Knocking on Heaven's Door: The Path to a Better Way of Death (42 page)

StAGe 1: FRAGility

The older and more fragile your parent gets and the more life-

threatening conditions he or she accumulates, the more critically

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you should look at any proposed treatment requiring general

anesthesia or a hospital stay. Hospitals are dangerous places,

even for the young and vigorous.

The nature of medical advocacy changes. Less is more. Dis-

cernment is the catchword.

Respect the law of diminishing returns. With each year over

the age of eighty and each step down from independent func-

tioning, physical resilience lessens, the chances of benefits

dwindle, and the risks of bad medical outcomes rise. It may

be preferable to live with physical limitations rather than to

risk mental incompetence: hip replacements, open-heart sur-

gery, and general anesthesia all carry serious risks of cognitive

decline. The time comes when an aged person will consistently

come back from the hospital worse rather than better.

Shift your hopes from unrealistic “curing” to “caring,” which

is always possible. Maximize comfort, happiness, mobility, and

independence without extending life. A hernia surgery performed

under local anaesthetic or stenting to relieve heart pain may be

good ideas if they reduce suffering. A defibrillator or a heart

bypass may extend life without improving its quality. Consider

any medical treatment of an elderly person, no matter how seem-

ingly minor, as a serious decision. Learn to tell a doctor, “No,” or

“Let’s wait.” Weigh benefits versus burdens and risks. Ask about

pros, cons, and alternatives. Forget diagnostic tests like mammo-

grams if the results won’t change plans for future treatment or

nontreatment. There is no need for your parent’s final years to be

consumed with pointless, tiring medical appointments.

StAGe 2: Decline

Accepting that someone you love is beyond the reach of curative

medicine is not the same as advocating medical neglect. Post-

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pone disability, not death. Bring an occupational therapist into

the home and pay out of pocket if you must: little things can be

huge in preserving independence, such as balance training to

prevent falls, falls training to prevent injury, continence training,

speech therapy, support groups, adaptive yoga mentally stimu-

lating day programs, and regular exercise. People with demen-

tia who are happy and well-socialized function better for longer

than the lonely and depressed. Install grab bars and take up loose

rugs. I will say this although I know I am whistling in the wind:

ask for and provide help
before
it’s needed, not when you or your parent is on the verge of collapse. Get siblings and neighbors

involved sooner rather than later. Postpone loss of independence

with judicious help: a high school student hired to do driving and

grocery shopping may extend the period in which a parent can

remain at home and close to friends.

StAGe 3: DiSAbility

When someone can no longer function without help, family

hierarchies turn upside down. Hiring independent home health

aides can be cheaper than moving into an assisted living com-

plex or hiring an agency, but they take more time to manage.

Research assisted living and “life care” communities carefully:

sometimes the prettiest are not the best run, and this is a hard

decision to undo. In her memoir and caregiving manual,
Bitter-

sweet Season,
former
New York Times
reporter Jane Gross argues against a move to “assisted living” unless the complex also

provides an excellent skilled nursing division. Think carefully

before moving a parent into your home, or moving in with them,

if your relationship has been difficult due to a parent’s narcis-

sism, violence, or substance abuse. This is where that cherished

baby-boom word “boundaries” comes into play.

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caring for the caregiver

Throughout this journey, remember you are engaged in a marathon,

not a sprint. Long-term caregivers struggle with exhaustion, the

pain of ambiguous loss, anger, money problems, and guilt. They are

vulnerable to insomnia, depression, anxiety, neck and back pain,

illness, and premature death. The typical pattern is to push to the

point of collapse before gasping for help. Think in terms of two-

way compassion: for the afflicted person, and for yourself.

Swallow your pride. I wish I had. The sooner you ask for help,

the more you will get. Convene regular meetings or conference

calls with siblings, make lists of what needs doing, and delegate.

My brother Michael often lent my mother an empathic listen-

ing ear. I did medical planning, advocacy, hands-on social work,

and support. Jonathan covered logistics and human resources,

negotiating with Toni during the inevitable rough patches and

helping my mother buy a new car. Those living far away may

contribute money, while those nearby do more hands-on care.

Sometimes one adult child sacrifices a decade or more of

time and earnings to caring for a parent and then receives the

same inheritance as siblings who did nothing but kibitz from

afar. In other cases, one sibling (usually one who isn’t actively

caretaking) may secretly pressure an aging parent for money or

simply remove it from the bank account.

Figure out who the caregivers are and who is the support

team. Give control of money and decisions to whoever is doing

the bulk of the hands-on work. Don’t let brothers off the hook; I

wish I’d been more direct with mine. If there is money available,

consider openly paying the sibling who carries most of the bur-

den or giving them a larger portion of the estate. Better to handle

this aboveboard than let resentments fester long after death.

Ambivalence is part of the job. Vent to a friend, partner, ther-

apist, social media group, or support group.

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Clarify limits. Strive for imperfection. Do what you can

when you can, and say no when you must. It’s better to do a

little consistently than go overboard and then withdraw. Local

members of the National Association of Area Agencies on Aging

(www.n4a.org) offer respite services for lower-income families.

StAGe 4: FAilinG HeAltH

A parent may go through months or even years of “failing,” perhaps

becoming bedridden, before entering the three-to-ten-day process

that hospice workers call “active dying.” Listen to what your par-

ents say and also what is left unsaid. When someone says, “No

more hospitals,” or “I’m living too long,” consider this an invitation

to unpack the implications of the statement. Does this mean they

would rather die than go through another hospitalization, or enter

a nursing home? On what terms do they consider their lives worth

living? Do the emotional work of preparing for death even though

it may be months away. Some hospice programs offer workshops in

“anticipatory loss,” and you can pay out of pocket if the one you love

is not enrolled yet as a hospice patient. Consider a palliative care

program and discuss the legal papers discussed at length below.

Palliative care is not a death-oriented practice. It is devoted

to maximizing quality of life and comfort while living with a

chronic illness, including but not limited to conditions that are

life-threatening and ultimately fatal. For people with serious

illnesses in their last years (as opposed to months) of life, it

provides many of the benefits of hospice, including a practical

team that visits the home and focuses on maximizing function

and controlling symptoms. Many hospitals have inpatient pal-

liative care departments. Outpatient (visiting-nurse-style) pal-

liative programs are becoming popular. If you don’t ask, you may

not get: the doctor assigned to your case in the hospital may or

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may not choose to refer you to palliative care, depending on his

or her personal medical philosophy. Except in New York state,

the doctor has no ethical or legal obligation to do so. So speak

up. In my experience, both doctors and family members tend to

overestimate how much time a family member has before death

knocks at the door.

Admittance to a palliative care program does not require a

doctor’s letter that death is on the horizon; nor does it require

forgoing curative treatments. But a palliative care patient can

segue smoothly into hospice care, because the philosophy—

comfort first, shared decision-making, clarity about medical

goals, coordinated support for the whole family, pragmatism,

and limiting burdensome interventions—is similar. (Hospice is

a type of palliative care, but not all palliative care is hospice.)

Palliative care can sometimes prolong life better than more

aggressive medicine. A study reported in 2010 in the
New Eng-

land Journal of Medicine
found that lung cancer patients receiv-

ing early palliative care were hospitalized less frequently and

declined more invasive treatments. They also experienced less

depression and increased quality of life, and they survived 2.7

months longer than those receiving standard oncological care.

If you sense that your parent or spouse is on the final down-

ward slide, advocate forcefully for admittance to hospice or pal-

liative care sooner rather than later. To qualify for hospice care,

you must find a sympathetic physician willing to sign a letter

saying that the patient is expected to die within six months,

will forgo all curative treatments, and will accept only symptom

management, pain control, and “comfort care.” (You can, how-

ever, de-enroll from hospice care if you change your mind or

regain your health, and reenter later.) Patients with certain can-

cers and other clearly life-ending diagnoses qualify most eas-

ily, but those with “the dwindles,” or heart failure or dementia,

can qualify too. Doctors frequently overestimate how long their

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patients have left: my father was approved for hospice only ten

days before his death, my mother, thirty days. Your local hospice

may be able to refer you to a doctor who shares your values.

StAGe 5: Active DyinG

When a patient starts to die in a nursing home
,
it is often standard protocol to call 911 and to subject the dying person to vio-

lent cardiopulmonary resuscitation, even though only 2 percent

of nursing home residents (and other frail and dependent elderly

people) benefit from CPR, and some survive only to die again a

week later. Ask if your family member can get hospice care within

the nursing home. Unfortunately, Medicare sometimes forces a

choice between skilled nursing services and hospice: you can still

get both services, but must pay out of pocket for one. A do-not-

resuscitate order reinforced by a state-recognized bracelet, as dis-

cussed below, is often an act of realism and mercy.

A “do not hospitalize” order can also be a mercy, because it

is standard protocol in many nursing homes to move a dying

patient to the hospital, sometimes resulting in repeated bounc-

ing back and forth (known in hospital argot as “turfing”) in the

last few months of life. The reasons have little to do with the

peace and comfort of the patient and a great deal to do with

the economics of our Kafkaesque reimbursement system and

institutional fears of legal liability. Physician’s orders for life-

sustaining treatment (POLST) signed by a doctor can reduce

the risk, as explained below. Again, being enrolled in hospice or

palliative care reduces the chances of terminal manhandling,

because the nursing home no longer has to worry about being

sued for medical neglect by a Nephew from Peoria.

Hospices provide teams of visiting nurses, social workers, vol-

unteers, and other forms of familial and patient support. Due to

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a slow erosion in financial reimbursements, however, they no

longer provides enough hands-on nursing care to keep a patient

comfortable without supplementation from a full-time family

caregiver or hired aides.

A word about dementia: it is a terminal illness and often a mis-

erable death. Don’t draw it out. Feeding tubes are uncomfortable,

and stopping eating and drinking are natural, painless, traditional

gateways to death. (Many alert old people with incurable illnesses