DYING, SURVIVING, AND AGING WITH GRACE

Click on An Old Friend Calls in a Promise (or scroll down to end of page) to read a moving story by Bayla Kraft, about how helping her dying friend Karen changed the way she experienced her own life.

See also a number of helpful pieces under What to say (or not say) to those who are dying or grieving.

Advice for helping a friend with cancer (Suleika Jaquad, author of the Life, Interrupted blogs).

The Art of Being a Healing Presence: A Guide for Those in Caring Relationships by James E. Miller with Susan Cutshall. How to be present in a way that is healing, nourishing, and potentially even transforming.

At the end of a loved one's life, why is it so hard to let go? (Craig Bowron, Washington Post, 2-22-12). Craig Bowron is a hospital-based internist in Minneapolis. "When families talk about letting their loved ones die 'naturally,[ they often mean 'in their sleep' — not from a treatable illness such as a stroke, cancer or an infection. Choosing to let a loved one pass away by not treating an illness feels too complicit; conversely, choosing treatment that will push a patient into further suffering somehow feels like taking care of him. While it's easy to empathize with these family members' wishes, what they don't appreciate is that very few elderly patients are lucky enough to die in their sleep. Almost everyone dies of something."

Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax (foreword by Ira Byock). Be still, let go, listen, and be open to the unknown

The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)

A Best Friend Is Gone. Grief Is Here to Stay (Martha Randolph Carr, Washington Post 3-7-05)

Caregiver's Handbook (Robert S. Stall on how to care for both the caregiver and the elderly care-receiver, San Diego County Mental Health Services)

Caring for a Dying Loved One: Providing Safety and Comfort to the Dying (Angela Morrow, RN, About.com, 12-28-09)

Comfortable with Death (Elizabeth Zimmer, Obit Magazine, 5-14-10, on helping others transition out of life)

Coping With Crises Close to Someone Else's Heart (Harriet Brown, NYTimes 8-16-10), essay on why some people distance themselves from those suffering a crisis or offer "pseudo-care" instead of real help)

Despite the losses, so much gained (Leah Keith, Modern Love, NY Times, 4-11-13), “When my rare tumor was found, I thought it was the worst thing that could ever happen to me. Now I know I was the luckiest woman in the world,” writes Keith. “For 13 lucky months, I got to stare into the abyss and feel safe jumping into it because a man who loved me promised to hold my hand all the way down.”

Developmental Landmarks and Taskwork for the End of Life (Ira Byock, DyingWell.org)

'Dignity therapy' gives comfort to dying patients. Helping terminally ill patients pass on their final thoughts may help give them a better quality of life, reports Harvey Chochinov, head of a Canadian research study (Jonathan Shorman, USA Today 7-11-11, on study published in Lancet Oncology)

Dying: A Book of Comfort, ed. Pat McNees. “This remarkable collection, coming from personal experience and wide reading, will help many find the potential of growth through loss.” ~ Dame Cicely Saunders, founder of the hospice movement

A Dying Person's Guide to Dying (Roger C. Bone, Hospice.net)

Dying to Live, Part 1 (snippets in this promo video for a documentary suggest indirectly how to be helpful to someone with a life-limiting illness). Part 2 of this mini-video helps encourage more comfort facing death, or being with a dying friend. You can buy the whole documentary on video, Dying to Live. Intimate interviews on coping with common end-of-life issues: grief & loss, hospice, palliative care, euthanasia, bereavement, suicide, counseling, child death, green lifestyle, terminal illness, psychology, nursing, death and dying.

Dying Well by Ira Byock. In this classic guide, Byock makes a forceful case for hospice care and against physician-assisted suicide. He demonstrates how the physical pain and emotional despair of the dying may be handled.

ElderCare Online's Caregiver Support Center

The Etiquette of Illness: What to Say When You Can't Find the Words by Susan P. Halpern. How to be helpful or comforting, yet not intrusive (and how, if you're the patient, to ask for help). Above all, what not to say.

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley (a very helpful guide)

For Dying People, A Chance To Shape Their Legacy (Julie Bierach, Weekend Edition, NPR, 4-9-11). Imagine that you've just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye. At the website of BJC Palliative Home Care and Hospice you can download a patient handbook and/​or a caregiver instruction manual (PDFs), and a PDF of Courtney Strain's What you can do when a friend (like me) faces the end of life. Examples: Hallmark doesn't fix it all. ... Write a letter or send an email. ... [Talk to me when] I'm strong enough to sit and laugh or cry with you ... Instead of asking, "What can I do for you?" offer some concrete suggestions — like bringing a meal or treat, or running errands ..

Frequently asked questions about end-of-life experience and care (Ira Byock, DyingWell.org)

Grief Counseling Resource Guide: A Field Manual (NY State Office of Mental Health). This guide for bereavement workers may be helpful to others, also. See for example, Alan Wolfelt on "companioning" -- to honor the spirit, not the intellect; to be curious, not an expert; to learn from, not teach, the bereaved; to walk alongside, not lead; to "discover the gift of sacred silence," not fill "every painful moment with words"; to "listen with the heart," not analyze the head; to bear "witness to the struggles of others," not direct those struggles; to be "present to another's pain," not "taking away the pain"; to respect "disorder and confusion," not impose "order and logic" -- and yet to help them organize day-to-day tasks and get them done. At the heart of grief counseling is "validation," according to Ken Doka: "reassurance that what they are experiencing is normal." And yet there are many different ways to grieve. Reading this helpful short guide for counselors will help regular people know how to be helpful instead of unhelpful! See also Companioning vs. Treating: Beyond the Medical Model of Bereavement Caregiving by Alan D. Wolfelt

Helping a Friend Who Is Dying (Alan D. Wolfelt, Hospice)

Helping dying patients offers Canadians life lessons (Carmen Chai,National Post, Canada 12-6-10)."Canadian hospice care workers say their daily experience caring for dying patients has changed their personal lives — but in a positive way, according to a new study that looks at how people are shaped by exposure to death....many of respondents in his study admitted to rearranging priorities in their lives after learning from their dying patients that they wished they had spent more time with family or focused on enjoying life instead of working."

Helping Our Loved Ones Die Video 1 of a 12-part video series, by Stan Goldberg, author of Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life

Helping Yourself Live While You Are Dying (Alan D. Wolfelt, on Hospice.net)

How to Conduct Compassionate Interviews at the Scene of a Tragedy & Dealing with Our Own Responses to What We See and Hear: A Guide for Journalists by Russell Friedman and John W. James (The Grief Recovery Institute Educational Foundation--a 28-page PDF file well worth downloading, whether or not you're a journalist. This may be helpful also if you aren't sure what's helpful in talking with a friend who is dying or grieving--because, of course, people who are dying are also grieving.)

How to Comfort the Dying (wikiHow, a little crude, but a good basic checklist)

How to give death a good name (Elizabeth Grice, The Telegraph, 6-23-08). With society now obsessed by the desire to prolong life, Grice asks if we have lost the art of dying well and examines practical steps to change our attitudes

How to Help a Grieving Friend (PDF, Fox Valley Hospice)

How to Say Good-bye When Someone You Love Is Dying . Regrets and lessons from grieving survivors (Paula Spencer Scott, Caring.com)

How to Talk to a Dying Friend (eHow)

How to tell children a parent is dying

Intimate Death: How the Dying Teach Us How to Live by Marie de Hennezel. A bestseller in France, this book conveys well the power of effective palliative care--of being present for the dying, and helping them with unfinished business. She recommends playing John Rutter's Faure: Requiem and other choral music for someone who is dying.

Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life -- a practical book, with explanations and to-do lists for everything from advance directives and why a living will is not enough to funeral plans, living with a bad prognosis and dealing with uncertainty, caregiving, hospice, communicating with doctors, assisted dying, organ donation, autopsy, and legacies. Offer to read up on these things for your friend, and/​or to give her a copy of the book.

Just Because I’m Dying Doesn’t Mean I’m Any Less Capable of Being Your Friend (BJC Hospice -- an interview conducted with Courtney Strain weeks before she died). “Don’t be afraid to engage with someone who is dying. We’re afraid because that person reminds us of our mortality. Don’t be scared to do the wrong thing.”

Keeping a Promise When a Life Is Near Its End (Ellen D. Feld, MD, The New York Times, 11-10-08)

The Long Goodbye: a memoir by Meghan O'Rourke, which Alice Gregory reviews for NPR in 'The Long Goodbye': A Syllabus For Modern Mourning. An excerpt: "In the days following my mother's death, I did not know what I was supposed to do, nor, it seemed, did my friends and colleagues, especially those who had never suffered a similar loss. Some sent flowers but did not call for weeks. One friend launched into fifteen minutes of small talk when she saw me, before asking how I was, as if we had to warm up before diving into the churning, dangerous waters of grief. Others sent worried e-mails a few weeks later, signing off: 'I hope you're doing well.' It was a kind sentiment, but it made me angry. I was not 'doing well.' And I found no relief in that worn-out refrain that at least my mother was 'no longer suffering.'"

Making Plans for the Last Chapter of Life (Talk of the Nation, 8-31-09--listen or read transcript). Sherwin Nuland and Ira Byock tell Neal Conan how they talk with patients who are facing the ends of their lives.

Movies about death and dying. (Sometimes all someone wants is to cuddle and watch a movie together. And these might work.)

Music for Funerals and Memorial Services. This is also a good page for finding music to sooth, cheer, or uplift -- and to help a dying person grieve the coming loss of life, and celebrate the life they lived.

The Myth of the Stages of Dying, Death and Grief by Russell Friedman and John W. James (PDF, Grief.net). You will find many more articles by these authors here, about grief recovery and on people's reaction to loss and what to do about it.

The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler (writing about the need to be treated as a living human being, the need for hope, the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and the need to be free of physical pain). Kessler also wrote Visions, Trips, and Crowded Rooms: Who and What You See Before You Die

The Passing: What to Expect When Witnessing a Loved One's Death (Paula Spencer Scott, Caring.com). Relatives describe the death experience

POLST. What is a POLST and Do I Need One? (Angela Morrow, RN, About.com 3-1-10). A POLST is a “physician’s order for life sustaining treatment.” A relatively new document, the POLST is a way to translate a living will or an oral advance directive into physician's orders that must be followed by emergency personnel and health care providers. The POLST may state a patient's preferences for, against, and about CPR, medical interventions, antibiotics, and artificially administered nutrition and hydration.

Providing Comfort for a Dying Loved One (End-of-Life Care Partnership). What you may see as death approaches. Ways you can comfort your loved one.

Recommended Reading, Viewing, and Listening (including children's books about death and loss)

A Serious Illness Can Isolate a Family: Gestures of support help greatly, writes Louise Bonnett-Rampersaud, for the Washington Post (8-4-09). "What I've come to realize," she writes, "as I've watched my husband struggle for his life over the past four years [vascular Ehlers-Danlosis] that there are certain things people can say and do to make that wait more bearable, and there are words and actions that miss the mark, triggering even more distress. It boils down to what I have come to call 'terminal etiquette.' Families in this kind of crisis suffer with an "incredible sense of isolation." Child-life specialist Jeanne Higgins Bergin advises "that people should acknowledge the situation, be empathetic, reach out and offer specific ways to help the family." Offer, "for example, to cook, clean, do laundry, run errands, include our children in their family's activities, plant flowers, rake leaves and shovel our snow." Offer to drop off milk, bread, and bananas every Monday and Friday -- "creating a sense of routine and continuity in a family's life that has been turned upside down."

Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela, Sheila Warnock, and Sukie Miller

Signs and Symptoms of Approaching Death (Hospice Patients Alliance)

6 Ways to Help When Someone Has Cancer (Jessie Gruman, a three-time cancer survivor, a Parade slide show). In brief: Acknowledge the situation; offer help only if you can deliver; guard patient's privacy (don't share news without permission); listen--really listen; remember that hope is a gift, not everyone feels (don't insist patient feel positive); ensure our dignity (make us feel valued--not just a cancer patient).

Spiritual Directors International (SDs accompany people on a spiritual journey) has excellent resources -- including spiritual directors, but also PDFs of articles from the journal Presence (download, for example, The Compassionate Observer by Jane E. Vennard). To learn more: What is spiritual direction?> (contains answers specific to various spiritual traditions).

Talking with a Sick Person (excerpt from the helpful book Handbook for Mortals by Joanne Lynn and Joan Harrold. Read more excerpts here.

10 Signs Death Is Near (Paula Spencer Scott, Caring.com). What to expect and how to respond to the natural dying process

Things To Do When Time May Be Short (from Handbook for Mortals

Tips to How to Help a Grieving Loved One During the Holidays (PDF, Fox Valley Hospice)

What to say (or not say) to those who are dying or grieving

• How not to say the wrong thing (Susan Silk and Barry Goldman, Los Angeles Times, 4-7-13). It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. Comfort those at the center (the patient, patient's family), kvetch to those further away from the center.
• But I Don't Know What to Say... (Fran Moreland Johns, Beliefnet, author of Dying
• Ideas for a Time When Someone You Love Is Dying by James E. Miller, author of One You Love Is Dying: 12 Thoughts to Guide You on the Journey
• Five Important Things to Say to all our loved ones, regularly: Thank you; I love you; I'll never forget...; I'm sorry...; I forgive you. (St. Charles Church)
• What Not to Say at the Bedside (Judith Graham interviews Letty Cottin Pogrebin, who offers more advice in her book How to Be A Friend to a Friend Who’s Sick
• What do you (not) say to a dying friend (Janice Gaston, Scripps Howard News Service, San Diego Union)
• What to Say to a Dying Person (Myrrh Hector)
• How to Talk to a Dying Person (Lisa DeLuca, Caregiver Support). Advice from hospice social worker Margaret Bromberg.
• Words of Comfort for the Dying (Father Bill Haymaker, Big World Small Boat)
• What Does Someone Dying Need? (Rex Winsbury, on Hospice.net)
• The Etiquette of Illness: What to Say When You Can't Find the Words by Susan P. Halpern. How to be helpful or comforting, yet not intrusive (and how, if you're the patient, to ask for help). Above all, what not to say.
• Being there, How to Help a Friend Who Is Dying (PDF, Fox Valley Hospice)
• What Dad Wants Dad Gets (Joan Hitchens, Grief Reflections blog, 2-24-11)
• Youth Suicide: How You Can Help the Survivors (Florence Isaacs, author of My Deepest Sympathies...: Meaningful Sentiments for Condolence Notes and Conversations, Plus a Guide to Eulogies)[Back to Top]

What Dying People Want: Practical Wisdom For The End Of Life, a book by David Kuhl

What people talk about before they die (Kerry Egan, hospice chaplain in Massachusetts and author of Fumbling: A Pilgrimage Tale of Love, Grief, and Spiritual Renewal on the Camino de Santiago

What you can do when a friend (like me) faces the end of life (Courtney Strain for BJC Palliative Home Care and Hospice, PDF file)

When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses by Elise NeeDell Babcock. When someone you care about is diagnosed with cancer, what should you say? What should you not say? What are the best ways to offer help, or to help children understand what is happening?

When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span. What will you do when you get the call that a loved one has had a heart attack or a stroke? Or when you realize that a family member is too frail to live alone, but too healthy for a nursing home?

When your dying friend needs help (what to say and do, and other frequently asked questions -- HospiceDirectory.org)