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 Kasem’s advance directive called for no life-sustaining treatment if
it “would result in a mere biological existence.” But his wife
opposed a court order allowing an end to artificial measures; her
attorney called it a “functional equivalent of a death sentence.”
The Kasem family infighting is unfortunately not unique. It mirrors
the struggles of countless other families, whether their loved ones
have dementias like Kasem’s, or advanced cancers and other terminal
conditions.
The choice of when to stop artificial feeding and fluids is one of
the hardest families face when caring for a patient nearing death.
The decision is entwined with fears of abandonment, violations of
cultural norms and moral concerns.
“The relational meaning of eating and drinking is important and
something we must hold dear,” said Mildred Solomon, president of the
Hastings Center, a bioethics research institute. However, the
significance of eating and drinking may have more value for
caregivers than for patients in the last days of life.
“If people are entering the dying process, then imposing artificial
nutrition is not only not helpful, it can actually be harmful,”
Solomon told Reuters Health. Feeding tubes are shown to often result
in pain, heartburn, accidental inhalation of fluids and infections.
Kasem’s wife claimed the decision to allow the suspension of these
measures was an order “to kill” him. Some experts in “comfort care,”
however, say those measures can actually do the same.
“It actually makes people, in some cases, die quicker,” said Michael
Marschke, a palliative care specialist at North Shore University
Health Systems in Evanston, Illinois.
“As the body declines, it is not able to accept much nutrition,” he
told Reuters Health. “Patients can’t process it and can’t digest
it.”
Marschke explains that bed-bound patients like Kasem require only
400 to 800 calories daily. Appetite diminishment is a natural
process for most with advanced diseases.
Marschke said the medical utility of a feeding tube is one of the
most emotionally-laden issues among caregivers. While beneficial for
many with reversible conditions (for example, a stroke patient who’s
temporarily unable to swallow), tube placement will not restore
strength at the end of life, as families often believe. Others may
fear a decision against artificial feeding will be the cause of a
loved one’s death. They may be anxious to not “starve” the patient.
However, to what degree physicians should indulge the symbolic act
of nourishment poses an ethical dilemma.
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“It is one in a series of other decisions we’re helping them talk
through,” said Mark Kuczewski, chair of the Neiswanger Institute of
Bioethics at Loyola University-Chicago. Other issues, like a
decision regarding cardiopulmonary resuscitation, are more clear; it
is easier, he told Reuters Health, for families to understand CPR
could cause pain, so they often opt to forego it. However, the point
when patients stop processing or enjoying food is not so clear cut.
Kuczewski encourages families to orally feed patients capable of
swallowing, even if they only take a teaspoon or two. Caregivers
enjoy the nurturing benefit of feeding, while patients may benefit
from social interaction.
“If they only want a couple of bites, that’s great,” Marschke said.
He urges families to feed only things that patients enjoy; at the
end of life, pleasure should be more paramount than nutritional
value.
“Modern medicine is not able to stop this process of the final phase
of life,” Solomon said.
Kasem died four days after the order that artificial measures could
cease.
Solomon asks those newly diagnosed with serious illnesses to think
about this issue ahead of time and explain preferences to key loved
ones. Kasem’s advance directive dates to 2007, though family
conflict concerning its contents suggests he did not verbally
express his desires and values behind them.
Technology is not always in patients’ best interest, Solomon said,
and the administration of artificial nutrition and hydration does
not equate to the symbolic significance of sharing a meal.
“You have to love them in other ways,” Marschke said.
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