Kidney professionals face the grief of a patient death
Our lives are shaped by ritual: the tossing of mortar boards at the end of graduation, for example, and the tossing of the bouquet at a wedding. Yet, just as happy events are marked with traditions and customs, so are sad ones. No one does tradition better than the military: the missing-man sortie that has a solitary jet pulling away and flying solo into the sunset, the rider-less horse, the burial at sea, the gun salute and the heart-wrenching trumpet “Taps” salute at the end of every ceremony.
But what happens when we lose a patient on dialysis? We asked advanced practitioners from across the United States to tell us what happens when they face the death of a patient in their dialysis clinic. How does one go from offering CPR and ventilating a patient, rushing them out the door to the emergency department — for what you know is a trip of no return — and then pick up your rounds and care for the other patients in the clinic?
Sense of family
For those in outpatient dialysis, patients become like family. There are some who reach our hearts, and their loss is a raw wound in our psyche. Sometimes, a patient or a staff member just needs to talk and remember. For many providers, caring for patients is an emotional investment. We have patient stories and sharing these can allow us to “laugh with our tears.” Staff can often bring up warm memories of even the crustiest, most sour curmudgeon of a patient.
The empty chair can seem like a reproach of our failure to save a patient despite the fact we realize patients on dialysis have a high rate of mortality and, in some respects, time spent on dialysis is borrowed time.
One advanced practitioner (AP) who came to nephrology after practicing orthopedic surgery for 10 years, related, “The death rate surprised me. I turned to one of my doctors, at another funeral, and pointed out that I had lost more patients in 1 month of nephrology than 10 years of orthopedics.”
Mourning also has its customs. There is the wake, visitation and, in some cases, Shiva. Individual dialysis units and staffs develop their own customs. Often, the staff visit at the funeral home and/or attend the service. If there is a program, copies are brought back to the unit and placed for staff and patients to see. An obituary in the newspaper is often hung where all can see. This is not impacted by HIPPA because it was in a public forum. Some units place flowers in a prominent place in the clinic with an ”in memory” sign.
Some APs and medical directors write the family and personalize it with some remembrance specific to that patient. Although these notes are often difficult to write with the loss so fresh, feedback from the family is overwhelmingly positive as the family often has made friends with the rest of the dialysis shift patients and staff. We often forget the family is part of the social continuum of health care and they have lost not only their loved one, but the social community that is dialysis.
To help staff cope, a dialysis unit in a children’s hospital established a memorial area in the workroom. There is a small succulent garden, a battery-operated candle, a bowl of river rocks and a sign. The candle is lit in memory of a child gone. The rocks are to hold, say a blessing, pass on a thought, say a prayer and replace when ready. The plants remind us that life does go on.
Methods of coping
There is no one-size-fits-all for grief. One manager of a hospital-based outpatient dialysis unit has the luxury of having a hospital chaplain make regular rounds in the unit. How one reacts to a loss and deals with it depends on many factors unique to that individual. Some relationships go back 20 years or more, while others are just months old. A person’s spiritual beliefs shape coping mechanisms. Several APs mentioned they relied on their faith and often said silent prayers for the deceased as they went about their work.
Most providers believe they must support their staff and patients. APs ask, “Who supports us?” One said she felt left out because she rounds on several units and often comes in a few days after a death. The staff goes about their business and she feels left alone with her loss. Most organizations offer employee assistance, which is confidential and can offer support. One manager said using such a resource was beneficial to her as she was able to realize that grieving was normal and healthy instead of unprofessional.
Sadly, some leave nephrology. One respondent found herself taking personal responsibility for each death and blaming herself for what she should or could have done. She now works as a hospitalist where she still cares for nephrology patients but on a short-term basis. She reflected that had she been in a practice which encouraged talking about feelings and coping, the outcome might have been different.
We especially appreciate those who have shared stories with us. We heard about special patients, like the bilateral amputee who had been on dialysis 27 years. When he became depressed, he would say “I am going home and kick the bucket” and staff would remind him he had no feet, and both would share a laugh. Then, there were two friends who usually picked up doughnuts and coffee on their way to treatment. After leaving the doughnut shop, they were in an automobile accident which took both their lives. Another patient always brought his boom box to his third-shift slot. After his death, the unit was quieter and not as upbeat.
We thank the many nurses and APs who took time to share their thoughts and experiences on death and loss. For some, the writing seemed to provide an emotional release and comfort.
We find ourselves in the same position. After 10 years of directing the Advanced Practitioner column, we are turning over the writing duties to other National Kidney Foundation volunteers. We want to thank all our contributors during the years. Without your input, stories, ideas and support, we could never have written more than 45 columns. Thank you for a wonderful decade.
- For more information:
- Jane Davis, DNP, CRNP, is a practitioner with the nephrology division of the University of Alabama at Birmingham and a Nephrology News & Issues Editorial Advisory Board Member.
- Kim Zuber, PA-C, is the executive director of the American Academy of Nephrology PAs in St. Petersburg, Florida.
Disclosures: Davis and Zuber report no relevant disclosures.