Care Redesign

What If Family-Centered Care Were Extended to Medical and Surgical Procedures?

Article · November 13, 2018

On the morning of November 18, 1686, King Louis XIV underwent surgery to repair an anal fistula. Assisting Charles François Félix, the court surgeon, that morning were three other barber-surgeons and four apothecaries. The operation took place in Versailles in the King’s bedchamber. Hospitals, where the most experienced surgeons practiced, were considered not only less safe due to the higher risk of infection, but also less therapeutic because of shared procedural and recovery space as well as the gruesome noises that echoed throughout hospital wards. The King required two additional surgeries, but eventually his fistula healed. Félix was awarded with a castle at Moulineaux, a handsome sum of money, and the noble title of Charles-François Félix de Tassy.

The story behind this operation became a famous chapter in the history of surgery, not only because it centered on the royal rump, but also because Félix had never operated on an anal fistula. He requested of the King 6 months of practice time, during which he developed a royally curved instrument (a bistoury) for use during the operation. A less celebrated aspect of the King’s surgical care is just how family-centered it was. During each of the King’s three operations, a number of family members and significant others were present at the bedside, including the King’s priest, his Minister of War, his son the Dauphin, and Madame de Maintenon, his mistress and eventual (second) wife. They witnessed the entire operation, provided the King with comfort and reassurance, and were able to assist the care team in examining him each time he awoke.

Today’s hospitals, operating rooms, and procedure suites are far safer and more advanced than those of Renaissance France. But are they nearly as family-centered? What if family members and loved ones were routinely invited to observe surgical and medical procedures? What might patients think and feel if having their family participate in every aspect of care was not something done in exceptional cases, but, unless there was good reason to exclude them, was in fact the default? What about health care providers? Would they be uncomfortable or skeptical of such an approach, or might they embrace it? Recent work by a few innovative teams sheds light on these possibilities.

Family-Centered Cesarean Birth

Family-centered cesarean birth is a bundle of interventions designed to optimize the experience and outcomes for healthy women undergoing cesarean births of non-compromised singleton fetuses at term. Key components include inviting the partner into the operating room for the procedure (including anesthesia induction), early mother-infant skin-to-skin care in the operating room, initiating breastfeeding in the operating room, and optimizing the environment of care to meet the woman’s and family’s needs (such as draping the woman in such a way as to facilitate maternal viewing of the birth, and adjusting the lights, sounds, and temperature in the operating room). Although family-centered cesarean birth is not practiced universally, institutions where it is considered standard of care report that it is not only safe, but that it is also effective at optimizing maternal-infant bonding and the overall birth experience.

Family-Centered Electroconvulsive Therapy

Individuals who are referred for electroconvulsive therapy (ECT) suffer from some of the most serious illnesses in all of medicine, including major depression, mania, schizophrenia, and catatonia — illnesses that cause cognitive, emotional, and behavioral distress. Added to that is the anxiety associated with receiving a medical treatment that remains shrouded in stigma.

Family-centered ECT involves providing patients the option of having family members or significant others accompany them in the procedure suite to observe and participate in every aspect of the procedure, including the preoperative evaluation, the pre-treatment time-out, the treatment itself, and the recovery and postoperative reorientation. This approach to delivering ECT care offers a number of benefits, such as alleviating anxiety for the patient and the significant others, strengthening their trust of the ECT team, facilitating family member engagement in their loved one’s care, enhancing communication among providers, and empowering families to serve as ambassadors against stigma.

Family Presence During Cardiopulmonary Resuscitation

When a loved one suffers an acute life-threatening event and requires resuscitation, family members and significant others may wish to be present. Offering them this option reduces their distress — even if they choose not to be present — and is not associated with any difference in clinical outcomes. Nevertheless, a survey of nearly 600 critical care professionals found that the vast majority do not support the 2000 American Heart Association recommendation to allow family members to be present during cardiopulmonary resuscitation. Only 20% of physicians and 39% of nurses and allied health workers would “allow” family member presence during resuscitation of adults. Even fewer would “allow” family member presence during resuscitation of children, an odd finding given that parental presence during pediatric trauma resuscitation actually improves team performance.

Understanding Our Reluctance

The concerns of health care providers reluctant to have family members and significant others present during invasive procedures are real. What if loved ones are traumatized by what they witness? What if they become hysterical and interfere with the procedure? What if their presence distracts the care team or makes them anxious? What if they see me make a mistake? (As the story goes, after repairing the royal fistula, Félix de Tassy never operated again.)

First and foremost, family-centeredness does not mean providers should abandon patients and loved ones to their own autonomy. Inviting loved ones to participate in care should involve preparing them for what they will observe and what feelings might be elicited, as well as providing specific instructions on how they can be helpful to both the patient and the care team. Through this process, some family members will choose not to be present (although, in my experience, they will still be impressed and heartened by receiving the offer). Those that do will have been reminded that the safety of their loved one is paramount and, therefore, circumstances may occur in which they are asked to leave the treatment area. Families understand this. They want their loved one to remain safe. They also understand that health care professionals are human and that humans may make mistakes. Education and transparency strengthen trust.

Second, these experiences above, each from a different specialty of medicine, suggest that there may be more to gain than to lose by extending family-centered care into the world of surgical and medical procedures. Health care providers should be encouraged by the reality that none of the examples described here have so far been shown to worsen patient outcomes, provider performance, or the patient’s experience of care. And they might be further nudged by the fact that implementing family-centered care comes with minimal or no financial barriers. In fact, even in the highly controlled environment of an operating room, family member participation can be safely and affordably enabled through the use of modern livestreaming technology.

Further research is needed to understand the full impact of these and other family-centered innovations in health care delivery. In the meantime, these early experiences suggest that family member engagement may be an effective tool for improving the value of care.

 

Acknowledgements: I declare no potential conflicts of interest and no sources of support related to this work. I gratefully acknowledge C. Edward Coffey, MD, Charles E. Coffey Jr., MD, MS, Thomas H. Lee, MD, Matthew T. Santore, MD, and Mya R. Zapata, MD, for their thoughtful comments on an earlier version of this manuscript.

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