Decisions about artificial nutrition and hydration near the end of life can be fraught with conflict. One family member may say, “I don’t think Dad would want this,” while another asks, “But how can we let him starve to death?”
Denise M. Dudzinski, PhD, HEC-C, has consulted on multiple cases involving this scenario. Good advance care planning, including a discussion of the patient’s goals and the circumstances under which the patient would want artificial nutrition and hydration, can prevent some of those disagreements.
Ideally, a living will, a Physician Orders for Life-Sustaining Treatment form, or Medical Order for Life-Sustaining Treatment form can clear up any confusion about the patient’s wishes.
“But with or without those documents, clinicians can document goals of care conversations with patients in the medical record,” says Dudzinski, chief of the University of Washington Medicine ethics consultation service and director of organizational ethics at Seattle Children’s Hospital.
Some patients experience fluctuating decision-making capacity near the end of life. If so, clinicians can look for a window of opportunity when the patient is lucid and directly discuss how a feeding tube might (or might not) serve the patient’s goals. Then, providers can document the discussion so the patient’s wishes are clear to the family. Ethicists also can clear up misconceptions that might be leading family members to request artificial nutrition.
“People worry that if their loved one isn’t eating normally, that they are depriving their loved one of basic care and permitting them to starve, or that they will have pain or discomfort,” Dudzinski notes.
However, the choice to discontinue a feeding tube usually arises when patients have been diagnosed with a terminal illness that makes tube feeding more burdensome and less comfortable. Ethicists can enlist clinician colleagues, such as palliative care specialists, to explain to the family that there are interventions, other than artificial nutrition, to alleviate patient suffering.
Withholding or withdrawing medically delivered nutrition and hydration can be an ethical option for seriously ill patients at the end of life, says Paul T. Menzel, PhD, professor of philosophy emeritus at Pacific Lutheran University in Tacoma, WA. “However, there may be ethically related resistance,” he notes.
Physicians, patients, family members, or surrogate decision-makers sometimes object on moral grounds to withholding feeding tubes. Menzel says it is important for clinicians to consider the relevant ethical issues in discussions with the involved parties. “Historically, the withholding and withdrawal of medically administered nutrition and hydration was a major ethical issue for quite a short period of time,” Menzel says.
During that period, nasogastric feeding tubes arrived as a reliable medical method of keeping patients alive who could not eat or drink orally. Some voiced religiously based objections, arguing it was immoral to stop food and water because it guarantees the patient will not survive (unlike many other medical treatments that may be legitimately withheld). For example, if a ventilator is withdrawn, it is possible the patient will breathe on their own. “Because the removal of food and water is doing something deliberately that ensures death, it was regarded by some as morally wrong,” Menzel says.
Many clinicians refuted this argument, considering the fact patients have the right to refuse medically delivered nutrition and hydration, just as they have the right to refuse other medical treatments. “From the clinician’s point of view, it just didn’t make any sense to say that refusing medically delivered nutrition is different from refusing other medically life-saving measures,” Menzel explains.
The decision should be the patient’s to make, Menzel stresses, and ought to be judged through the subjective lens of the patient’s values. For some, a few more hours of life might be worth taking a feeding tube or going on a ventilator. For others, even months of extra life are not worth it. “The ethical context is very individualized. But yet, there are some basic framework rules: Medically delivered nutrition is not different ethically from many other life-saving measures,” Menzel asserts.
The central ethical question is: Will a feeding tube benefit the patient in terms of his or her values? Menzel says the same ethical principles that apply to withholding medically delivered nutrition also hold true for withdrawing a feeding tube. “Generally, if it’s ethical to withhold the feeding tube, then it’s ethical to withdraw the feeding tube already started,” Menzel says.
Clinicians must be able to start a feeding tube to see if it is beneficial without feeling as if they cannot withdraw this treatment if it turns out it is not benefiting the patient. Patients and family should be made aware of this possibility as well. “There is no question in my mind that before clinicians start a feeding tube, they need to inform the various parties that it can be withdrawn,” Menzel says.
This is assuming the patient wants to try the feeding tube. If the patient is adamantly opposed to living with a feeding tube, “it’s the end of the discussion — and you don’t have to get into the withdrawal issue,” Menzel says. “But if starting the feeding tube is a viable option, I think clinicians are obligated to raise the later withdrawal possibility before they start.”
An overarching ethical concern is that in the ICU, feeding tubes (as well as respirators) easily can become a default option. “Once the person gets in the ICU, providers tend to do everything, and often the family is traumatized, and doesn’t even get asked what they want,” Menzel notes. “That’s wrong.”
In some cases, a discussion is not possible initially, at the time the feeding tube is placed. The problem is a subsequent discussion about whether to withdraw the feeding tube often does not happen. “Sometimes, you get family turmoil on these issues,” Menzel says.
The family might vehemently disagree with the patient’s (or the surrogate decision-maker’s) decision to withdraw the feeding tube. At this point, an ethics consult may be helpful. “The ethicist’s role is to open up discussion with the involved parties,” Menzel explains.
If some people object to withdrawing a feeding tube based on ethical grounds, the ethicist could gently explain patients have the right to withdraw life-saving interventions. That includes feeding tubes. “An ethicist should consider deferring to a chaplain to explain this; they are often artful mediators,” Menzel suggests.
The patient’s own pastor, priest, imam, or rabbi also might be involved. “If the person does have a religious connection — many don’t, of course — but if they do, that person may be especially helpful in a family discussion because the family already trusts them,” Menzel offers.
Additionally, when patients desire to hasten death, they can request voluntarily stopping eating and drinking. Legally, patients with decision-making capacity can pick this option.
“For those who have lost capacity, however, a surrogate decision-maker may struggle with the idea of stopping food and water by mouth,” Menzel says.
A less controversial measure is “comfort feeding only” (CFO). In CFO, only enough nourishment to keep the patient comfortable is provided, even when that is not adequate for sustaining life for long. “This is a standard practice of end-of-life situations where the goal is not extending life; the goal is comfort for whatever life is left,” Menzel explains.
Nutrition and hydration at the end of life are common concerns for patients and family members of dying patients, reports Ann L. Jennerich, MD, MS, ATSF, assistant professor of medicine in the division of pulmonary, critical care, and sleep medicine at the University of Washington. When caring for patients in the ICU at the end of life, Jennerich makes it a point to discuss the rationale behind discontinuation of intravenous fluids and tube feeding.
“For both of those interventions, it is possible to cause harm,” Jennerich stresses. This includes complications related to the administration of excess volume, nausea or vomiting, and the need to maintain potentially unnecessary tubes and lines.
For patients who are capable of oral intake, clinicians encourage eating for comfort. However, clinicians convey to the family that some of those same risks exist (primarily nausea or vomiting). “It is inappropriate to stop nutrition and hydration without making sure the patient, or more typically in the ICU the family of the patient, understands this plan and the reasoning behind it,” Jennerich argues.
It is important for clinicians to explore the family’s fears. “We revisit the fact that nutrition and hydration are unlikely to benefit the patient and may potentially cause harm,” Jennerich reports.
If the family still feels strongly about proceeding, a compromise might be possible. Jennerich explains: “We provide these therapies, but not at the same rate or volume we would provide to someone who is not at the end of life.”
When deciding whether to administer, withhold, or withdraw end-of-life nutrition and hydration therapy, ethicists can help clinicians, patients, and families reach an equitable agreement.
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