(To mark Patient Safety Awareness Week, we will be presenting a number of guest blogs. Here's the second:)
My job is to help people who are suffering emotionally after they (or a family member) have had a bad medical outcome. I have worked at MITSS (Medically Induced Trauma Support Services) for the past eleven years, and on a weekly basis I speak with patients and families from all around the country dealing with the worst that healthcare has to offer. Our focus is on medical harm -- errors, hospital acquired infections, surgeries gone wrong, adverse events – typically resulting in anxiety and depression, fear of medical treatment, family stress, and emotional trauma. More often than not, to add insult to injury, these patients report a startling lack of compassion and stifled, or non-existent, communication with the hospital and medical staff they trusted to care for them. And, their feelings of isolation and confusion only serve to compound the trauma of the precipitating event.
Unfortunately, it is through this lens that I have come to view the healthcare industry. On the positive side, though, I have learned a great deal from wonderful organizations like Health Care for All and from the growing legion of patient advocates and advocacy groups. I have been well schooled on how to become an engaged patient, the importance of advocating for myself and my loved ones, and my rights as a patient or family member.
This past November, my Dad suffered a heart attack while at his winter home in Florida. My six brothers and sisters and I flew down to be with him and spent nine agonizing days in and out of the Cardiac ICU. Ultimately, he was too sick to tolerate surgery, and we made the decision to med-flight him home to a hospice in Needham where he died peacefully a few days later. While he was in Florida, he was only intermittently lucid, so we needed to advocate and communicate for him with the care team.
Over the course of my Dad’s hospitalization, my cynicism and mistrust gave way to admiration and respect for his care givers. That stubborn chip on my shoulder melted away as we were treated with dignity and respect, and the lines of communication flowed openly and smoothly. Clinical point people were assigned, phone numbers and emails freely exchanged, and social workers checked in frequently (tracking us down anywhere and everywhere throughout the hospital when need be). Quite amazingly, the doctors and nurses came to know our names (all 7 of us) and even some of the more personal details. For example, they were acutely aware of the fact that my youngest sister had left her 7 month old baby at home for the first time and was torn between staying in Florida with our Dad and going home to her son. Questions were encouraged at any time, meetings were arranged that never seemed rushed, and we were even invited to join in the morning rounds. When our worst fears became a reality, and we were leaving to make the flight home to hospice, there were ample tears and warm hugs on both sides.
My story did not have a happy ending; yet, I look upon the experience with tremendous gratitude for the kindness and compassion that my family was shown. I am also grateful for the open and honest, albeit painful, communication. I think it is important to note, though, that my father’s course was not complicated by an adverse event.
When comparing my work and personal experiences, I am left with these questions:
- Why is it more difficult to keep the lines of communication open when the situation is complicated by a medical error or adverse event?
- Why do patients and families sometimes feel “shunned” after they have been harmed? Shouldn’t this call for more, rather than less, kindness and compassion?
- Shouldn’t patients and family members be treated as members of the care team even when it is hard?
We need to step back and take a fearless look at the patient and family experience following medical harm. Kindness, compassion, honesty, and open communication should be the norm, each and every time, not just when it’s easy.
Winifred N. Tobin is the Communications Director for MITSS, a non-profit organization headquartered in Chestnut Hill, Massachusetts, whose mission is To Support Healing and Restore Hope to patients, families, and clinicians following adverse events.