By Kim Scherr, Critical Care Nurse, Misericordia Community Hospital, and writer Suzanne Gordon
In our healthcare system, we do a lot to keep people from dying, but not as much to help them die with dignity. That’s where I come in. I not only help people to live, but also help them to die with comfort and dignity. Consider, for example, a 60-year-old lady I’ll call Mrs. S., who came to our hospital back in March 2015. She had been diagnosed with multiple sclerosis (MS) several years earlier and had been on a holiday cruise in Mexico. She had a sudden heart attack and ended up having emergency coronary artery bypass graft surgery in a Mexican hospital, where she spent several weeks before being transferred to a hospital in Edmonton.
While in Mexico, she had several serious post-surgical complications including an infection in the breastbone, which had been cut open during the surgery. Even though breathing difficulties are reported in only about 20 per cent of people with MS, her illness meant she was very weak and had difficulty weaning from the breathing machine.
After a few unsuccessful attempts to get her off the breathing machine, it became clear this would be a long-term process of weaning. That’s how I came to know her. She was transferred to the Misericordia Community Hospital intensive care unit (ICU) because we have an interdisciplinary healthcare team (respiratory therapists, physicians, a nurse practitioner, nurses, physiotherapists, a dietitian and pharmacists) and are recognized for our creative, aggressive, sometimes non-traditional weaning approaches. We are also known for our success in extricating hard-to-wean people from ventilators.
When Mrs. S. was admitted to our hospital, I introduced myself to her, took her history, performed a physical assessment and ordered all the needed medications and treatments. By mouthing words and scribbling on a notepad, she expressed her desire to go home and hoped that we would help her gain the strength to realize her goal. She was adamant that she did not want to live if she was dependent on a ventilator in a long-term care facility.
Over the course of the next few months, we had small successes weaning her from the ventilator, but despite our interval weaning marathon techniques, there were more steps backward than forward. She developed kidney failure and needed dialysis. She also had multiple pneumonias and continued to have a gaping wound on her chest that was healing very slowly. Despite our attempts at aggressive rehabilitation and physiotherapy, she continued to be incredibly weak from a combination of progressive MS and ICU-related deconditioning.
We had several meetings with her and her husband to talk about progress and prognosis, knowing that her ultimate goal was to get home in time to attend her daughter’s upcoming wedding. Nonetheless, it became clear to our healthcare team that the combination of her respiratory issues, her kidney failure and her MS would make this impossible.
So after much thought and time, Mrs. S. and her husband decided that she did not want to continue to live with this artificial support and requested that her goals of care be changed to do not resuscitate. The healthcare team, the patient and her family developed a well-thought-out plan that included a decision to stop her dialysis and allow her potassium levels to increase until her heart stopped and she died. Since it was clear that she would not live long enough nor be physically able to attend her daughter’s wedding, both mother and daughter wanted Mrs. S. to have the opportunity to help choose her daughter’s wedding dress. They both asked, “Could we help facilitate that?” We didn’t even think twice before saying yes, and our nursing staff made it happen. In fact, we called it our own version of the TV show Say Yes to the Dress.
On one particular weekend, the daughter arrived in the hospital with a couple of the wedding dresses. She donned them in our conference room with full makeup and styled hair and then went into her mother’s room to show them off. Organizing this was no easy feat because the patient was on isolation. Anyone entering the room needed to wear gowns, gloves and masks. Wedding dresses that flowed to the ground were, to put it mildly, not routine attire. To make sure this was safe for the patient and all involved, the nurses lined the floors with blankets to ensure the dresses were safe, then they let the daughter begin the fashion show.
She modelled two dresses for her mom and got her mom’s opinions about which dress she should choose for the wedding. For mother and daughter, this was an incredibly emotional moment. Mrs. S. picked out the same dress her daughter would have picked out herself. That would be her wedding dress. Although our patient was in full hospital garb and on the ventilator, surrounded by monitors and tubes, pictures were taken as if this were a routine wedding day.
A couple of days later, the dialysis was stopped. Her husband stayed with his dying wife, reflecting on photos and memorabilia of vacations they had taken. He read her stories they had written during their travels. Her church family sang to her and played music that she enjoyed. We gave her medications to keep her comfortable so she was relatively pain-free and wasn’t struggling for breath. She simply became drowsy, her potassium levels reached a toxic level, her heart stopped, and she passed away peacefully. She truly experienced what we, as ICU healthcare professionals, would term “death with dignity.”
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