Human-Centric Health Care

Last year, I visited the “Center for Advanced Medicine” at one of New York’s large medical centers. I had noticed a lump on my throat, which my primary-care physician told me was located on my thyroid. I was at the center to get it biopsied. My visit to the clinic offered me an opportunity to reflect on the experiences patients have when they seek medical care in the midst of a stressful situation. This is important, because the reality today is that people with a challenging medical condition must manage both the condition and the considerable complexities of the health care system. I’m interested in how technology can both help a patient manage their condition, and remove or mitigate much of the health system complexity facing the patient.

The Waiting Room

My visit started with my arrival at the reception desk, staffed by someone who wordlessly pointed for me to sign in. I signed in and took my seat in a pleasant enough space, except for giant televisions that were playing cable news. I loathe “ambient media” in public spaces, and I find 24-hour news to be especially problematic. Some of the channels are openly partisan and nasty in their presentation of the “news”, and I prefer not to watch them. This particular waiting room was playing the mostly innocuous CNN, but what I needed and wanted at this point was a quiet environment so that I could remain as calm and unperturbed as possible.

After I sat there for a while, the front desk called me forward to verify some information. Then I was instructed to return to my seat to wait. A few minutes later (now about 20 minutes past my appointment time), a nurse called my name and took me back to an exam area. I thought I was about to have my procedure, but this step was only to collect my weight, temperature, pulse, and blood pressure. After they had finished gathering this data, I was sent back to the waiting area. I noticed that the other patients were moving through this same process. Many were elderly, and some had limited mobility. I’m a fit and healthy person, so going back and forth wasn’t a challenge for me, but for some of my fellow patients, it was less than easy. All of us were being herded through a labyrinth with a course opaque to us, structured to serve those who worked there rather than those who were there to receive care.

Modern health care feels like a labyrinth.

The Procedure

Once I finally made my way into the biopsy room, I found myself between extremes — amazed at the advanced technology available to perform the procedure and stunned by the lack of awareness of me as a human being undergoing the procedure. A thyroid biopsy is done via fine needle aspiration, where a thin needle is used to collect tissue from an area that has abnormal appearance. A pathologist then examines the sample to rule out malignancies. The fine needle procedure is guided by ultrasound to help the physician find the correct spot to obtain the sample. The particular machine for my biopsy used color-coded Doppler ultrasound, which highlighted my arteries and veins in red and blue so the physician performing the procedure could avoid nicking anything important in my neck. The computer scientist in me found this technology *so damn cool!*

Color-coded Doppler ultrasound of the carotid artery (not mine!) [1]

Not so amazing was the bedside manner of the pathologist. Even for a medically informed and fascinated individual like me, lying on a table to get a needle inserted into your neck near an area where you know you have an artery is a disconcerting experience. The physician arrived and, after a curt introduction, quickly prepared. I watched him get ready, and to my horror, I saw him put on gloves, but he did not wash his hands. He may have washed them outside of the room, but he donned gloves in the area where a sink and soap were provided, so not washing his hands really seemed odd. And since I didn’t see him wash his hands, I didn’t know whether or not it had happened. I pondered what to do. Timidly, I decided to say nothing, because he was about to poke me in the throat with a needle.

With my unease mounting, the procedure started. He was biopsying two areas, one with a smaller lump, and one with a larger lump, which was the lump I had originally noticed. The biopsy on the smaller lump was first and went quickly. Then he moved on to the larger lump, which was much closer to the area where I can feel my pulse in my throat, indicating the presence of an artery. He numbed the area and inserted the needle, after which he said, “Don’t move, speak, or swallow.”

Immediately, I felt the need to swallow. People almost always swallow unconsciously. I meditate, so I began to follow my breath and focus on staying still and not swallowing. I inadvertently swallowed near the end of the procedure, and he said, “That’s OK.” It would have been so much easier if he had given me proper warning and told me not to move, speak, or swallow before inserting the needle into my neck.

Yes, this is what they did. [2]

They bandaged me up, examined the tissue under a microscope, and gave me the good news that the tissue was normal. All of this occurred while I was in the exam room, which was so much better than waiting days or weeks for a result. I was relieved and grateful to get a clean report, but I’ve pondered the experience repeatedly since then. I believe that a few simple changes could add clarity and compassion to give the process a basic level of humaneness. With a bit more effort, the process could be truly patient-centric.

Patient-centric care is focused on the patient, rather than labyrinthine processes or technical procedures.

A Wish List

None of the people providing care to me during my visit gave any indication that they understood that having a procedure like mine creates anxiety and stress. The medical team focused exclusively on the processes and procedures, and the reality that these things were happening to a human who was worried about a potentially serious diagnosis didn’t seem to enter their minds. This was an incredibly isolating experience, where the reality of what was happening to me seemed completely missing from the awareness of the other people involved. Had anyone in the team given me a sense that they empathized with my situation, it would have made a huge difference. I’m not talking about a “touchy feely” kind of empathy, but for the team to take actions to address the sources of unnecessary anxiety and frustration in the process. Here is what I wish would have transpired before and during my visit.

Clarity. I wish they had prepared me for what was going to happen, and given me confidence that they were also prepared.

1. I should have received a short explanation of the procedure ahead of time. I could imagine the clinic having an explainer video for common procedures, and having someone walk the patient through the process for less common procedures.

2. I wish they had told me how to manage myself during the procedure before the procedure started. This is essential for all procedures where the patient is awake and able to move.

3. I wanted to know that my physician and other providers were following all medically-required precautions. I should have seen the physician wash his hands, and I should have spoken up when I didn’t.

Compassion. I wish they had shown me that they cared about me as a human being, including my general physical and mental condition, rather than focusing solely on the symptoms or conditions that caused my visit.

1. I would have appreciated being registered by people who didn’t transmit the vibe that my presence was really interfering with their day.

2. I would have preferred that they had an area that was quiet and media free for those of us who wanted it.

3. I wanted a care process designed to reassure and calm. Instead, I was called forward three times, each time feeling a bit more dread and thinking, “Oh God, here it comes!” The current intake process almost seems designed to ramp up anxiety.

A Patient-Centric Experience. Donald M. Berwick, former president of the Institute for Healthcare Improvement, believes he is taking an extreme position when he defines patient-centric care as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.” [3] To paraphrase, the patient should be the center of control for everything that happens to her in the course of receiving health care.

The clarity and compassion criteria that I describe above take us part way toward the goal of patient-centric care, providing transparency, respect, and dignity. What is still required is individualization, recognition, and choice. Offering these qualities means that my values, needs, and preferences must be primary factors that guide the delivery of care. [4]

What would this look like? In this case it is as simple as asking and respecting how I wanted to hear about the results of my biopsy. Did I want to receive the news alone? (I didn’t want to, but I did.) Did I want my husband to be present? (I did, but he wasn’t.) I was not asked whether I had anyone with me who I would like to present when we discussed the results. If the news hadn’t been good, the physician could ask whether I wanted to discuss next steps now or have a follow-up conversation after I took some time to digest the diagnosis. Such an approach is simple to implement, but it has profound effects. The patient is seen as fully human, and he has agency and control in his own care.

Where’s the Tech?

Why is a health technology CEO writing a somewhat lengthy rumination on his experience of a procedure at a medical center? It is because I believe we are in danger of making the same mistakes with our technology “user experience” that the clinic has made with its physical “user experience.”

Much of the technology people are developing today views the patient as a “user” whose job is to perform a set of actions in service of that technology and its goals. In pursuit of encouraging a particular behavior, or obtaining a given set of data, such technology asks the patient to perform activities and actions that he may not be interested in or understand. A telltale sign of this flawed approach is language about getting patients to engage with the technology, rather than the more human-centric view of making the technology a catalyst to help patients engage with their health.

Health care organizations have a choice to make. Do they want to add one more set of processes (under the heading of “patient engagement”) to an overly-complex and confusing system, or do they want to change the game? It is possible to build technology that helps patients learn about their conditions and options, enables them to identify goals that are meaningful and realistic for their particular situation and preferences, and offers them support in the process of taking action to achieve those goals.

The technology we’re developing at Medaptive Health seeks to incorporate patient preferences, needs, and values into the heart of the engagement process. We’re doing this because of the central purpose of our company: to create compassionate technology that helps people facing chronic and challenging conditions be in control of their own care.

[1] Medical color Doppler of common carotid artery By Daniel W. Rickey 2006. Article on wikipedia, and licensed under CC BY-SA 2.5

[2] Image from YouTube video on Fine Needle Aspiration of the Thyroid.

[3] Berwick, DM. What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist. Health Affairs. 2009;28(4) w555-w565.

[4] Institute of Medicine. “Crossing the Quality Chasm: A New Health System for the 21st Century”. March 1, 2001.