What Makes Them Rare?

Updated on November 20, 2023

Woman’s beautiful poem urges healthcare providers to see the person as more than patient

As the primary caregiver for her husband Sean, who has battled a rare genetic disease since 2010, entrepreneur and podcast host Allison Breininger of St. Paul, MN, has met more than her fair share of doctors. As such, she knows healthcare professionals are often hyper-focused on data. But for more effective treatment that leads to better outcomes, Breininger says it’s crucial for doctors and nurses to practice good bedside manner, working to connect with their patients and caregivers as people.

In a poem that’s been widely circulated in the caregiving community, Breininger evokes the upsetting feeling of being in the room with doctors and med students who focus only on medical anomalies or a set of statistics, rather than seeing their patient and loved one as people. By comparison, Allison says when a healthcare provider takes the time to ask how the diagnosis is impacting her, inquires about the couple’s daughter or even remembers the name of their pet, it makes a big difference in forming an authentic personal bond that greatly enhances their healthcare experience. 

“I’m a huge fan of palliative care, which people often confuse with hospice or end-of-life care,” says Breininger. “People who work in palliative care are basically trained for an extra year on how to be compassionate, and how to see their patients and caregivers as a family unit rather than just as an individual or a data set, and that makes a major difference.”

National caregiving advocate Wanda Green Scott (Los Angeles) agrees. When her mother suffered a stroke 11 years ago, she became her mother’s full-time caregiver and noticed the difference in care when a doctor took the time to ask questions and listen intently. 

“The day a doctor said ‘tell me who your mother was before her stroke,’ that changed everything,” says Scott. “Sharing my moms story humanizes who she is, so care teams can bond with her beyond just seeing a ‘patient’ or a ‘problem.’ By taking the time to see my mother as a person, and by asking me to tell her story, it gave us all the opportunity to form a bond of trust and respect. This made a noticeable difference in the quality of my mother’s care and in her response to it, because we know we’re being treated like individuals, not numbers.”

As part of the Embracing Carers® initiative of EMD Serono, Allison Breininger and Wanda Green Scott want to raise awareness of the challenges caregivers face and offer suggestions to help healthcare providers better connect with their patients and caregivers, including:

Questions to ask patients and caregivers that can quickly establish a personal connection:

  • The importance of remembering personal details about patients’ lives 
  • Why acknowledging the caregivers’ experience is so crucial to building trust 
  • How to explain at-home caregiving duties in a way that gives caregivers more confidence and peace of mind 
  • Why it’s vital for healthcare professionals to view patients and caregivers as their partners in a system of collaborative care 

“One of my favorite quotes is from Nakita Valerio, who said ‘Shouting “self-care” at people who need community care is how we fail people,’” says Breininger. “Caregivers need more support at every level, especially when it comes to forming a human connection with healthcare providers.”

For more information and resources for caregivers, please visit https://www.embracingcarers.com/ 

Throughout the year, our writers feature fresh, in-depth, and relevant information for our audience of 40,000+ healthcare leaders and professionals. As a healthcare business publication, we cover and cherish our relationship with the entire health care industry including administrators, nurses, physicians, physical therapists, pharmacists, and more. We cover a broad spectrum from hospitals to medical offices to outpatient services to eye surgery centers to university settings. We focus on rehabilitation, nursing homes, home care, hospice as well as men’s health, women’s heath, and pediatrics.