Being a Voice for Patients: Hospice Chaplains as Advocates
Posted by Maria Mento, Chaplain
There are so many patients who have impacted my life, but I’m going to share this story for Pastoral Care Week (October 21-27). It’s an example of how chaplains are not only spiritual counselors for patients, but also serve as their advocates.
There was a cancer patient, an Irish man who was quite ill by the time he came into our hospice care. He lived alone in his home. He was in his 50s, and his wife had died of cancer two years prior. He had lung cancer and was still a smoker, so we could not bring oxygen into his home. He was becoming weaker and weaker, his house was in a disarray, and it was becoming unsafe to leave him in the home by himself.
All of us on his hospice care team worked closely together. The social worker and the registered nurse were working on getting him to a nursing facility — to which he was very resistant and fully decisional. The case was becoming frustrating for the staff and the patient alike. The patient could be angry, dismissive and rude to the staff. I often did joint visits with other team members, but I began visiting him alone, so he could tell me what was on his mind.
It took a couple of visits before he began to trust me. I told him that I would be his emotional voice at our care team meetings. That was missing for us, because he was not telling us his reason for not wanting to go to the nursing facility.
He shared that he had been an active man — a bit of an adventurer, a traveler. There was evidence all over the house of the places he had been, and there were also many of his wife’s things. He said that his wife was the love of his life, and he could still feel her in their home. He was surrounded by all that he had been, and it made him feel alive. He said even his smoking, which he knew was killing him, was part of who he was. If he gave everything up and moved into a nursing home, that was the same as dying to him. And it made him so angry that there were all these folks trying to decide his life for him.
So, as his chaplain I became his voice at our care team meetings — explaining and often fighting for him to fulfill his goal of staying put. We were able to engage a friend, his son, and a sister to stay with him some of the time. On my last visit at his home, he was very ill and was in bed, which was unusual. He had refused a hospital bed. His was an antique bed trimmed with lace. He told me that his wife had loved their bed, and she had decorated it. He felt her strongly there and said she had shown up to him the previous night. At this I thought that he was probably close to death. So, I informed the nurse. That night, he fell. His friend called us and he was transferred to our Ada F. Addington Hospice CareCenter at Rush University Medical Center.
I went to see him the next day, and he was very weak. He said that he liked it there, and they were taking good care of him. The talk among the staff was that he would not be able to go back home because he was too frail, and if he left the CareCenter, he would have to go to a nursing facility. But I did not talk about that with him.
I saw that he was tired, so I decided to leave him to rest. When I was about to walk out of the room he called my name. I turned around and he said, “Thank you for helping me keep my life.” He then blew a kiss to me and whispered that he loved me, which made me cry. He died hours later.