at every stage,” I said. “I am here to ensure that you have the very best possible care from the experts you need for each problem your husband might have or develop. I’m also here to help everyone else in the family deal with this life-changing event in as positive a way as possible. I will coordinate the people who will be taking care of all of you. This is a team that will include your doctor, a social worker, a chaplain, a nursing assistant, volunteers, a grief counselor, a nutritionist, a physical therapist, and me, your nurse. So not for one moment do I want you to think that you are in this alone, because you’re not.”
“But the doctors say there’s nothing more we can do. He’s going to die,” Julie sobbed.
“How frightening and heartbreaking it must have been to hear that news,” I replied. “But there’s a great deal we can do. We have highly effective and easy ways of keeping your husband as comfortable and alert as possible. We can help him—and you—live as fully as possible every day he has left. This can be a very creative, intimate, and loving time for both of you—a time for making and celebrating memories that will last forever in your hearts. I am here to help you both be less frightened and more in charge. We can do this together!”
“I just want things to be the way they were,” said Julie. “This is no way to live.”
“This has changed your life,” I replied, “but it need not destroy it. I suspect that each chapter of your husband’s life story has been an important and rich one. I want to help you write the last chapter in a way that is a fitting tribute to him and the life you have created together. This is our chance to show him that it has mattered that he has been on this earth. I know you want to show him how important he has been to you.”
Julie’s eyes widened. I could see her focus shift, at least for a moment, away from the fear and the sense of burden that had been so much a part of Jake’s physical journey. When I meet new patients and their families, as early as possible I try to reframe the situation, to help people understand the loving and nurturing emotional journey that dying also includes. For a moment Julie seemed to be lighter, to grasp this possibility, but then her shoulders slumped again.
“But he’s been so withdrawn, uncommunicative, almost sullen,” she said. “And before that he was angry, snapping and snarling. Who could blame him? I think he just couldn’t accept what was happening. That’s why it took us so long to call for help,” Julie said sadly.
“Anger and denial are two normal responses to terrible news,” I said. “You may have heard of the psychologist Dr. Elisabeth Kübler-Ross, who changed the way we all look at the last stage of life with her book On Death and Dying. In it she describes five stages that dying people often go through: from denial, anger, and bargaining to depression and finally acceptance. These stages aren’t necessarily a linear process; sometimes you can hear a seriously ill person touch on several during a single conversation. Not everyone experiences all of them, but I’ve learned that most people seem to experience some. This is true for the family as well as the patient.
“Denial is my personal favorite,” I went on. “I try to use it in my own life as much as I can!” I was pleased to see a half smile on Julie’s face as she relaxed a bit. “Denial is a wonderfully strong crutch that supports a person who is not yet emotionally ready to face what’s happening all at once. If denial isn’t causing any harm, let it be, unless you have something stronger to put in its place.
“You’ve already described anger. That’s an easy stage to see and understand,” I continued. “Bargaining is often very private. A man may promise that he’ll work with the handicapped if he is cured, or a woman might resolve to go to church regularly if she can see her children grow up. We are usually not aware of someone else’s bargaining. And then there are the stages of depression and, finally, acceptance.”
“Well, I would say that Jake has been depressed recently.”
“Let me go meet him. I’ll check him and see if there’s something we can do about that.”
I went to Jake, whose den had become his sickroom so that he wouldn’t have to go up and down the stairs. It was warm and inviting, lined with books. A hospital bed was set up in front of the fireplace. Jake was very foggy, in that drifty, dreamy state that pancreatic cancer often induces when it has spread to the liver.
“I’ve met your lovely wife,” I said, biding my time, trying to help him lift himself out of the fog. “This is a beautiful house.”
His eyes gradually became more focused and alert. I began to gently question him about how he was feeling and what concerned him. His voice was weak and wavering and his responses seemed dull and flat—not unusual for someone with depression. I asked what worried him most.
“I think this is too much for Julie,” he said despondently. “I don’t know how she’ll manage to take care of me. It’s too much. It’ll kill her! Maybe it would be better for me to go to a nursing home.”
Jake’s fear was not so much about his own illness and death as it was about his wife’s welfare. It moved me that he was willing to sacrifice staying in his own home to help her.
“I’m not just here for you,” I told him. “I’ll be making suggestions and keeping an eye on Julie to make sure she’s okay. My focus will be on your entire family.” His face relaxed and he sighed as his eyes filled with tears.
“Would it be okay if Julie joins us,” I asked, “so you can tell her your concerns?”
“Trust me,” I reassured him. “It will be okay.”
Julie came in, and with some gentle prodding, Jake shared what he had told me.
“You would leave home for me?” she asked. “How could you ever consider going someplace else?” Her tears came. “This is our life, our home. This was my wedding vow—for better or worse. I want to take care of you. We will do this together!”
He reached for her hand and began to sob. I tried to make myself invisible, giving them some privacy as they shared this powerful moment.
“Openness and honesty with each other are some of your strongest tools,” I finally said. “If you can continue to use them, you’ve won half the battle.
“May I come back?” I asked, as I always do. Each patient and each family has the right to say no. “I think we can all work together as a team and make this better for both of you.”
“Yes. Please,” Jake quietly said. Then he took my hand and shook it firmly for a long time.
After saying my goodbyes, I started for the front door. I stopped when Julie quietly called, “Wait, wait!” She wrapped her arms around me, and we hugged silently for a long moment before I left.
Changing the Journey
Jake’s terminal diagnosis felt like a door slamming and locking behind them. It imprisoned Jake and Julie in a scary, inescapable place. Much of the emotional work I do with the dying and their families revolves around opening a new door that lets light, air, and hope into the room.
I do this by first acknowledging the grief a terminal diagnosis always brings. So many well-meaning people respond to terrible news by trying to smooth it over. Yet any statement that starts with “Well, at least…” diminishes the distress and comes across as a lack of caring—or even as a kind of one-upmanship. When I first meet people who are adjusting to a terminal diagnosis, I never try to diminish their emotions. “Yes, this is terrible news and it’s very, very sad,” I say. “You don’t need to make excuses for the way you feel. You have a right to feel this way.” These words identify and recognize the struggle the dying person and family are going through. Validation is one of the first and most important tools for opening a different door.
Only then do I try to help them focus on what’s still possible, not on what’s been lost. The idea of living until you die is extremely important. “There are things we can do,” I assure my patients. “We can keep you comfortable, help you fulfill some of your dreams, make more good memories, and give you time for closeness and connection with the people you love.”
For those still clinging to the hope of a miracle, I might say, “Yes, sometimes miracles do happen. Try whatever medical paths or alternatives you want—anything you think might help reverse your illness and improve your prognosis. But at the same time, let’s also work together to fulfill your more personal goals. Then no time is lost. You will feel you have accomplished a great deal, and you will have as few regrets as possible.”
When someone you care about receives a terminal diagnosis, you should offer your ear to listen, your shoulder to cry on, and your hand to hold. Along with your words of support, those small gestures can provide immense comfort. They were among the most valuable tools that Julie needed to help her and her husband share their difficult journey together.
THE BOTTOM LINE
A terminal diagnosis is not the end of the story. As one door closes, another can be opened. [1-17]
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