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She has had seven strokes since 1995, the most recent of which on April 23 caused a violent dementia with severe agitation, fear, anguish and delirium. She also has diabetes, anemia, pneumonia, respiratory failure and other medical conditions.
She refuses to eat or drink, and tore out feeding tubes in the past. The only way to keep feeding her, her doctors say, is to keep her sedated.
Her family has filed documents in La Crosse County Circuit Court to authorize Gundersen Lutheran to cease life-sustaining treatment.
A judge already has declared the woman incompetent and appointed her daughter as guardian.
But a guardian has no authority in Wisconsin to make that kind of treatment — or lack of treatment — decision unless the patient is in a persistent vegetative state or has expressed wishes through a conversation or advance directive.
The woman at Gundersen Lutheran meets neither requirement.
Robyn Shapiro, a Milwaukee attorney representing the woman’s family, said she knows the case will challenge Wisconsin Supreme Court rulings but believes the guardian should have more authority to make decisions, as provided by many other states.
“Will this case go all the way to the state Supreme Court? It could, but we all agree it is a terribly important case,” said Shapiro, who also is director of the Center for the Studies of Bioethics at the Medical College of Wisconsin. “We need to modify the restriction imposed by the court, and create more sophisticated and intelligent law.”
Shapiro had asked that the court “resolve this issue on an expedited basis” due to the woman’s dire medical condition and continued suffering.
But Circuit Judge Michael Mulroy, who retires July 31, has not set a hearing date.
“We were hoping to get a date in late July, because this poor woman is suffering even while she is sedated,” Shapiro said. The woman grimaces, she said, and frequently moans.
Shapiro wants the judge to appoint an attorney for the woman and an adversary attorney to argue the other side. If a judge grants the family’s request, Shapiro said she expects the adversary attorney to appeal the decision.
The family tried to get an advance directive from the woman and learn of her wishes, but they didn’t succeed, and never had a direct conversation with her about life-sustaining treatment, Shapiro said.
However, when competent, the woman’s actions showed she placed a high value on her personal dignity, Shapiro said.
Despite being weakened by health problems, she would exert great effort to get to the bathroom rather than soiling herself and she gave up her blood pressure medicine so she could pay bills on time, Shapiro said.
The family declined to comment, but Shapiro said they believe the woman would want her care to focus on comfort and relief, but not sustaining life.
Bernard Hammes, a medical ethicist and director of medical humanities for Gundersen Lutheran Medical Foundation, said the hospital’s Medical Ethics Committee agrees with the family’s decision.
“The family believes if the woman could speak for herself, she would choose not to have life-supporting measures such as a feeding tube,” Hammes said. “They believe she wouldn’t want to be kept in a permanently sedated state, which is far from normal, and the best care is to focus on her comfort and not have a goal of extending her life when there is unclear or no benefit.”
Hammes said the woman’s condition cannot be reversed. Doctors had a conference with the family, who requested hospice care, he said.
Doctors said total sedation with a feeding tube creates risks of aspiration — food inhaled into the lungs. The woman also is on insulin, needs frequent blood draws due to her anemia and probably will need blood transfusions some day.
“We don’t see how medical care can help this person,” Hammes said. “The burden of treatment for her is unacceptable, and she still suffers with treatment.”
When the woman is not sedated, she is out of control, Hammes said.
“We have a terrified, anguished woman not eating, and leaving her in an anguished, terrified state is inhumane treatment, and we have no way of relieving that anguish and terror without permanently sedating her,” he said.
The woman, referred to as M.R.N. in the legal guardianship petition, has been continuously hospitalized or in a nursing home since her last stroke. While hospitalized, she would not eat or drink and pulled out a feeding tube three times when medical staff tried to provide nutrition and hydration, Shapiro said.
After many medication attempts, the woman was kept calm and able to drink and eat adequately. She then was sent May 18 to Lakeview Health Care Center in West Salem, Wis.
On June 7, the woman was transferred back to Gundersen Lutheran in a locked psychiatric unit after her agitation returned and she threatened nursing home staff.
Extensive tests and multiple medications led doctors to decide the woman’s dementia, agitation, anguish and delirium will not improve, and treatment short of total sedation will not manage her condition.
“The problem is we can’t really help her, but only extend her suffering,” Hammes said.
ABOUT ADVANCE DIRECTIVES
WHAT: An advanced directive is a statement of how a patient would want health decisions to be made if they become incapable of making those decisions. Formal documents include living wills, declaration to physicians and power of attorney for health care. In Wisconsin, the appointment of a power of attorney is important.
DISCUSS: In a crisis, the medical record (and the patient’s advance directive) may not be instantly available and medical staff may begin emergency care to sustain life. However, treatment can be stopped if the patient’s wishes are known and a power of attorney has been appointed. Have a discussion with your family.
CHOICES: Patients can change their minds. Advance directives may be changed or revoked at any time, as long as the patient is capable of making a decision.
HOW TO GET STARTED: To get advance directive documents at Franciscan Skemp Healthcare, call (608) 392-9754, or (608) 393-9505. At www.gundersenlutheran.org, you can download a booklet on advance directives, a power of attorney for health-care document that meets the state law in Wisconsin, Iowa and Minnesota and a 20-minute tutorial that guides you through the document. You also can call Gundersen Lutheran at (608) 782-7300, ext. 56000, or 1-800-362-9567, ext. 56000.
Terry Rindfleisch can be reached at trindfleisch@lacrossetribune.com or (608) 791-8227.
