By Karen Diefendorf
I’ve served as a chaplain with Hospice Care of South Carolina for almost a year now. I’ve been privileged to be invited into the lives of patients and their families. I’m not a novice in pastoral care, but I’m still learning from my patients. I have been surprised at why people who are eligible for hospice care never take advantage of it, and I have learned that all hospices are not the same.
I have also learned some very important life lessons.
Pain Is a Given, Suffering Is Optional
Most of the people I serve know about Job, even if they don’t know the whole story well.
I suspected Tom had his own answer to this question. If I quoted Scriptures that contradicted the premise of his question, I figured I would miss hearing Tom’s answer. First, Tom believed he should be punished because of the things he had done in his life. Second, he didn’t need a theological conversation about God’s justice, but he did need to review his life and choices, repent where appropriate, ask forgiveness, and make restitution if necessary. But it was awkward for Tom. He hadn’t been a kind, loving, warm father or husband, so he needed help beginning the conversation.
Life can have physical pain. And while I’ve learned that hospice is about comfort care or palliative care, instead of curative care, I know we can usually control the physical pain.
The suffering comes from deep within. So, where do the pastor, pastoral staff, and church member fit in? Most likely, all could impact the emotional, mental, and spiritual suffering. We know the symptoms—isolation, loneliness, loss of meaning/value, and depression, just to name a few.
My family will never forget when the men of Vallonia (Indiana) Christian Church came to my dad’s house to put his electric recliner into a truck, take it to the church, and set it in the sanctuary so dad could worship in comfort during services. They did it every Sunday for weeks over the summer, when it was surely an imposition. And in doing so, they minimized our father’s physical isolation, and certainly his spiritual suffering.
Doris asked, “Why do I have to sit here and just wait to die?” As pastors, how do we help people find meaning during the waiting? Doris began to sense her decline, and waiting for “the other shoe to drop” was almost unbearable. We talked about whether she thought her life had been meaningful. Did her life matter? She taught me that terminally ill people need to know they still have something to live for during the waiting.
The movie The Bucket List has become a metaphor for many of my patients, but often their energy and time to accomplish their desires are limited. So, instead of chucking the whole list, Doris and I worked to modify her list to make some of it possible.
I’ve Learned . . .
• Beliefs matter when it comes to suffering, and every person has beliefs that organize how they view life. Those beliefs help them cope with their end of life or their critical illness. Pain and suffering are integrally connected to beliefs and expectations. Beliefs can either do something for us or do something to us.
I’ve learned to listen carefully, not just to what is said, but for the undertones. Some people believe there is nothing unethical or immoral about terminating their own lives in the midst of debilitating, hopeless disease. Others believe the illness is a burden given to them, and they must endure. Hope is always connected to the future, and for many, even non-Christians, there is an idea of an afterlife or Heaven.
Jill was so looking forward to Heaven, not because she wanted to see God, but because she longed to see her mother, who had died years earlier, and that idea made dying bearable.
Sometimes I learn what my patients are thinking in odd ways. One of the nurses called me after visiting Bill, who had made the hard decision to “put down” his 19-year-old dog about six weeks earlier. The nurse was concerned Bill was still grieving over his dog.
I visited Bill, only to discover he really was thinking about whether or not he should be “put down.” Yes, Bill certainly had some grief for his dog, but he really was wrestling over his value and his anticipatory grief of all that he was losing and even now unable to do.
I have discovered people’s beliefs aren’t very consistent with their church or faith group. And sometimes a Christian’s beliefs aren’t even Christian. In such moments, I must choose between helping them become “orthodox” or listening carefully to clarify how those beliefs help them deal with what is happening. I’ve learned I must begin with where they are, not where I think they should be. Then I can develop a relationship of trust. Then perhaps I can guide people toward views that may be more helpful or biblical.
• Pastoral visitation appears to be a lost art. One of my chaplain peers asked me to remind readers “not to lose this ‘ministry moment’ with their church members.” Hospice patients or their caregivers often feel forgotten by their church because they have not attended in months or years due to the sickness or choices they have made.
My friend said, “Encourage the pastors to go and visit them. They want a visit from their pastor. They need a visit from their pastor.”
• Dying is a given—like birth, it is part of the created order—but fear of dying doesn’t need to be. I’ve been privileged to provide spiritual care for almost 100 people who have died these past 11 months. There were multiple kinds of illnesses, but almost every patient experienced the same process at the end of life.
Just like a mother experiences signs and symptoms that cause her to leave the comforts of home and head to the hospital, a dying person goes through a God-ordained process. I find comfort in that. And when I tell my patients that, they seem to gain a little more peace.
I remember what the apostle Paul teaches us about how the Holy Spirit intercedes on behalf of the suffering Christian.
“The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans” (Romans 8:26). I believe that happens when our Christian loved one no longer can respond to us. My patients have taken comfort in knowing that when those last hours come, the most important communication can still happen.
*All names in this article are pseudonyms.
Karen Diefendorf, a retired U.S. Army chaplain, serves as chaplain with Hospice Care of South Carolina.
Read Karen Diefendorf’s sidebar, “What Is Hospice?”