The patient was a 57-year-old with ALS and multiple chronic disease conditions who was admitted to Parkview Terrace. He was a quadriplegic with extremely limited ability to move and was ventilator-dependent. He was not able to move his chin to use any type of call light and staff had to listen closely for him when he called for assistance. He was able to eat, which brought him great pleasure.
Shortly after admission to the unit, the patient expressed his desire to discontinue aggressive treatment and focus on hospice, comfort care. During a recent, previous hospital admission he expressed this same desire, however, he rescinded his decision following conversations with multiple family members. The patient had been a truck driver for 35 years and had traveled throughout the country. He never considered being confined to a hospital bed as a good quality of life.
He met with Palliative Medicine, Psychiatry, and Hospice, expressing his desire to discontinue aggressive care which meant coming off the ventilator. The patient was able to articulate his needs and desires clearly and able to talk for short periods of time. He shared with his providers and caregivers that he would like to just die naturally and comfortably. He wanted to pursue extubation once he had an opportunity to see friends and family for the last time, and to experience a few favorite life moments. The staff enjoyed caring for the patient and grew attached to him.
It was hard for them when he made the decision to be removed from the ventilator and wanted to make his last week special. The staff worked together to arrange visitation one person at a time to ensure that he was able to say his final goodbyes. During the patient's final days, the nurses became very close to him and he would share stories of his life with them. The nurses started to bring in his favorite things:
A Dunkin' Donut blueberry donut and coffee (he was so happy to finally have real coffee he said).
Cheesecake from a bakery.
His favorite flavor Ben and Jerry's ice cream that the nurse had to go to multiple stores to find chips and candy.
One nurse also brought in lottery tickets because he told her it had been so long since he got to scratch any off. They held his hand and scratched them off with him. This was the same nurse that he then requested to be his final nurse on the day he chose to have the ventilator turned off.
On Sunday, the day that the patient's daughter had chosen to be the day to remove the ventilator, the ANM took care of the nurse's other patients so that she could remain 1 on 1 with him and not leave his side. The patient took his last breath with his family members and his favorite nurse at his bedside. The team was very grateful for the support and teamwork from all disciplines and especially to the chaplain who started a code lavender and who lit a (battery operated) candle that stayed lit through Sunday.