Many health care facilities are enacting policies during this time of COVID-19 that restrict the number of people attending appointments in person. Family care providers are asked to wait outside or drop off the patient for their appointment and come back to pick them up later.
There are, of course, exceptions made for those receiving a new diagnosis or when the patient is not able to attend on his/her own due to physical or other challenges. The fewer people in the building, the lower the chance of exposure of staff or other patients in crowded waiting rooms and elevators; it makes sense. But are there unintended consequences?
A patient of mine reported his frustration and concern with the situation recently. He has recovered well from his surgery for colorectal cancer, but his wife has a host of medical conditions that require frequent visits to internists and other specialists.
He is not allowed to accompany her to any of these visits, and he is thus not fully informed about what is happening with his wife’s condition, progress or lack of it. He used to go with her to all her appointments. And as her primary caregiver, he was aware of what had changed and what the plan of care was moving forward.
But this has now changed. He has asked her to record on her phone all discussions with her various health care providers, but this does not happen with any consistency.
She either forgets or tells him that her phone battery was dead. He has asked her to call him when she sees her physician so that he can listen to the conversation, but this has not happened. He called her while he thought she would be talking to her health care provider, but she lets the call go to voicemail.
He is not certain if this is intentional or if she genuinely forgets. He is frustrated with her and with COVID-19. He fears that something bad will happen to her because he was not aware of what signs to look for.
I met with them as a couple when he was first diagnosed and wanted information about the potential sexual side effects of his treatment. She came with him to all our appointments and struck me as a caring and carefree person. Her usual response when he raised concern was to say to me, “Oh, he worries too much!” with a smile on her face and a quick giggle. He would respond with a sigh and a shrug and continue asking me questions or raising his concerns.
This time, when he told me how worried he was about not attending appointments with her, I asked him if there was something else going on. Why did she forget to record her conversations with her various health care providers? And what about the phone calls that went unanswered when she was at appointments without him? My instinct told me that there is something going on in the relationship that was contributing to the situation.
“She’s become a little forgetful in the past year,” he finally admitted. “She hides it really well, and she’s always been, well, a little flighty maybe…”
He looked embarrassed as if he was telling me something that he shouldn’t.
“Is there something else going on?” I asked gently.
“Well, with my cancer, the attention has been on me for the past two years, and I guess I didn’t really notice that her health has not been what it should be. She has this cardiac condition, and her eyesight is failing, and while I used to know what was going on, these past months — since March, really — I have no clue what she’s been told. She keeps getting new prescriptions, and she won’t let me get rid of the pills that she’s not taking anymore …”
“That must be concerning for you,” I said.
He looked at me and nodded, his eyes filling with tears that he brushed away quickly.
“I know I just have to put my foot down and take them away or put them somewhere out of the way, but it’s really the appointments I’m most worried about! But she’s an adult, and I can’t bring myself to treat her any other way. She’s not a child!”
We talked some more, and I made some suggestions about contacting her health care providers and asking if he could somehow be with her at the appointments. I’m not sure he’ll do that; his desire to respect her independence will likely override any suggestions I made.
He left me with a lot to think about. While I see the real need to protect staff and other patients during this time, what are the consequences for family members who are not allowed to accompany patients to appointments? This pandemic is like a boulder thrown into the lake of our lives, and the ripples are waves that have unintended consequences.
Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.
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