Patients and families deserve culture of compassion




October 2017 marked the one-year anniversary of a new life I didn’t choose. My beloved husband, Bob, died in the fall of 2016 after taking a hard fall off his bicycle and spending 10 days in the ICU. I made the painful decision to follow his wishes and remove him from life support.

Before his accident, Bob and I hiked, biked, danced and relished days spent with our two young grandchildren. I loved my work, which involved speaking about and promoting prevention and wellness. I always emphasized that following the vision of building a Culture of Health in the U.S. — to make it possible for everyone to have the opportunity to live their healthiest lives — nurses needed to teach others to eat well, exercise regularly and address the systemic inequities that prevent people from living healthy lives.

But after the accident, life changed for me. I could not erase the image of Bob surrounded by tubes and machines and the feeling of being so out of control.

It was impossible for me to speak authentically about building a Culture of Health when it seemed to exclude critically ill and terminal patients, and the nurses who cared for them and their families.

In my vision of a Culture of Health, people lived life to the fullest without experiencing too much pain and suffering. A Culture of Health was impossible for Bob and patients like him.

I vividly remember the kindness of a few nurses who hugged me, asked about our lives and looked at the family photos on Bob’s bedside table. They took time to know who we were when our lives were whole.

But too often the ICU seemed chaotic, and practitioners were too busy and preoccupied with the tasks at hand to provide the human touch I desperately needed. I am convinced that my husband received good clinical care, but I also needed practitioners to explain what was happening to Bob. I wanted them to look at me and address me when they came into the room to see him, and I wanted to feel consoled. I wanted them to look at Bob and understand that just hours and days ago he was full of life and caring for his family. Instead, at times I felt abandoned and on the defense.

As nurses, we need to do everything possible to foster well-being for patients and their families. We need to know what matters to patients and their families. We should invite families to join in rounds, so they can be involved in decision-making, ask questions and share information.

By engaging family members as partners in care, we can improve communication, decrease family stress and improve patient outcomes.

Above all, we need to create a culture of compassion, so health professionals can offer comfort. Health facilities should have adequate staffing levels and support nurses as they carry out their work. Nurses cannot give what they do not have. Most men and women become nurses because they want to help others who are sick, scared and hurting and their workplace should make it easier for them to offer compassion.

I don’t want to change the pursuit of hospitals to improve safety and quality through evidence-based care, nor the efficiency needed to drive toward this goal. But Florence Nightingale observed “apprehension, uncertainty, waiting, expectation [and] fear of surprise do more harm than any exertion.”

As a scientist and a nurse, she understood that although knowledge, skills and evidence were critical, no true healing occurs without empathy and compassion.

I know this to be true after witnessing Bob’s care. As I’ve grieved, I’ve sought reasons for why I lost my husband suddenly and tragically. I still don’t have answers, but drawing attention to how the care experience can be improved for patients and their families has given my life new purpose. I’ve realized, too, that a true Culture of Health prizes well-being and putting patients and their families at the center of their care experience.

Now when I speak about building a Culture of Health, I discuss how health professionals can engage patients and families as partners on the care team. It’s what patients and their families’ desire and it’s what nurses were born to do.


Courses related to ‘ICU nursing’

CE625: Evidence-Based Practice for ICU Sedation, Central Line Infections and Early Feeding
 (1 contact hr)

Advances in technology give us easy access to a wealth of information to support evidence-based practice. By accessing these resources, nurses can provide patients with the best evidence-based interventions and treatments. This continuing education module reviews the evidence behind three practices: breathing trials for patients on mechanical ventilation, preventing CLABSIs and early feeding of critically ill patients.

CE476: KA Lurking Danger
 (1 contact hr)

Central line-associated bloodstream infections affect an estimated 80,000 patients in ICUs each year and are associated with about 250,000 patients with bloodstream infections, including non-ICU cases each year. CLABSIs can cause serious infections and lengthen hospital stay, inflate medical cost, and increase the risk of mortality. Nurses play a significant role in reducing these troubling numbers. The nurse’s understanding of CLABSI and evidence-based bundle practice can improve patient outcomes significantly.

CE390-60: Life-Threatening Fungal Infections on the Rise
 (1 contact hr)

The incidence of life-threatening invasive fungal infections such as Candida and Aspergillus has doubled during the past several decades because, in part, of an increasing population of immunosuppressed and critically ill patients. Cancer patients with chemotherapy-induced neutropenia (an abnormally low number of neutrophils); transplant recipients receiving immunosuppressive therapy, such as corticosteroids or cyclosporine; patients with HIV; and patients in ICUs are at an increased risk of acquiring fungal infections. The risk of infection has increased for critically ill patients with normal immune systems as well. Nurses and other healthcare professionals need to educate these vulnerable patients about the importance of infection-control protocols to reduce their risk of developing invasive fungal infections. Such patient education can save lives.


About the author
Susan B. Hassmiller, PhD, RN, FAAN

Susan B. Hassmiller, PhD, RN, FAAN 

Susan B. Hassmiller, PhD, RN, FAAN, is senior adviser for nursing for the Robert Wood Johnson Foundation. Hassmiller is a member of the Institute of Medicine, now called the National Academy of Sciences, a fellow in the American Academy of Nursing, a member of the Joint Commission’s National Nurse Advisory Council, Hackensack Meridian Health System Board of Directors, and the CMS National Nurse Steering Committee.

9 responses to “Patients and families deserve culture of compassion”

  1. Estimada Susan
    Comparto totalmente su visión de necesidad urgente de un cuidado compasivo en nuestros colegas. Pese a que las instituciones donde desarrollamos nuestra tarea lo ignoren, es nuestro deber detenernos en “el hacer” y reflexionar ” en como lo hago”, desde que lugar de “mi humanidad” brindo el cuidado a pacientes y sua familias. Un gran abrazo.
    Lic Enf.Walter Anchoverri
    Argentina

  2. Translation: Dear Susan
    I fully share your vision of the urgent need for compassionate care from our colleagues. Although the institutions where we practice ignore it, it is our duty to stop at “doing” and reflect on “how I do it”, and then progress into “my humanity” offering care to patients and their families. A big hug.

    Walter Anchoverri
    Licensed Nurse
    Argentina

  3. Susan,

    Thank you for your courageous and thoughtful transparency, in sharing this. A good reminder that true care must be holistic, involving empathy, congruence, and genuine and meaningful compassion. What a reminder that for adults, as well as children, love is spelled T-I-M-E. May each of us do our part to address the challenge of the Hippocratic oath to “do no harm to the patient” whether by commission or by omission. Thank you for this reminder that we are all, at any given time, either part of the solution, or part of the problem. Having lost my Mom two years ago to repeated infections in ICU,I can understand a little bit how you feel. Your post does much to inspire me to do my little part to contribute to and enhance patient care and safety in our hospitals.
    Wendell D’Souza
    Montreal, Canada

  4. Well written and said!I couldn’t agree with you more. Like you many spouses & families will want to be included. There are just as many who are unable to handle such situations. The key here is to ask them about being included. To miss this key concept is to miss the boat on family care.

  5. Thank you, Sue for sharing what was clearly, a difficult time in your life. I appreciate your point of view and believe that (I) and other families who have a loved one in the ICU bed information about the patient that is expressed with compassion and empathy. While it’s seems logical, I believe many nurses are not comfortable or uncertain how to engage in this Practice.

  6. Hi Susan! So sorry for your loss. You make some great points. I think there is a fine line between competence and compassion. Great to have both obviously, but if you had to pick one, which would it be. You’re right, the ICU, especially, can be chaotic. Healthcare settings like the Emergency Room can be as well. I might choose competence, if it came down to having to choose, but as we graduate health care professionals from our schools, we need a more on bedside manner and great communication skills. Thanks for your post. Take care.

    • There is not a choice between competence and compassion. Competent nurses demonstrate compassion in all their interactions with families and patients. It is what nakes a nurse a nurse. There may be some circumstances when the nurse is in a situation (resuscitation) where she can’t turn around and take the moments to speak to a family-but someone in that room can. We need to stop making excuses and do the right thing. The public has the right to expect that compassion is a core competency of a nurse.

  7. Unfortunately, compassion is not a reimbursible treatment.
    It was a revelation when working for a Hospice, to know I had whatever time needed to communicate and counsel with families as part of the job.

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