Departments: Guest Editorial
On September 25, 2016, life as I knew it ended when my husband Bob was injured in a bicycle accident. He spent 10 days in an ICU before succumbing to his injuries. During that time, several clinicians provided the care and compassion I desperately craved. I learned, however, that many clinicians do not have the time—or the inclination—to provide the compassionate care needed by patients and their families. I want to change that.
My ICU Observations
Technology, paperwork, staffing ratios, and personal issues can overwhelm the best of clinicians. Medical advances have revolutionized care and often extend lives but can create a barrier between health professionals and their patients, leaving them to feel excluded from decisions affecting their care.1 I experienced that barrier all too well. Nurses and doctors asked if I had questions, but sometimes did not make eye contact and were halfway out the doorway. I knew how to navigate the system and speak to clinicians, which helped immensely. Other family members without knowledge of the inside were not so fortunate. I witnessed confused, angry, sad, and frightened family members in the ICU waiting room. All of us felt bereft and alone. That isolation and fear were daunting, even when surrounded by loved ones. I knew how busy the clinicians were at a rational level, but the loneliness I felt was acute.
Patients and their families need nurses—as the most trusted profession and the health professionals who spend the most time with patients and families—to make sure they understand and agree with the care being provided, to give ample opportunities to offer input, and to provide an open invitation to express hopes and fears. Invitations for me occurred when a nurse was away from a computer, used eye contact and touch, encouraged family photographs to be displayed, asked me what Bob was like, and understood the value of our preferences.
Because of my background, I inserted myself into daily rounds. I was the only family member in the ICU who attended rounds; the rest watched from the waiting room as the care team consulted their computers and each other to make decisions about patients—often without looking at them. Participating in rounds enabled me to ask questions, receive explanations, and offer my own insights about Bob's care. All family members deserve that opportunity.
During Bob's stay, his body systems failed one by one. After 9 days, I asked to speak to someone to discuss Bob's overall well-being, including a prognosis and what my options were, something no one should have to ask. The pastoral and palliative care team helped me to make the most heart-wrenching decision of my life by reinforcing that it was my responsibility to follow Bob's wishes and remove him from life support.
What I Learned and What Nurse Leaders Can Do
My 40-year-nursing career has been dedicated to preparing the nursing field to provide high-quality care. To dispel stereotypes about nurses, I sometimes shunned the words “compassion” and “heart,” instead stressing how nurses are leaders and innovators who promote safety and quality. But my experience crystallized that compassion and heart cannot be expunged and indeed are unique nursing contributions. We must make competency and compassion drive every interaction with patients and their families. Here are some ideas:
- 1. Prioritize compassion. Foster a culture of compassionate care from the C-suite on down, where nurses and other staff take the time needed during their interactions with patients and their families to elicit what matters most to them. Ask and ensure they understand everything that has been explained. Technology should enable care, not hinder it.
- 2. Foster true interprofessional collaboration. Teams that work together seamlessly and with great respect and trust generally pass down that culture to patients and families. When teamwork thrives within a culture of compassion, patients and families gain an added sense of security and well-being.
- 3. Offer support and meaningful recognition to nurses. Some of the best health systems take steps to support nurses, from setting shorter shifts, to giving experienced nurses a voice at management meetings as part of shared governance, to cultivating a culture of trust, respect, recognition, and care. Meaningful recognition programs such as Magnet® and the DAISY Award are helpful. Some hospitals bring in volunteers to spend time with patients and their families as care extenders. Nurses cannot give what they do not have.
- 4. Allow family members to participate in rounds and visit when they want. Patients and families provide an extra set of eyes and may be able to alert nurses to impending adverse events. Evidence shows that patients who have the ability to be more involved in their care are better able to manage chronic conditions and seek appropriate assistance in the hospital and at home. They also have reduced anxiety and stress and shorter hospital stays.2 Engaging patients and families and offering open visiting hours can help to meet their needs and desires.
- 5. Ensure appropriate staffing levels. Several nurses told me after I shared my story that they wished they had more time and energy to provide compassionate care. Nurses understandably work long shifts where they are short-staffed and experience stress and fatigue. Increasing staffing levels would enable nurses to spend more time with patients and their families.
- 6. Bring in pastoral and palliative care earlier. Pastoral and palliative care should be offered to patients and their families as soon as it becomes apparent to the health team that the patient's survival odds are steadily decreasing. In less serious circumstances, these team members can still bring peace and guidance. Sometimes clinicians are too focused on curing and providing hope—as well intentioned as that is—when patients and their families instead need comfort and time to say goodbye.
By sharing my story, I hope that nurse leaders will prioritize the importance of making care and compassion a central part of every patient and family interaction and that nurses will truly engage them in their care decisions. Patients and their families deserve nothing less.
1. Barry MJ, Edgman-Levitan S. Shared decision making—the pinnacle of patient-centered care. N Engl J Med