A Quick Look into What Supporting Choice Can Look Like

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Jennifer Brush and Maggie Calkins


The purpose of The Mayer-Rothschild Person-Centered Care Planning Process is to support long-term care communities in their efforts to honor residents’ choices and preferences that influence quality of care and quality of life, while mitigating potential risks associated with those choices. This process is specifically aimed at care planning when the choice carries sufficient risk, perhaps related to impaired cognition and inadequate decision-making capacity, and the community is considering not honoring the resident’s wishes. Following The Mayer-Rothschild Person-Centered CarePlanning process will help the care community work with the individual to understand and respect choices to the greatest extent possible, inline the respect we owe every individual and also with regulatory requirements.  What follows is a brief summary of the process.


Step 1: Identify and Clarify the Person’s Choice and Preferences


The process usually starts when a resident expresses a desire to do something, or refuses to do something that is thought by staff or family to be in their best interest. Engage in conversation and observe the individual. Review the person’s history to obtain detailed information about the nature and extent of past choices that the person has made and how that compares to the current wishes. Is the choice a one-time request or a refusal (“I don’t want to take this pill today”; “I want to shower without assistance today”), or is it ongoing (“I don’t want to take this medication ever again”; “I don’t want a feeding tube.”)? Is it consistently expressed, or perhaps a brief reaction to some other concern? Ask what is the reason the person desires this choice if it is different from the care team recommendation?


Repeat back to the person your understanding of what she or he desires to choose or refuse, to confirm both parties understand each other. Determine if the individual’s choice presents a perceived risk or safety challenge to the resident, other residents, or the community.  Clearly, people have less rights when it puts others at risk, than if the risks fall only to that individual.  If a choice represents a change in care community policy or the resulting options stretch the community’s comfort level, both the multidisciplinary care team and leadership (administrator, director of nursing, medical director, and physician) should be involved in the decision-making process.


Step 2: Discuss the Options with the Person


This is an opportunity for the person and staff to engage in dialogue so that the person can explain what is important to him/her, and why. This is for the purpose of helping staff to understand the person’s position and feelings as opposed to putting the person in a position of having to justify himself and his desire.


Discuss with and educate the person about the potential outcomes of respecting and aiding her or his choices, as well as the potential outcomes associated with preventing the person from acting on his or her choices. It is critical to consider and discuss potential positive outcomes as well as potential negative consequences. Staff should explain that the individual still has the legal and ethical right to make choices and to refuse treatment. After learning of and considering the potential consequences, the person may decide not to take his or her initial requested action, to curtail its frequency, or to select an alternative with fewer potential adverse consequences, or may continue to desire the original choice.


The intent of this step is for the team and individual to explore options that might be mutually acceptable. Therefore, understanding the motivation and context for the person’s request are critical developing appropriate options. This process of discussing the pros and cons of several alternatives may provide the best opportunity to assess the person’s decision-making capacity as it relates to the specific decision to be made. This is important, since decision-making is situation specific. Although an individual may not be able to make certain decisions, what is ultimately relevant to an assessment is whether that person is able to make the particular decision in question. Ultimately, the team should offer ways in which they can accommodate the choice and also mitigate potential negative consequences as much as possible.


Step 3: Develop a Plan to Honor the Choice


If a mutual decision is reached as to how the team will accommodate a preference to maximize the individual’s well-being, the team will work out with the person the specific steps the staff will take to support that choice. The individual participates in the entire care planning process and is made aware of the steps of the plan.


Step 4: Monitoring and Revising the Plan


The interdisciplinary team will monitor the progress of the plan and its effects on the person’s well-being, as well as the ongoing desire of the person to continue with the choice. The team will work with the person to revise the plan as needed and desired by the individual. As a person changes over time, or as different ideas and options are considered and tried, one’s needs and preferences and the way he or she expresses needs and choices will change. Care plans and staff should be flexible, as people have the right to change their minds. Monitoring should never be limited exclusively to auditing forms or records. Monitoring plans generally needs to include observing, assessing, and communicating with the person about his/her response to the planned interventions at a frequency that is appropriate for the particular person and choice.


Periodic formal reassessment is needed as individuals may change their mind over time and decision-making capacity may fluctuate or decline. Also, some individuals will require more frequent re-education than others; perhaps even every single time they engage in a common activity such as eating. Therefore, reassessment frequency should be individualized, on a case by case basis.


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