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My Joy, My Sorrow: Karen Ann's Mother Remembers

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For those unfamiliar with the story of Karen Ann Quinlan, the best place to begin this book is Appendix A, "The Legal Battle: A Chronology," which outlines the family's struggle to have their daughter weaned from her respirator, even though that act was likely to hasten her death. You will see that in 1975 Karen Ann was ruled to be in a persistent vegetative state with no hope of recovery, that her parents' efforts to minimize what they saw as her suffering were blocked by physicians and hospital administrators, and that their wishes were followed only after a ruling by the New Jersey Supreme Court.

In the pages preceding the appendix, we meet Joe and Julia Quinlan, devout Catholics, who married in 1946 and by 1957 had three children. They adopted their first child, Karen Ann, and Julia gave birth to Ellen and John. We learn about their early family life, with children attending Catholic schools and parents taking an active role in their lives. Joe and Julia embarked on a "new normal" on April 15, 1975, when they were called to the hospital where 21-yeaer-old Karen lay in a coma, which was shortly ruled to be irreversible.

Though Julia's story involves legal battles to have the respirator removed, its real significance is the family's strength and faith and the support they received from others, including clergy and law enforcement officers, who helped the family protect Karen's privacy from the press and public, some of whom were making threats.

As the book closes, we see the tight family bond and strong faith in action. After Karen's death in 1985, in appreciation for the nursing home care she received for those 10 years, and to honor her memory, Joe and Julia got involved in hospice work. Eventually Karen's brother and sister also devoted time to the cause. From 10 years of "waiting for Karen's time" to their subsequent efforts to ease the final days of others, this family is truly inspirational in part because they seem not to think of themselves as heroes.

This is a beautifully written book about a family of seemingly ordinary people who, each in their own way, proved to be great human beings.
They were thrust into an incredible nightmare when their Karen Ann went into an irreversible coma.
The family's only concerns were to do what they thought was right and what they knew Karen Ann would have wanted them to do. Their struggle to follow through on their beliefs and Karen's wishes changed the world.
People are known by the company they keep. We are fortunate that this deeply personal book allows us to keep the company of Julia Quinlan.
Thank you Julia, for this wonderful gift.

This book needed to be written. As a bereaved parent myself, I understand the importance of wanting to keep the memory of a dead child/children alive. Julia Quinlan's willingness to re-live the painful memories of her child's suffering and ultimate death show remarkable courage. She is indeed a very courageous woman. Her appeal to the younger generation of the consequences of dugs mised with alcohol is vital information. However, what comes through more in this book is the care-giving provided during Karen-Anne's (and her family's) ordeal. I admire Julia's honesty and her credibility in writing this book. She deserves to be heard!

I am trying not to be biased, since I am a volunteer for the Karen Ann Quinlan Hospice. The book is so wonderful in that it is such a sad story, yet told without self-pity. With all Mrs. Quinlan has accomplished, it is hard to imagine the agony she has suffered. And all the good that came out of it. A beautiful book.

An amazing book in which Julia Quinlan tells her life story and the circumstances of the famous Karen An Quinlan case. Mrs. Quinlan explains that her deep faith and family values help her cope with this tragedy, which is any parent's worst nightmare.

That she is able to retain her faith and love of God is a miracle.

A quick read.

Anyone who has, is, or might be involved in making " Life and Death " decisions for a loved one needs to read this book.

"My Joy, My Sorrow" is the very personal tale of how a family dealt with a heartbreaking tragedy. Published in 2005 by St. Anthony Messenger Press, it includes a forward by the bishop emeritus of the Diocese of Patterson, New Jersey. Because of those associations, one should be able to assume that this book is theologically complete with regard to end of life issues. Unfortunately, that does not appear to be the case.

Karen Ann Quinlan and Terri Schiavo were born less than a decade apart; they grew up only 75 miles apart. Both were the eldest of intact, Catholic families of three children (Two girls and a boy, in both cases). Both families were drawn into media and legal frenzies, as the result of medical decisions. Yet, there was a major, major difference. In one case, the decision was about "extraordinary treatment." In the other, the decision was about "ordinary care." There is an enormously relevant distinction between these two, which hospice advocate Julia Duane Quinlan fails to explore. It is unfortunate that Bishop Rodimer graced this book with a foreward. It is unfortunate that St. anthony Messenger Press chose to publish it.

In 2005, it would have been a safe assumption by St. Anthony Messenger Press that "My Joy, My Sorrow" could capitalize on that year's frenzy about end of life issues, resulting from Terri Schiavo's tragic situation. Terri Schiavo died on March 31, 2005, when Michael Schiavo prevailed in a legal battle with her parents and siblings. As the result of Michael's "victory," the "ordinary care" of nutrition and hydration (i.e., food and water) were discontinued from Terri. In light of this timing, as well as the hospice advocacy work of Karen Ann's mom & her prominence as a speaker on end of life issues, it is more than odd that "My Joy, My Sorrow" makes absolutely no mention of Terri Schiavo or a 2004 statement by Paul John Paul II. Hence, I believe "My Joy, My Sorrow" to be theologically incomplete and potentially misleading.

As per his 3/20/2004 address to the International Congress, "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas," Pope John Paul II stated:
* "The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery.
* "I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering....
* "The evaluation of probabilities, founded on waning hopes for recovery when the vegetative state is prolonged beyond a year, cannot ethically justify the cessation or interruption of minimal care for the patient, including nutrition and hydration. Death by starvation or dehydration is, in fact, the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission."

In 2006, Karen Ann's mom was paired with Michael Schiavo at a bioethics symposium at the University of Pennsylvania. Mrs. Quinlan, what exactly were you thinking?