By Kathy McCollett, Organizational Culture Change Specialist, PHI
Let me start by saying that there is a huge difference between consenting to do something and choosing to do something. When health care professionals use the phrase “informed consent,” it generally means that after receiving information and advice, the nursing home resident is agreeing to do what the healthcare professionalwould like them to do. In all fairness to the person requesting the consent, their request is likely based on years of experience and perhaps evidence-based practices. The requestor may feel that his or her perspective on the issue is as solid as the rock of Gibraltar, and therefore,if the resident does not agree, there is now a problem that needs to be fixed. The resident, and sometimes their family members, has taken a stance that feels oppositional, even adversarial, and that does not comport with “industry standards.”
Initially, the healthcare professional may feel that the resident doesn’t have enough information to make an agreeable decision. So, logically, more information is provided. Sometimes these conversations allow for collaborative problem-solving and all parties come to an amicable agreement. But sometimes, the resident–or their family–simply does not agree or chooses not to consent to a particular treatment, procedure, or protocol. If the healthcare worker has done a reasonable job of explaining why the doctor, nurse or nursing home holds their particular point of view, then it is documented in the resident’s chart that the resident has been “educated” in relation to the issue under discussion.
But that is not usually the end of the matter. In an effort to get the resident to ultimately consent, the healthcare professional may be acting on a number of assumptions. They may be thinking that if the resident doesn’t agree, or consent, he or she isn’t thinking clearly. If the resident is vehement about it, it could be concluded that the individual is irrational, or perhaps having cognitive difficulties. The healthcare professional may think, “Maybe someone else could talk to the resident, someone the individual would listen to, someone who could get the resident to agree.” All of this is usually with the best of intentions.
For instance, a caregiver who is assigned to care for a woman who has had cardiac surgery comes in to ask the resident to come to the dining room for breakfast. The resident explains that she does not want to go to the dining room, but would like to have a small breakfast in bed. The caregiver will bring her breakfast from the choices associated with her particular diagnosis or from a tray prepared by the dietary department. The caregiver must be sure to bring food that follows any therapeutic diet and associated restrictions—including thickened liquids–that have been designated by the physician.
When the caregiver brings the tray to the resident, she sees scrambled eggs, limp toast, ground sausage, a bowl of oatmeal, orange juice and coffee. The individual says that she just wants a piece of toast with butter and jam and some coffee. The caregiver tells her that she needs to eat so that she has the nutrition she’ll need “to get better, so she can go home.” The resident feels that no one is listening to her. She says that what everyone wants for her is taking precedence over what she wants for herself.
The resident, however, has the right to choose what she wants for breakfast as well as the portion size. By not eating what has been recommended, the nursing staff may indicate that the resident is refusing her breakfast when, in fact, she is eating what she would normally have if she were at home. At the interdisciplinary team meeting, there may be a discussion about her unwillingness to comply, or consent to what the healthcare professionals deem as essential to her care plan. It is entirely possible that there could be a recommendation that she have a psychological evaluation to determine if she is depressed. This may be perfectly appropriate, but it may be a reaction to the fact that the resident doesn’t want to do what the healthcare professional wants her to do.
These situations exist many times over in nursing homes across America, not only around mealtimes, but with everything from administering medications to attending activities. Decisions are made for the individual being admitted prior to their coming, while they are there, and even for the time after they go home. This writer is not advocating for relinquishing or diminishing the responsibility of the healthcare professionals to inform, educate, encourage, and assess the needs and goals of the residents in any way. The care and support needed and wanted by residents in nursing homes should be determined through a collaborative process between the home and the resident and their family members (when this is appropriate). This process should result in a resident-directed approach to each person’s stay. Ultimately, it is the resident or the person designated to make decisions for them, who has the final choice in any matter. Hopefully, that will be a fully informed choice.
January 6, 2012. Tags: choice, consent, Culture Change, healthcare, Kathy McCollett, PHI. Culture Change, Eldercare, Long-Term Care, Person-Centered Care, Uncategorized. .
My mother was cared for by a wonderful woman, Darlene, during the time she needed long-term care and caring. One day, I asked Darlene if my mother could go somewhere with me—I don’t remember where, but it really doesn’t matter. What matters is the quizzical and rather piercing look I received from Darlene. Thinking that maybe she didn’t hear me clearly, I repeated my query. This time she responded not only with words, but with her arms flailing wildly for emphasis. “Why you are asking me?” she replied. “Your mother is the boss, not me.” And then, with a finger pointing my way she continued, “For heaven’s sake, ask her, not me.” Point well-taken indeed, and clearly never forgotten.
More and more states continue to “rebalance” their provision of long term care, focusing their efforts squarely on moving some of the care from more nursing homes to home- and community-based settings. This, of course, is not only more cost effective, but is what most folks tell us they want. Here in Ohio, our approach to rebalancing is multidimensional. In additional to shifting the balance back to providing more care in the home, we are also focusing on the message Darlene sent to me loud and clear. We are concentrating not only on where the care is delivered but also how, by whom and when. Think about it: If we are getting up on someone else’s schedule, going to bed when they decide and eating the food they think best for us at the hour they determine, are we really “home?” Or are we living in a house that used to be our home? In other words, who is in charge—or to paraphrase Darlene, “Who’s the boss?” After all, aren’t we the boss in our own homes? Don’t we make our own decisions whenever possible? And don’t we have real relationships with the people there?
Care in which the person needing the support is living as normal a life as possible and making as many of her own decisions as possible (regardless of whether the care is provided by family and friends or formal care from paid caregivers) is best described as person-centered care. It is the kind of care each of us would want for ourselves and for our loved ones. While there are many different approaches to person-centered care, the core values that unite them are choice, dignity, respect and self-determination. Person-centered care always is characterized by individual choice in schedule and relationship. To achieve this, formal and informal providers adjust their care and routines to the needs of the care recipient instead of the other way around. So, instead of being reassured that, “Mom is adjusting well,” in a person-centered care situation, a daughter will hear, “We are adjusting well to your mom.”
Perhaps a former care recipient said it best when she commented, “You haven’t lived ’til you’ve gone to the bathroom on someone else’s schedule.”
I would be remiss if I didn’t add that research suggests that everyone benefits from person-centered care. Health and functional outcomes are better, costs are lower and both providers and consumers are more satisfied. Sounds like a win-win-win situation to me!
Person-centered care certainly worked for our family. My mother, “the boss,” lived for a full six years being cared for and cared about by Darlene. She lived a full six years being loved by Darlene. In her own way, she loved Darlene right back. Isn’t this the kind of care and caring we want for all of our elders? Who’s the boss in your caregiving situation?
Resources
1) Ohio Department of Aging Web site: www.aging.ohio.gov
2) Ohio Department of Aging on Facebook
3) Ohio Department of Aging on Twitter
Day 20: Who’s the Boss? Providing Person-centered Care and Caring by By Bonnie Kantor-Burman, Director, Ohio Department of Aging is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.
December 12, 2011. Tags: 30 Days of Caregiving, Bonnie Kantor-Burman, care, caring, choice, community, dignity, Long-Term Care, nursing home, Ohio Department of Aging, Person-Centered Care, respect, self-determination. Culture Change, Eldercare, Long-Term Care, Nursing Homes, Person-Centered Care, Uncategorized. .
