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Saturday, June 13, 2015

Fear and Isolation of a Weak Immune System

by Christian Sinclair

In palliative care, the symptoms we frequently encounter (fatigue, pain, nausea, dyspnea, depression, anxiety) have unique challenges, yet many of us have a comfort and confidence in the availability of therapies and the understanding of the symptom. Recently, I have seen two uncommon symptoms, prolonged isolation and fear as a result of a weak immune system. Frankly I don’t quite have a confident construct to understand and treat these two novel issues. It is not any single case that has stood out, but as I work more in outpatient palliative care in an academic cancer center, these themes of fear and isolation are pronounced and different than the fear and isolation that we may see in patients who are in their last days of life.

For many people undergoing chemotherapy or transplants with anti-rejection medications, they find themselves with prolonged periods of weakened immune systems. Obviously there are more dangerous periods with severe neutropenia (low white blood cells), but it is a new situation (to me, at least) when the immunocompromised state is more chronic, more permanent. I understand the biomedical and infectious issues fine. It is the psyschosocial aspects which have piqued my interest.

It is not uncommon to hear patients say that have cut out their favorite outdoor hobbies, or describe themselves as newly minted introverts. “Church? I’d love to go to church, but it isn’t good for me to be around that many people. I could get sick.” “We had a family reunion, but I only stopped by for a few minutes to say hi to everyone. There were a lot of young kids there with germs.” These are real injuries to quality of life, and there is no medicine that can fix that.

Now of course, not everyone who is chronically immunocompromised feels this way, but I am seeing a new trend for my clinical experience. If I want to do a stand-up job for patients, I feel I need a better understanding about the psychological aspects of infection control. And when I don’t know what to do, I go to the literature!

Looking around PubMed there is not too much about the long-term psychosocial impact of infection precautions. Most papers are focused on hospital based isolation (easier to study probably) compared to long-term self-imposed isolation as a result of being chronically immunocompromised. But let’s see what we can learn.

Prototype for isolation gowns?
As you may have already guessed, people who were placed in isolation in hospitals have been found to have (over multiple studies): lower self-esteem, more anxiety, more depression, more fear, more isolation, less nurse and doctor visits, less time when those clinicians were there, more adverse events, less satisfied with their care. Patients and families also do not understand the reasons for isolation in the hospital setting. (Perhaps we send mixed signals, or do not inform well?). Although in chronic immunosuppression, the reason for isolation is most likely the patient’s own fear of getting any infection.

Otherwise there really is not much published on the psychosocial risk and impacts of chronic immunosuppression. I also looked at some of the HIV/AIDS literature, but much of the psychosocial studies were not about the issue of isolation secondary to being immunocompromised. Even long term quality of life studies for people who have received transplants, focus on the frequency of infections and related hospitalizations when discussion of immunosuppression, not the risks of fear or isolation.

I have many more questions now on this topic, all without great (published) answers. How effective are the various ‘germ-free’ strategies? Do we sometimes go overboard to the detriment of patients? Is contact with other people potentially of more benefit than the risk of an infection? How do we help build resilience and support for people who are feel so isolated (meditation, prayer, FaceTime, Skype, and Frankl’s “Man Search for Meaning” are some ideas)? Does it help to let them see your face at least once before you put on the mask?

So without a lot of good published evidence, I still don’t quite have a good context in which to understand these trends. Hopefully, the patients and families I meet will teach me something. I’m really interested to see if any other palliative care clinicians, oncologists, BMT docs and nurses, or transplant professionals have any good tips or evidence. Also if you are a patient or family member, it would be great to hear your experience dealing with chronic immunosuppression.


Christian Sinclair, MD, FAAHPM is a palliative care physician at the University of Kansas Medical Center in Kansas City, KS and editor of Pallimed. In his free time, he enjoys coming up with nicknames for the new family dog, Spud.

Photo Credit: "Splendid Isolation" by Colin Smith, licensed via Creative Commons
Photo Credit: "Betty Ford's lemon yellow polka dot gown" by Wikimedia Commons, licensed via Public Domain

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