In modern oncology practice, best care frequently requires patients to manage appointments and follow recommendations given by a multidisciplinary team of medical, surgical, and radiation oncologists as well as pain management experts and proceduralists who have separate offices and records systems. Patients with cancer may also receive advice from spiritual advisors, legal and financial experts, and case managers. Interpreting and following all these recommendations can overwhelm a well patient and prove even more troublesome to those with diminished executive functioning from disease or treatment. For many years, oncologists have advised patients to bring a caregiver to their appointments who can act as a second set of ears. Some medical visits, particularly restaging visits, can be emotionally and cognitively overwhelming for patients. A proactive caregiver who takes notes and asks questions can help a patient recollect the facts afterward. In addition, many patients depend on their caregiver to accurately disseminate their medical history, to consolidate information from multiple providers, and to track and administer medications. Moreover, involved caregivers not only assist the patient but can also facilitate providers' ability to understand patient needs and limitations.
In the age of COVID-19, the medical world has largely cut out caregivers from in-person patient visits by instituting visitor restrictions designed to minimize virus transmission. Similar to most hospitals, our institution has established strict regulations against visitors. Previously, most patients arrived to clinic with a companion or even a crew of supportive friends and family that packed the examination room and sent our staff scrambling to pillage extra chairs from adjacent rooms to accommodate everyone. Now, patients arrive alone.
Dr Alewine's case presentation:
Mr J, a 72-year-old Navy veteran and retired autoworker with progressing metastatic pancreas cancer, visited our Medical Oncology clinic to screen for an experimental therapy trial. A long-term retiree and outdoor enthusiast who engaged in an active lifestyle, Mr J had excellent performance status and an admired golf game that had just won him a community tournament. Mr J completed the complicated screening legwork for the study on his own: after the 250-mile drive to our center, he underwent 1.5 full days of laboratory draws, imaging assessments and provider visits carrying his bags from location to location on campus while his wife waited at a local hotel. His success in navigating this gauntlet on time while wielding just a campus map and an appointment list suggested to our team that Mr J was a largely independent and high-functioning patient.
Mr J returned (alone) several days later to receive a week of inpatient experimental drug therapy. During this time, he was largely confined to his room as infectious risk kept in-hospital patient escapes like the cafeteria, library, and chapel closed. With in-person visitors limited to hospital staff, Mr J's smile would pop out when our team members visited to make their assessments. In the new pandemic-present world, staff provided Mr J's single link to nonvirtual human contact. We smiled too even as handshakes of greeting were replaced with nods from across the room. The usual chat that accompanied symptom assessments also became more concise as we struggled with pressures to limit contact time and remain physically distant to reduce Mr J's exposure to the germs we might unintentionally carry to him. As this inpatient isolation proceeded to its fifth day, team members noted that Mr J's estimation of the date had begun to blur and that his recollection of symptoms had become less precise. Despite his serum sodium creeping down a point each day (a known side effect of the experimental drug), Mr J's other objective assessments remained unchanged. We attributed the minor changes in the clarity of his answers to the up-titration of his narcotic pain medications required to manage his tumor-related pain.
Mr J repeatedly declined offers from the care team to call his wife with updates, or to dial her in during our rounds, saying that he could relay events himself. I spoke to Mrs J for the first time just after discharge. I had called Mr J to report a late lab showing that his serum sodium had further declined. He put the call to speaker phone at my request and then Mrs J took over.
“I'm so glad that we're talking,” she said to me. “I'm not sure how he is supposed to be getting some of these medications. He usually takes care of his pills himself, but he doesn't seem to know either.” After going over his medication list with her and explaining the possible cognitive symptoms of hyponatremia, we said goodbye for the evening, but the connection had been made.
Nevertheless, Mr J returned to us alone for his second treatment cycle. His tumor-related pain was requiring increasing amounts of breakthrough medication. His energy was low since the treatment, and his appetite decreased. In addition, his weight had decreased 4 kg from baseline.
“Should we call your wife and get her on speaker phone?” we asked him.
“No, that's okay. I can tell her about it,” he declined with his usual competent-sounding surety.
Maybe… However, despite normalization of his serum sodium, histories obtained from Mr J and written in draft consultant notes contained multiple gross inaccuracies (later corrected through conversations with our team) as he incorrectly recollected medication doses and schedules and the onset and context of previously documented symptoms. Because Mr J still presented a seemingly cognitively competent face to providers despite his waning faculties, in the absence of Mrs J (excluded from visits she would ordinarily attend by the new visitor restrictions), new providers had difficulty recognizing that Mr J's previously excellent physical and mental status had begun to decline.
Mrs J's first phone call to me came not long after midnight on the evening of his discharge following cycle two inpatient treatment: “I have no thermometer here but he feels hot. He's very confused. He can't find the bathroom in our hotel room.” This call prompted an ambulance trip to the local emergency department, suspension of Mr J's narcotic pain medications, an unremarkable head CT and empiric antibiotics. Of course, the local ED could not permit Mrs J to accompany her husband due to infectious risk from COVID. Instead, she waited at their roadside lodging, fielding multiple phone calls from medical staff needing more history. Mr J's mental status cleared before the antibiotic infusion finished and he was transferred to our hospital. Due to Mr J's evolving mental status an exception to the COVID-era visitor policy was approved, allowing Mrs J to live-in with her husband during this short admission. Her presence in-person facilitated Mr J's care through both her respectful, but vocal corrections to Mr J's incorrect or non-reporting of symptoms and also through the comfort that her familiar presence brought to her husband. Following discharge, it was Mrs J that called our team about his symptoms. She was dispensing his medications to him and monitoring the frequency of his breakthrough narcotic doses. His pain had continued to increase and his appetite to decrease. Restaging scans showed progressing disease. Mr J entered a hospice program and died peacefully at home less than 1 month following his last treatment on our study.
Mr J's story is not unique. The fluid nature of a cancer patient's health status often necessitates involvement of a consistent point person cognizant of the patient's condition who can provide important feedback that the patient may not convey. Because of very valid privacy concerns, it can be difficult to insist that patients put a caregiver on the phone during visits, particularly when the provider has not observed a family's unique social dynamic.
Although our description of Mr J's case emphasizes the consequences of caregiver exclusion as the medical team sees it, we should not forget that these policies also require terminally ill patients to face frightening medical developments without a familiar hand to hold. Medication can relieve symptoms, and medical professionals can provide information and encouragement, but the caregiver is most often a patient's best source of comfort.
In these changing times, best practice evolves quickly. Notably, most hospitals made early exceptions to new visitor exclusion policies to allow at least one parent or guardian to accompany pediatric patients to their medical encounters. Might we extrapolate this policy to include oncology caregivers from the same household? Like guardians of a minor, caregivers should be distinguished from mere visitors. Caregivers are not momentary well-wishers delivering a get-well card but an integral component of a patient's care team. Realistically, how much additional exposure risk does a clinical practice or hospital system absorb by permitting Mr and Mrs J to attend visits together? Considering that they were inhaling and exhaling the same air throughout the 250-mile drive to our clinic in their passenger car, how likely was Mrs J's presence to increase the COVID-19 exposure of medical staff and other patients? In oncology, we spend considerable time considering risk versus benefit. Maybe we should more closely consider the boundary of that divide in our new visitation policies.
DISCLAIMER
This material should not be interpreted as representing the viewpoint of the US Department of Health and Human Services, the National Institutes of Health, or the National Cancer Institute, Center for Cancer Research.
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
Caregiver Exclusion in the Age of COVID: Fighting Cancer With Half the Team
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