Nothing inflames the soul of a politician like the drama of a life-or-death conflict.
That was true in the very public fight in the courts and Congress over Terri Schiavo, the young Florida woman who spent 15 years in a persistent vegetative state after suffering cardiac arrest, then died last March after her feeding tube was removed at her husband's insistence.
But largely lost in the political rhetoric over the Schiavo case was a reality that is finding increasing acceptance among medical professionals who care for the terminally ill: In nearly all cases, they say, introducing artificial nutrition and hydration (ANH) to a dying patient does more harm than good.
Says Dr. David J. Casarett, an assistant professor of geriatrics at the University of Pennsylvania School of Medicine: "Artificial nutrition is generally not the lifesaving treatment that people believe it to be. Unlike food and water, ANH is a medical therapy with substantial risks and burdens, which must be administered using technical medical procedures. In addition, it has no role in palliative care, since it does not promote patient comfort or ease suffering."
The issue of tube feeding arises when someone can no longer swallow reliably, such as a patient debilitated by advanced cancer or in the final stages of a dementia such as Alzheimer's disease, as well as for persons, like Schiavo, in a permanent coma. Nutrition can be provided through a nasogastric tube inserted through the nose, down the throat and into the stomach, but this can be left in only a short time. The usual means of tube feeding is with a PEG tube, for percutaneous endoscopic gastroscopy. This is a tube inserted through the abdomen into the wall of the stomach.
The PEG tube was developed for use with patients who need to get over the hump -- those with a reversible illness, such as a severe infection, or those who are recovering from surgery. Soon doctors were using feeding tubes for patients with more permanent disabilities, such as nursing home patients who cannot feed themselves.
But it is with terminally ill persons that artificial nutrition and hydration are less widely understood. Patients and their families might logically assume that we're talking about the medical equivalent of food and water -- surely, we wouldn't forgo those. Increasing medical evidence, however, shows that tube feeding carries substantial risks and unwanted side effects. For those in the process of dying, it can mean suffering where there needn't be.
>Tube feeding doesn't help
A review of the medical literature in December's "New England Journal of Medicine," and other surveys of medical studies, show that tube feeding doesn't accomplish what it might be hoped to do:
* It's unclear that ANH improves the survival rate for patients with advanced cancer undergoing chemotherapy.
* Most evidence suggests ANH does not improve survival for patients with advanced dementia.
* Tube feeding does not prevent aspiration pneumonia, caused when the patient breathes bacteria from the mouth into the windpipe and lungs.
* Tube feeding does not prevent pressure ulcers, which commonly occur in people with end-stage dementia.
* In patients with advanced cancer or advanced dementia, no improvement in survival has been found with tube feeding instead of hand feeding.
* Besides not accomplishing these goals, the evidence suggests tube feeding carries significant risks:
* As organ function, including the kidneys, declines, tube feeding can lead to swelling and discomfort, ranging from a choking feeling and labored breathing due to pressure on the lungs to heaviness in the arms and legs that makes it difficult or impossible for the patient to move.
* The tube insertion itself is a surgery that carries risks, including infection. The overall complication rate is up to 24 percent.
* The risks are great for patients with advanced dementia, because the confusion of their disease causes them to pull at paraphernalia on their bodies. For these persons, says Dr. Robert A. Milch, medical director of Hospice Buffalo,"the only thing tube feeding does is increase the need for restraints."
Medicine is still more art than science, and so the evidence about artificial nutrition and hydration isn't unanimous. Certainly, there are cases where tube feeding makes perfect sense, even among patients whose cases are terminal.
Milch points to, for example, someone who has an advanced cancer of the esophagus or stomach. Radiation therapy might shrink the tumor to the point where the person can eat again; in the meantime, he says, it's perfectly reasonable to put in a PEG tube. Or someone who has suffered a massive stroke -- a trial course of tube feeding, 10 days or two weeks, might be indicated to see if it helps the patient's recovery.
Most important, Milch says, is that the medical team use one criterion: Is the procedure a benefit or a burden to the patient? As the disease progresses, he says, the answer can change; there may come a point when it's clear tube feeding isn't helping.
>Ghost of family dinners
Despite the growing body of clinical evidence, doctors and nurses often face an uphill battle when they suggest withholding or withdrawing artificial nutrition and hydration. The problem: The idea of food and drink resonates deeply in family life. A family that would readily say no to a ventilator still might find it agonizingly difficult to deny nutrition to, for example, Mom, who fed them all these years.
Those emotions point up an essential quandary about artificial nutrition and hydration: Is it basic human sustenance, or is it medical treatment?
Most medical professionals say it's a medical procedure. They note, by comparison, that air is a basic component of life, yet no one denies that forcing air into the lungs through a ventilator is medical treatment. And they argue that what's being pumped into the patient is not food as we know it -- it's a concentrated liquid containing lipids, sucrose and other compounds.
In her 11 years as a New York City hospital chaplain, the Rev. Martha Jacobs found that emotions run high over food and the prospect of denying it to a loved one. She cites members of one family who wanted to take their mother home for her last days and wanted artificial and hydration provided there.
"They were an Italian family," Jacobs says, "and food was very important to their family life. They said to me, 'We cannot sit by and watch our mother die this way, because food has always been such an important part of our family.' You have to honor that feeling."
Jacobs, who is working on a doctor of ministry project at New York Theological Seminary involving educating United Church of Christ clergy on end-of-life issues, says families' spiritual advisers have differing views on withholding or withdrawing artificial nutrition and hydration.
Pope John Paul II, in one of his last public addresses, defined ANH as "a natural means of preserving human life, not a medical act." But Jacobs says individual Catholic priests, as well as Protestant, Jewish and Muslim clergy, hold divergent views. Most, she says, acknowledge that the process of dying is "the natural progression of a body shutting down."
You're not doing anything to stop the process, but you're not doing anything to prolong it, either.
"What people are asking their clergy for," she says, "is permission to say, 'Let's let Mom go. Let's not prolong this. We know what's going to happen.' "
>A peaceful death
But there's still that horrible thought, one that animated the shouting matches over Terri Schiavo: If nutrition and hydration are withheld, doesn't the patient starve to death?
Caregivers report that death comes peacefully in such cases -- perhaps more peacefully than to those with feeding tubes in place. Patients already debilitated by advanced disease slip quickly into a coma, and because they are unconscious, do not experience hunger, thirst or pain. Even those who remain conscious longer rarely report hunger or thirst.
"In a physiological sense, there is a difference between acute hunger and caloric deprivation," Milch says. "This is not the hunger we feel when dinner is three hours late. It's not painful. We've found that patients who stop eating voluntarily experience almost a euphoria after about 24 hours."
Under hospice care, he says, continual swabbing of the lips and tongue, and the use of artificial saliva, alleviate nearly all perception of thirst. Additionally, animal studies indicate that the body responds to a lack of food by increasing the production of the natural pain relievers called endorphins.
The dying process can last from three to 14 days.
"It's brutal for families to have to watch this," Milch says. "They end up second-guessing all their decisions when their loved one doesn't die right away."
>Health care proxy
So what's the smart way to manage the possibility that you or a loved one might need to make this decision? Those in the medical community uniformly point to the need to sign a health care proxy -- a legal statement empowering another person to make medical decisions for you if you're unable to.
Most legal observers say the best approach is to designate an agent, then talk that person's ear off about what medical treatment you want and don't want. Documents like a living will, they say, can hamstring the agent's ability to make the decisions you want him or her to make, because there's no way to cover every possible medical condition.
In New York State, the health care proxy law specifies that the health care agent cannot make a decision on withdrawing or withholding ANH unless the patient has made his wishes "reasonably known" to the agent, either in writing or in conversation.
The stipulation was the result of a compromise with religious interests that oppose the withholding of ANH; they wanted clear evidence before a health care agent would be allowed to make that decision for an incapacitated patient.
But what about a person who never executed a proxy document or is mentally impaired? In 48 states, authority to make health care decisions for that person automatically reverts to his or her family. In New York and Missouri, that's not the case.
A bill currently before the State Legislature looks to change that. The Family Health Care Decisions Act enables family members and others close to an incapacitated patient to make health care decisions for him or her.
"Families who care about patients ought to be able to make decisions if the patient can't," says Dr. Jack P. Freer, an internist who practices with Kaleida Health and teaches in the University at Buffalo School of Medicine. "That decision-making happens throughout the state in such a variety of ways. In many cases it happens without either a full understanding or a full explanation of what the real legal situation is."
>A bad situation
Freer and his colleagues in the New York State Task Force on Life and the Law, a state Department of Health group that includes physicians, ethicists and clergy, hope that the bill, first proposed in 1992, will pass this year.
"Even the Court of Appeals judges said this is a bad situation and it should be fixed," he says.
But he, too, acknowledges that the best course is a health care proxy, whose charge is to make decisions as the patient himself would have made them.
"The problem," he says, "is that a lot of people don't do proxies, then they become incapacitated and then it's too late."
On balance, end-of-life decisions can't be as open-and-shut as we might like them to be. Patients and families, caregivers and health care agents can only do the best they can with the information at hand and the patient's best interests at heart.
"We can't always be certain," Milch says. "It turns out that we need to find a way, if we have any wisdom, to live with that."