Vanishing Health Care Providers Cast Clients Adrift
Personal Perspective: Why does no plan recognize our grief and stability needs?
Posted September 26, 2022 | Reviewed by Gary Drevitch
As COVID ravages the health care system, more of us experience health care providers vanishing. I first encountered this phenomenon after my brain injury. I’d been sent to a naturopathic doctor who specialized in brain injury. They prescribed an intense schedule of fish oil capsules and booked a follow up.
I never saw them again.
They became ill; their clinic staff offered no options. I had to figure out on my own what to do about the fish oil capsules. Cast adrift, I focused on solving my immediate problem. I was a vegetarian; the capsules had increased my pain tremendously. I decided to find a vegetarian version and titrate the dose down to tolerable levels. My affect being pretty much off helped me cope emotionally at the time. But I think it nourished the seed of abandonment by the health care community.
When the same thing happened to me years later with a psychologist, the psychologist told me themself. I went home stunned with no recourse. I never learned whether this important-person-to-me lived or died.
Years later, a psychiatrist who oversaw my treatments, took my calls, and worked on tough problems, but saw me infrequently, retired without me realizing. A while later, I happened to attend the clinic when they dropped in. I didn’t know that would be our last conversation. They received a cancer diagnosis during the pandemic and died. Months later, a reference in an email alerted me to the fact that they may be dead. Shocked, I wondered with horror, How do I ask if someone is dead? I have a longstanding relationship with the clinic, so why did no one tell me? By not telling me, they betrayed our relationship and gave me no opportunity to thank the psychiatrist one last time, no chance to say goodbye.
This year, two physicians have vanished from my life. One died but wanted to keep it private. Learning about their death almost a year after, makes my grief feel out of time. The other physician is...I don’t know where. Are they sick? Dead? I think, They can’t be dead because their secretary would’ve told me. Right? Those who need medication refills don’t know how to get them. I have home audiovisual entrainment and low-intensity laser therapy devices that allow me to keep my treatment regimen going when physicians vanish. People on drugs have no such option.
Why do clinics and health care providers not have automatically triggered plans to inform patients when they suddenly sicken or die? Plans could acknowledge longstanding patients perceive the provider as a close relationship and need a way to adjust or grieve healthily. Why are we patients left in this precarious position?
Mary-Frances O’Connor writes in The Grieving Brain about the neuroscience of how our brains map others’ distance from us in terms of here, now, and close:
“Closeness is a third dimension of how we map where our loved ones are, in addition to mapping where they are on the dimensions of here (space) and now (time)....I believe closeness is understood by the brain in a very similar way to time and space.”
Once upon a time, doctors lived in the community with their patients, socially and professionally. But now we live in a world where health care providers often create artificial barriers to those community-based relationships, while patients remain in traditional authentic relationships. I suspect providers’ closeness dimensions don’t match those of their clients today, as they would have when living in community.
According to O’Connor, “In addition to carrying around wide-ranging virtual maps, another of the marvels of the brain is that it is a remarkably good prediction machine.” Our brains predict where and when we will see our psychiatrists and psychologists, our family physicians, and our brain-injury specialists. We must because we depend on them to look after our health, to answer our questions, and to be there for our appointments and crises. When they vanish, external reality no longer matches our brain maps. O’Connor discusses studies that show this mismatch creates the idea that we drove that person away. In response, the brain drives us to bring them back. This grief response diminishes as external reality, in the form of funeral rituals and social support, provides our brain with evidence that the person has died.
But we can’t do that when our trusted health care provider vanishes and either they have no staff to tell us where they are, or staff who give us such minimal information that we’re left like drowning sailors in a leaky raft in the middle of a Pacific cyclone.
What now? Are they sick, retired, or dead? Who will know us, understand us, refill our prescriptions, and care for our health now? Will they return? When we don’t know if they’re dead, sick, or dealing with family issues, we vacillate from false hope to imagining a dire future. Betrayal roots in our hearts; abandonment cloaks our souls; uncertainty about what is truth and what isn't interferes with brain function and challenges future health-care relationships.
I feel like no clinic, no physician or psychologist, thinks about the profoundly deleterious effect on patients when sickness drives sudden retirement or when death arrives, and they don’t inform us. How can you trust a clinic or provider after they neglect to inform you, leaving you to find out when you call about an appointment? Or when they inform you but hide what's going on so that you can't predict what's next nor grieve?
My former GP retired at an ancient age. His family invited patients to share stories about him. When he died, we were all invited to his funeral service and the burial. Our brains, mapping him as close in the closeness dimension, needed these external rituals just as his family and friends did. His family respected that. We sorrowed together. We patients were gifted healthy grieving. No sense of abandonment, betrayal, mistrust, or denied grief dog our lives from his death.
Copyright ©2022 Shireen Anne Jeejeebhoy