In the family disputes that surrounded American radio icon Casey Kasem's last weeks of life, his daughter's decision to carry out Kasem's wish – to suspend artificial feedings and fluids – was among the most contested.
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 Centre, 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.
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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.
Only a teaspoon or two
However, to what degree physicians should indulge the symbolic act of nourishment poses an ethical dilemma.
"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.
Patients' best interest
"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.
Read: How to make the end-of-life experience peaceful
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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