Dementia patients require special ethical regard
CMs should look at who the person used to be
The past may provide the best tool for case managers to help families make ethical decisions for clients with dementia.
Early in her long-term care career, Chari K. Weber, BA, director of Nasan Center of Breck inridge Village, a Presbyterian Retirement community in Willouhgby, OH, had a patient who made that point poignantly clear. The patient was an internationally known attorney who now had Parkinson's disease and a mild dementia. "His wife interpreted for him a lot. He had difficulty with speech and with making it to the bathroom on time," she recalls. After his wife died, the patient became incontinent and nursing home staff placed him in diapers. "I entered his room one day, and he was in tears. He said, 'I used to be a lawyer. What am I now?'"
"We have to think about what we do to people to make it easier for us to care for them," Weber says. "If we look to the people who can make judgments about who the person used to be for guidance, and combine that with our observations of who the person is right now, it's easier to make good decisions."
No case manager is an island
It's important for case managers to remember that there's no need for them to struggle alone with ethical dilemmas, adds Nancy V. Leonard, MSW, LCSW, social services care manager for Connecticut Community Care in Bristol. "You are not an island. Making ethical decisions is easier if you work as part of a team."
Case managers seeking ethical solutions to care issues for dementia clients have more than one source of support, say Weber and Leonard. Those include:
o Team conferences. "Case conferencing with other clinicians helps clarify all the areas of concern," notes Leonard. "In daily practice, it's often difficult to address some of these issues without support and input from peers and clinicians from other disciplines."
o Ethics committees. "Of course, many health care facilities and organizations have their own ethics committees. But I also know case managers in private practice who have formed their own ethics groups to help them address these issues," Weber says.
She suggests that case managers consider these questions as they coordinate care for dementia clients:
· What were the person's wishes in the past?
· What does the person want now?
· Is the person consistent in wanting this?
· Are there issues of health or safety that override the individual's desires?
· What does the family want?
· Are we giving care for the physical person priority over treating the patient with dignity?
"Many decisions we make in long-term care don't involve major ethical dilemmas, but they do impact the dignity of our patients," Weber says. For example, she remembers watching an aide feed peas to a dementia patient who had lost the ability to speak. "Every time the spoon of peas came toward her, the patient would turn her head away. Finally, the patient slapped the spoon in frustration. The aide turned to me and remarked, 'I don't think she likes peas.' And then continued the process of spooning the peas into the patient's mouth."
Many common issues addressed in the long-term care of dementia patients are similar in nature. "We may think they're important, but we have to step back and think whether the issues truly are important to the patient's health or whether they are simply important to us." Weber says one example is an older woman who has not taken a tub bath for years. She enters long-term care and refuses to allow aides to bathe her. Questions Weber says case managers might ask facility staff include:
- Is it necessary for her to take tub baths?
- Is she capable of maintaining adequate hygiene with sink baths?
- Does she have unpleasant odors?
- Does she have any infections or skin breakdowns?
Weber recommends that any health care professional working with dementia patients take part in a dementia training program. During inservices, Weber gives staff role-playing cards. One employ ee might receive a card that says she is to play the part of a dementia patient who has difficulty recognizing common objects. Another might receive one requiring him to help the other employee with lunch. "The staff member assigned to do the feeding isn't told what the other person's problem is; they just have to watch a co-worker who otherwise looks normal having difficulty recognizing a fork," Weber explains.
Role-playing helps staff begin to recognize the common symptoms of dementia, she says. "It's easy to see a paralyzed arm and recognize that the patient no longer has use of that limb. It's harder for staff to be compassionate about cognitive losses. Role-playing helps them recognize that there is still a person inside."
Negotiation 101
One of the most challenging situations for case managers involves dementia patients who refuse care, Leonard says. "From an ethical perspective, how do you approach a client who absolutely refuses care but has significant safety issues that must be addressed? There may be burnt pots on the stove or no food in the house, but your client still refuses to allow a homemaker into the home."
In those situations, case managers not only have to become creative, they also must put on their negotiating hats, Leonard says. "If you're concerned that the client is at significant nutrition risk but is refusing the services of a homemaker, suggest that you arrange for Meals-On-Wheels delivery. Ask if it would be appropriate for a companion to sit and talk with the patient when the meal is delivered," she suggests. "Maybe you'll find the client was formerly a professor of American history who loved lecturing. Suggest the client might like to discuss or even prepare lectures on American history for a companion during meal times. The companion can observe whether the client eats the meal.
"Case management for dementia clients requires constant balancing of issues of safety and autonomy," she says. "There are no cookie-cutter approaches. Case managers must look at the total picture of where the individual lives, what the degree of impairment is, and make a case-by-case assessment."
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