Posts Tagged ‘tube feeding’

Feeding Tube Withdrawn From Patient With No Living Will

MAY 27, 2002 VOLUME 9, NUMBER 48

One way to help assure that you will not receive unwanted medical care is to sign an advance medical directive. Every U.S. state now recognizes health care powers of attorney (sometimes called health care proxies) or living wills. Nearly all states recognize both types of documents. Often, however, the decision whether to initiate or continue life-sustaining medical treatment must be made for patients who have signed no documents at all.

Most states now permit family members to make some—or even all—health care decisions for patients who have not signed advance directives. Sometimes those powers are limited; in Arizona, for instance, family members do not have the inherent power to refuse or remove feeding tubes.

When patients have not signed any kind of advance directive, however, the likelihood increases that an unhappy result will occur. Take the case of Engracia Torregosa Garcia as an example.

Ms. Garcia experienced cardiac arrest in July of last year. Although she was resuscitated she had suffered irreversible brain damage, and she fell into a chronic vegetative state. Doctors agreed that there was no hope of recovery, but Ms. Garcia could be kept alive for months or years on a feeding tube.

Because there was no prospect for improvement Ms. Garcia was transferred to hospice. Her mother, brothers and sisters immediately objected to her care in hospice, though, because the feeding tube was removed. The case ended up in court in Tennessee, where Ms. Garcia was being treated.

Nearly four months after her accident the trial court ruled that Ms. Garcia’s feeding tube could not be removed. State law permits anyone to sign an advance directive authorizing withdrawal or withholding of a feeding tube. The judge reasoned, however, that the same law prohibits removal of a feeding tube from a patient who never got around to signing any directive.

In the course of the proceedings the court had appointed an attorney to represent Ms. Garcia, and her attorney and the hospice program both appealed. The Tennessee Court of Appeals reversed the trial judge’s holding, and authorized the removal of her feeding tube. The evidence was clear, ruled the Court of Appeals, that Ms. Garcia would not have wanted to be kept alive in her current condition; the Tennessee legislature did not have the power to compel her to accept treatment just because she had not signed a particular form in advance. Juan-Torregosa v. Garcia, May 7, 2002.

The result in Ms. Garcia’s case would probably strike most people as correct. As is often the case with stories reported in Elder Law Issues, however, that result was not reached without considerable expense and delay—which could have been avoided with proper planning.

Evidence of Living Will Intent Must Be Clear and Convincing

OCTOBER 15, 2001 VOLUME 9, NUMBER 16

Many patients approaching the end of life feel very strongly that they would not want to be kept alive by feeding tubes, artificial breathing machines or other devices. Signing appropriate advance directives helps, but there is no guarantee that they will be located, properly understood and followed in every case. Discussions with family members, caregivers and medical providers can dramatically increase the likelihood that the patient’s wishes will be carried out.

Consider, for example, the case of Delores Cameron. She had been married for over 40 years to James Cameron, but she had two sons from an earlier marriage. In 1995 she signed a living will, using the form provided by the Alabama Legislature. It directed that “artificially provided nutrition and hydration” should be withheld if she were ever in a persistent vegetative state.

In March of 2000, after a series of strokes, Ms. Cameron became completely unresponsive. She was cared for in an Alabama nursing home, and fed through a feeding tube. Mr. Cameron directed the nursing home to remove the feeding tube.

Ms. Cameron’s sons filed a lawsuit to prevent removal of their mother’s feeding tube. After five days of hearings lasting over two months, the judge ruled that Ms. Cameron’s wishes should be honored, and her sons appealed. They made two arguments that serve as a warning for other patients who execute living wills, durable powers of attorney or other advance directives.

First they argued that Ms. Cameron was not really in a persistent vegetative state. Although one physician testified that she was slightly responsive to some stimulation, two others insisted that she lacked “thought, sensation, purposeful action, social interaction and awareness of self and environment.”

The sons also insisted that it was impossible that their mother really understood the meaning and effect of her living will when she signed it. If she had realized that it would have meant withdrawal of a feeding tube, they argued, she would not have signed the pre-printed form. They did not provide specific evidence of her wishes, but doubted that she had intended to sign the living will.

The Alabama Supreme Court decided that Ms. Cameron’s wishes should be followed—but only if the evidence of those wishes was “clear and convincing.” The trial judge had not used that phrase, so the case was sent back for a further hearing. Knight v. Beverly Health Care, August 31, 2001.

Would it have helped for Ms. Cameron to discuss her wishes with her sons in advance? The financial and emotional cost of legal proceedings might have been avoided if family members had talked over the documents and their meaning before Ms. Cameron’s final illness.

The moral of Ms. Cameron’s story: It is not enough to just sign a directive—family members should be informed and wishes discussed in advance.

Court Refuses Permission For Withdrawal Of Feeding Tube

AUGUST 13, 2001 VOLUME 9, NUMBER 7

Twice before we have told the unfolding and tragic story of Robert Wendland. Fate and the California Supreme Court have now written the final two chapters in the saga.

You may recall that Robert Wendland was injured when his truck rolled over in 1993. Mr. Wendland had been drinking and despondent—at least part of his emotional state would later be attributed to the then-recent death of his father-in-law from a debilitating disease.

After his accident Mr. Wendland’s wife and brother testified that shortly before the accident he had expressed a wish not to suffer a slow, agonizing death like the one he had seen his father-in-law endure. If that was his wish, it was not to be granted.

Although Mr. Wendland was in a coma for a period of time after his accident, he recovered to the point that he could give some responses to questions posed to him by his caretakers. While his treating physician elicited yes/no responses to some simple questions, he gave no response at all to the most chilling of the inquiries: “Do you want to die?” The physician testified that he wasn’t sure that the other answers were really responsive, though they seemed to be consistent.

Mr. Wendland’s wife asked the California District Court for permission to remove the feeding tubes keeping him alive. His mother and sister objected. In an emotional opinion after hearing days of testimony, the judge declined to give her that power. (See the August 10, 1998, Elder Law Issues)

Mrs. Wendland appealed, and the California Court of Appeals sided with her. (See the March 6, 2000, Elder Law Issues) Mr. Wendland’s mother appealed that decision to the state’s Supreme Court.

Last week’s opinion from the California Supreme Court, though chronologically the final word, was really the penultimate chapter. Mr. Wendland died, feeding tube in place, just before the final court decision was announced. That decision reinstated the judgment of the trial court—in the absence of clear and convincing evidence of Mr. Wendland’s wishes, the Supreme Court held, Mrs. Wendland did not have the authority to direct removal of his feeding tube. Conservatorship of the Person of Wendland, August 9, 2001.

Mr. Wendland’s story has limited applicability for many reasons. It is a California court case only, and other state’s courts might reach a different result. More significantly, Mr. Wendland’s condition was unusual: he was not in a coma, not in a vegetative state, but still not able to communicate effectively.

Mr. Wendland lived eight years in personal limbo while courts tried to decide his fate. His death made the final decision both moot and ironic. Though we may never know Mr. Wendland’s true wishes the lesson from his personal and legal history is clear. Failure to sign a living will or other advance directive can, in the real world, lead to unwanted, expensive and ultimately ineffectual treatment.

Tube Feedings May Not Help Emaciated, Bed-Ridden Patient

DECEMBER 18, 2000 VOLUME 8, NUMBER 25

Frail, demented nursing home patients can eventually lose the ability to take food and fluids by mouth. When that process begins to occur tube feedings may be started. Doctors and family members may believe that such feedings prolong life and improve the ability to fight bedsores and disease. Dr. Thomas Finucane, a nationally recognized expert practicing Geriatric Medicine at Johns Hopkins in Baltimore, challenges that easy assumption. In a report for Elder Law Issues, Dr. Finucane explains:

Although it seems implausible, when faced with an emaciated, demented, permanently recumbent, poorly communicative patient with bedsores who is losing weight, clinicians and loved ones should remember there is no good evidence that administering tube feeding will help this patient.

Randomized trials are the gold standard for evaluating whether treatments are effective. Such trials are generally lacking with respect to tube feeding. Other data, some quite persuasive, have been developed, and these studies are virtually unanimous in showing lack of effectiveness.

Several lines of evidence suggest that tube feeding will not prolong survival when compared to a conscientious effort at hand feeding. Death rates are very high in the days and months after feeding tubes are placed.

No published paper suggests that tube feeding will reduce the risk of aspiration pneumonia; several trials find feeding tubes to be risk factors for the development of pneumonia. Aspiration pneumonia usually arises from inadvertent inhalation of either contaminated oral secretions or of regurgitated gastric contents. Tube feeding could not be expected to prevent either of these events.

Pressure sores have not been shown to improve when tube feeding is given. Once feedings are initiated, patients will produce more urine and stool, which are definite risk factors for pressure sores.

Risk of infection has not been reduced among tube fed patients. Serious and fatal infections have been shown to result from tube feeding.

Demented patients have not been shown to get stronger and function better with tube feeding.

Although it is difficult to know the experience of a noncommunicative person, there is no evidence that tube feeding reduces suffering. Restraints are more often used in tube fed patients.

Dozens of serious side effects have been reported as a result of tube feeding. Based on these data, it seems that tube feeding is overused in the care of patients with advanced dementia.

Legal battles over tube feeding have focused on comparing the benefits and burdens of the procedure. Benefits have been assumed, and burdens have usually been limited to the physical pain associated with insertion of tubes. Dr. Finucane challenges both sets of assumptions. He also challenges the medical community to undertake research to determine whether tube feedings really are beneficial.

Dr. Finucane’s analysis of medical studies, “Tube Feeding in Patients With Advanced Dementia,” was published in the Journal of the American Medical Association. Read the abstract or order his paper at http://jama.ama-assn.org/issues/v282n14/abs/jsc90078.html

“Wrongful Prolongation of Life” Suit Dismissed In Indiana

MAY 1, 2000 VOLUME 7, NUMBER 44

It has taken three decades to establish, but the notion of patient self-determination is now firmly entrenched in American law. A patient has the right to instruct that life-sustaining medical care be withheld or removed. To protect against future treatment, an individual can execute a living will and/or a health care power of attorney directing that care be withdrawn or withheld in future circumstances. But what happens when care providers treat the patient despite advance directives and against surrogates’ instructions?

Rebecca Jane Taylor was paralyzed on her left side and confined to a wheelchair after a stroke in 1992. She sought to prevent continued life support if she became terminally ill with no reasonable possibility of recovery. She gave her son Steven a health care power of attorney, and she even signed a form directing that a “do not resuscitate” order be placed on her chart at the Woodlands nursing home in Indiana.

In 1995, when Ms. Taylor suffered a second stroke and became comatose, her three sons met, discussed the situation and agreed. Steven Taylor signed the forms directing that his mother receive only intravenous fluids and that no tube feeding be instituted.

Two weeks later Ms. Taylor seemed to be responding to painful stimuli. Her attending physician directed that a nasogastric tube be inserted to provide both food and fluids, and the nursing home tried to contact Ms. Taylor’s sons.

Steven Taylor was at work that morning, and his wife promised he would get back to the nurse shortly. Rather than wait for Steven, the nurse called another one of Ms. Taylor’s sons, told him that his mother’s veins were collapsing and that she would die a terrible “dry death,” and got his consent. Shortly thereafter Steven Taylor contacted the nursing home and refused permission for the nasogastric tube. The attending physician decided he would break the apparent tie and instructed that the tube be inserted.

After Steven Taylor replaced the attending physician (and after the second physician increased Ms. Taylor’s tube feeding without informing family members), Ms. Taylor was moved to another facility. She died peacefully there ten days later, but five months after the Woodlands first violated Steven Taylor’s instructions as agent for his mother.

After her death Ms. Taylor’s estate brought a suit against the Woodlands for “wrongful prolongation of life.” The nursing home asked for dismissal of the suit, arguing that there is no such cause of action. The Indiana Court of Appeals agreed, insisting that Indiana law gave the Taylors their only remedy—they could have gone to court before their mother’s death to order the facility to comply with their instructions, but there was no claim for damages after her death. Estate of Taylor v. Muncie Medical Investors, April 20, 2000.

Appellate Court Ruling May Allow Feeding Tube Removal

MARCH 6, 2000 VOLUME 7, NUMBER 36

Just over eighteen months ago Elder Law Issues reported on the tragic story of Robert Wendland (“Lack of Advance Directives Contributes to Family Tragedy,” August 10, 1998). Last week the California Court of Appeals added a new chapter to the Wendland story, and may have completely changed the ending.

Mr. Wendland was injured in a 1993 automobile accident. Because of brain damage from the accident he has been completely dependent on others for his care; since the accident he has received food and fluids through a feeding tube.

Mr. Wendland has been married to his wife Rose for over twenty years, and they have three children. In late 1995, Mrs. Wendland asked the court to appoint her as conservator of her husband’s person (California’s term for a guardian), and it was apparent she would be appointed. At the same time she asked the court for permission to disconnect Mr. Wendland’s feeding tube.

About the same time, Mr. Wendland’s mother Florence received an anonymous telephone call informing her that a move was underway to remove her son’s feeding tube. She and her daughter (Mr. Wendland’s sister) filed an objection with the court.

Despite some improvement in his condition, Mr. Wendland remains a total-care patient. He is paralyzed on one side and he can not feed himself or control his bladder or bowels.

Mr. Wendland has been fed by artificial means since his accident—at first by a “jejunostomy” tube stapled directly into the inside of the small intestine. Such a tube requires general anesthesia, and Mr. Wendland’s tube became dislodged three times in the first half of 1995. When his wife refused to consent to the fourth replacement of the tube, doctors insisted on a nasogastric feeding tube (inserted through the nose and directly into the stomach). For nearly five years, he has been fed by a “PEG” tube inserted directly into the wall of his stomach and small intestine. It is that tube that Mrs. Wendland now seeks to remove.

Mr. Wendland never signed any “living will,” health care power of attorney or other advance medical directive. Mrs. Wendland testified that he did say he “would never want to live like that” after watching his father die three months before his own accident. That testimony was corroborated by Mr. Wendland’s brother, who told of warning him about drinking and driving just five days before the accident.

Removal of artificial feeding devices from brain-injured patients, tragic though it may be, is all too familiar in medical-legal circles. Since the late 1970s the issue of removal of life-sustaining medical treatment from incapacitated patients has been a rapidly-developing area of the law, with the U.S. Supreme Court even weighing in at one point, in the case of Missouri resident Nancy Beth Cruzan. Mr. Wendland’s story, however, is different from almost all the other cases reported in the courts.

Nancy Beth Cruzan (and, before her, Karen Ann Quinlan) was diagnosed as being in a “persistent vegetative state” (PVS). Although the diagnosis is relatively new, it has been well-described in the past quarter-century. PVS is not the same thing as “comatose;” comatose patients are completely unresponsive to external stimuli, while PVS patients often respond to noises, temperature changes and touch. In fact, PVS patients may appear to be awake, and even follow movement with their eyes. Properly diagnosed PVS patients, however, do not recover significant cognitive functioning—unlike comatose patients, who may awaken even after extended periods of unconsciousness.

Although Mr. Wendland was in a sixteen-month coma immediately after his accident, he is now awake and at least partly responsive. He can (after repeated instructions) operate a motorized wheelchair’s joystick control, and has drawn the letter “R” on command. Sometimes he cooperates with therapists enough to match colored blocks, again after instructions have been repeated multiple times.

Most remarkably, Mr. Wendland has (on at least one occasion in 1997) communicated with his physician by pushing or pointing at bars on an “answer board” set up to assist him. The physician first ascertained that Mr. Wendland’s answers were not random by asking “Are you Robert?” [Yes] “Are you Michael?” [No] and similar questions. Then he moved on to the questions central to Mr. Wendland’s future:

“Do you have pain?” [Yes]
“Do your legs hurt?” [No]
“Do your buttocks hurt?” [No]
“Do you want us to leave you alone?” [Yes]
“Do you want more therapy?” [No]
“Do you want to get into the chair?” [Yes]
“Do you want to go back to bed?” [No]
“Do you want to die?” [No answer]
“Are you angry?” [Yes]
“At somebody?” [No]

Despite his ability to respond to questions appropriately, his physician opined that Mr. Wendland did not seem to understand all the questions, and his answers could not be trusted.

The trial court appointed Mrs. Wendland as her husband’s conservator, but specifically limited her authority so that she could not remove his feeding tube. She appealed, and was joined by Mr. Wendland’s court-appointed attorney. Mr. Wendland’s mother and sister asked that the trial judge’s ruling be upheld.

The Court of Appeals’ 70-page opinion begins with a simple, but eloquent, observation: “This is the hardest case.” The appellate court then directs the case back to the trial court level, instructing the judge to hold further hearings and to permit Mr. Wendland’s mother and sister to put on any evidence they might have about his wishes prior to his injury.

After that evidence is in, according to the Court of Appeals, the question for the trial court is whether Rose Wendland has made her decision in good faith and based on medical advice. The trial judge’s determination that the feeding tubes could not be removed was reversed, though the final outcome is not certain, even seven years after Mr. Wendland’s tragic accident. Conservatorship of Wendland, February 24, 2000.

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