January 01, 2011

Mrs. Adams (not her real name) was like so many other residents with advancing dementia, repeating expressions and following her firm routines. Before entering our facility, she had suffered a stroke that left her aphasic, and the caregivers here decided that she must have had some kind of mental illness prior to her stroke, because she definitely was difficult to care for.

She came to our facility as a Medicare Part A rehab patient. She had dense hemiparesis, which prevented her from walking, standing, or transferring between bed and wheelchair. Her balance was precarious while sitting. Two expletives – “No!” and “Go to hell!” – were the only speech she was capable of.

Mrs. Adams was outraged at her debility. She screamed at everyone around her: therapists, nurses, and aides. Her daughter, who visited daily and tried to encourage her mother, seemed to bear the brunt of Mrs. Adams' wrath. “Mom has always done things her own way,” the daughter would say.

Mrs. Adams eventually plateaued in therapy. When she was discharged from Medicare Part A care she was able to transfer herself between bed and wheelchair, use both feet to propel her wheelchair, and wash her face. Her speech and language never recovered, however, and she was unable to make known when she needed to be toileted, and thus was incontinent of both bowel and bladder.

 

 

Quarterly Patient Care Conference

Nurse Manager: Your mother has had no falls, no infections, and has no wounds. She is able to wash her face in the morning but needs an aide's help with all other personal care functions. Since she is often incontinent, the aides need to change her regularly. Many times, she gets agitated when they attempt to change her, screaming and kicking at them. We have tried gentle reassurance when changing her but, so far, we have been unsuccessful. We would like to start her on an antipsychotic medication, such as haloperidol, to make it easier to care for her.

Daughter: Mom has never been a person who easily takes pills. There have been a number of times in her past where her doctors recommended, insisted, that she take medicine, such as for an ulcer or postsurgical pain, but Mom has always refused. She always said she'd rather get by without the chemicals.

Nurse Manager: Since you are her daughter and health care proxy, can you give us permission to give her the medication?

Social Worker: Technically, the health care proxy can't, because the antipsychotics are in a special class of medications. Besides, it is Mrs. Adams's right as a patient to direct her own care and to be free of medications if she so chooses.

Nurse Manager: I'll instruct the caregivers to be careful with their approach to Mrs. Adams and see how well we can do with her.

 

 

Three Months Later

Nurse Manager: Personal care remains an issue. Mrs. Adams has decided that she does not want baths or showers, and we have been able to change her adult brief no more often than once daily. She shoos us away no matter how we try to approach her. Since she is incontinent of both bowel and bladder, she is sitting in excrement for hours every day, sometimes for more than a day. I am fearful that her skin will break down and then we will have a very difficult time trying to do wound care on her buttocks. I would really like to try a medicine that will make it easier to care for her.

Daughter: I would really like my mother to be kept clean and dry, and I know that your staff is trying diligently to help her. Since her stroke, she has been so belligerent and so unlike her previous self. It is tragic that she cannot communicate or help us understand what is troubling her in this area.

Social Worker: But the rules are very clear that the power of attorney for health care cannot give permission to give her an antipsychotic if she isn't willing to do so. She would have to have a legal guardian and even then I am not sure if she can be compelled to take a medicine against her will.

Privately, Medical Director to Social Worker: Do you mean that I can't just slip the haloperidol into her applesauce? Seriously, since that's not allowed, let me discuss the situation with the corporation counsel.

 

 

Phone Call to Corporation Counsel

Medical Director: Help!

Corporation Counsel: The law is very clear that a person cannot be given psychoactive medications against his or her will, even with the approval of the health care proxy. However, as you describe the situation to me, Mrs. Adams is a risk to herself since she is unable to understand the importance of allowing the caregivers to change her adult diapers.

As you said, she is at risk of bedsores and infections and, ultimately, death. She needs care that she doesn't comprehend. Her health care proxy and the skilled nursing facility staff agree that she needs to be able to allow herself to be changed.

I would like to be able to give permission to override her objections, but cannot. The only way I see to resolve this issue is to have the judge hear it and rule that, under strictly specified guidelines, the health care proxy can give permission for the medication. I will begin to work on this and we will follow up. The judge may require Mrs. Adams's presence in court. Do you think that that is possible?

Medical Director: Highly unlikely. She is wheelchair bound and confused. Her only two expressions are “No!” and “Go to hell!” But when the court date is scheduled, I'll work with you on it.

 

 

A Court Hearing, Months Later

Mrs. Adams, her daughter, the medical director, and the social worker listen to the circuit court judge via speakerphone in the skilled nursing facility's conference room. As the judge summarizes the case and starts to ask questions of the corporation counsel, who is with the judge in his chambers, Mrs. Adams refuses to sit quietly with us, yelling “No, no, no, no, go to hell ….”

As her daughter attempts to quiet her, the judge scolds and complains that he cannot hear the answers to the questions he has posed to the corporation counsel. Mrs. Adams refuses to be quiet. The judge agrees that she is not able to understand the proceedings and allows her to be excused from the conference room.

After her departure, her daughter answers the judge's questions about her mother. The medical director reports that Mrs. Adams's condition has rendered her unable to understand why the nurses aides need to change her adult diaper and that the resulting lack of care is jeopardizing her health. A few questions later, the judge agrees and signs the order giving the facility permission to give the patient the prescribed psychoactive medication without her knowledge. Case closed.

 

 

Follow-Up

With the court order, we thought that there would no longer be any difficulty getting Mrs. Adams to take haloperidol-laced fruit juice and, at first, we were right. After a few days of haloperidol, her personal care was going well and, although still cranky, Mrs. Adams allowed the caregivers to change her adult diapers regularly. The skin of her buttocks was intact and no longer reddened. Problem solved? No.

Within 3 weeks, Mrs. Adams started refusing the haloperidol fruit juice but not others. Her speech may have been impaired, but her powers of observation remained intact. An astute caregiver announced that Mrs. Adams had realized that the haloperidol-laced juice was always given to her by the nurse, but the regular fruit juice was given to her by the dietary aide.

Mrs. Adams had begun consistently refusing anything offered to her by the nurse. The facility's protocol could not allow for an unlicensed dietary aide to give a medication to a patient. We considered and then rejected having the juice on the table in the dining room before Mrs. Adams wheeled herself in, lest another resident might take the medication intended for Mrs. Adams. Checkmate.

The difficulty with toileting remained problematic the rest of her days.

Who makes up the interdisciplinary team? How far beyond the four walls of the skilled nursing facility can the team extend? Although when we think “IDT,” we typically consider the professionals who work inside our nursing homes and skilled nursing facilities, residents such as Mrs. Adams require significant outside help. Her case reminds us that the team can include attorneys, judges, and other outside professionals whose work can influence the care of residents they may never meet in person.

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