Shared decision-making (SDM) in older adults with cancer is a complex endeavor. In addition to the patient’s wishes and beliefs, numerous factors including cognitive decline, frailty, comorbidities, polypharmacy, and sensory impairment greatly influence treatment decision-making. This is particularly challenging when older adults have difficulties making decisions about their medical care. SDM, a process in which the clinician works in collaboration with the patient to make decisions about clinical care that is consistent with the patient’s preferences, goals, and values, is a key element of patient-centered care (Scholl et al., Reference Scholl, Zill and Härter2014; Shickh et al., Reference Shickh, Leventakos and Lewis2023; Zhou et al., Reference Zhou, Acevedo Callejas and Li2023). However, when there is concern about a patient’s cognition or judgment, it is essential to evaluate decision-making capacity (DMC) and may be necessary to rely on patients’ caregivers or previously expressed wishes if patients are unable to demonstrate this.
DMC is an adult patient’s ability to understand and process information about their diagnosis, prognosis, and treatment options. Persons with DMC are able to weigh the relative benefits, burdens, and risks of therapeutic options; manipulate medical information in a manner to make treatment choices aligned with personal values; and communicate a consistent choice regarding the decision (Appelbaum and Grisso Reference Appelbaum and Grisso1988). Importantly, DMC is specific to a particular decision.
Decisional incapacity is often underrecognized in older adults, and the decision to assess capacity varies depending on the clinician and care environment (Gan et al., Reference Gan, Riley and Basting2023; Sessums et al., Reference Sessums, Zembrzuska and Jackson2011). The capacity assessment process must account for the serious consequences of consenting to or refusing treatment and should involve consultation with relevant clinical experts (McFarland et al., Reference McFarland, Blackler and Hlubocky2020). While efforts are being made to standardize DMC assessment practices, the process can be optimized by incorporating the perspectives of clinicians from multiple disciplines that have relevant expertise (Charles et al., Reference Charles, Brémault-Phillips and Pike2021; National Institute for Health and Care Excellence 2018; Seyfried et al., Reference Seyfried, Ryan and Kim2013). We describe the case of an older patient with advanced cancer who presented with a recurrent theme: the difficulties clinicians encounter during SDM, especially when the older adult is cognitively impaired. It illustrates how those difficulties affect the quality of care and may prevent the clinician from paying attention to what matters most to the patient.
Case description
Mr. Jones is an 85-year-old man with hypertension, diabetes mellitus, depression, and unsteady gait. He was diagnosed with rectal cancer involving the anal sphincter. He consulted a colorectal surgeon who recommended an abdominal perineal resection (APR) and chemoradiation. Mr. Jones was told that the APR would result in an irreversible colostomy. His physical examination showed a palpable anal mass. It was otherwise unremarkable.
Mr. Jones lived alone and paid for help with cleaning and meal preparation. He had no children and identified a nephew as his healthcare agent (HCA).
Mr. Jones adamantly refused to consider a colostomy and declined all treatment for his cancer. He remembered his brother struggling with a colostomy for years before he died. Mr. Jones said, “I would rather die than suffer the way my brother did.” He did not attend any follow-up appointments.
Months later, Mr. Jones’s nephew brought him to the emergency department (ED) confused and experiencing abdominal distention, pain, and emesis. Imaging revealed a large bowel obstruction. The ED clinicians determined that he was not able to demonstrate decision-making capacity (DMC) to consent for surgery. They talked with his nephew about the need for an emergent colostomy as a lifesaving procedure versus end-of-life care. The nephew consented to surgery. After a difficult postoperative period, the patient was discharged to a subacute rehabilitation facility.
Discussion
This case illustrates a complicated scenario where the patient had a clear preference and rationale for not accepting curative-intent treatment. When treatment is presented to such a patient, the clinician must address what could happen if treatment is not pursued and record a summary of the discussion in the chart. It is crucial to check understanding of the disease and the available treatment options while exploring what matters most to the patient. It is also an opportunity to talk about end-of-life goals of care (GOC). If there is a concern about the patient’s cognition, he should be evaluated for DMC since it may be necessary to rely on a caregiver. Determining DMC can be challenging and time-consuming (Seyfried et al., Reference Seyfried, Ryan and Kim2013). Oncologists, geriatricians, and/or psychiatrists all may address dementia, mood disorders, and chemotherapy-related cognitive impairment when caring for older adults with cancer, where informed consent for treatment is imperative (Marron et al., Reference Marron, Kyi and Appelbaum2020). Evaluating patients for DMC often requires cross-disciplinary collaboration to provide timely patient-centered care (Moye and Marson Reference Moye and Marson2007).
Mr. Jones presented to an ED with his nephew, who reported a new onset of confusion. It is a must to screen/make a diagnosis of delirium on admission and focus on the identification and management of the underlying medical etiologies. If Mr. Jones could have been stabilized and had periods of clear thinking, those should have been utilized to address his wishes.
Mr. Jones had multiple comorbidities. Therefore, accurate understanding of his functional age and frailty status is critical. Functional age is more useful than chronological age to define aging and a prognostic factor of how well he would withstand the rigors of treatment. Frailty is a risk factor for poor tolerance to surgical stress with potentially devastating consequences such as postoperative complications, discharge to a skilled nursing facility, and poor quality of life (QOL; Fried et al., Reference Fried, Tangen and Walston2001; Makary et al., Reference Makary, Segev and Pronovost2010). It appeared that the preservation of his QOL was what mattered most to Mr. Jones, and a colostomy was incompatible with acceptable QOL for him. His wishes appeared to be consistent over time, and there were no obvious reasons not to respect them.
Cancer-related psychological distress may result in functional decline (Hurria et al., Reference Hurria, Li and Hansen2009). In addition, the lack of social support would make it difficult for him to remain living independently with a colostomy bag to care for. Placement in a rehabilitation facility followed by long-term care would be the most likely postoperative scenario. Is that something Mr. Jones would agree with? Is his nephew considering becoming his caregiver? Is the nephew’s decision based on his own feelings and beliefs? Are there financial incentives at play? Given these many possibilities, involving an interprofessional team would be invaluable.
Consultation with an Ethics Committee should be considered when the patient’s autonomy is compromised, and the HCA makes decisions inconsistent with the patient’s stated wishes. Autonomy is a fundamental principle of bioethics that prioritizes an individual’s right to make informed decisions about their medical care. A person with capacity has an inherent right to self-determination and can decide whether to accept or decline interventions, even life-saving ones. In this case, it was unclear whether Mr. Jones understood the consequences of his decision, even if it meant a shortened lifespan. In hindsight, the surgical team could have used the opportunity of his outpatient consultation to document his GOC by completing state/institution-approved advanced directives (Comer et al., Reference Comer, Fettig and Torke2020). To override Mr. Jones’ previous decision simply because he now lacks DMC is ethically fraught and should not be done without thorough discussion involving the institution’s Ethics Committee.
Optimal communication is essential at all encounters. There was a discrepancy between Mr. Jones’ expressed wishes, and his nephew’s consent to surgery. Communication strategies and skills could be used to help disentangle this situation. Checking the nephew’s understanding of his uncle’s wishes, asking open questions to explore how involved he had been in his uncle’s care and if he had been present for any conversations in which his uncle expressed his desire to decline treatment could be helpful. Clinicians rarely receive training on how to best communicate with older adults and their caregivers. Communication skills training programs for interprofessional clinicians have been shown to help them communicate more effectively (Parker et al., Reference Parker, Alici and Nelson2023; Rosa et al., Reference Rosa, Cannity and Moreno2022).
Conclusion
DMC evaluation is a cornerstone of person-centered care (American Geriatrics Society Expert Panel on Person-Centered Care 2016). An oncology practice built on the foundation of SDM requires a firm understanding of DMC and the deliberate practice of incorporating what matters most to the patient into management decisions. GOC discussions should be an essential and routine part of medical visits. Multidisciplinary discussions and good communication skills are essential to navigating these complex situations and ethical challenges.
Acknowledgments
This work was supported in part by the National Cancer Institute (R25 CA 151899, MPI Parker and Korc) and the Cancer Center Support Grant (CCSG-Core Grant; P30 CA008748; PI Vickers) from the National Cancer institute of the National Institutes of Health.
Author contributions
Study concept – All authors contributed to the concept and design of the manuscript.
Preparation of the manuscript – All authors contributed to the preparation of the manuscript.
Competing interests
No authors report any conflict of interest with this manuscript.
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