Caregiver Resources

SLOW MEDICINE supports unrushed medical decisions in the years of aging and dying and is cautious about high-tech treatments that may prolong suffering.

Join Katy’s Slow Medicine Facebook Group
https://www.facebook.com/groups/108731512508516/

BOOKS:

My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis Mccullough, MD

Hard Choices for Loving People by Hank Dunn

Loving Your Parents When They Can No Longer Love You by Terry Hargrave

Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and Robert Butler

Dying Well: Peace and Possibilities at the End of Life by Ira Byock

The Patient’s Checklist by Elizabeth Bailey

Death Benefits: How Losing a Parent Can Change an Adult’s Life—for the Better by Jeanne Safer

Ambiguous Loss: Learning to Live with Unresolved Grief by Pauline Boss

Doing the Right Thing: Taking Care of Your Elderly Parents Even if They Didn’t Take Care of You by Roberta Satow

ARTICLES:

Krieger, Lisa. “The Cost of Dying: It’s Hard to Reject Care Even as Costs Soar.” San Jose Mercury News, Feb. 5, 2012. http://www.mercurynews.com/cost-of-dying/ci_19898736. An account of her father’s ten-day, $323,000 ICU death.

Wolff, Michael. “A Life Worth Ending: The Era of Medical Miracles Has Created a New Phase of Aging, as Far from Living as It Is from Dying. A Son’s Plea to Let His Mother Go.” New York, May 20, 2012. http://nymag.com/news/features/parent-health-care-2012-5. Heart valve surgery fixed his mother’s heart and worsened her dementia.

BLOGS:

New Old Age Blog: http://newoldage.blogs.nytimes.com/

RESOURCES:

  1. “Caring for the Elderly” resource list: http://www.nytimes.com/ref/health/noa_resources.html
  2. AARP, Caregiving Resource Center, under the “Home and Family” tab at AARP.org: http://www.aarp.org/home-family/caregiving/
  3. The Coalition for Compassionate Care of California has an excellent guide to legal-medical paperwork. http://www.coalitionccc.org/advance-health-planning.php.
  4. Do Not Resuscitate Bracelets. Metal bracelet from Medic-Alert Foundation. http://www.medicalert.org. 1-888-633-4298
  5. Preference-sensitive care (PDF): http://www.dartmouthatlas.org/downloads/reports/preference_sensitive.pdf

ORGANIZATIONS:

  1. Alzheimer’s Association local support groups, listed in the white pages. http://www.alz.org. 1-800-272-3900.
  2. Family Caregiver Alliance, classes and legislative advocacy. http://www.caregiver.org.
  3. The Center to Advance Palliative Care (CAPC): Find a palliative care doctor in your area. http://www.getpalliativecare.org. 212-201-2670.
  4. The National Hospice and Palliative Care Organization: http://www.nhpco.org. 1731 King Street, Suite 100, Alexandria, Virginia 22314. 800-658-8898. Referrals.
  5. Compassion and Choices: Hotline help on how to resist unwanted end-of-life medical treatment.  Legislative advocacy to improve end-of-life care and decriminalize physician-assisted dying.  http://www.compassionandchoices.org. P.O Box 101810, Denver, CO 80250. 1-800-247-7421.
  6. The Foundation for Informed Medical Decision-Making: http://informedmedicaldecisions.org/
  7. Heart Rhythm Society: http://www.hrsonline.org/

NOTES ABOUT GOVERNMENT AID:

  1. The federal Family and Medical Leave Act guarantees family caregivers unpaid time off.
  2. California and New Jersey provide paid family leave through state disability and unemployment departments.
  3. Medicare pays for limited home health aide visits. Hospice provides home services but to qualify, Medicare requires a letter from a doctor stating the patient has six months or less to live.
  4. Medicaid funds some family caregiving. See “How to Get Financial Help for Taking Care of Mom, Dad” at AARP.org’s Caregiving Resource Center. AARP.org/relationships/caregiving-resource-center

YOUR LEGAL RIGHTS:

  1. You have the legal right to refuse any medical treatment or ask for its withdrawal.
  2. An unwilling doctor is ethically obligated to refer you to someone who shares your values.
  3. Any request on behalf of another patient should legally be phrased in terms of their wishes, not your own.
  4. A DNR affirms your right to die free of electrical shocks and chest-pounding. If you call 911 in a panic, emergency medical technicians will resuscitate you, unless you have state-approved DNR identification on your body, such as a state-issued plastic bracelet. Regulations vary by state, but all honor a metal bracelet from Medic-Alert Foundation.

PACEMAKERS AND DEFIBRILLATORS: YOUR LEGAL AND MORAL RIGHT TO DEACTIVATION:

The American Heart Association, the Heart Rhythm Society, and the American College of Cardiologists agree that disabling a pacemaker or defibrillator is ethically permitted and is not assisted suicide, manslaughter or euthanasia. Refer your physician to: Lampert, Rachel, et al. “HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in Patients Nearing the End of Life or Requesting Withdrawal of Therapy.” Heart Rhythm. 7, no. 7 (July, 2010): 1008-1026. Available from the Heart Rhythm Society online under the section “Clinical Guidelines and Documents.”

ADVANCE DIRECTIVES (“LIVING WILLS”):

Boilerplate is out of date. Your tailored document should specifically discuss antibiotics, feeding tubes, pacemakers, defibrillators, and dementia. For a consultation, contact expert Jennifer Brokaw, MD at Good Medicine, San Francisco.

PHYSICIAN’S ORDERS FOR LIFE-SUSTAINING TREATMENT (POLST):

POLST orders carry more weight than living wills and DNRs.

POLST California has a downloadable version. http://www.capolst.org.

MEDICAL GUARDIANSHIP:

Sign a Durable Power of Attorney for Health Care appointing someone you trust to make medical choices when you can no longer make your own. Unless all family members are on the same page, doctors often override the “health care proxy” and provide maximum treatment due to fear of litigation.

WHEN COMMUNICATION BREAKS DOWN:

If you find yourself bewildered, powerless, and bedeviled by care in a hospital, ask for a “consult” with a palliative care physician, patient liaison, hospital social worker, hospice physician, or staff bioethicist. They can help negotiate this confusing and fragmented culture.

 

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