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NHA News Center

Doctor-Turned-Patient Shows the Value in Being Your Own Healthcare Advocate

Posted by Stefanie Voth on July 2018

Article originally featured in access™ 2018, volume II

Contributors: Dr. Rana Awdish, MD

Dr-patient

Sometimes all it takes is one moment. One singular space in time to completely turn your life upside-down.

Dr. Rana Awdish completed her medical training at Wayne State in 2002. She then completed her residency at Mount Sinai Beth Israel in New York and went on to a fellowship training at Henry Ford Hospital. She had been serving patients for six years and was in the final day of her fellowship when one unfathomable instant changed everything.

A tumor in her liver ruptured ... within two hours she was going into multisystem organ failure and losing the child she had carried for seven months.

During this critical time, the way she was treated shocked her. She couldn’t believe what the doctors and care providers said about her health. It was as if she wasn’t in the room. At one point, she heard them say, “Guys! She’s circling the drain here!” Can you imagine hearing your life being put into those terms?

For the next six months, she would recover under the care of others who were similar to who she was before becoming a patient. And what she learned through her journey on the other side was that we—the medical community—are failing our patients.

“That immediate transposition, from critical care physician to dying patient, made visible to me the things I hadn’t been able to see,” Dr. Awdish says. “I saw things about us, physicians and other medical providers, that I might not have wanted to see.”

Since transitioning back from patient to caregiver once again, she’s made some changes to her approach. She currently serves as the Director of the Pulmonary Hypertension Program at Henry Ford Hospital and was recently named Medical Director of Care Experience for the entire Health System. Dr. Awdish’s strives to improve the patient experience across the system and speak on patient advocacy at healthcare venues around the country.

We had the opportunity to sit down with Dr. Awdish about what she learned through her tragedy, and what she hopes will change in the medical community moving forward.

A Commonality Among Patients

“As a patient I felt completely disempowered. I realized that as a physician in my own institution I was, at least in theory, an empowered minority. I was someone who had a voice, some measure of authority and personal agency. Yet, as a patient, I didn’t feel at all empowered to be vocal about my needs or fears. I thought about how voiceless you become in many ways just through illness. And, perhaps more importantly, I realized that, if I felt that way, then the experience was far more common than I had understood it to be.

Once I framed it that way for myself, I felt a responsibility to admit the ways in which my own system had in many ways failed me because, if it was failing me, then it was bound to be failing others. What about people who don’t have the medical vocabulary or the foundation of knowledge about what is going on in their body? What about those who don’t know the people in the room or the roles they are meant to play? Medicine is a black box for so many.”

Systems Have Disincentivized Human Connection  

“It is an unfortunate truth that we disembody doctors and expect them to somehow transcend that handicap and be present in their bodies, empathic and connected. Physicians who have had to learn to disengage from their own emotions to function naturally divert their gaze around the emotions in the room. And not being able to tend to your patients’ emotions, not feeling like a healer can be incredibly isolating. The system is configured to produce a predictable product, and the product is then tasked with roles it is not trained to manage. We then place people in dysfunctional systems, systems that have disincentivized human interaction.

I had to reexamine how I could be an instrument of healing in the way my patients needed me to be. I found a humility there, in being present for my patients, honoring their strength, asking generous questions, learning their fears.”

Patients need us to enter the darkness

“I had to reimagine what kind of physician I would be when I returned to medicine. I had to unlearn. I had to reexamine how I could be an instrument of healing in the way my patients needed me to be. I found a humility there, in being present for my patients, honoring their strength, asking generous questions, learning their fears. I found inhabiting the role of humble Sherpa felt much more authentic and right to me than any sort of perceived authority. I knew the path, through sickness, and I could map it, warn them of pitfalls and the traps. The thing is, I knew all of those things before too. I just didn’t know how much our patients needed us to light their way, and in turn how much we needed them.

So it may sound strange to LEAN IN to the suffering, but that’s exactly what we need to do. With all of the conflicting missions facing physicians it can be easy to abdicate the ones that feel ‘additional’ or ‘burdensome’ like building relationships and tending to emotion. But that is where the magic happens. That’s where we find our purpose.

I didn’t know that by spending time in the dark spaces with them, that it would deepen our relationship and that it would be there that I could truly participate in their healing process. That they would let me into a far more cohesive and trusting relationship, one that would open channels of compassion and empathy that were reciprocal. That bidirectional transfer of knowledge is a form of caring. That in serving them in their time of greatest need, we would each help the other find meaning and purpose in the midst of suffering. My patients held the answer to the question of purpose and resilience. But it wasn’t where I was expecting it to be, it was in the darkness.”

As patients, we should advocate for ourselves

Bring a friend

Consider bringing someone with you as an extra pair of ears for especially high-stakes appointments. Give them a task beforehand, and be explicit about your needs or expectations: "It will help me if you write down as much as possible about what the doctor says so I can read it later if I forget." Or, "I need you to be sure I remember to ask this one particular question, so if I don’t, please ask for me."

Make a list.

Ensure you make the most of your visit by writing down your questions, concerns, and any of the issues you hope to be addressed well before your visit. Remember in school when you were taught to brainstorm—not to filter your thoughts but just write? Do that, then sit back and look at what you’ve written. What stands out to you as important? What questions can be asked of other members of the care team, perhaps the nurse? What are the things you might be afraid to ask? Reflect on your answers and then start a new list, prioritizing each item, and determine which items must be addressed in order to feel the visit was effective.

State your fears.

If you are concerned about something and feel it isn’t coming across or that your concerns are being minimized, be deliberate and direct. For example, tell the doctor, “I am worried that this pain represents something serious, like a tumor.” Fears left silent will fester and feed on themselves. Fears expressed can be calmed.
 

Restate for clarity.

If you are unsure of something, ask about it. If the physician lapses into medical jargon, try saying, “Can I try this in my own words so I make sure I understand?” Or rephrase what you hear: “What I hear you saying is . . . is that right?” This allows the doctor to understand how effective their communication has been and where gaps remain.

Find your community.

This may mean joining a local patient support group or (if you suffer from a rare disease) an online forum that is supported by a national organization. Physicians, find out about the support system your patient relies upon for help. Is it a family member or a neighbor who drops in to check on your patient? Are there community services in the area that you could engage to fill the spaces between visits? It is only by building a community that is engaged and active that we can hope to effect true change.

Unlikely heroes make all the difference

“There is so much each of us can do, regardless of our role on the team. Inspiring confidence in our patients, seeing their suffering and attending to it on a very human level is so meaningful. During my hospitalization, I found some unlikely heroes, like the transporters. One gentleman who took me to radiology heard me break down when I was asked about my baby, whose little wristband was still attached to my chart. He took it upon himself to tell his colleagues and others not to ask about her. Radiology techs started to throw a lead blanket over my sleeping husband when they would come into the room to take a portable X-ray. They figured out on their own it was kinder than waking a man who was sleeping only a few hours a night. The parking attendant who saw me come in day after day to visit my son in the NICU [Dr. Awdish went on to have a second child after the tragic loss of her first], didn’t know any more about me than what he saw as part of his job, and yet his words made me feel he saw my suffering. He simply stated, ‘I see you come in every day, and you don’t leave until after my shift ends. I sure hope whomever you’re visiting comes out of this OK.’ These kindnesses matter.”

Dr. Awdish’s mandate as well as her passion is to improve the patient experience across the system. She has special interest in improving empathy through connection and communication, and travels throughout the U.S. to lecture to physicians, healthcare leaders and medical schools. It is her hope that the medical community can learn from her patient experience and put compassion back into healthcare.

“The system is broken, but the people are good,” Dr. Awdish proclaims. “And we must, as humans, meet each other and treat each other with kindness and compassion, regardless of the circumstances.”

Dr. Awdish shares her remarkable experience in her book, In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope. In this firsthand account, she sheds light on the true experience as a critical care patient and the fatal flaws of today’s patient care.

To learn more about Dr. Awdish’s incredible story, visit her website at www.ranaawdishmd.com.

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