Giving the Gift of Dignity

Sickness robs patients of their dignity. It can be a debilitating experience that makes patients feel even worse than their disease. The kind of loving care the hospice staff provides to patients and their families is exemplified in this story from Erin Shrader, a registered nurse, and executive director of AseraCare Hospice in York, Pa. Erin received a call at 7:30 p.m. one Thursday while she was still in the office.

“That day was particularly challenging, as we were beginning care for five new hospice patients. My staff were very stretched as they accommodated the needs of these new patients and families and continued to balance the dynamic needs of our current census of around 100 patients. I received a phone call from two frantic daughters whose father, Daniel, was dying. They didn’t know what to do and needed help quickly.”

“I realized that our entire team was engaged in caring for our patients, and no one was available to help. When I called Daniel’s physician and the struggling daughters, I learned that the patient had declined rapidly and was suddenly unable to perform his own personal care, a task his daughters had never needed to attend to before. They didn’t know how to bathe and dress his fragile body; this was their father, and they were uncomfortable in the role of intimate caregiver. Julie, the older daughter, had worked all day and been up with her father all night the night before. Her exhaustion was evident in her quivering and raspy voice through the phone lines.”

“I arrived around 8 p.m. at the quaint and tidy rural home. Julie greeted me in tears. ‘God sent us an angel!’ she exclaimed. That’s when I knew this was going to be a special night with a special family. Julie introduced me to her younger sister, Natalie, and Natalie’s son and daughter, who had come in from New York to help with Daniel’s care. 

“I learned that the patient had declined rapidly and was suddenly unable to perform his own personal care.”

“They led me down the narrow hallway to a small room at the back of the house where their beloved father and grandfather was staying. Before they opened the door they warned me, ‘Dad can get a little fresh, so just know that he’s really harmless.’ This wasn’t the first time that I had worked with gentlemen described as ‘fresh’ — another indication that this was going to be an interesting night. “I found Daniel sitting on the edge of his bed, both arms limply slung over his rolling walker. His nasal cannula was only in one nostril. His thick, curly, white hair was badly disheveled, and the room smelled strongly of a failing human body that needed a good cleansing. He was only half dressed — wearing a cloth-zippered jacket over a cotton polo shirt with a white T-shirt underneath. His legs were bare, and on his bottom he wore only boxer shorts. “On the seat of his rolling walker were clean warm clothes that he just didn’t have the energy to get into.

My heart immediately swelled and sank with this vision of a dignified man, reduced to the frailty of his failing heart and lungs that just couldn’t exchange enough oxygen for him to do the simplest task of putting on his own pants, lifting his arms to comb his hair or lifting his soiled shirt over his head. “I knelt before him to introduce myself. Daniel was nearly blind from macular degeneration, but he told me he could tell I was beautiful from my voice. He told me he was a car salesman and asked me what I drove. When I proudly replied that I drove a Toyota that had great gas mileage, he immediately informed me that I needed a Nissan — they have much better transmissions. I knew I was going to like this man. He was charming, soft-spoken, and even though his eyes were dulled from blindness, they still sparkled. I knew that this quiet man needed to have his dignity restored — it was absolutely the most important thing, and I could do that for him.

“I went to work gathering his deodorant from the bedside table, his hairbrush, toothbrush, and soap and lotion for a bed bath. The whole time that I bathed him in his bed, changed his colostomy bag, put lotion on his back and feet, and brushed his thick hair, he told me jokes. And they were good ones! After I wiped the tears from my eyes resulting from a long, hard laugh, I noticed that Daniel was laughing too. As he laughed, I observed the tip of his nose turning a dusky pale blue. Even with his nasal cannula in both nostrils delivering four liters per minute of oxygen, he wasn’t getting good perfusion. I asked him if I could help him lie back in bed. I lifted his swollen legs into the bed, tucked an extra pillow under his head and covered him up. “After calling his attending physician for comfort and sleep medications, his granddaughter headed out to the 24-hour pharmacy. I sat down with Julie and Natalie and told them what I was seeing. Based on how rapidly he had declined, I could only guess that they only had a short amount of time left with him.

“They had known this intuitively. They asked some questions and expressed their agreement with hospice care. I then headed back to Daniel and explained his Medicare hospice benefit and he signed his own consents. Every single paper. Due to his advanced blindness, he couldn’t see where to sign. I guided his hand so that the tip of his pen would be on the signature line, and he painstakingly signed every last form with the elegant signature of a man who took pride in his name on paper and what that commitment meant. “His granddaughter arrived from the pharmacy and we gave him the medicine. While he rested, letting the medicine ease his struggle to breathe, I sat at the kitchen table and listened to Julie and Natalie tell stories about the ‘good days.’

By midnight his forehead was relaxed, his respirations were down, and he had taken one pillow out from under his head. “By this time the sky had opened into a torrential thundering rain, which is so common in Pennsylvania in late August. The family insisted that I stay until the storm passed, and offered to make me food, coffee, or provide a bed on the sofa. I thanked them for their hospitality, for the honor of meeting their family and helping to care for their father, and for the gift of seeing the power of a family united. We exchanged hugs and gratitude, and I set out into the dark rain.

“The next day, Daniel died in his own bed, surrounded by his daughters, his son from Maryland, his granddaughter and great-grandson, the hospice nurse and the hospice social worker. Daniel did not speak to anyone after I left that night. The last thing he told me was how grateful he was for his daughters and the relief he experienced. The hospice aide visited earlier in the day and gave him a clean shave and washed every nook and cranny of his tired body. Daniel was restored to the dignity that was so important to him, and his family was able to remember him, in a way that was much more in line with the man that he was. “I will never forget this night, this man or this family. Daniel and his family are an example of the reason I became a nurse, and why I tirelessly serve hospice and its ideals. We do amazing things in this world, and I am proud to be a part of it.”