Touch Beats Tech & The Lost Art of Bedside Manner

11/04/2018

My mother lay awake and motionless in her hospital bed in a world-renowned clinic in New England. She was losing her battle to myelodysplastic syndrome (MDS) which had developed into acute myeloid leukemia (AML). Teams of hematologist-oncologists and nurses were assigned to her care in the oncology unit.

She had spent years going to the hospital lab to receive transfusions of blood and platelets to help sustain her. The nurses in the lab would sit with her, bring her sweets, share their life stories with her and hug her when she cried. Mom, at only 68 years old, knew she was dying -- she was an R.N. herself. She loved the nurses in the lab and felt cared for and emotionally supported, and it meant more to her than all the chemo and aggressive treatments she would end up pursuing, and all those facts and figures the physicians would recite. She worried about nurse Mary's daughter who was cutting herself. She worried for Kathy's high-risk pregnancy. She cared right back at them. They were people, too, challenged with life's struggles.

I was my mom's primary caregiver from Mother's Day 2010 until her death on Labor Day 2010. She had signed a healthcare proxy so I could speak with her doctors and be a part of her care team. Mom basically lived at the hospital the summer of 2010. On one particular day in her hospital room, various physicians wearing white starched lab coats would come by, stand at the end of her bed, and update her prognosis authoritatively. There were statistics, outcomes, and choices. Their opinions varied, however, all but one physician recommended she try an intense treatment called induction which destroys most of the normal bone marrow cells as well as the leukemia cells.

In the late afternoon as the sun grew dim, this one young doctor came in to see her. He smiled sadly, said hello, and pulled up a chair right next to her bed to sit down and talk with her. I sat across from them in an armchair. This doctor described the induction therapy, however, with compassion and transparency, he gently told mom that he had not seen it help a single patient survive. He said it made them sick and that they died anyway. Mom's eyes widened; tears rolled silently down my cheeks as we listened to him speak about her condition and induction. He suggested that she enjoy the quality of life she has left, which could be as little as two weeks. He told her that he was so very sorry. He stayed with us a while to discuss things and answer any questions and did not leave the room until he sensed it was his time to go. Then mom and I hugged and cried.

This young doctor's bedside manner was so heartfelt and lovely, even when delivering the most devastating news. He truly cared about his patient's quality of life and didn't want her to suffer needlessly. We both agreed he was the nicest doctor of them all - he didn't stand at the end of the bed with his chart or iPad reading off stats.

"Bedside manner is truly a lost art which I hope regains momentum and receives more attention including mentoring and hands on experiences for medical students."

Mom had always sworn that if she got cancer, she would never do chemo as she saw too many people suffer throughout treatments and even die from their treatments.

She 100% surprised us all when she opted for the induction therapy. Mom was not ready to die. She was still hopeful and would end up tolerating this inpatient treatment well.

There was a lot of technology involved in her treatments. IV bags filled with toxic chemicals that would be pushed through her veins for seven days straight. Machines that took readings, machines that beeped. Her arms were black and blue from so many needles. Her hips ached from biopsies. LCD screens showed various charts and graphs of her health status. This top-notch clinic had the most modern technology available for cancer patients. None of this technology, however, could comfort her.

Unfortunately, the induction was not successful. Her disease loomed over her and she was not young and well enough for a bone marrow transplant. She was sent home on hospice, completely heartbroken.

At home mom shared with me that there was a night nurse in the hospital who would sit with her and hug her and sing songs and even pray with her. My mom could not believe what an angel of a nurse was sent to her. There was also a day nurse, Kathy, who treated her like a friend or family, and not a number (patient 102). Kathy attended her funeral.

Mom's decline was swift at home because she no longer received blood or platelet transfusions. I held her hand as she died peacefully on a beautiful sunny day, in a room just footsteps away from the sparkling lake she lived near.

My reflection on this experience, and also from working in the healthcare industry, is that nothing beats touch. We will continue to develop breakthrough treatments and innovative medical technologies, however, that's not what truly matters to a sick patient. What matters is that one clinician, the one who holds your hand, sits near your bedside, looks into your eyes, and says "I'm so sorry."

Heidi Creighton is president of a Boston-based healthcare communications consultancy. She holds a B.A. in Expository Writing and Journalism from the University of Southern Maine and serves on the board of directors of several healthcare and education councils.