How my husband’s accident made me advocate for compassionate care

By Susan B. Hassmiller | 11/09/2017

We must do better for patients and their families.

ECG monitorNurses so busy using patient-monitoring technology they don’t have time to offer comfort to patients and families need to rediscover one of nursing’s oldest tools—compassion.

I accepted in early 2016 the opportunity to co-edit with my colleague Jennifer Mensik the second edition of The Power of Ten: A Conversational Approach to Tackling the Top Ten Priorities in Nursing. I had spent the preceding six years leading the Future of Nursing: Campaign for Action, a nationwide initiative to transform health through nursing. Co-editing the book would enable me to engage nurses at all levels on how they can provide exceptional care in the 21st century. Jennifer and I selected established and emerging leaders to write pithy essays about the top 10 issues in nursing, and we compiled their contributions in a short volume designed to spur discussion.

Susan B.HassmillerI was proud of the nuggets of wisdom contained in the book—from Linda Burnes Bolton’s advice to “call the circle” (to engage others and create a space where conversation can flow freely to improve care for all) to Jesse Kennedy’s plea for nurses to see the need for advocacy beyond that of advocating for individual patients. I imagined nursing students highlighting passages they found meaningful and discussing them in class, and I hoped that practicing nurses would read the book and be inspired to take specific actions to improve care. Little did I realize the impact their words would have on me.    

My world stops
Shortly after the book was published, my life changed drastically. On 25 September 2016, while I was attending a routine board meeting in Philadelphia, my husband, Bob, took a hard fall off his bicycle. He was airlifted to an academic medical center. For the next 10 days, my world stopped. I stayed by Bob’s side, replaying memories from our 37-year marriage and hoping and praying for the best. It was not to be. His condition steadily deteriorated, and I made the painful decision to follow his wishes and remove him from life support.

The experience left me numb. Several nurses took the time to comfort me and ask about Bob’s life and our lives before the accident, and I am forever grateful to them for the compassion they showed us. Overall, though, I came away from my experience on the “other side of the bed” convinced that we must do better for patients and their families. Many of the nurses and physicians were simply too busy to offer the comfort I needed. Long ago, compassion was one of the few tools nurses could offer patients and their families. Medical technology and computers have improved patients’ survival odds, but the improvements have come at a steep cost: removing health professionals from truly interacting with their patients.

Seeing patients
Noted physician and author Abraham Verghese has called for health professionals to spend more time with their patients and to see them, as one report summarized his perspectives, as “human beings who are suffering, fearful and in need not just of treatment, but of comfort and reassurance.” He maintains that “the best way to understand a hospitalized patient is not by staring at a computer screen, but going to see that patient.” During that bedside interaction, he is able to “figure out what’s important to the patient” and how the accumulated data makes sense.

I understand how busy nurses are, especially those who work multiple shifts and care for many patients. They are tasked with administering medications, managing intravenous lines, monitoring patients’ conditions, maintaining records, and communicating with doctors. Nurses also play a key role in promoting quality and safety. It is no wonder that some suffer from burnout and compassion fatigue. But something is irrevocably lost when nurses cannot take time to sit with patients and family members and ask how they are doing and what is important to them. Hospital administrators and nurse managers need to reestablish a culture where compassion matters as much as quality care. In fact, compassion is central to achieving high quality care.

Simple steps administrators can take include offering shorter shifts for nurses; maintaining lower patient-to-staff ratios; increasing time spent with patients and families by using volunteer care extenders; and including time during rounds for nurses to ask patients and their families what matters most to them—and to make sure they understand what is happening and receive thorough answers to their questions.   

With others but alone
As a family member, I felt deeply alone and isolated in the ICU, even though some of my closest family members and friends stayed with me and never physically left me alone. My mind kept replaying Bob’s accident and imagining worst-case scenarios of what the future held. In the waiting room, I occasionally looked at family members of other ICU patients and knew they harbored similar thoughts.

One thing that helped me was attending morning rounds with Bob’s care team. Because of my background as a nurse, I invited myself to join the physicians and other care-team members each morning and evening when they discussed Bob’s prognosis and care. I told them things I noticed about his condition, and I asked questions about his care and received explanations. It helped me better understand his prognosis.

But I was the only family member in the ICU who participated in rounds. The others watched outside glass windows or in the waiting room while their loved one’s care team stared at computers and rarely looked at the patient. All family members should be given the opportunity to participate in rounds. Evidence shows that, in addition to other benefits of involving patients and family in patient care, family members can act as additional sets of eyes and ears and notify hospital staff members of potential adverse events.         

What they didn’t say
As Bob’s condition continued to deteriorate, the physicians spoke to me about individual body systems that were failing, but they never once uttered the d-word. I ultimately asked and was referred to palliative care and hospice. No family member should have to ask about their loved one dying. Admirably, health professionals focus on curing, but they also should offer comfort measures and compassion when curing is no longer possible.

I met with a wonderful palliative-care nurse practitioner who helped my family and me discuss our options. She brought the care, human connection, and compassion I needed. I wish I could have used her as a resource sooner and after it was all over. I was not given that opportunity.      

After the end—after I lay down next to Bob until his heart stopped and after his memorial service and a period of grieving—I returned to work. But I found myself reliving those 10 days in the ICU, and I kept thinking of ways the care experience could be improved for patients and their families.

Advocating systemically
In The Power of Ten, Jesse Kennedy, a staff nurse in the ICU at Peace Health Sacred Heart Medical Center in River Bend, Oregon, USA, observes that nurses become advocates when they are able to see beyond their individual experiences of caring for patients and suggest systemic changes. I realized that my experience as a family member was not unique, and I wanted to advocate for nurses and physicians to more readily be able to provide compassionate care. Most health professionals choose a healing profession because they are innately compassionate people, and hospital policies should facilitate the ability of those professionals to offer empathy to patients and their families.

As I continued to reflect on those days, I next followed Linda Burnes Bolton’s advice to “call the circle”—to engage others and create a space where conversation can flow freely to improve care for all. Linda, who is vice president for nursing, chief nursing officer, and director of nursing research at Cedars-Sinai Medical Center in Los Angeles, describes in The Power of Ten how she has actively engaged diverse voices throughout her career to improve health and well-being.

I began to call the circle by reaching out to nurse executives and chief nursing officers at acute care hospitals, community health centers, policy institutions, and quality and safety organizations. My colleague Ani Bilazarian and I asked them about how they promote consumer engagement, defined as a clinician’s ability to connect with patients on a more personal level to help them manage their own care. We listened as they described how they involve patients and families as partners on the care team, support employee health, and reduce compassion fatigue among nurses. Our findings will be published in the March 2018 issue of JONA, The Journal of Nursing Administration.

Culture of Health
I’ve also begun to speak widely about the need for health systems to equally prioritize compassion and quality care. As senior adviser for nursing at the Robert Wood Johnson Foundation, I speak frequently to national audiences about how nurses can help build a Culture of Health. By that, I mean enabling all people to live the healthiest lives possible and to experience well-being. I have started to share my experience in the ICU and use specific examples of how health systems can include patients and their family members during rounds as a way to experience greater well-being.

I have never been one to accept the status quo, and I believe we all must do our part to prioritize compassionate and quality care. Florence Nightingale once said, “Were there none who were discontented with what they have, the world would never reach anything better.” Together, let’s reach for and realize a better care experience for patients and their family members. RNL

Susan B. Hassmiller, PhD, RN, FAAN, is senior adviser for nursing, Robert Wood Johnson  Foundation (RWJF); director, Future of Nursing: Campaign for Action; and co-director, RWJF Future of Nursing Scholars program. 

 



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