When They Cannot Eat

[Guest guest]

This is a good short article on the decision

surrounding whether a loved one should get a

feeding tube, when the decision is left up to a

family member (with power of attorney). Here's

an excerpt that certainly echoes what we hear in the local support group:

" Few questions are more upsetting to families

than this one. Providing nourishment is, from the

first moments of life, an elemental way for

humans to demonstrate love and care. Saying no to

a feeding tube can feel tantamount to allowing a

loved one to starve. I sometimes wonder if it’s

actually easier, emotionally, to decline CPR or a

ventilator; we may not feel responsible for

keeping relatives’ hearts beating or lungs

functioning, but we have trouble overriding our impulse to feed them. "

The article discusses the case when a feeding

tube may be temporary (such as le

Giffords) and the other end of the spectrum when

a feeding tube near the end of one's life has

benefits that are " hard to discern. " The gray area, of course, is in between.

Robin

http://newoldage.blogs.nytimes.com/2011/01/24/when-they-cannot-eat/

The New Old Age: Caring and Coping

When They Cannot Eat

By a Span

The New York Times

January 24, 2011, 12:44 PM

Minarick has had a tough few weeks,

grappling with one of the crossroads decisions

that family members so often shoulder for ailing

elders. “I’ve been a wreck,” she said.

She has known and loved her Uncle Lawrence, now

87 and living in a Virginia nursing home, since

he moved into her parents’ home when she was a little girl.

A onetime coal miner, he has always needed family

help — a cyst in his brain caused lifelong

cognitive difficulties. He hasn’t eaten solid

food for three years, Ms. Minarick told me, but

has done reasonably well on thickened liquids.

And at their weekly visits, he can still talk

with her, though mostly about the past.

Lately, however, he’s grown awfully thin. When

his weight reached 132 pounds, down from 165, she

took her concerns to the staff. “He might be a

candidate for a feeding tube,” a nurse suggested.

Sometimes, the nurse added, people improve and

start eating again and the tube can be removed.

“I just don’t think that’s very likely,” Ms.

Minarick told me. She knows a fair amount about

the pluses and minuses of tube-feeding in the

elderly, having faced a similar decision for her

father last spring. (I probably should have said

that when it comes to caregiving, Ms. Minarick, a

federal employee in Washington, has had a tough 10 years.)

She also knows that her uncle’s dementia will not abate.

Few questions are more upsetting to families than

this one. Providing nourishment is, from the

first moments of life, an elemental way for

humans to demonstrate love and care. Saying no to

a feeding tube can feel tantamount to allowing a

loved one to starve. I sometimes wonder if it’s

actually easier, emotionally, to decline CPR or a

ventilator; we may not feel responsible for

keeping relatives’ hearts beating or lungs

functioning, but we have trouble overriding our impulse to feed them.

“Maybe he’ll just go peacefully in his sleep and

not be subjected to this,” Ms. Minarick said,

struggling to figure out what to do for her

uncle. Her voice on the phone sounded quavery.

“I’m 99 percent confident that a feeding tube is

not the right thing, but there’s always that doubt.”

Let’s be clear: Many times, families will be

grateful that doctors know how to insert a tube

directly into the stomach to deliver food and

liquids. It makes sense for an accident or stroke

victim who appears likely to recover, for

example, or for someone with Parkinson’s disease

who can’t swallow but otherwise can function and enjoy her life.

“Someone like le Giffords needs a feeding

tube,” said Dr. , a senior

scientist at the Hebrew SeniorLife Institute for

Aging Research in Boston, who has studied tube

use for years. But for people with irreversible

conditions who are nearing death, the gains are

harder to discern, and the disadvantages mount.

Dr. ticked off the research findings for

me. “We can’t demonstrate any survival benefit,”

she said, meaning there’s no evidence the

procedure can prolong life. It’s clear, though,

that the tubes don’t prevent aspiration —

patients can still draw saliva or regurgitated

bits of food into their lungs, which frequently causes pneumonia.

The tubes occasionally leak or become blocked or

infected, necessitating hospitalizations; they

can cause nausea, vomiting or diarrhea. Patients

with advanced dementia can’t understand what’s

going on, so “they tend to get agitated and try

to pull out the tubes,” Dr. said, which

in turn leads to the use of restraints or psychotropic drugs.

Families often fear that without artificial

nutrition and hydration, their relatives will

suffer from hunger or thirst. But when

researchers talked to cancer patients who were

close to death but lucid, Dr. said, they

didn’t describe painful sensations.

She recommends this guide from the Ottawa

Hospital Research Institute to help caregivers

reach decisions on tube-feeding when their

relatives can’t communicate their own opinions.

This, in part, was what troubled Ms. Minarick and

her sister, providentially a nurse in a gastroenterology lab.

They had declined a feeding tube for their father

when a fall caused a serious brain hemorrhage,

partly because his doctors explained that there

was little hope for recovery, but mostly because

he had made his wishes clear in a living will.

“It’s horrible stuff to have to do,” Ms. Minarick

said. But because she knew she was following his

instructions, “I didn’t find it a struggle.” Her father died 10 days later.

Her uncle has no such document; years ago, a

lawyer said he wasn’t competent to make such

decisions. Though her uncle had told her he

didn’t like hospitals and wanted to die at home,

in the old-fashioned way he remembered from

boyhood, Ms. Minarick has power of attorney but

no advance directive. That makes the decision harder this time.

So she is grateful for a compassionate doctor

she’d spoken to occasionally but never met, the

family practitioner who cares for the patients at

her uncle’s nursing home. He spent almost half an

hour talking with her last week about the feeding

tube and other options, and about her uncle’s comfort — her overriding concern.

(Brief digression: Had the Obama administration

not stripped the provision from the new health

care law, Medicare would reimburse doctors for

such lengthy discussions about end-of-life choices. Now, it won’t.)

Ms. Minarick and the doctor finally agreed to

forgo the feeding tube and add a “do not

hospitalize” order to her uncle’s existing “do

not resuscitate.” She and a friend will come

several times a week to see if they can persuade

Uncle Lawrence to drink more chocolate-flavored Ensure.

Meanwhile, the doctor will certify him for hospice care.

“I thanked him profusely,” Ms. Minarick said.

“It’s distressing, but I’m also very relieved.”

a Span is the author of “When the Time Comes:

Families With Aging Parents Share Their Struggles and Solutions.”