AN APPROACH TO DEATH AND DYING: RESPECT at the End of Life

Scott Schmidt, MD

It was a busy Saturday night at Harbor UCLA Medical Center just outside South Central LA. A young man arrived in cardiac arrest after multiple gunshot wounds to the chest, and despite our best efforts he died. After the code, I ran through what we did in my mind. We’d made all the right moves. I knew we’d done everything possible to save his life. I was a second-year resident, and I was learning to take the lead.

The last thing on the list, of course, was to tell the shooting victim’s wife that he’d died. I was on my way to speak with her when a senior resident pulled me aside and said, “The conversation you are about to have is all that matters right now.”

It was a teachable moment and he was absolutely right. Unfortunately, that was the full extent of the training I received during residency in being with death and dying. The emphasis was on saving lives—not on how to speak and be with patients and families at the end of life. That experience and a constellation of others around that time led me down a path of ever-deepening interest and passion to learn more. It is now 20 years since that night, and what follows is part of what’s come out of my journey down that path.

The RESPECT Project is an interdisciplinary approach to death and dying that we first implemented in the Emergency Department at Kaiser San Rafael in December 2013. It is a distillation of some of what I’ve learned in 20 years as an ED physician and 10 as a hospice and palliative medicine physician. It is by definition interdisciplinary because it takes the entire health care team to do this work well, and it provides a set of tools intended to help providers of all types care for the dying and their loved ones. With the support of the Kaiser San Rafael Medical Center physician leadership, the ED nurse management team, and the many compassionate colleagues I have the honor of doing this work with, the project has helped shift the culture around death and dying in our ED.

And throughout our hospital. The RESPECT Project has since been adopted hospital-wide as an approach to death and dying and has been expanded to include information for families about the dying process—a list of bereavement resources, a quick info card, and expanded nursing resources information including a comfort care manual and a guide to relevant community resources.

The RESPECT Project consists of the Emergency Department Comfort Care Protocol (EDCCP) and the RESPECT Practice Tool (download PDF here). The EDCCP pertains to imminently dying patients (prognosis of hours to days) for whom treatment goals are comfort-focused only. It emphasizes the importance of both pharmacologic and non-pharmacologic means of promoting comfort and minimizing suffering, and it establishes a method for nonverbally communicating to all staff that a patient is in the process of dying. When an imminently dying patient whose treatment goals are comfort-focused only presents to the Emergency Department, the attending physician initiates the EDCCP with a Nursing Communication Order listing a series of suggested interventions and orders appropriate medications for symptom management.

The RESPECT Practice Tool is used when a patient dies, whether unexpectedly or as the natural conclusion of a terminal illness or a long life. It provides a structured approach to what can be an emotionally and professionally challenging experience. When a death occurs, the RESPECT Practice Tool helps support providers care for the patient and his loved ones in the best way possible.

In the RESPECT acronym, the R stands for Restore Order. A nurse colleague tells the story of having cared for a teenage girl killed in a motor vehicle accident whose father tearfully asked as he cleaned the blood from his daughter’s face, “Why am I the one that has to do this?” In some cases, the way a dead or dying patient looks when the family is brought to the bedside is how she will be remembered for the rest of their lives. Cleaning vomit from a patient’s face or removing unnecessary medical equipment or trash from the resuscitation suite is not to pretend death hasn’t happened. Rather, it is one small way we can respectfully begin to put the pieces back together just as the family will have to do in the months and years ahead.

The E stands for Explain What Happened and Who Was Involved. In some cases, providing information about what happened between when Mom collapsed and when resuscitation efforts stopped and about who assisted with her care can be helpful to those who’ve suffered a loss. But it is useful to ask permission before providing such information, since it’s important not to get mired in details that can stand in the way of the emotions we are seeking to make space for.

The S stands for Stop and Set Aside Other Activities. Perhaps this should go without saying, but I know I still sometimes forget to hand off my phone when doing this kind of work. This is also a reminder to nurses to get a manager or other team member to look after his or her other patients in order to give full attention to the family and loved ones involved. This work can and should be considered higher priority with appropriate adjustments in nurse-to-patient ratios to ensure the work is done well.

The P is to remind us to be Present. Individuals facing the loss of a loved one deserve our undivided attention. Cultivating presence, especially in the face of another’s suffering, requires practice. To simply bear witness can be profoundly healing.

The second E stands for Empathy. Staff are reminded to step out of their roles and imagine what the people they’re caring for are going through. A dear friend of mine whose daughter tragically drowned many years ago said to me, “There is nothing anyone could have said or done that could possibly have made it OK.” A willingness to imagine what it’s like, to open our hearts to what is part of our shared human experience, is sometimes all we can offer.

The C stands for Chaplain/Clergy and it reminds us that for some, spiritual support is the most important support needed around the time of death. In addition to soliciting religious or spiritual help if desired, our hospital social workers also provide psychosocial support in many cases.

The T stands for Time. Family and loved ones are encouraged to take as much time as they need with their loved one. One family not long ago wanted to hold vigil for several hours even though the Emergency Department desperately needed the bed. Nurses, managers, clerks, maintenance staff and the chaplain all collaborated to find, clean and make available a vacant room elsewhere in the hospital so as to honor the family’s wishes.

The T also stands for Take Care of Each Other. After bringing our full selves to the task of caring for a patient who has died and her loved ones, it is essential that we take care of each other.

Whether a patient is imminently dying on comfort care or has died, the RESPECT Project Placard is placed outside the room. This beautiful image (above) serves as a visual reminder of the important transition occurring inside. On the back of the Placard both the Comfort Care Protocol and the RESPECT Practice Tool are outlined for quick review. The primary nurse involved is temporarily relieved of other duties and the entire interdisciplinary team shares in the responsibility of caring for the patient and his or her loved ones at this difficult time. While many of the interventions proposed in the EDCCP and the reminders outlined in the RESPECT acronym are common sense and might arguably happen naturally, consistently caring for the dying according to the principles of the RESPECT Project in the midst of a busy Emergency Department is easier said than done. The RESPECT Project Placard on the door helps everyone remember what’s important during an experience that survivors will remember for the rest of their lives.

In addition to early training of all staff, several nurses did further training and became Palliative Care Nurse Champions. They serve as a resource for any questions that arise and model the kind of care the RESPECT Project seeks to promote. We periodically bring in professional actors to help in communication training for physicians, with the actors in the role of family members going through the labyrinth of late-stage illness and death. We all understand that this is not the kind of thing one masters quickly, if at all. It is deeply humbling and is some of the most meaningful work we do.

One incident stands out in my mind. I was caring for an extremely elderly man with Parkinson’s disease and dementia presenting with recurrent pneumonia and sepsis. His family arrived soon after he did, and I learned that the patient had been a musician. His family was absolutely certain that confusion and dependence on others for activities of daily living in a nursing home did not constitute a life he would want to continue. They asked us to provide comfort-focused treatment only. We removed the medical equipment from his body, adjusted the room light and temperature as his family felt best, and provided Tylenol for fever and a touch of morphine for his air hunger. The RESPECT Placard was placed on his door and all staff were made aware of what was going on. The social worker, chaplain and primary nurse supported the patient and family in wonderful and complementary ways. And as he slipped away, his family could be heard quietly singing him his favorite songs.

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Dr. Schmidt is an emergency physician with a subspecialty in hospice and palliative medicine at the Kaiser San Rafael Medical Center.
Email: scott.schmidt@kp.org