CentraCare, St. Cloud man clash on plan for wife’s care
A victim of a drunken driver, she was able to maneuver in a motorized wheelchair, go garage-saling or to the movies for almost 20 years after becoming paralyzed. And she was known for speaking her mind.
That changed a little more than a year ago when she suffered a cardiac arrest while in
Since a monthlong hospitalization last fall, the 46-year-old has lived at home the south edge of St. Cloud. Her constant companion, other than a rotation of personal care attendants, is her husband,
Holmes, 53, says he can still understand the words his wife mouths from her bed, and home health aides have worked out a method of communication in which Hughes-Holmes blinks her eyes once for no and twice for yes. Her husband, however, is now the only one who can speak for her. And he has run into a disagreement with
In a treatment plan developed for her in October, CentraCare said that if she were hospitalized Hughes-Holmes would not receive CPR, defibrillation, intravenous antibiotics or blood pressure support. The plan called for "comfort" care for Hughes-Holmes "in the dying process."
There's just one problem: Holmes doesn't believe his wife is dying and refused to sign the treatment plan because of its directive against potentially lifesaving care.
"They want me to sign this (treatment plan) and that's a dilemma for me," said Holmes, who gave health care authorities permission to talk about the case. "If we're going to be doing all her treatment at home on palliative care guidelines, why are you asking me to sign this? So if she comes into the hospital you're just going to let her die? I'm not willing to accept that."
Holmes says refusing to sign allowed CentraCare to deny his wife access to a primary care physician. Hughes-Holmes needs prescriptions for multiple medications and supplies to continue living at home. Without a primary care doctor, the only way she can get those items is for her husband to take her to the emergency room, which results in a major -- and some say unnecessary -- expense for the state of
Doctors have diagnosed Hughes-Holmes with several medical problems they say are not curable, including sacral ulcers, deterioration of mental and physical status, and susceptibility to frequent infections and pneumonia. According to CentraCare, that renders CPR, resuscitation and IV antibiotics virtually useless.
Yet, Hughes-Holmes has defied the odds. On a recent afternoon, about 6 miles south of
Her doctors didn't expect that.
"We have a patient who we have seen for 20 years and has had a great deal of deterioration and (in 2013-14) spent almost a year here," said
CentraCare at first stood firm on the care plan, which was created after evaluations by the organization's 20-person ethics committee and a review at the highest levels of leadership, according to Reuter. About a week ago, however, he told the Times that CentraCare was in the process of revising the document and replacing the treatment plan with "recommendations."
The activity came after Times inquiries and a
"We hadn't seen (Hughes-Holmes) in a number of months and now we have and so the physicians were going to get together again and re-evaluate the unique treatment plan," Reuter told the Times. "They've had a conversation based on what we recognize now are the current circumstances. ... The context is updated."
Holmes and CentraCare representatives could meet about the new recommendations as soon as this week. Both Reuter and Holmes say they don't believe the substance of the plan will change much, but Reuter said an internal medicine doctor has agreed to take on the responsibility of being Hughes-Holmes' primary physician.
"We will try within reason to do the things Charles wants us to do, but our position hasn't really changed," Reuter said. "... In terms of outpatient need, there is an internal medicine doctor who has said, 'I will take on her care.' This is an exception. They've gone outside of protocol because there were all kinds of good reasons why the relationship was severed. But we're making a special effort to care for this patient."
Unique relationship
Holmes knows what it's like to suffer. He served in the
So perhaps in some way he can relate to his wife's condition. Originally from
"I'd always had an eye for her, but she was dating another guy at the time and then she went to school in
Twenty-four years ago, Holmes' sister brought Tahnee over for a holiday dinner when Holmes was home for Christmas.
"I came up the stairs and there she was in a wheelchair," Holmes recalled. "She asked if I remembered her and, at first, I said no. She got kind of upset. But for some reason I showed up in her life at that time. She'd just lost her grandfather, who was caring for her. ... We really connected and I told her she could have a good life in her condition."
They've been together since.
"I knew the things I was going to have to give up -- my dreams and wants at the time -- because I wanted to give her everything," he said. "I always told her I would marry her. Then, in 2010, she went into the hospital and went into a coma. After that, I said, 'We ain't waiting anymore.' "
In
"Their wedding was fun -- you don't get to do a lot of those in home care," said
Friction with physicians
The relationship between Hughes-Holmes and her doctors -- with her husband ostensibly in the middle -- hasn't been placid.
While she received care without fail through CentraCare from 1991-2013, some stress from their interaction can be seen in documents leading up to the creation of the treatment plan that Holmes opposed.
In a letter to Holmes dated
Three weeks later, the day before Hughes-Holmes was discharged from her most recent hospitalization, a memorandum from
"The hospital has concerns about
The memo also stated "Charles has been unwilling to engage necessary and appropriate hospice services. The hospital has a good-faith belief that he will continue to present at the hospital with Tahnee and request aggressive treatment."
Reuter said Hughes-Holmes had "gone through multiple physicians" and has a "history of noncompliance" with directives.
"Any person in this community can fire a physician, saying, 'I don't like them' or 'I want a different opinion' or whatever," Reuter said. "If you fire enough physicians or don't show up for appointments, eventually you run out of physicians -- especially if you are a highly complex medical patient."
On
"I believe Charles deeply cares for his wife and, in decision making, we're all driven by things that affect us personally," Reuter said. "I don't know what those factors are for Charles. I know he's an advocate for her and wants her to live as long as possible ... It's hard, because we want to help. And she has received excellent care here and is receiving a standard of care that most families would say, 'Let's keep her comfortable.' That reaction is common for most people in this circumstance."
Reuter, who has been a member of CentraCare's ethics committee for 15 years, said the hospital makes decisions based on the patient's choices or health care directive, that any action will benefit the patient and do no harm, and that the course of action is fairly applied to other patients in the same circumstance. While
In addition to its own ethics review, the hospital consulted with the
Navigating documents
Onstad, who in 2013 became an ordained minister, has been in home care for 12 years and worked with Hughes-Holmes for the past seven. She says the root of the disagreement between Holmes and the hospital is the definition of palliative care.
"Palliative care is not hospice," Onstad said. "You do not have to have a DNR (do-not-resuscitate) order to be on palliative care. Essentially, what palliative care means in this situation is we're never going to make her walk again or breathe on her own again. It's not going to be about rehabilitation to a previous state. It's about maintaining stability of her health systems in her current state."
Onstad said she made several attempts to reach
CentraCare officials said on examination the hospital had no reason to admit Hughes-Holmes. But she wasn't going home without medication.
"Because of the waiver she receives, which is a source of payment from
According to CentraCare, the hospital would be reimbursed as little as
The actual cost is much greater, but the
Why not just change doctors? Holmes said he approached
"Charles isn't saying that if Tahnee went into the hospital tomorrow and she coded and something happened -- he hasn't said he wouldn't say 'Stop CPR,' " Onstad said. "He's not saying he wouldn't do that, or that he would push and push and push. I think his issue is that this (care plan) is a blanket document and no one can predict the reasons that somebody is admitted to a hospital. And how can you ask someone to predict care that they're going to want for their loved one in six months or a year? You just don't know."
Health care directives often are key to these situations, and Hughes-Holmes filed one in 2005 with two witnesses at
But Hughes-Holmes appears to contradict herself in her directive. On one page of the seven-page document, she wrote life would no longer be worth living "when my brain stops functioning." On another page, she said she would want caregivers "to do every possible to revive me," and "every(thing) possible to live."
Farther down the page she wrote that if she was completely dependent on others for care and unable to decide or speak for herself, she "would not want to be a vegetable."
Ethics committee weighs in
Now retired and living in St. Cloud,
She been a community representative on the ethics committee at
"How do you tell when someone is in the process of dying? Or when they can be improved?" asked Peterson, who said she's not Catholic, nor even religious. "You don't want to do anything that's going to hurt the patient. You've just got to balance the benefits and the burdens ... And you've got to think of the physicians, too. Are they going to just stick needles in this patient, do this or that surgery for nothing? That's not cool, either.
"You almost have to do an individual case analysis on every single one. And in this case, from what I heard, we did more than what many other hospitals would do. If this patient was at a larger hospital in
Any patient, family member or health care professional can bring an issue to the CentraCare ethics committee. The committee reviews two to five cases a year, and Peterson said they usually involve end-of-life issues.
"Some come from patients or their families but most come from doctors or nurses who say, 'Look, this is not the best thing for this patient,' " she said. "You think about a 90-year-old lady and, if I have to do CPR, I'm going to crush her chest. All you're going to do is cause pain and distress."
Peterson said futility also has to be considered when deciding which patients should receive priority to be in an intensive care unit. But all decisions are based on the welfare of the patient.
"I don't really care what the hospital wants," Peterson said. "I give them my opinion no matter what. That's my
Waiting for direction
Holmes has consulted with a local representative of the state
"When our physicians last saw her, (Hughes-Holmes) was in stable condition," Reuter said. "We will do all we can to help her stay that way ... But (Holmes) has to understand that could put us in a position of trying to do some of these things we don't even know are possible and, once we start them, they may contribute to a more traumatic death than what she would experience otherwise. That's where we have the ethical rub.
"These are not easy, black-and-white issues," Reuter added. "There's a lot of gray there ... But we're trying to make this work and we want her to get the best care she possibly can. Our goal is to always care, even if we can't cure."
Onstad said there's no reason for Holmes to fight for his wife, other than his love and compassion.
"To have home care to this extent is a huge sacrifice," Onstad said. "You're never alone. There's no privacy. There's no benefit to this for Charles."
In fact, Holmes said he's given up more than 20 years of his own life for his wife.
"I became her arms and her legs," he said. "The things she couldn't do, I tried to do for her so she didn't focus on that. I tried to give her some normalcy of life. Whatever you want to call it, we lived a normal life. It might not look like other people's, but I can't walk away from that. No."
Why did he take his fight public? Holmes said he wants people to be more vigilant if faced with similar circumstances.
"Don't let physicians make up your mind," Holmes said. "It's your choice. And there's a lot of pressure when you're in that hospital room. If you don't have it together, you might lose three more months with your loved one because you've been pressured.
"In my mind, that is my life in that bed in there," Holmes said. "If I'm willing to live with it the way it is, I don't think you should question me on it."
Just how they will proceed remains in question, one that must be answered soon. According to Onstad, Hughes-Holmes' supply of medication will run out again Monday.
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Find more resources online
To learn more about health care ethics and to find resources, visit the following:
University of
The Hastings Center, www.thehastingscenter.org.
National Catholic Bioethics Center, www.ncbcenter.org.
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