Mrs. R is an 89-year-old resident with a history of schizophrenia, insulin-dependent diabetes, hypertension, osteoarthritis, osteopenia, vascular dementia, and iron deficiency anemia (underlying cause unknown). She had a hip fracture two years ago and has had a right total hip replacement. She moved into the nursing home after an acute hospital admission for increased confusion and delusional ideation with distorted body image. She believes that her feet and legs are absent and that she cannot walk.
At home, she had stopped taking her prescribed olanzapine and was adamant she did not need it. During her hospital stay, the olanzapine was started again at 10 mg at bedtime. Her other medications include enoxaparin (Lovenox) for prophylaxis; aspirin at 81 mg for prophylaxis; lisinopril at 5 mg by mouth daily for hypertension, ferrous sulfate at 325 mg by mouth daily for replacement, and sliding-scale insulin (Levemir and Novolog) four times a day for diabetes.
Despite her belief that she has no legs and cannot walk, Mrs. R engages with therapy for exercise. She self-propels her wheelchair throughout the facility. She regularly declines insulin, saying that it gives her diarrhea, but she takes her other medications. She declines working with the dietician and continues to eat concentrated sweets. Her blood sugar levels are erratic, and her hemoglobin A1C was 9.8.
Mrs. R has lost ten pounds over the past six months, and her body mass index is 19. Her recent laboratory values showed normal electrolytes and kidney function: blood urea nitrogen, 23 mg/dL; creatinine, 0.86 mg/dL; sodium, 140 mmol/L; and potassium, 4.3 mmol/L. She has stable anemia with hemoglobin of 9.8 g/dL, hematocrit of 32.3%, white blood cell count of 9.2 K/μL, and a thyroid-stimulating hormone level of 1.79 mIU/L.
Cognitively she scored a 21 on the Montreal Cognitive Assessment (MOCA). Mrs. R generally declines assistance with personal care; although she maintains relative independence for bathing and dressing, she is looking increasingly unkempt. Her wig is often askew, and she repeatedly wears the same clothes. Mrs. R has a local niece who is her proxy and a nephew who lives in California and visits once a year. The interdisciplinary team (IDT) is preparing for a care conference with the niece to discuss Mrs. R’s resistance to care and their treatment recommendations at this point in time.
Michele Bellantoni, MD, CMD
Dr. Bellantoni is an associate professor in the Department of Medicine at the Johns Hopkins University School of Medicine. She is also the clinical director of the Division of Geriatric Medicine and Gerontology, and medical director of the Specialty Hospital Programs at Johns Hopkins Bayview Medical Center.
As a medical provider, I would consider management of Mrs. R’s chronic conditions in the context of goals of care while working with the mental health provider on managing psychosis with dementia. Although her niece is referenced as the proxy decision-maker, I would assess Mrs. R’s decision-making capacity. Nursing home providers often become the first to formally complete the assessment for medical decision-making capacity after an acute hospitalization and then turn to the appropriate surrogate decision-makers, always including the resident as is possible based on the cognitive status. Although this resident has fixed false beliefs regarding her ability to walk, she may have the ability to understand the causes of her iron deficiency anemia and provide her input on whether she is willing to undergo further evaluation for malignancy, if appropriate.
With respect to the medical management of her chronic medical conditions, I would stress the importance of deprescribing. Regarding her diabetes mellitus, I would consider whether her diabetes could be managed with oral agents instead of insulin, given her refusals to take insulin and her weight loss. A serum c-peptide that is below normal range would confirm whether insulin therapy is needed, though her goals of care may be to accept an elevated hemoglobin A1C and limit insulin to nightly long-acting insulin without mealtime coverage.
Though she declines input from the nutritionist, the nutritionist can advise the staff on low-sugar snack alternatives. Although she has been started on an iron supplement, I would confirm that her iron deficiency anemia diagnosis was based on appropriate laboratory studies and revisit this evaluation in preparing for the goals of care discussion.
Uncontrolled diabetes and inadequate oral intake in the setting of psychosis and dementia can contribute to unplanned weight loss, but the goals of care discussion may require vetting the scenario of iron deficiency due to occult gastrointestinal blood loss from a malignancy. Conversely, bleeding from hemorrhoids may be a treatable benign contributor to anemia, exacerbated by the low-molecular-weight heparin (enoxaparin) and aspirin cotherapy. The long-term low-molecular-weight heparin treatment should be reevaluated, particularly if she has no history of thromboembolic conditions.
Nicole Brandt, PharmD, MBA
Dr. Brandt is a professor and the executive director of the Lamy Center on Drug Therapy and Aging at the University of Maryland School of Pharmacy.
In addition to Dr. Bellantoni’s fantastic assessment regarding pharmacologic management of Mrs. R’s medical problems, I would add additional medication-related points.
Diabetes management: Currently she is regularly refusing insulin and eating poorly, and her blood sugar level is erratic and her HgA1C elevated. This may all be further complicated by the metabolic impact of olanzapine. I would recommend stopping the insulin and placing her on oral agents. Her kidney function is normal, so agents such as dipeptidyl peptidase 4 (DPP-4) inhibitors (e.g., Sitagliptin) may be an option or possibly metformin.
History of schizophrenia: I would recommend a further exploration of her target symptoms and whether she needs to remain on an antipsychotic. Olanzapine may not be the preferred agent due to its anticholinergic side effects as well as its noted metabolic adverse effects.
Unclear indication for use: If Mrs. R truly needs iron, I would recommend reducing this to three times a week to help with the potential implications for her bowels. I would further recommend stopping the enoxaparin (Lovenox), given the risk of bleeding and no evidence of a high risk for a blood clot.
Director of Nursing
Judi Kulus, MSN, MAT, RN, NHA
Ms. Kulus is chief nursing executive at Lantis Enterprises.
A primary goal for nursing is to assist the IDT in supporting Mrs. R’s quality of life. Nursing should consult with the dietician and encourage optimal food choices, focusing on foods that enhance her caloric intake while minimizing her blood sugar imbalances. Nursing should track her intake to evaluate whether the nutritional value and caloric intake are adequate to improve or maintain her weight while also encouraging low sugar and carbohydrate options.
Nursing also needs to monitor her bowel movements to watch for diarrhea, constipation, and bowel motility. Nursing staff can help with her range of motion and continue to encourage ambulation. Creatively working to encourage large muscle movements to avoid muscle wasting is essential.
Finally, nursing should be tracking the quality of sleep she gets each night. Poor sleep hygiene can adversely affect mood, psychosis, and participation during daytime hours.
Paige Hector, LMSW
Ms. Hector is a social work expert, clinical educator, and profession speaker specializing in clinical operations for the interdisciplinary team. She is coeditor of this column. Melanie Sears, RN, MBA, PhD, also offered insight into this section. Dr. Sears is a Nonviolent Communication (NVC) trainer and author of Humanizing Health Care: Creating Cultures of Compassion With Nonviolent Communication (PuddleDancer Press, 2010).
Although the MOCA score indicates mild impairment, I would facilitate a thorough capacity assessment to determine Mrs. R’s understanding of her medical condition and treatment recommendations. To uphold person-centered care and better understand her perspective and needs, I would ask questions using the principles of nonviolent communication, which emphasize feelings associated with needs. For example, “Do you feel irritated and wish living here were easier?” or “Would you like the freedom to enjoy your life and not be pressed to do anything?” Her answers will offer insight into what matters to her, what she is feeling, and what needs may or may not be met.
Before meeting with the family, I would facilitate a team meeting to discuss how to balance resident rights (e.g., self-determination, to refuse care, informed consent, and to take risks) and facility responsibility (to inform of risks, assess capacity, and identify alternatives for safer choices). Within the traditional medical model, we tend to focus on potential negative outcomes for quality-of-care issues and may not consider the positive consequences of honoring choices and preferences that impact quality of life. The social work documentation would reflect conversations about risks and benefits of care and the right to refuse with specific quotations from Mrs. R and her family, capacity determination, consideration of resident rights, all attempts to make treatment and the situation more agreeable for her, all efforts at education, strategies tried and failed, and care and services that were accepted.
An important consideration in this scenario is how the staff feels and what they need to successfully care for Mrs. R, especially given what may be perceived as a frustrating situation when she declines care, has delusions, or makes choices that can have a negative impact on her health. Do they fear repercussions if Mrs. R has an adverse reaction to not taking her insulin? Do they feel exasperated when she insists that she doesn’t have legs and won’t walk? Do they feel sad because they believe her dignity is not being upheld when her wig is askew and she wears soiled clothing?
In the family meeting, I would use a similar approach to determine the niece and nephew’s understanding of the situation, their feelings, and their needs. Do they feel concerned about their aunt’s choices, and would they like her to follow the treatment plan? Are they frustrated and need more understanding about what staff can and cannot do in this situation? Do they feel at ease with their aunt making her own choices, even if they may result in harm, because they value her right to make her own decisions? We could also discuss strategies to help preserve her dignity by ensuring her wig is affixed properly and that she wears clean clothing each day. Depending on what Mrs. R and the family share in terms of the goals of care, it may be appropriate to discuss a hospice referral.
Lea Watson, MD, MPH
Dr. Watson is a geriatric psychiatrist and leader in safe prescribing practices. Her job is helping interdisciplinary teams integrate and optimize behavioral health care in nursing homes.
From the medical and psychiatric perspective, it is important to consider realistic goals of care and relative life expectancy before considering potential interventions. Mrs. R is 89 years old, has a moderate stage of dementia on top of a lifelong major mental illness, and has significant vascular disease. This makes her a high risk for delirium and further medical decline regardless of interventions.
Given Mrs. R’s unstable diabetes, there may be a better choice of antipsychotic because olanzapine is disproportionately associated with the metabolic syndrome and worsened diabetes. Getting a history on her previous drug trials will be important to see if another atypical antipsychotic might work for her. Whether her joy of eating outweighs the risks of diabetes at this point should be determined. I would consider discontinuing the insulin and optimizing her oral medications for diabetes. Forcing the administration of insulin is not an option. Perhaps it is time to shift to a palliative approach and discuss the efficacy of future hospitalizations.
Her “refusal of care” should be examined with the ABC approach: A, antecedent – what happens right before? Is she given enough time and privacy? B, what exactly is the behavior being labeled as “refusal”? Is she in pain or frightened by a delusion? And C, what is the consequence of her refusal? Does she get to go back to her preferred activity, reinforcing her behavior? Is she offered alternatives about her personal care? Can the staff think of ways to incentivize her cooperation, such as favorite foods or activities?
Making a solid attempt to optimize her antipsychotic before shifting gears is the best first step, given her obvious psychosis. But understanding what matters to her quality of life is the essential issue, even if it may hasten her death.
Diane Mockbee, BS, AC-BC
Ms. Mockbee is an Activity Consultant/Educator – Board Certified through the National Association of Activity Professionals 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.
Mrs. R may be experiencing a fear of falling, given her prior hip fracture. The activities staff should collaborate with the IDT to help manage the schizophrenia and vascular dementia. When she exhibits delusional ideation, the activities staff could try to engage her in a different topic. One strategy to consider trying is to remove her soiled clothing at night and replace it with clean items for her to wear the next day.
During activities and throughout the day, the activities staff could offer healthy snacks (e.g., fresh fruits and vegetables with dip) and encourage the family to bring her healthy snacks. During mealtimes, Mrs. R should be checked to ensure she is not eating other resident’s desserts. If there are vending machines in the facility, the staff could discuss whether limiting her funds to purchase those items would be an appropriate strategy.
The activities staff could also engage Mrs. R in physical activities such as beach ball soccer while listening to invigorating music. Wheelchair dancing is another great activity to optimize movement. Mentally stimulating activities are also important, including games like Penny Ante, Apples to Apples, 5 Second Rule, trivia games, and Bingo.
Tonya Haynes, MSPT
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.
Physical therapy would work on Mrs. R’s awareness of her lower body by helping her stand with assistance in the parallel bars. Often when patients can bear weight through both lower extremities, awareness of these limbs will be increased.
Occupational therapy would focus on her activities of daily living and help to increase her body awareness and improve her hygiene. Occupational therapy can also contribute to a psychological assessment to identify strategies to support her quality of life.
Speech therapy could contribute to an assessment of her weight loss and a cognitive evaluation, given the low MOCA score. A speech therapist can suggest treatment to assist with orienting Mrs. R to areas of concern and help staff and the family with strategies to assist with her care.
Consider medication changes, particularly with regard to the antipsychotic use and diabetes management.
Use principles of nonviolent communication to better understand everyone’s needs and associated feelings.
Educate staff and family to provide consistent behavioral interventions, particularly regarding the management of delusions.
Assess her cognitive status to determine the extent of her decision-making capacity for medical issues and lifestyle choices.
Implement interventions to optimize her dignity around personal hygiene.
Encourage participation in physical, occupational, and speech therapy.
Communicate consistently so the staff can efficiently use their time to partner with Mrs. R to uphold her care plan.
Rebecca Myrowitz, MHS, RDN, LDN, CSOWM, CPH
Ms. Myrowitz is a clinical dietitian nutritionist who serves in a leadership role in the CCRC Roland Park Place.
For Mrs. R, a big concern is her weight loss. In older adults, unintentional weight loss is associated with increased morbidity and mortality. Mrs. R is likely malnourished, given her weight loss as well as her low body mass index. Because she tends to prefer sweeter items, she would likely accept a carbohydrate-controlled oral nutritional supplement, which will help to provide needed calories to prevent further weight decline.
Since Mrs. R was not receptive to discussions with the dietician, it may be helpful for the dietician to focus on what Mrs. R can add into her diet as opposed to restricting her choices. They can discuss calorie-dense foods to help stabilize her weight, keeping in mind Mrs. R’s preferences. There may also be alternative low-sugar desserts or smaller portion regular desserts that Mrs. R is open to trying. The dietitian should keep in close communication with the team about Mrs. R’s meal patterns; the clinicians may choose to have a different diabetes medication regimen, given that Mrs. R eats concentrated sweets and does not take her insulin.
In the discussion with the family, getting clarity on the goals of care for Mrs. R will be helpful in understanding the next steps. For instance, perhaps the family prefers the care be more palliative, in which case the staff would provide foods that give comfort as opposed to attempting stricter control.
Mrs. R’s scenario presents the team with a number of complex issues and is reflective of the amount of time and energy needed to ensure exemplary team communication and coordination. The IDT needs consistency with the approaches to optimize Mrs. R’s care and to manage their time. The team agrees about clarifying Mrs. R’s capacity while optimally managing medical diagnoses and symptoms to increase her comfort. A major focus of care would be deprescribing or represcribing more appropriate treatments, behavioral interventions, and dietary interventions that enhance her quality of life and optimize her health.
Dr. Resnick and Ms. Hector are members of the Editorial Advisory Board for Caring for the Ages.