Physician’s Near-Death Experience Inspires Campaign to Boost More Effective Patient Communication

Newswise, February 13, 2017 – In an article to be published in the Jan. 5 edition of the New England Journal of Medicine, a Henry Ford Hospital critical care medicine physician describes in candid detail about how her own near-death experience inspired an organizational campaign to help health professionals communicate more effectively and demonstrate more empathy to their patients.

Rana Awdish, M.D., director of the hospital’s Pulmonary Hypertension Program, writes in “A View from the Edge: Creating a Culture of Caring” that as a patient “I learned that though we do many difficult, technical things so perfectly right, we fail our patients in many ways.”

In 2008 Dr. Awdish nearly died when a tumor ruptured in her liver, leading to multisystem organ failure. The care team worked frantically to save her but could not save the baby she was carrying. Her recovery would include five major surgeries and multiple hospitalizations in intensive care. She also experienced something unexpected: a kind of casual indifference.

“I was privy to failures that I’d been blind to as a clinician,” she says. “There were disturbing deficits in communication, dis-coordinated care, occasionally an apparently complete absence of empathy. I recognized myself in many of those failures.”

Dr. Awdish says her patient experience inspired her to champion a shift in culture for helping health professionals talk more effectively with their patients at Henry Ford Hospital and throughout its parent organization, the Detroit-based Henry Ford Health System. She used her experience to drive home the point to leaders and others that “everything matters, always. Every person, every time.”

Henry Ford’s Physician Communication and Peer Support curriculum, launched in 2013, is guided by empathy and compassion, beginning with an understanding of what matters most to patients and aligning them with patient values. It’s geared for physicians, residents, fellows, nurses and other health professionals. Courses include:

• CLEAR Conversations. CLEAR stands for Connect, Listen, Empathize, Align and Respect. A course in which health care workers test their communication skills in stimulated conversation exercises with Detroit-based improvisational actors who portray patients and family members. It teaches how to navigate difficult questions and respond to expressions of emotion. These exercises are videotaped, allowing for immediate feedback. A mobile app offers easy access to tips and videos for effective communication.
• A skilled communication workshop based on the 4 Habits of Effective Physician Communication model.
• Real-time shadowing. A trained observer shadows the provider during a series of patient interactions. Best practice behaviors and empathic communication skills are evaluated, and best practice feedback is shared during a one-on-one debriefing.
• New-hire orientation, during which employees are taught their value and purpose within the organization, not just to their job. Discussions emphasize learning to recognize avoidable and unavoidable forms of patient suffering. New employees are tasked with reducing avoidable suffering.

“My experience changed me,” says Dr. Awdish, who also serves as medical director of Care Experience, which directs the patient communications initiative across the health system. “It changed my vision of what I wanted our organization to be, to embody.”

She says her experience is a teachable moment across the spectrum of health care as the focus shifts to respecting patients as more than just someone with an illness or disease.

“By focusing on our missteps, we can ensure that the path ahead is one of compassionate, coordinated care,” Dr. Awdish says.

“When we are ashamed, we can’t tell our stories. In the wake of painful experience, we all seek meaning. It is the human thing to do, but it is also the job of great organizations. The stories we tell do more than restore our faith in ourselves. They have the power to transform.”

Sociology Professor Addresses Caregiving Burden From Personal Perspective

Newswise, February 2, 2017— It’s not every day a researcher draws from their own experiences as the basis for a published study but that’s exactly what Miles Taylor, associate professor of sociology at Florida State University, has done in her latest paper addressing what she calls the structural burden of caregiving.

The study, “The Structural Burden of Caregiving: Shared Challenges in the United States and Canada,” published in the January edition of The Gerontologist, examines the caregiving stress associated with navigating the health care system in the United States and the social care system in Canada.

A call for papers from The Gerontologist prompted Taylor and her colleague Amélie Quesnel-Vallée, sociology professor at McGill University in Quebec, to consider their own experiences caring for aging parents and to see if those experiences exposed gaps in aging literature.

For Taylor and Quesnel-Vallée, the most noticeable void lay in the area of emphasis and quantifiable data on the amount of time caregivers spend negotiating treatment and services for their care recipients.

“Research up until now has really defined caregiving burden in terms of the amount of time and stress it takes to actually provide care to another person — helping with daily tasks and how especially difficult it can be when they need help with things that are very personal, like bathing,” Taylor said.

Taylor said previous models of caregiving burden have done a good job of notating interpersonal stresses, such as strained relationships and the demands in the caregiver’s life.

But what about the time spent negotiating health care systems, getting the care, getting treatments, figuring out when treatments will be covered and under which circumstances? That part of the caregiving burden, Taylor and Quesnel-Vallée say, isn’t well-articulated or measured.

It was 2010 when Taylor began caring for her grandmother, her only living parent, off and on for about 5 years. That was about the same time Quesnel-Vallée began caring for her mother in Canada. The two found their caregiving trajectories and experiences lined up so much, they decided to put their experiences in this paper.

Although they knew providing the direct care would be difficult, they were not prepared for how much time and stress they would spend trying to understand, negotiate and manage medical and related care for their loved ones. They contrasted the two care settings. Ultimately, they concluded that Canada offers more services for older adults and there is more transparency about what is and what is not covered.

However, there were some common themes among the Canadian and American systems. In both systems the researchers found that a great deal of time was spent negotiating and managing care and services but the burden often went unrecognized. They also found in their experience as caregivers that the systems were characterized by discontinuous and fragmented care.

The final common theme researchers noted was the gross potential for inequity for both the caregivers and care recipients.

“We kept telling each other over the course of the past six years, if we felt like this was so difficult and if we had such a hard time, how in the world would other folks begin to deal with this? It must be so much more burdensome,” Taylor said.

Taylor and Quesnel-Vallée felt their education, income and even their race gave them more social currency and health care literacy to help them gain information and access services.

The pair want the paper to not only inform health care professionals and policymakers about the aforementioned issues with the two care systems, but also the caregivers themselves.

“We hope caregivers will understand this part of caregiving, the stress involved in managing care and negotiating services, constitutes caregiving time and stress,” Taylor said. “Often, we felt it wasn’t counted in terms of how much time is spent caring for someone else.”

Through their testimony, Taylor and Quesnel-Vallée also hope other scholars will move forward and try to measure this time and stress related to managing care better. Right now, most surveys only question how much time caregivers take feeding or bathing their care recipient or providing other daily tasks such as taking out the trash.

“I think that now we should increasingly ask how much time and stress did you spend negotiating with medical care, and Medicare, and trying to figure out which services were available and when,” Taylor said.

Taylor says a number of people are experiencing the structural burden of caregiving even though it’s not clearly in the literature yet. They hope caregiving theory can broaden and consider this structural burden, especially considering advanced medical practices are causing people to live longer.

“There was a very recent caregiving report that said over half of caregivers are actually engaged in these kinds of tasks, yet we don’t quantify that,” Taylor said. “We don’t say how much time is this taking up? So that’s what we’re hoping to do, shed more light on it — and I think when you give something a name and a clear theme and definition — that’s when you can get the ball rolling to help people to talk about it more.”