Knocking on Heaven's Door: The Path to a Better Way of Death (43 page)

voluntarily stop eating and drinking, one of the few methods legally

and practically open to them for ending their lives.) The pain of

infections can be managed with painkillers rather than antibiotics.

Depriving a demented parent of a natural death may seem loving,

but it is rarely kind. Think about whether your actions are bringing

more or less suffering to your parent and to the world. Comfort

yourself: it is the demented with no family who are most likely to

be subjected to feeding tubes and antibiotics in their last weeks

and months of life. Saying no is often an expression of love.

Dying is not an emergency. Emergency rooms, 911 systems,

and intensive care units are all primed to prevent natural death.

Engage with them with caution. The most important sentences

in this book may be, “I request a palliative care consult,” “Can

you refer me to hospice?” “I request comfort measures only,”

and “I am concerned about quality of life.”

StAGe 6: beReAveMent

Once upon a time, when people were more likely to be born

and to die in the same town, grieving and mourning were com-

munity events, not psychological diagnoses. In Victorian times,

widows wore black for at least a year. For decades after the car-

nage of World War I, British people in villages, towns, and cit-

ies lined up once a year on the streets to observe a shared five

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minutes of memorial silence. In my English childhood, people

still wore black armbands throughout the day of a funeral.

There is less permission to grieve and mourn openly today,

and it’s especially hard for those who live far away from parents

and birthplaces. The ones who love us best don’t necessarily

know our parents; those who loved our parents often barely

know us. And yet, at the great turning points—as we cross the

thresholds of birth, marriage, adulthood, and the final, inevi-

table loss of our earthly personality and all we love—we often

hunger for ritual and community.

Let the funeral or memorial service bless you with the heal-

ing power of shared grieving. Fall into the old forms, remake

them as you need to, and let them support you. Don’t be tyr-

annized by the notion of “closure,” or be too quick to call the

service a “celebration of life,” or to tell those who gather not to

shed tears. Rituals—particularly holding my parents’ memorial

services, responding to condolence letters, and lighting a yah-

rzeit candle each year in remembrance of them—helped me

give form to the deep, complicated emotions (sorrow, regret,

agony, numbness, loss, guilt, exhaustion, remorse, a hunger for

solitude, irritability, and secret relief) that I felt after they died.

Most people I know who’ve helped their parents through the

final passage regret having done too much or too little or are

haunted by their parents’ suffering during deaths that came too

soon or too late. Please forgive yourself. You’ve done your best.

Do not be tyrannized by the notion of the “good death.”

Hospice programs offer bereavement groups, and some

county mental health associations offer grief counseling. If you

do not qualify for free services, you can usually pay modestly

out of pocket. I found the program at my local hospice excel-

lent, and well worth what I paid.

In my childhood in England, amid the ruined buildings left

by the German bombardment of the Second World War, people

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tied black bands around their jacket sleeves and wore them all

through the day when they attended a funeral. Mourning was not

an embarrassment. In Victorian times, widows wore black “weeds”

for a year, and sometimes for life. When I was in my twenties

and living in San Francisco’s North Beach, I’d watch brass bands

parade slowly down Green Street, in front of Chinese funeral pro-

cessions, the black hearse decked with flowers and photographs.

I can’t help thinking that if we spoke of death more directly

and honored its sacredness more—rather than honoring only

“the sacredness of life” and pretending that death isn’t part of

Nature or God’s plan—we might respond more wisely in its

face, and more fully afterward.

—Toni

ReSOuRceS

I found the following books and resources helpful.

caregiving and Medical Advocacy

Bailey, Elizabeth.
The Patient’s Checklist.
New York: Sterling, 2011. A sobering, defensive manual for reducing the risks attending hospital stays.

Byock, Ira.
Dying Well: Peace and Possibilities at the End of Life.
New York: Riverhead Books, 1997. A beautiful guide to the emotional work at the

approach of the end of life.

Coste, Joanne Koenig.
Learning to Speak Alzheimer’s: A Groundbreaking
Approach for Everyone Dealing with the Disease
. New York: Houghton Mif-flin, 2003.

Dunn, Hank.
Hard Choices for Loving People.
Lansdowne, VA: A & A Publishers, 2009. 43068 Habitat Circle, Lansdowne, VA, 20176–8254. 1-571-333-

0169. Written by a hospice chaplain, this simple 80-page pamphlet is worth its weight in gold. A moral and practical framework for medical decisions, with sections on palliative care, CPR, feeding tubes, antibiotics, respirators, dialysis, and intravenous fluids.

Gross, Jane.
A Bittersweet Season: Caring for Our Aging Parents—and Ourselves.
New York: Alfred A. Knopf, 2011. Guidance on Medicare, Medicaid, nursing homes, and assisted living. Gross has also prepared “Caring for KnockingHeaven_ARC.indd 286

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the Elderly” (http://www.nytimes.com/ref/health/noa_resources.html), an

exhaustive resource guide from the
New York Times
’s excellent “New Old Age” blog, which Gross pioneered. http://newoldage.blogs.nytimes.com.

McCullough, Dennis.
My Mother, Your Mother: Embracing “Slow Medicine,”

The Compassionate Approach to Caring for Your Aging Loved Ones
. New York: HarperCollins, 2007. The single best manual on medical caregiving

in the years stretching from decline to death, by a leading geriatrician from Dartmouth Medical School.

Moyers, Bill. “On Our Own Terms.” Four-part
Frontline
series on end-of-life care in America, available on DVD at libraries and on Netflix.

caring for the caregiver

Boss, Pauline.
Ambiguous Loss: Learning to Live with Unresolved Grief.
Cambridge, MA: Harvard University Press, 1999.

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

Zondervan, Grand Rapids, MI, 2005. Excellent guide to familial caregiving issues, from the perspective of a Christian psychotherapist.

Kabat-Zinn, Jon.
Full Catastrophe Living
. New York: Delacorte Press, 1990.

Lao-tzu.
Tao Te Ching.
Translated by Stephen Mitchell. New York: Harper & Row, 1988.

Satow, Roberta.
Doing the Right Thing: Taking Care of Your Elderly Parents Even
if They Didn’t Take Care of You.
New York: Penguin, 1995. Another excellent guide to familial caregiving issues, from the perspective of a New York psychoanalyst.

Government Support

The federal Family and Medical Leave Act guarantees family caregivers
unpaid
time off from work without risking job termination. California and New Jersey go a step further and provide several weeks per year of “paid family leave,” akin to unemployment insurance payments, to payroll workers who miss work to care for a sick parent or other relative. Washington State has a similar program, but it is restricted to those caring for children. The District of Columbia requires employers to provide some paid family leave. California’s program, administered through its Employment Development Department, is the most generous: family caregivers can be compensated for up to six weeks per year. Work absences don’t have to be consecutive, and the program covers caregiving performed in another state or done over the phone.

In most states, elderly people poor enough to qualify for Medicaid can pay their family caregivers through the National Resource Center for Participant-Directed Services. 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.

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Organizations

The American Association of Retired Persons (AARP) has excellent tips and articles in its Caregiving Resource Center under the “Home and Family” tab on its Web site, AARP.org.

Your local Alzheimer’s Association, listed in the white pages, offers support groups for families coping with all forms of dementia. http://www.alz.org.

1-800-272-3900.

The Family Caregiver Alliance offers classes and legislative advocacy for a huge, neglected interest group. http://www.caregiver.org.

The Center to Advance Palliative Care (CAPC) has an excellent, user-

friendly Web site for families that explains palliative care and lists programs by city and state. http://www.getpalliativecare.org. 1255 Fifth Avenue, Suite C-2

New York, NY 10029. 1-212-201-2670.

The National Hospice and Palliative Care Organization can refer you to local hospice providers, and its Web site features guides to palliative care, Medicare coverage, and how to open a discussion of end-of-life wishes. http://www.nhpco.

org. 1731 King Street, Suite 100, Alexandria, Virginia 22314. 1-800-658-8898.

Compassion and Choices, which advocates for right-to-die laws and the

legalization of physician-assisted suicide, provides free counseling for families seeking to withdraw or refuse medical treatment and facing institutional resistance. We used their service, and found it helpful. http://www.compassionand-choices.org. P.O Box 101810, Denver, CO 80250. 1-800-247-7421.

General Readings

For an overview of the death-ways we’ve lost, and where that loss has taken us, I recommend:

Aries, Philippe.
Western Attitudes toward Death from the Middle Ages to the Present
. Baltimore: John Hopkins University Press, 1974.

Brownlee, Shannon.
Overtreatment: Why Too Much Medicine Is Making Us
Sicker and Poorer
. New York: Bloomsbury, 2007.

Nuland, Sherwin B.
How We Die: Reflections on Life’s Final Chapter
. New York: Vintage Books, 1993.

leGAlitieS

You have a constitutional right to refuse any medical treatment or ask for its withdrawal on your own behalf or on behalf of someone who has legally entrusted you with that role. You even have the right to call an ambulance and KnockingHeaven_ARC.indd 288

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sign someone out of an intensive care unit against medical advice. Your right to medical autonomy trumps any doctor’s conception of his or her Hippocratic oath to act with beneficence, which doctors may wrongfully interpret as meaning that they should always do more (and that you should go along). If a doctor is unwilling to do as you ask, he or she is obligated to refer you to someone who will. If you and the doctor aren’t on the same page, find another. Any request on behalf of an incommunicado patient should legally be phrased in terms of your understanding of their wishes, not your own sense of what is best for them.

(You may only be guided by their “best interests” if their wishes are not known.) Having your paperwork in order is often promoted as the be-all and end-all of a good death. Unfortunately, it’s not that simple. But it is a start.

Do not Resuscitate

Signed by both patient and doctor, a DNR affirms your right to a sudden death free of electrical defibrillation and chest-pounding. Given the dismal survival rates of those resuscitated outside hospitals, it isn’t as radical as it sounds. If you call 911 in a panic, however, emergency medical technicians
will
resuscitate you or your family member
,
even if you have a DNR, unless you have further, state-approved DNR identification, usually an official plastic bracelet. Regulations vary by state, but all recognize a metal bracelet purchasable from the Medic-Alert Foundation. http://www.medicalert.org. 1-888-633-4298.

Advance Directives (“living Wills”)

Better than nothing, the outdated, boilerplate versions of these documents offered by many lawyers only ask for no life support when you are comatose or within six months of death. For a tailored document that includes more specific instructions on gray area issues like dementia, antibiotics, feeding tubes, and devices like pacemakers, see an elder lawyer or doctor specializing in palliative care or geriatrics. One such nationally known specialist is Jennifer Brokaw, MD, at the group medical practice Good Medicine
in
San Francisco, CA.

Physician’s Orders for life-Sustaining treatment (POlSt)

Signed by both physician and patient, and printed on bright-pink attention-getting paper, POLST orders carry more weight with doctors and hospitals than living wills and DNRs. They are more specific and cover respirators, unnecessary transfers and hospitalizations, feeding tubes, antibiotics, and intravenous fluids. They have a box to check for “comfort measures only.”

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

The Coalition for Compassionate Care of California has an excellent guide KnockingHeaven_ARC.indd 289