by Katy Butler
Resources
Recommended Reading:
“AGS 2018 Updated Beers Criteria® for Potentially Inappropriate Medication Use in Older Adults.” Journal of the American Geriatrics Society (JAGS).
Megory Anderson. Sacred Dying: Creating Rituals for Embracing the End of Life New York: Da Capo Press; Rev and Expanded edition, 2003 and Sacred Dying Journal (Brewster, MA: Paraclete Press, 2018). Beautiful guides to creating simple rites of passage and spiritually preparing for a good end of life.
Elizabeth Bailey. The Patient’s Checklist: 10 Simple Hospital Checklists to Keep You Safe, Sane & Organized. New York: Sterling Publishing, 2012. If a frail person must enter the hospital, this is the book to use.
Jari Holland Buck. Hospital Stay Handbook: A Guide to Becoming a Patient Advocate for Your Loved Ones. Woodbury, MN: Llewellyn Publications, 2007.
Ira Byock, MD. Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books, 1998.
Roz Chast. Can’t We Talk About Something More Pleasant? A Memoir. New York: Bloomsbury USA; Reprint edition 2016. Graphic memoir of caring for aging parents, with honesty and humor.
Hank Dunn. Hard Choices for Loving People: Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness, 6th edition. Naples, FL: Quality of Life Publishing Co., 2016. The guide to difficult medical decisions.
Atul Gawande. Being Mortal: Medicine and What Matters in the End. New York: Picador, 2017.
Joan Halifax. Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death. Boston: Shambhala; Reprint edition 2009.
K. Gabriel Heiser. How to Protect Your Family’s Assets from Devastating Nursing Home Costs: Medicaid Secrets. Laredo, TX: Phylius Press, 2017.
Hospice Foundation of America. The Dying Process: A Guide for Caregivers. Free pamphlet.
Derek Humphries. Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying. New York: Delta Trade Paperback, 2010.
Barbara Karnes, RN. Gone from My Sight: The Dying Experience. Vancouver, WA: Barbara Karnes Publishing. A pamphlet describing the signs of approaching death.
David Kessler. The Needs of the Dying: A Guide for Bringing Hope, Comfort and Love to Life’s Final Chapter. New York: Harper Perennial, 2007.
Judith Redwing Keyssar. Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying. Transformations-in-Care, 2010.
Dennis McCullough. My Mother, Your Mother: Embracing “Slow Medicine,” The Compassionate Approach to Caring for Your Aging Loved Ones. New York: Harper Perennial, 2009.
Merck Manual of Geriatrics. West Point, PA: Merck (2000). Edited by Robert Berkow and Mark H. Beers. Detailed, helpful, and readable by educated laypeople.
Merck Manual of Health & Aging: The Comprehensive Guide to the changes and challenges of aging—for older adults and those who care for and about them. New York: Ballantine Books, 2005. Edited by Mark H. Beers. The layperson’s version of the Merck Manual of Geriatrics, with similar information and a simpler reading level. Very useful.
Emmett Miller, MD. Healing Journey. A guided imagery audio for healing and relaxation. CD or MP3 from Drmiller.com; as an e-book at audiobooks.com.
Virginia Morris. How to Care for Aging Parents: A One-Stop Resource for All Your Medical, Financial, Housing and Emotional Issues. New York: Workman Publishing Company, 3rd edition, 2014. This, to my mind, is the best of the encyclopedic guides.
Frank Osasteski. The Five Invitations. New York: Flatiron Press, 2017. Spiritual guidance from the cofounder of San Francisco Zen hospice.
Physician’s Desk Reference. Whippany, NJ: PDR Network 2016. Encyclopedia of medications, their purposes, and their side effects.
Phyllis Shacter. Choosing to Die: A Personal Story. Elective Death by Voluntarily Stopping Eating and Drinking (VSED) in the Face of Degenerative Disease. CreateSpace Independent Publishing Platform, 2017.
Elaine St. James. Simplify Your Life: 100 Ways to Slow Down and Enjoy the Things That Really Matter (New York: Hyperion, 2000). Not specifically for older people, but full of suggestions that prove helpful in coping with aging. See also, Elaine St. James, Simplify Your Work Life (New York: Hyperion, 2001) and Inner Simplicity (New York: Hyperion, 1995).
Victoria Sweet. God’s Hotel (New York: Riverhead Books, 2018) and Slow Medicine (New York: Riverhead Books, 2017). Brilliant, beautifully written first-person expositions of the philosophy of Slow Medicine, through the eyes of a talented physician-writer.
Bart Windrum. The Promised Landing: A Gateway to Peaceful Dying. Boulder, CO: Axiom Action, 2018. Brilliant analysis of the pathways of modern dying.
Films:
Alive Inside: A Story of Music and Memory. Directed by Michael Rossato-Bennett. Park City: Projector Media, 2014. About the healing power of music for people with dementia. Available on Amazon Video, Google Play, iTunes, Netflix, and YouTube.
Departures. Directed by Yojiro Takita. Montreal: Amuse Soft Entertainment, 2008. Beautiful Japanese movie about honoring the dead, told through the eyes of a young Buddhist cellist who takes a job as an undertaker. Available on Amazon Video, Google Play, iTunes, and YouTube.
Extremis. Directed by Dan Krauss. New York: f/8 Filmworks, 2016. Short documentary about life-and-death decisions in an intensive care unit at an Oakland, California, safety-net hospital. Featuring Dr. Jessica Nutik Zitter, a palliative care and ICU physician. Available on Netflix and YouTube.
Wit. Directed by Mike Nichols. Berlin: Avenue Pictures Productions, 2001. An English literature professor, dying alone in a hospital of metastatic ovarian cancer, seeks solace in John Donne while wrestling with institutional silence. Available on Amazon Video, HBO, and YouTube.
Further Sources of Reliable, Unbiased Medical Information:
American Cancer Society: at cancer.org. Unlike many promotional “disease foundations” funded by pharmaceutical companies, the ACS presents straightforward information and truly represents cancer patients.
Center for Science in the Public Interest: Excellent guides to medications.
Choosing Wisely: The American Board of Internal Medicine (ABIM) lists medical screenings and treatments that specialists say can be futile, risky, unnecessary, or otherwise do more harm than good. http://www.choosingwisely.org.
Cochrane Library: Nonbiased online reviews that compile evidence-based research on the effectiveness of many drugs and medical treatments, produced by a cooperative consortium of researchers. cochranelibrary.com.
Palliative Care of Wisconsin. Check their “Fast Facts” to learn what it is like to die from a specific disease, and how to manage its symptoms. mypcnow.org.
Drugs.com: Enter all your prescriptions and get a free, personalized report of possible interactions. https://www.drugs.com.
ePrognosis: Calculate the odds of how much time you have left: http://eprognosis.ucsf.edu/calculators.
Mayo Clinic: Reliable summaries of diseases and standard treatments. It’s my first “go-to.” http://www.mayoclinic.org.
MedShadow: Patients and health care providers discuss side effects of prescription medications. https://medshadow.org.
Number Needed to Treat (NNT): Run by physicians, NNT displays the proportion of people who will theoretically benefit from a drug or treatment, and the proportion who will suffer a side effect. It runs no advertisements and takes no pharmaceutical industry money. http://www.thennt.com.
UpToDate.com: Another well-vetted site for weighing the risks and benefits of treatments and medications. Built for physicians but readable by laypeople, it is backed by nonpartisan, noncommercial research. https://www.uptodate.com/home.
Worst Pills Best Pills: Neutral guidance on medication risks. http://www.worstpills.org.
Community Groups:
211: This line can be dialed direct in many areas for referrals to practical support services such as Meals on Wheels.
Alcoholics Anonymous: https://www.aa.org. See local listings in the White Pages f
or this free mutual support group, and others like it, including Food Addicts in Recovery Anonymous, Smokers Anonymous, and Overeaters Anonymous.
Area Agency on Aging: This local county agency is the first stop to search for services.
Centers for Medicare and Medicaid Services (CMS): Good website guide to Medicare basics at Medicare.gov.
Compassion and Choices: A group that promotes physician-assisted “right to die” legislation. It also has an excellent advice line for people resisting various forms of unwanted medical care.
Family Caregiver Alliance (Caregiver.org.): Political advocacy and referral to resources.
Get Palliative Care.org: Source for finding a palliative care practitioner by zip code. https://getpalliativecare.org.
Hospice Compare: Find local hospices, and compare their consumer satisfaction ratings at https://www.medicare.gov/hospicecompare.
Hospice Foundation of America: Information and referrals to local hospices.
Judy MacDonald Johnston’s “Prepare for a Good End of Life” TED Talk and website: Her excellent, reassuring checklist for preparing for a good end of life, is available at goodendoflife.com.
Lown Institute: This reformist medical group is concerned with overtreatment, overcharging, and other forms of non-patient-centered medicine.
Medicare Rights Center: Advocacy group with great website offering plain English explanations of Medicare coverage and benefits. 800-333-4114. Medicareinteractive.org.
Mindfulness Based Stress Reduction (MBSR): meditation courses are offered at many hospitals and useful in reducing chronic pain.
Sharethecare.org: Terrific guide to arranging practical volunteer support for chronically and terminally ill people. https://sharethecare.org.
Slow Medicine on Facebook: Closed, confidential discussion group, founded by Katy Butler, for family caregivers, gravely ill people, and professionals ranging from home health aides to hospice palliative care doctors and nurses. https://www.facebook.com.
State Health Insurance Assistance Program (SHIP): Funded by federal agencies and not affiliated with the insurance industry, this free counseling service can help you pick a Medicare insurance plan and access its benefits. A state-by-state list of SHIP programs is at the Seniors Resource Guide website: (seniorsresourceguide.com/National/SHIP).
The Villages Movement: A mutual help network for older people who want to age in place. Villagetovillage.org.
Blogs and Online Magazines:
GeriPal blog: Geriatrics and palliative care blog for medical professionals; also useful to laypeople. http://www.geripal.org.
KevinMD (on MedPage Today): Honest essays about doctors’ dilemmas, widely read and shared by medical professionals. http://www.kevinmd.com/blog.
NextAvenue.org: Excellent PBS online magazine covering health and aging.
Verywell.com: Excellent information on managing chronic illnesses.
Further Resources by Chapter:
CHAPTER 1: Resilience
Dan Buettner, The Blue Zones Solution: Eating and Living Like the World’s Healthiest People, National Geographic reprint edition 2017.
Chris Crowley and Henry S. Lodge, MD, Younger Next Year: Live Strong Fit and Sexy Until You’re 80 and Beyond. Workman, 2007.
Jane Fonda, YouTube exercise videos for older people. https://www.youtube.com/user/janefondatv.
Dr. Dean Ornish, Dr. Dean Ornish’s Program for Reversing Heart Disease: The Only System Scientifically Proven to Reverse Heart Disease Without Drugs or Surgery, Ivy Books, 1995.
Michael Pollan, Food Rules: An Eater’s Manual, Penguin Books, 2009.
Royal Canadian Air Force Exercise Plans for Physical Fitness, Echo Point Books & Media, reprint edition 2016. A favorite of actress Helen Mirren, these aerobic and strength-training exercises are doable anywhere without special equipment or expertise, and take no more than twenty minutes per day.
CHAPTER 2: Slowing Down
Drugs containing brain-threatening anticholinergics
• Sleep remedies: Benadryl, Sominex, Excedrin PM, Advil PM, Aleve PM, Nytol, Simply Sleep, Tylenol PM, and anything else containing diphenhydramine.
• Allergy remedies: Actifed, Chlor-Trimeton, Codeprex, Advil Allergy and Congestion Relief, and others containing chlorpheniramine Antihistamines (Loratadine, CopheneB, Bromax) containing brompheniramine.
• Muscle relaxants containing cyclobenzaprines (Amrix, Fexmid, Flexeril).
• Bladder control drugs containing oxybutynin (Ditropan, Oxytrol).
• Antispasmodics for irritable bowel: (Belladonna, Donnatal, Librax, Bentyl).
Other prescription drugs dangerous to the elderly
• Old-school tricyclic antidepressants (Elavil, doxepin, Sinequan). Alternatives are SSRIs like Prozac if tolerated (though they also pose fall risks), bupropion (Wellbutrin), or Buspar (buspirone).
• Benzodiazepines like Librium, Ativan, and Xanax, prescribed for anxiety, can worsen delirium and contribute to unsteady gait, fainting, falls, accidents, and fractures. Taper off slowly under medical supervision. (These drugs, however, can be helpful when on hospice.)
• Sleep drugs: Ambien, barbiturates, chloral hydrate, Lunesta, Sonata, Zaleplon, and Zolpidem all increase risks of cognitive impairment, delirium, unsteady gait, falls, fainting, and car accidents.
All are on the “Beers List” of drugs potentially harmful to the elderly, regularly updated by the American Geriatrics Society, and summarized well at Pharmacist’s Letter/Prescriber’s Letter (pharmacistsletter.com).
The Conversation Project (theconversationproject.org) has downloadable “Starter Kits” to help you open up discussions of end-of-life medical choices with family and friends. I especially recommend their guide for exploring issues involving dementia. https://theconversationproject.org/starter-kits/.
CHAPTER 3: Adaptation
The following HMOs and Medicare Advantage plans provide well-coordinated medical care and are highly rated:
• CareMore Health Systems throughout California
• Geisinger Health Systems in Pennsylvania and New Jersey
• Kaiser Permanente in many states
• Optum Healthcare and ProHealth in Florida
• Sharp Rees-Stealy in San Diego, California
• Bon Secours in Richmond, Virginia
• Meridian Health in Hackensack, New Jersey
• Intermountain Healthcare in Utah and Idaho
• OSF Medical Group in Morton, Illinois
• University of Pittsburgh Medical Center
• University of Alabama at Birmingham, Center for Palliative and Supportive Care
The National Library Service provides free braille and talking books and magazines, by mail and via downloads, for people with low vision, blindness, or physical disability that prevents them from reading or holding the printed page. https://www.loc.gov/nls.
This Caring Home offers adaptive home appliances, including stoves that turn off automatically to reduce the risk of fire. http://www.thiscaringhome.org.
Marinvillages.org and techenhancedlife.com provide fall-proofing checklists to help older adults remain safely at home. http://marinvillages.org and https://www.techenhancedlife.com.
The Village to Village movement will help you find a network of mutual support in your area, or help you start your own. www.vtvnetwork.org.
K. Gabriel Heiser’s How to Protect Your Family’s Assets from Devastating Nursing Home Costs: Medicaid Secrets is an excellent guide to preparing financially for Medicaid.
CHAPTER 4: Awareness of Mortality
Ira Byock, MD. The Four Things That Matter Most: A Book About Living, 10th anniversary edition. New York: Atria Books, 2014.
CHAPTER 5: House of Cards
The following organizations are national leaders in home-based medical care:
• Aspire Healthcare, an add-on offered by health plans in many states
• Doctors on Call, Brooklyn, New York
• House Call Providers, Portland, Or
egon
• Boston Medical Center’s House Call program, Boston, Massachusetts
• Christiana Health Services, Wilmington, Delaware
• Cleveland Clinic Home Care Services, Independence, Ohio
• Doctors Making House calls, Durham, North Carolina
• Med Star Washington Hospital Center, Washington, D.C.
• National House Call Practitioners Group, Austin, Texas
• North Shore Long Island Jewish Health Care’s Physician House calls Program, Westbury, New York
• UCSF Medical Center Geriatrics Department, San Francisco, California
• University of Pennsylvania Health System House Call Program
• Veterans Administration’s Home Based Primary Care program (HBPC)
• Virginia Commonwealth University programs in Pennsylvania, Virginia, and Washington, D.C.
• Visiting Physicians Associations in Dallas, Texas; Flint and Lansing, Michigan; Jacksonville, Florida; and Milwaukee, Wisconsin
CHAPTER 6: Preparing for a Good Death
Ira Byock, Dying Well: Peace and Possibilities at the End of Life (New York: Riverhead Books, 1998).
Cappy Caposella and Sheila Warnock, Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (New York: Fireside, 2004), and the website, Sharethecare.org.
Margareta Magnusson, The Gentle Art of Swedish Death Cleaning: How to Free Yourself and Your Family from a Lifetime of Clutter (New York: Scribner, 2018).
Notes
“I worried”: From Swan, Beacon Press © 2012, Mary Oliver and Beacon Press. Reprinted by permission.
INTRODUCTION: The Lost Art of Dying
favorite daughter Mary: Family history drawn from the diaries of Philippa Norman Butler and her daughter-in-law, Marie Watts Butler, and from Karoo Morning by Guy Butler (David Philip Publishers, South Africa, 1982).
upper reaches: The exceptions are violence, suicide, accidents, and drug overdoses, the major causes of death in the U.S. prior to the age of forty-five.
“habits of the heart”: This phrase, coined by Alexis de Tocqueville to describe the customs and ceremonies of daily life, was popularized by sociologist Robert Bellah in Habits of the Heart: Individualism and Commitment in American Life (University of California Press, 1985, 2007).