Legacy of Love: A Celebration of Life

By Julia Duane Quinlan

The story of Karen Ann Quinlan and the battle her parents fought to allow her the right to die is one that is known worldwide. Karen's story captured international headlines when, after slipping into a persistent vegetative state her doctors refused to remove her from a respirator, that at the time was thought to be keeping her alive.
After a court battle to become legal guardians of their 21-year-old daughter the Quinlans won the right to remove their daughter from the respirator. Karen survived ten years without the machine, but the legal battle for the Right to Die, Advance Directives and Hospital Ethics committees had been fought and won for all of us.
In this book, Julia Duane Quinlan writes about how Karen's life became a legacy of love. She tells us how proceeds from the book, "Karen Ann - The Quinlans Tell Their Story," and a movie by the same title became the seed money to found the Karen Ann Quinlan Hospice in Northwestern New Jersey.
Quinlan tells us how the Hospice has grown to help hundreds of people in the community daily who are struggling with a life-limiting illness, die with dignity, pain- free, surrounded by those who love them.
This book gives insight to some of the nurses, staff, volunteers and aides who help these people and their families through one of the most difficult times of their lives.
It sheds a light on the good work that is done everyday that most people don't know about.
This book tells the story of how a simple vision to help those who need it most, regardless of ability to pay, came to fruition.

• Language: English
• Publisher: BookBaby
• Release date: Dec 16, 2019
• ISBN: 9781543997361

Book preview

Author

I lovingly dedicate this book to the memory of the patients we were privileged to walk with on their final journey home.

To the teens, young children, adults and all who gained comfort through our Bereavement Programs.

You will always be a part of the Karen Ann Quinlan Hospice Family.

The Legacy of Love, is a tribute to the memory of my beloved daughter Karen Ann. Her life served a purpose far beyond my expectations.

Although you did not know my daughter she will always be part of your life. She has become the symbol to us all to control our own destiny within the framework of our own values. She will always be know as the Sleeping Beauty, that thousands of people all over the world prayed for.

Karen Ann’s tragedy enabled my family and I to cross a threshold where life has a deeper meaning.

Julia Duane Quinlan

In late August 1976, Mary Ellen Quinlan was searching through a bureau drawer in Karen’s room and discovered, folded and tucked away in the back of it, a sheet of loose-leaf notebook paper.

At the top of the yellowed page was a date: two months and one week before the fateful coma.

Below that date, carefully printed in ink, were six lines which may have been Karen Ann Quinlan’s last poem.

January 7, 1975

the constant struggle with submission

is tiring

this so-called strength I’ve gained

is just another heavy load

I wish to curl myself into a Fetal rose

and rest in the eternal womb awhile.

– Excerpt from the book

Karen Ann - The Quinlans Tell Their Story

ACKNOWLEDGMENTS

The idea for the book took root around the holidays in 2006. It was the tenth anniversary of my husband Joe’s death. For reasons that I cannot explain, I found that I was reliving my husband’s hospice experience. It was not a tearful experience. It was somewhat of a comfort; I felt a closeness that had been absent for a time.

I now have the opportunity to share those precious moments. The spiritual journey I took as the moment of his death drew close, felt like a moment of awe. I will never be able to articulate the impact it has had on my life. I was standing at the bedside of someone I had shared my life with for over fifty years and dearly loved, and then suddenly I was alone. Joe had completed his final journey. The experience lasted for a moment or two, yet for me it will last for the rest of my life.

I knew then that it was important to write about the life of the patients and families we cared for—the memories shared, and the joys and sorrows.

Legacy of Love is unlike my past two books. It is mostly about the lives of others. They were strangers to me. As we talked, laughed, and sometimes shared tea and cookies, that wall was no longer present. As they related their stories, I realized the impact that we had on every life that we cared for.

Before I put the first word on paper, I had doubts. I felt it was outside of my realm of expertise. But I pushed ahead with the encouragement of my children, Mary Ellen and John. They gave me the confidence I needed. The nurses gave me the inspiration. They took me beyond familiar territory. They willingly shared their knowledge of the various disciplines of hospice care and offered invaluable suggestions. Writing this book was a rewarding and challenging experience. I am forever grateful to the patients, caregivers, and families, teens and young children who trusted me with their thoughts and feelings.

Once again, I am indebted to my wonderful daughter, Mary Ellen, and son, John, for their constructive criticism. I am grateful to my dear friend, Judge Paul Armstrong (Ret.), for his willingness to edit and share his knowledge. To Diana Sebzda, MA, LPC, CT and Director of Bereavement, I must give thanks for her constructive criticism and patience.

Many thanks to Lee Ellison, Director of Marketing, for reading chapter after chapter and offering constructive guidance. Peg McCully, RN, CHPN, Residence Administrator; Michele Leinaweaver, RN, CHPN, staff nurse at the Karen Ann Quinlan Home for Hospice; Mary Pugliese, RN, BSN, CHPN; and Lorri Optiz, MA, CT, Bereavement Counselor—I thank you all for your contributions and expertise. Many thanks to Marlina R. Schetting, LCSW, COO.

A special thanks to our dedicated nurses who lovingly care for patients wherever they call home: Sue Dell, RN, BSN; Heidi Rivera, RN; Sue Peters, RN; Laurel Mason, RN; and Sue Dougherty, Patient Care Volunteer Coordinator. A special thanks to the staff and volunteers who put the final touch on our efforts.

Legacy of Love is a gathering of personal stories and memories of those who have received care and those who have offered care. It will give you the opportunity to reflect on the many lives that have been touched by the Karen Ann Quinlan Hospice for four decades. It is about life in different stages. Each stage is filled with hope.

The experiences that our hospice professionals and volunteers share can teach a powerful lesson about the universal nature of loss and the bonds of friendship that are formed. One of the most heartening and inspiring effects of hospice is the fact that people can heal and are renewed in the process. They can become wiser, more compassionate, and stronger. Often, we grow through the losses we endure in life.

Families related stories of the life they shared with their loved one. The stories are from people of all ages.

Many talked about their hospice experience and the comfort they felt because we were there.

Some attended the Grief Recovery Lecture Series, or received bereavement counseling, and are grateful for the compassion, support, and hugs shared during a most difficult time. Hospice gave them the gift of precious quality time with their loved one. Those memories remain forever in their hearts.

Their stories and reflections are a testimony to the nurses, aides, social workers, clergy, staff, and volunteers who give so much of themselves to help ease the pain and suffering of patients and families. The stories are not about death with dignity, but about life with dignity. They are about life in different stages, each filled with hope and related with love and pride.

The nurses offer their perspective on the care they give to every family and how, with the team, they interact with patient and family. As caregivers, they must remain flexible, available, and open to each different environment they enter. No two situations are alike. Nurses can be an important vehicle to help the patient and family understand the preciousness of every day and accept the reality of death as part of human existence. In addition, nurses are there to make every day as meaningful and livable as possible for the patient.

Every day, hospice translates compassion into a personal plan of care that meets the physical, emotional, social, and spiritual needs of patient and family. A unique approach accomplishes this level of care and the extraordinary respect we have for all the lives we touch. The team is aware of the unique value of life in every stage. An important part of hospice is the bereavement programs, which are available to support a life when it has been altered by the loss of a loved one. Our counselors reach out not only to our hospice families but also to all in the communities we serve.

We recognize that young children who are grieving require a special type of support. They are too young to understand grief. The children’s expressive arts program provides an environment where they feel free to express their fears and to ask questions about death. With the guidance of our bereavement counselors, children participate in many activities, including body-tracing, sock puppets, and decorating masks, which help them identify and express their thoughts, feelings, and emotions regarding the loss of their loved one. At the conclusion of the program, there is always a special event shared with the parents, children, and staff. There have been magic shows to help explain the transformative qualities of grief, mini-memorial services to offer the children examples of rituals that can be done at home to honor and remember their loved one, or are given a Celebration of Life bag to help them remember they are not alone in their grief.

The experiences that the children (ages six to ten) share in their own words are a treasure. They are warm, loving memories of happy times spent with mom, dad, grandma, grandpa, or a dear friend. As they share their feelings through their art and play time, they become part of the group. As you read their words, you will feel the connection and love they felt for that special someone.

In 1998, we saw a need in the community for teenagers, and established a Teen Camp Weekend to fulfill their needs. Children and teenagers are often considered as forgotten mourners. They are physically incapable of mourning twenty-four hours a day. Teen grief may be complicated simply because their stage in life may be complicated. They need to be with their peers and get comfort from knowing that other teens experience the same feelings. They also need, but do not necessarily want, structure, consistency, and adult supervision. The goal of the camp weekend is to help them cope with their loss in a peaceful surrounding with their peers.

As the teens relate their stories, you will see how they bond with each other and with the adults. The first evening a rap session is held. Some are willing to share their stories, for others, it may take a day or two. They laugh and they cry together. As friendships form, they reach out to one another in the most caring way. Through the support and understanding of the counselors, the weekend will become a valuable part of their growth.

Their honesty and the depth of their feelings will touch you. Through it all, they have not lost hope—they look forward to tomorrow with anticipation and excitement. It is a wonderful gift. Many of them are now attending college. They look back on that weekend as a positive experience. They tend to be more mature than others their age. They have experienced life in darkness and therefore have a deeper appreciation for family, friends, and life itself. We continue to reach out to teens in a variety of ways, through pizza parties and support groups at local high schools.

Legacy of Love is an inspiring and honest look at the day-to-day experiences of those who place their trust in the hands of strangers. We are given the privilege to share their most precious moments at a most difficult time in the life of patient, family, teen, and child. Their lives and our lives are enriched through the process.

As hospice continues to grow, we have recognized the need to expand our services beyond the patients’ homes. We now serve patients at the Karen Ann Quinlan Home for Hospice, nursing homes, retirement homes, or wherever they call home.

FOREWORD

Throughout 1975 and 1976, the case that bears the name of Karen Ann Quinlan captured not only the cover of Newsweek and the front page of the New York Times but also the interest and empathy of the world. The legal plight of the daughter of Joseph and Julia Quinlan posed profound questions that to this day reverberate throughout society: How do we die? Is there a right to refuse treatment? Who should decide for incompetent patients? And on what basis—the patient’s wishes or best interests?

Questions surrounding decisions near the end of life became the core of bioethical discourse, and Karen Ann Quinlan’s case is the polestar of the debate. The New Jersey Supreme Court’s landmark decision remains the most frequently cited legal opinion in the annals of American bioethics.

The Quinlan story of love, courage, and compassion extends far beyond the courtroom, the statehouse and the bedside. Unprecedented national and international media coverage captured the headlines in newspapers large and small across the country, and as far away as France, Germany, England, Japan, and elsewhere around the world. Indeed, the witness and example of the entire Quinlan family—Joseph, Julia, Karen’s sister Mary Ellen, and brother John—led to the critically acclaimed NBC television movie starring Brian Keith and Piper Laurie as well as the publication by Doubleday of the best seller Karen Ann: The Quinlans Tell Their Story.

Deeply moved by Karen’s saga, Joseph and Julia Quinlan began the second chapter of their extraordinary life. They traveled the nation and world visiting prominent hospice facilities with the idea of further securing their daughter’s remarkable legacy by establishing the Karen Ann Quinlan Hospice. With humility and selfless generosity, they dedicated the proceeds from their book and television projects to provide the initial monies to fund the very hospice program that today celebrates its fortieth anniversary of providing care and comfort to a host of patients and families.

Julia Duane Quinlan, after the death of her beloved husband Joseph, with uncommon grace and dignity, began to publish her memoirs of an extraordinary life well lived. In her third book, Legacy of Love, she honors and celebrates not only the hospice patients and families cared for, but also those who have dedicated their professional and volunteer lives to the humane ethos of hospice. She shares a rare and poignant glimpse into a world of benevolent dedication that forever reminds us of how much we all owe to the wisdom, courage, and noble example of the Quinlan family.

—Hon. Paul W. Armstrong, J.S.C. (Ret.)

Judge Armstrong was privileged to represent Karen Ann and her family before the New Jersey Supreme Court.

THE BEGINNING

Many things alter the direction of one’s life—some you can control, some you leave at the mercy of destiny. What happened that early morning of April 15, 1975, changed my life, my family’s life, and the lives of hundreds of people.

As I reflect on past events, I realize there was no way I could have stopped them from happening. It seemed that my family and I were in the right place (or the wrong place) at the right time.

From 1975 to 1976, we had to fight for my daughter’s right to die in peace, free from the use of technology that was extending her death, not her life. On March 31, 1976, the New Jersey Supreme Court, in the landmark Quinlan Decision, granted our request to have our daughter placed back in a natural state. The decision was a gift to humanity. Today, like thousands of others, I am able to concentrate on the benefits that we have all received from this landmark decision. It authenticates the rights of all to make fundamental decisions at the end of life. We do not lose this right even if we are unable to speak for ourselves.

When Karen was successfully weaned from the respirator she was transferred to Morris View Nursing Home, where she lived for nine years, breathing on her own. While there, she had many bouts with pneumonia. I had the opportunity to visibly see the importance of caring for a patient who was beyond curing. I watched the nurses gently bathe my daughter and talk to her as they turned her body. They treated her in a most compassionate and caring way. It was then I realized that loving support is more important than mechanical support. In my heart, I felt there must be a more humane way to care for the dying.

As a result of our tragedy, our family made the decision to dedicate ourselves to establishing a program that would help families in similar situations. When we became aware of a new program called hospice that offered medical and physical care and emotional and spiritual support to terminally ill patients and their families, my late husband and I knew we had to learn more about it. For three years, we made a study of hospices and hospice-type facilities in our area and in other states. We traveled to the West Coast, met with Dr. Elisabeth Kubler-Ross, and had the privilege of meeting Dame Cicely Saunders at a conference in New Jersey. We spoke at length. She was most encouraging and invited Joe and I to visit her hospice facility in London, England.

As we visited the hospice facilities on the East Coast and West Coast, we did not sense a fear of death—only an acceptance. We spoke to patients and administrators, and we met with staff and volunteers. It was all very exciting and encouraging. There was no doubt in either of our minds that it would be a wonderful memorial to our daughter, Karen. Although she could not benefit from hospice care, we felt in some ways that she symbolized one of the most difficult issues of our time: the treatment of the terminally ill patient. She has come to symbolize the difficulty some have in dying in this age of eternal life.

Exactly five years to the day of our daughter’s accident, April 15, 1980, the Karen Ann Quinlan Hospice opening ceremony was held in Newton, New Jersey. We were thankful that as a family we were able to transform our daughter’s tragedy into a program that gave purpose and meaning to her life. Somehow, through God’s love we crossed a threshold where life has a deeper meaning. It was the beginning of a new life for me and my family and for the thousands of families we would serve.

The revenues we received from the sale of our book Karen Ann was used as seed money to establish the Karen Ann Quinlan Hospice in loving memory of our daughter. We had no desire to benefit financially from our daughter’s tragedy.

The opening of the hospice was an emotional day filled with joy and sorrow. As I reflected on the past years, I realized that Karen’s life had a purpose far beyond what she, or we, could have suspected, certainly far beyond my expectations. Her life continues to serve a purpose as our hospice celebrates forty years of service to the thousands of patients in northwest New Jersey and eastern Pennsylvania.

MAKING A DIFFERENCE

Hospice is the peace of pain eased, the compassion of hugs and hands held, and the caring touch of a stranger who becomes like a family member. Hospice is the Gift of Living.

Hospice is not just for those whose life is measured in months. It is also for the families whose lives will forever be altered by the loss of their loved one. We are there to work with the families, teens, and children through their grief journey.

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