My HIStalk team mates have already mentioned the sensational news item about a patient being told about a poor prognosis through telemedicine. It was a hot topic in both professional and personal circles this weekend, with reactions from outrage to understanding, so I wanted to weigh in.
Depending on which version of the story you read and who was writing it, the story ranged from “a robot told him he was going to die and they didn’t have any idea before that” to a much better explanation of what actually happened. I’ve seen the video clip, and although certain aspects of it aren’t ideal, it’s often challenging to have these kinds of conversations regardless of how they are held. Some of the challenges we face are unique to current attitudes in the US about technology, medical care, and death.
We’re so used to seeing miraculous recoveries on TV and in the media, whether fictional or not, that we’ve become detached to the realities of what can happen when you go into the hospital. For those of us on the inside, there’s less of a mystery. I’ve seen a healthy, 30-something physician roll onto the labor and delivery unit with her advance directive and healthcare power of attorney in hand, making sure that we understood her wishes because she knew what could happen. The nurses joked about it, but I knew she was serious. It’s not something the average expectant mother thinks about, but it’s a statistical reality, and some of us see the horrors that can happen every day.
I wish more people understood that the hospital is not an episode of “Grey’s Anatomy.” If you wind up in the intensive care unit, there’s a good chance you won’t make it out. And if you do improve, there’s a chance you might not be the same.
We are so focused on being able to do everything and overcome anything that we forget about the realities of age and that fact that you just can’t outrun the statistics no matter how hard you want to. A person of a certain age with underlying chronic conditions who goes into the hospital in respiratory distress has a significant chance of not going home. Our culture is so engrained in “battling” diseases and “the fight” that we push realities to the side. Physicians struggle with being the bearers of bad news, but we don’t do any service to our patients when we are overly optimistic.
For those on the receiving end of bad news, everything is colored by experience. If this is your first time experiencing the impending loss of a family member, you may receive it differently than someone who has been through it before. Whether you’re religious or spiritual and your own beliefs about death influence what you hear. It’s difficult for the care team to know where anyone is in this particular journey, especially with the fragmentation in healthcare today. Often the realities of today don’t include a patient being cared for by their family physician of 30 years at the bedside. There may be emergency physicians, a hospitalist, an intensivist, and multiple specialists. Maybe the patient has that family physician, but they’re hundreds of miles away from home when the unexpected happens. Maybe the patient has a nearby support system, maybe they don’t.
In the first half of the 1900s, people knew what death looked like in real life and they expected it. As an infant, my grandmother almost died of pertussis (whooping cough) and the neighbors who came to give their condolences were shocked that she was still alive. Families often cared for the sick at home and knew what was involved at the end.
In our high-tech age, we’ve medicalized the end of life so much that we forget it’s natural. Atul Gawande’s “Being Mortal: Medicine and What Matters in the End” is a great read in this regard. Different cultures have different feelings about end of life and I have enjoyed learning about different practices. In some communities, the process of dying is addressed with great self-awareness and attention to detail. It’s important for us in the healthcare trenches to remember that no matter how many times we’ve been involved in someone passing, there might not be an easy or obvious way to relate to every patient or family.
I’ve watched dozens of physicians have a similar conversation to what occurred on the video. Essentially, the physician is trying to talk to them about the level of care the patient is receiving and whether they want to focus more on comfort-focused care and symptom relief. Depending on the news account, some family members admit that they “knew this was coming and that he was very sick.” Another said they were just learning that he was gravely ill. One objection was to the technology itself, including the volume of the speaker and its proximity to the patient who had difficulty hearing.
We don’t know the full extent of the situation, whether the family had experience with a video-based consult before, or how the telehealth process was explained to them. We can’t see who else is in the room or at the bedside, but it’s easy for many to pass judgment on it. Even in person there are difficult conversations around this topic, where physicians struggle to find the balance between recommending care that can help and care that might hurt. Families struggle with feelings of giving up versus fighting for life.
This situation creates a tremendous opportunity to have conversations around technology on both professional and personal levels. As someone in healthcare, how did this story make you feel? How does it relate to what your institution might be doing? Are there ways you could be doing things better or otherwise differently? On a personal level, have you talked with family members about their wishes should something happen, whether expected or unexpected? How would you react if a loved one was being cared for by virtual members of the team? How do members of the family value quality vs. quantity of life and how do those beliefs influence medical care choices?
We always talk about assuming positive intent and I don’t think anyone involved in this video consult program intended for a family to be hurt or upset. Sometimes things occur that are out of our control or sometimes mistakes are made, and we can use those experiences to change how we approach things in the future. As “insiders,” we can help educate our families and friends about the realities of what we see day in and day out and how it’s not at all like you see on TV or in the movies. We can start a discussion that will perhaps lead to other conversations that might make it easier on some other family down the line. We can learn about other approaches to death, dying, and intensive medical care and decide whether we want to think about situations in new ways.
As a society, let’s temper our outrage and figure out how we want to do things better.
Email Dr. Jayne.