Forward by Dr. James Gilman, NIH Clinical Center CEO
This is the second installment of Marcy Mager's observations about the processes and procedures used in the Clinical Center to provide care to patients who are severely ill.
Just as a reminder, Marcy writes from the perspective of a care giver "rooming in" with her husband-patient in the ICU during the COVID-19 pandemic, a unique perspective that we should not neglect. She only writes after making every attempt to understand her observations. She writes as a relative novice to hospitals and hospital operations but she is articulate and possesses more than enough critical thinking skills to warrant careful consideration to what she has to say.
This installment deals primarily with communications, good and bad, with physicians.
Marcy is at work on a third piece with Dr. Jordan which will address issues more relevant to CCND. When Dr. Mary Fay gave CC Grand Rounds during Simulation Week, she addressed the conundrum of having senior faculty in the simulation laboratory who have a litany of significant contributions in their fields. Her advice "we are all here in the sim lab to get one percent better at what we do" applies to novices and experts alike.
By carefully reading Marcy's work we might even do better than one percent.
Keeping a patient and their family informed during treatment is a clear goal at the NIH Clinical Center, universally accepted and expected across the health field. They need to understand the flow of communication among the patient's treatment providers. Who meets to discuss the needs and progress, and when does that happen? How and when does the family receive that information? Who within the team makes decisions? How does the family provide input and to whom? Without clarity in these procedures the family is likely to experience confusion, frustration, worry and fear.
Effective, timely communication is one of the great challenges of life, never more essential than when addressing complex and urgent medical needs in a seriously ill patient.
In January 2021, my husband's Non-Hodgkins Lymphoma recurred. Now, at 78, with heart ailments and a compromised immune system, his prognosis was not as good as during his earlier bout with the disease, when he was younger and stronger. We spoke with our oncologist in terms of months.
In an effort to lengthen the time we had and contribute to knowledge of the field, we joined a clinical trial at NIH. Our intervention was the VIPOR protocol, our team was knowledgeable, thorough, enthusiastic and came with two years of incredibly successful results. Despite the challenges of gaining entry and maintaining the rigors of the treatment, which started in April 2021, we were in and fully committed.
Unfortunately, in less than 10 days it was clear that David was in distress, with severe fatigue, dizziness, nausea and increasingly serious diarrhea. Within two days of this decline he was admitted as an inpatient. For two more days we continued the treatment, even as his symptoms worsened. On the morning of that second day, despite the request of our lymphoma team to continue the medications, David decided to stop. That evening, when his symptoms became life-threatening, and a Code Blue was called, we went into the ICU.
A couple of overlapping circumstances made our experience somewhat unusual. First, it was the middle of the Covid-19 pandemic, and the most rigorous health and sanitary restrictions were in place in terms of masking, gowning, gloving, testing, visitation, access to the building and approach to patients. All of this plus the very high rate of vaccination among NIH staff gave us a sense of reassurance and protection. It also added to the challenges of operating within this multi-layered and newly shifting system.
Second, and even more unusual, was the fact that I was given permission to room in with David in the ICU. With his severe hearing loss despite two hearing aids, the masking and distancing in effect made it impossible for him to hear staff and communicate with them. So, we consented to the transfer into ICU with the stipulation I would be with him continuously. This position ultimately provided a unique perspective.
And here is what I learned. When patients enter the world of ICU, they are really three people. They are the patient of the ICU team, which has priority in providing treatment and making decisions because of the intensity and immediacy of the disease complications. This team does not know the patient as a person at all. They assess and understand his medical needs. Their goal is to use the expertise of their training and experience to resolve the issues that brought him there. They use a rotating cadre of highly trained ICU staff and an expanse of hospital-wide resources and personnel to do so.
While the patient is in the hands of the ICU staff, he also remains the patient of the clinical trial team, with whom he has been working, in our case the lymphoma team. This group knows some things about the patient and has an established relationship with him and his family. They are experts in his primary disease and their goal is the successful treatment of that illness.
Finally, the patient is a whole person, with an entire life, which contains a vast range of experiences, activities, accomplishments, people and goals. And the only ones who know all this are a very small team, most likely one or a few family members. In our case it was me, his wife and caretaker. In this time of urgency and existential demands, the team with the greatest medical responsibilities have known the patient for the least amount of time, sometimes mere minutes.
The team with the next level of input and medical responsibility has known him for months. The team with the no medical training has known the patient for years and therefore knows him best. Based on my 10 days in which these three spheres needed to operate jointly, I saw that the key to a successful outcome for the patient is not merely treatment, but effective communication among these three entities about that treatment.
While I expect all teams within NIH embrace the goal of open and productive communication to achieve the best medical and care outcomes, attaining that ideal is challenging.
The difficulties that the ICU faces to fulfill that goal are among the most stringent in the entire Institute. Here the players change frequently. During our time there, for example, nurses alternated at every shift, attending physicians rotated every few days, doctors who represented involved departments, such as cardiology, hematology and nephrology changed according to their daily schedules, therapists from speech and physical therapy were present or not depending on their immediate tasks. Others with less consistent roles from psychiatry to nutrition had input in varying degrees. This extensive group met every morning and afternoon during rounds outside David's room, with the attending in charge.
The lymphoma team, a much smaller group, all of whom we had met, often had a representative at rounds, but their role as lymphoma specialists had little bearing on the discussion. Theoretically, the information and decisions shared and known by all these practitioners should have been synthesized and communicated to the patient or family, at least on a daily basis. That's not easy to affect and in our case it did not happen. We got some information, sometimes, from various sources, with no clear way to get questions answered or provide input.
Since I found no routine, consistent, complete way of receiving information about my husband's care and treatment, his needs and progress, and I saw the discussion during rounds, conducted right outside our door, with everyone present, at the same time every day, I thought, "This is how I find out." So, I inserted myself into the meetings, listened intently, took notes, looked things up and asked questions.
Initially, team members seemed surprised to see me but accepted my presence and my inquiries. Pretty soon I realized that each person there knew an extraordinary amount about some things. But no one knew everything, and no one knew David. Only I knew him and only I experienced what happened all day and night, every day and night.
I knew any and all of the times he was upset, agitated, delirious. Were there patterns, precipitating events? Only I knew the toll that repeated unsuccessful attempts to control the diarrhea took on his emotional well-being. Only I heard him ready to give up with the words "I would rather die." Only I saw that every time he was medicated at night for agitation he could not function and participate in physical therapy the next morning.
When I realized that I knew things that the team needed to hear, I not only asked questions, but I also provided input, clear information, insights, requests for help and even an occasional demand. Medications were changed and reduced. David was taken out into the garden, IV's and all, to allow the air and sun to work their restorative powers. Sometimes simple things, small changes made a difference.
I understand that not every caretaker wants to know the details, that many are more comfortable having medical personnel make the decisions, that not all families want the active role I sought. But I submit that every family can and should understand what is happening to their loved one.
Every family should have an explanation of how communication works here, what to expect, who will help if those expectations are not met. Every family should be able to participate in the process of discussing and deciding upon treatment if they so choose. I believe that the best outcomes and the highest level of satisfaction will be accomplished when families participate at whatever level they seek.
Finally, I am sure that my husband's needs would have been met better and sooner if I had been effectively and routinely communicating with his team right from the beginning.
If we expect a family to have all the information they require to accept, reject, question and add to whatever the ICU team or any of our teams propose, and if we want them to be able to provide meaningful input and to advocate when needed, then we need to be sure there is a communication system in place which facilitates that, and that it is used. I whole heartedly expect we can achieve that.
Read Mager's previous essay.
- Marcy Mager