Hard cases, compassionate care
A spouse's account of care at the Clinical Center
Forward by Dr. James Gilman, NIH Clinical Center CEO
While no one really knows whether or not we are on the backside of the COVID-19 pandemic, we do seem to have a bit of a hiatus—fewer cases, less severe cases, etc., etc. On the off chance that we will not be talking about coronaviruses for a while, it is important that we learn everything we can about what we do and how we do it before too much time passes.
One of the policies put in place for the pandemic allowed and sometimes even encouraged “rooming in” for caregivers for adult patients. The perceptions of these caregivers provide us with a valuable look in the mirror, one that we seldom get.
I recently made the acquaintance of one such caregiver, Marcy Mager. Marcy and I have had discussions by phone and email regarding her husband’s hospital stay and, in particular, his stay in our ICU.
I have found Marcy to be intelligent and perceptive. She is a professional educator, and it is apparent in our discourse. In particular, I have been struck by her ability to separate her observations from the specific persons or personalities of those who cared for her husband.
Many caregivers might make a complaint about a staff member or small group of staff members. Marcy never has done that. She focuses on what was said and done and not who said or did it. This makes her instructions much more generalizable.
In her comments, I can find many, many issues related to care that we do particularly well here in the Clinical Center. However, I can also find important observations that relate to patient care issues that could still need work. I think her observations are worthy of inclusion in this issue of the CC Newsletter.
Observations of a family member of a patient participating in a clinical trial
As an NIH Clinical Center ICU nurse, you care for patients who have extreme needs, who require constant care and attention and whose illnesses often take their lives. Because this is NIH—where the most difficult cases are welcomed, the solutions to the puzzles of medicine are sought and the boundaries of knowledge are expanded—your patients are not only among the neediest in the hospital, but in the entire world.
Imagine it is May 2021 again. In addition to the challenges of your regular work routine, the COVID pandemic looms over everything, adding to the complexity of your tasks and to your own anxieties.
As an ICU nurse this is the framework within which you must care for your patients, even before the impact of the virus. Amid this whirlwind of demands and emotions, you meet a 78-year-old male with non-Hodgkin’s lymphoma, who is part of a clinical trial and reacting negatively to some of the medications. He was admitted with permanent AFib, congestive heart failure, sleep apnea and now extreme diarrhea, which is impacting his heart and his kidneys. This is his third bout with cancer, and at this stage is likely to cause his death.
For the next 12 hours, he is your patient. For 30 years, he is my husband.
You cross the threshold of his room and face him to convey caring and concern. Despite two hearing aids, his severe hearing loss cannot overcome the barrier of your mask, and he cannot hear most of what you say. So, you talk louder, come closer and include me in the conversation, because I can be right at his ear, right at his mouth; I can facilitate the communication.
You learn the details of his needs and implement his treatment, inserting the tubes, drawing the blood, administering the medications. You attend to his well-being, hooking him up to monitors and machines, observing progress and distress, calling for assistance as needed. You make him as comfortable as you can amid the relentless barrage of lights and noise that are endemic to the ICU.
You understand that you cannot cure him, but you seek to establish a connection in these few hours, which will improve his medical and emotional state. You show interest, respect and commitment. And yet, over the course of 10 days and more than two dozen nursing staff at the Clinical Center, there is a wide range in the details of how all of these things are done. Most of you can smile with your eyes and demonstrate a balance of positive energy and gentle touch that clearly show your commitment.
You are able to step out of the shadow of loss, which always hovers around your relationships with patients, and operate in the moment with kindness and focus on this person right here. Many of you have sensitive solutions to the challenges of constant intrusions, disruptions to sleep and the disorientation and delirium they cause.
Your nighttime behaviors are thoughtful. You limit room visits by combining tasks. You control light by facing your laptops and instruments away from the patient. You reduce noise by not talking near the patient, by shutting the door, by whispering when communication is needed.
Some of you have creative ideas about how to build the patient’s spirit and hope. You show humor, share personal stories and insights, arrange to take him outside into the fresh air, back into the world.
And there are those of you who have the ability to see your patient as a whole person. You listen closely to the questions he asks. Your answers are supportive but clear. You understand how what you are doing now fits into his entire treatment. You know that sometimes reassurance and connection might be more helpful than sedation.
I marvel at your ability to find that level of empathy and perseverance. I am struck by how you celebrate small improvements, even as you recognize he won’t survive. You applaud his efforts to stand and walk, make a moment to look at pictures of his grandchildren, become my partner in his care.
It is two years later, and I can still see your faces, still feel your warmth. And, I wonder if we can talk honestly about what helps, what works? Can we share and replicate these skills and talents? Can we lift each other up?
— Marcy Mager
Marcy Mager is a member of the NIH Clinical Center’s Patient Advisory Group.