NNLM Reading Club: End of Life

NNLM Reading Club: End of Life


End of Life
Left Box

End of Life

As modern medicine extends people’s lives, it also extends the last stage of their lives, leading to a number of care decisions people must make as they approach death: hospice, palliative care, the decision to stop further treatment, caregiving for loved ones who are near death, and relevant legal documents like advance directives.


Have the Talk

Death and dying conversations are not pleasant, but the more you know, the better informed you are to make necessary decisions for yourself and for your loved ones.

The Conversation Project(link is external) is a public engagement initiative with a goal to have every person's wishes for end-of-life care expressed and respected. Their Conversation Guides can help you have ‘the conversation’ with the important people in your life about your – or their – wishes for care through the end of life. All the Guides are free to download and print and are available in three languages: English, Spanish, and Chinese.


    Plan Ahead

    It's never too soon to plan for end-of-life care options and state your preferences in advance. The legal documents that allow you to spell out your healthcare decisions ahead of time - so you continue to get the care you want and avoid treatments you do not want - are called advance directives.

    Middle Box

    Comfort Care

    The goal of palliative care is to make you as comfortable as possible and improve your quality of life. Palliative care is available at any time during a chronic or terminal illness. You can receive palliative care at the same time you receive other treatments for your illness. Its availability does not depend upon whether your condition can be cured.

    Comfort care for kids and their families: A mother’s story - Barbara Swoyer describes how palliative care has improved her son’s life and her own(link is external)

    Hospice focuses on a person’s final months of life. People in hospice always receive palliative care. To qualify for some hospice programs, patients must no longer be receiving treatments to cure their illness. Hospice can be provided in any setting — home, nursing home, assisted living facility(link is external), or inpatient hospital. Increasingly, people are choosing comfort care at the end of life(link is external).


    Caregivers and Caregiving

    The Family Caregiver Alliance (FCA)(link is external) is a national organization advocating for high-quality, cost-effective policies and programs on behalf of caregivers and caregiving.


    Bereavement

    "The worst loss is always your loss." - David Kessler

    Whether confronting one's own immortality or mourning the death of a loved one, grief is inevitable. How does one process the sadness and find meaning to help cushion the pain?

    Book

    Book cover image Finding Meaning

    "This beautiful, tender, wise book will help the many of us who struggle, for years or even decades, after losing someone we love. To take our pain and transmute it, and to find in our suffering a way of relieving the pain of others, can be a powerful form of healing. Whether our grief arises after a suicide, a difficult relationship, the death of a child or newborn, even the ambiguous losses that accompany mental illnesses and addiction - David reassures us that we can find in our deep pain an opportunity to contribute to the wider human story. Grief may not end, but David reassures us that it can change shape and be a source of generosity, love, and meaning." — Katy Butler, author of Knocking on Heaven's Door and The Art of Dying Wellaudiobook vector imageebook vector image

    Finding Meaning: The Sixth Stage of Grief | David Kessler | Scribner | 2020 reprint | 272 pages | ISBN: 978-1501192746

    Right Box

    Research

    The National Institutes of Health, the leading medical research center in the nation, supports and studies end-of-life research.
    National Institute on Aging (NIA)(link is external) provides leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.
    National Institute of Nursing Research (NINR)(link is external) works to enhance end-of-life and palliative care(link is external) treatments and therapies.
    National Institute on Drug Abuse (NIDA)(link is external) is the lead NIH agency supporting scientific research on drug use and its consequences.


    Medical Marijuana

    According to the National Conference of State Legislators(link is external), a total of 36 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands have approved comprehensive, publicly available medical marijuana/cannabis programs to manage pain and other symptoms.

    Despite the growing state support advocating marijuana for medical and adult recreational use, the United States Drug Enforcement Administration (DEA) continues to list marijuana and its cannabinoids as a Schedule I controlled substance, which means marijuana cannot legally be prescribed, possessed, or sold under federal law. The conflicting state and federal laws are challenging for hospice and palliative care programs, which are primarily funded by Medicare and whose patients are interested in medical cannabis(link is external) or already using it. It also presents ongoing challenges that impact research(link is external) on the safety and efficacy of cannabis.

    DrugFacts: Marijuana as Medicine

    Can't We Talk About Something More Pleasant?
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    NNLM Reading Club Book Kit

    Do you want to share this book with your reading club? The Network of the National Library of Medicine (NNLM) has made it easy to download the discussion questions, promotional materials, and supporting health information.


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    Discussion Guide for Can't We Talk About Something More Pleasant?: A Memoir
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    Book

    Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative as rife with laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. When it came to her elderly mother and father, Roz held to the practices of denial, avoidance, and distraction. But when Elizabeth Chast climbed a ladder to locate an old souvenir from the “crazy closet”-with predictable results-the tools that had served Roz well through her parents' seventies, eighties, and into their early nineties could no longer be deployed. While the particulars are Chast-ian in their idiosyncrasies-an anxious father who had relied heavily on his wife for stability as he slipped into dementia and a former assistant principal mother whose overbearing personality had sidelined Roz for decades-the themes are universal: adult children accepting a parental role; aging and unstable parents leaving a family home for an institution; dealing with uncomfortable physical intimacies; managing logistics; and hiring strangers to provide the most personal care.audiobook vector imageebook vector image

    #1 New York Times Bestseller | 2014 National Book Award Finalist | 2014 Kirkus Prize in nonfiction | National Book Critics Circle Award | 2014 Books for a Better Life Award

    Can't We Talk About Something More Pleasant? | Roz Chast | Bloomsbury USA | 2016 reprint | 228 pages | ISBN: 978-1632861016


    Headshot photo Roz ChastAuthor

    Roz Chast was born in Brooklyn, New York. Her cartoons began appearing in the New Yorker in 1978. Since then she has published hundreds of cartoons and written or illustrated more than a dozen books. Can't We Talk About Something More Pleasant? is her first memoir.

    Official Website of Roz Chast(link is external)

    The Five Invitations
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    NNLM Reading Club Book Kit

    Do you want to share this book with your reading club? The Network of the National Library of Medicine (NNLM) has made it easy to download the discussion questions, promotional materials, and supporting health information.


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    Discussion Guide for The Five Invitations: Discovering What Death Can Teach Us About Living Fully
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    Book cover image of The Five Invitations

    Book

    The Five Invitations show us how to wake up fully to our lives. They can be understood as best practices for anyone navigating a life transition, coping with loss or serious illness or a personal crisis; they guide us toward appreciating life’s preciousness. Weaving together pragmatic tools, real life stories and ancient wisdom, Frank helps us discover how an awareness of death can be a valuable companion on the road to living well, forging a rich and meaningful life free of regret.audiobook vector imageebook vector image

    The Five Invitations: Discovering What Death Can Teach Us About Living Fully | Frank Ostaseski | Flatiron Books | 2019 reprint | 304 pages | ISBN: 978-1250076748


    Author

    Headshot photo of Frank Ostaseski

    Frank Ostaseski is an internationally respected Buddhist teacher and visionary co-founder of the Zen Hospice Project, and founder of the Metta Institute. He has lectured at Harvard Medical School, the Mayo Clinic, Wisdom.2.0 and teaches at major spiritual centers around the globe. His groundbreaking work has been featured on the Bill Moyers PBS series On Our Own Terms, highlighted on The Oprah Winfrey Show, and honored by H.H. the Dalai Lama.

    Official Website of Frank Ostaseski

    The Unwinding of the Miracle
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    NNLM Reading Club Book Kit

    Do you want to share this book with your reading club? The Network of the National Library of Medicine (NNLM) has made it easy to download the discussion questions, promotional materials, and supporting health information.


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    Discussion Guide for The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After
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    Book

    Book cover image of The Unwinding of the MiracleThe Unwinding of the Miracle is the story of a vigorous life refracted through the prism of imminent death. When she was first diagnosed, Julie Yip-Williams sought clarity and guidance through the experience and, finding none, began to write her way through it - a chronicle that grew beyond her imagining. Motherhood, marriage, the immigrant experience, ambition, love, wanderlust, tennis, fortune-tellers, grief, reincarnation, jealousy, comfort, pain, the marvel of the body in full rebellion - this book is as sprawling and majestic as the life it records. It is inspiring and instructive, delightful and shattering. It is a book of indelible moments, seared deep - an incomparable guide to living vividly by facing hard truths consciously.audiobook vector imageebook vector image

    The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After | Julie Yip-Williams | Random House | 2020 reprint | 336 pages | ISBN: 978-0525511373


    Author

    Born blind in Vietnam, she narrowly escaped euthanasia at the hands of her grandmother, only to flee with her family the political upheaval of her country in the late 1970s. Loaded into a rickety boat with 300 other refugees, Julie made it to Hong Kong and, ultimately, America, where a surgeon at UCLA gave her partial sight. She would go on to become a Harvard-educated lawyer, with a husband, a family, and a life she had once assumed would be impossible. Then, at age 37, with two little girls at home, Julie was diagnosed with terminal metastatic colon cancer, and a different journey began. With humor, bracing honesty, and the cleansing power of well-deployed anger, Julie Yip-Williams set the stage for her lasting legacy and one final miracle: the story of her life.