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Ethical Issues and Team Resolution When a Resident Says “No!”

      Mr. B is an 86-year-old man living in a nursing home who fell and sustained a left hip fracture when walking independently to the bathroom. He underwent an open reduction and internal fixation of the hip with a cephalomedullary pinning and returned to the nursing home for rehabilitation.
      His past medical history includes hypertension, chronic obstructive pulmonary disease, congestive heart failure (ejection fraction is 55%), hemorrhagic stroke, and atrial fibrillation. His medications include amlodipine at 2.5 mg by mouth daily; vitamin D at 2,000 units daily; Lipitor at 40 mg by mouth daily; Lasix at 60 mg by mouth daily; tramadol at 50 mg every 6 hours as needed for pain; coumadin at 2.5 mg by mouth daily; MiraLAX at 60 grams by mouth daily; and acetaminophen at 1,000 mg three times a day for pain.
      Before the fracture he had needed assistance with bathing and dressing and could ambulate to the bathroom and short distances in the hallway with contact guard for balance and endurance. The staff provided much encouragement to get Mr. B to walk because he preferred to stay in bed.
      His laboratory tests at readmission are within the normal limits except for a hemoglobin of 8 g/dL and a hematocrit of 26%. He was started on oral ferrous sulfate at 325 mg daily in the evening to help with his postoperative anemia. His weight is stable at 165 pounds, and he is eating and drinking well. Cognitively Mr. B is at his baseline with a Saint Louis University Mental Status (SLUMS) score of 27 and a Patient Health Questionnaire-9 (PHQ-9) score of 2.
      Mr. B is happy to be back in the facility, but of concern is that he chooses to stay in bed. He declines to participate in therapy, and he is now dependent for bathing and dressing. Multiple staff encourage him to get out of bed each day, but he tells them he needs just one more day in bed due to pain and fatigue. Each day he promises to get up the next day.
      The interdisciplinary team (IDT) respected Mr. B’s wishes to remain in bed for the initial three days he was back in the community. However, his daughter has expressed disagreement: she said that her dad would continue to refuse to get out of bed, and she wanted the staff to stop accepting “no” for an answer. The IDT convened to discuss how to balance Mr. B’s wishes, his daughter’s concerns, and the facility’s responsibility to provide the expected standards of care.

      Social Work

      Paige Hector, MSW
      Ms. Hector is a social work expert and a coeditor of this column.
      The traditional medical model tends to be hierarchical in nature and can also lend itself to a power-over approach, especially when issues around “noncompliance” are involved. When we focus solely on solutions (aka “strategies”) — such as getting out of bed or staying in bed, or participating with therapy or not participating with therapy — the essence of what is important to the resident gets lost and leads to unfilled agreements.
      Resist the habitual, socialized tendency to argue, criticize, or debate with Mr. B. Rather, try to facilitate an empathic connection (which also supports person-directed care) and consider these questions:
      • Do you long for everyone to let you make your own decisions about how you want to spend your day?
      • Are you frustrated because you want to be respected for your point of view even when there is disagreement?
      • Is it important to you to be in charge of your decision-making?
      • Would you like some patience for what you are going through?
      • Would you like to know that others have a sense of how hard this is for you?
      These questions are called empathy guesses. The focus is on the underlying needs that are impacting Mr. B’s choices. Listen carefully for phrases like I want, I would love, I value, and I would enjoy because those are clues to an underlying, and likely unmet, need.
      The daughter also needs empathy. What is important to her, and what are her needs — for instance, trust, reassurance, compassion, or consideration?
      It’s important to give the staff empathy as well. They might feel torn between honoring Mr. B’s choice to stay in bed and worrying about providing high-quality care that can further deconditioning. Talk with them about conflict with the daughter, the impact on survey outcomes, how to uphold standards of care, or issues related to reimbursement for the skilled stay. Be clear how the staff should proceed.
      When everyone feels understood for what is important to them, I would then engage in discussion around strategies for meeting unmet needs. If appropriate, I would also ensure that Mr. B and his daughter are informed of the risks and benefits if he chooses to remain in bed and not participate in therapy. Remember that honoring his choices can have a positive impact on his quality of life, even if there is potential for a negative outcome.
      It might also support the team to use an ethical decision-making framework like the 4-Box Paradigm (University of Washington, 2018, https://bit.ly/3dR5rkN), which invites everyone to contribute to the discussion and helps unclutter complicated situations. Ensure that the documentation and care plan reflect the issues discussed, the facility’s responsibility, and person-centered strategies.

      Activity Professional

      Diane Mockbee, BS, AC-BC
      Ms. Mockbee is an Activity Consultant/Educator – Board Certified through the Activity Professionals National Credentialing Center. She had worked as an activity director and dementia trainer in long-term care for over 28 years until retiring in 2018. She currently consults and speaks in a variety of settings.
      The IDT should approach all activity as therapeutic, including leisure activities. The activity professional could explore Mr. B’s leisure interests and maximize those to increase socialization and endurance and to enhance his mood. One-to-one visits and bed exercises could assist in gaining his trust and increase his feelings of safety and security.
      Activities like chair exercises, socials, and entertainment would offer opportunities for Mr. B to join the life of the facility. Consider using holistic healing interventions such as aromatherapy, lotion therapy, music and/or nature sounds, and vibrational healing using an ocean drum or paddle drum.
      Perhaps the daughter could offer additional ideas based on her dad’s interests from different times in his life. Try to identify interventions to support Mr. B’s mind, body, and spirit to enhance his quality of life.

      Occupational Therapy

      Guey-Fang (Christine) Jih, PhD, MHE, OTR/L
      Dr. Jih has worked in skilled nursing facilities, home health, acute care, and the academic setting for over 28 years.
      Begin by introducing Mr. B to the role of occupational therapy (OT). Identify his interests and activities using an interest checklist such as the Canadian Occupational Performance Measure (COPM) (available at https://www.thecopm.ca/about/), and assess the severity of his fear of falling via the Falls Efficacy Scale (https://www.sralab.org/rehabilitation-measures/falls-efficacy-scale-international). Ask Mr. B about his goals (short and longer term) and what’s important to him. Modify the treatment modalities to incorporate his goals and meaningful purpose. Perhaps it would be motivating for him to incorporate phone or video calls with his daughter during therapy.
      Progress from “small to big” and from “simple to complex.” The initial emphasis should be on grooming and hygiene in bed, which would then progress to dressing and eventually using the restroom. Use a progression of motivating activities, such as chatting with his daughter while he is in bed. If he is receptive to making more progress, advance to having him sit in a wheelchair and incorporate an activity like a video call to his family. From there, this can be used as motivation to encourage him to increase his participation in any type of physical activity such as marching in place.
      Progress from activities requiring minimal effort to more demanding activities, from in-chair group exercises to standing exercise programs that incorporate breathing techniques. OT can introduce a reacher to maximize Mr. B’s functional reach while he is in bed, helping him build confidence to sit and stand and minimize his fear of falling or overexertion.
      Maintain a flexible approach and incorporate therapy in any environment — from his bed to an outdoor patio — including the time of day that is best for Mr. B. Provide as much positive feedback as possible, and encourage him to assess his progress toward his goals.

      Physical Therapy

      Tonya Haynes
      Ms. Haynes holds a master’s degree from Thomas Jefferson University and has 24 years of experience as a physical therapist working with the geriatric population. She is the director of rehabilitation at Mountain View Care Center in Tucson, AZ.
      As the treating physical therapist, the first thing I would address is Mr. B’s pain management because this seems to be a barrier to his functional mobility. Questions to consider include, Does he request the as-needed doses of tramadol, and how often? Would it be appropriate to switch from as-needed to routine pain medication? Sometimes patients don’t realize (or remember) they have to request pain medications because at the hospital they may have been routinely receiving them.
      Physical therapists can employ a multitude of tools for nonpharmacological pain management, including electrical stimulation, ultrasound, and diathermy. Manual therapy and massage may be indicated to calm down the spasms that are common after a hip surgery. These modalities can support a decreased use of pain medications.
      Deciding which of these techniques would be most effective for Mr. B requires a comprehensive look at his medical history. Using this modality helps address his pain while building a trusting relationship with him. After a few days of treating his pain, the functional components of getting out of bed and ambulation can be added to his program.

      Nurse Practitioner

      Barbara Resnick, PhD, CRNP
      Dr. Resnick is a certified registered nurse practitioner, geriatrics specialist, and a coeditor of this column.
      The first thing I would clarify with the team and his daughter is Mr. B’s capacity and ability to make his own decisions. With a SLUMS score of 27, I anticipate he does have capacity. I would also discuss with the daughter and Mr. B the risks of not engaging in physical activity; the implications of staying in bed are so concerning that, out of caring, we would continue to encourage Mr. B to participate in physical activity at all levels and during all care interactions.
      In fact, I would work with all staff to participate, to never give up on asking, encouraging, and trying to engage Mr. B in bathing, dressing, pushing up in the bed, sitting at the edge, and transferring so he can move up toward ambulation. I would implement motivational interventions including verbal encouragement and reinforcement, goal setting, elimination of unpleasant sensations around an activity (such as getting rid of the pain and scheduling pain medication before any activity), and reminders of his successful completion of activities.
      Dr. Resnick is the Sonya Ziporkin Gershowitz Chair in Gerontology at the University of Maryland School of Nursing in Baltimore. She is also a member of the Editorial Advisory Board for Caring for the Ages.
      Ms. Hector is a clinical educator and professional speaker specializing in clinical operations for the interdisciplinary team, process improvement and statistical theory, risk management and end-of-life care, and palliative care, among other topics. She is a member of the Editorial Advisory Board for Caring for the Ages. She is passionate about nursing homes and supporting staff to care for people in their communities.
      • All acknowledge and recognize how difficult these types of situations are and the importance of balancing what is important to the resident’s, family’s, and staff’s thoughts and feelings.
      • Each discipline approaches this situation a little differently, but there is a consistent desire to try to meet and respect Mr. B’s needs while offering alternative options to minimize behaviors that may ultimately be harmful to his quality of life (e.g., pain from pressure ulcers, deconditioning).
      • The take-home point from the team members is consistent with the old adage: if at first you don’t succeed, try and try again. It is critical to continue to work with Mr. B and encourage him to engage in functional and physical activities at his highest level of ability and willingness.