By Frederico G. Borche-Gianelli
The spiritual dimension is not always is fulfilled with religion, including for Catholics. Visiting patients and actively listening to them as they share their faith tradition, we can explore deeper by asking how their faith tradition is helping them at this time, or by offering a prayer or sacrament. Those approaches will not hurt the patient, and maybe will make us feel as if we accomplished something.
However, it doesn’t mean that we, the professional chaplains, are addressing patients’ spiritual needs and spiritual pain. Palliative care provides another approach that may lead us to discover a patient’s spiritual pain, which really should be our focus. This is one of the aspects of palliative care that has been fascinating for me and a motivation to grow more in this field.
When we use a holistic approach, open to the entire person’s dimensions and not just the religious aspect, we can connect with a most profound inner world. In my encounters, I ask, “Seems you have been through a lot (pause). What gives you strength to be alive? Or what helps you to go through all of what you have been through?”
Their first answer, in my experience, reveals their journey, their agenda, what they really are processing in their hearts and minds. Usually, their relationship with a higher power comes third in their priorities or does not appear at all. It doesn’t have to do with a particular faith tradition. The first answer most often relates to a specific human being — a family member, a significant other, a loved one, a group of people. This relationship is what seems to bring hope, meaning, sense of connection, and especially at the end of life, a sense of healing through forgiveness.
I remember Francisco, a 65-year-old Latino gentleman with an advanced cancer with poor prognosis, starting to process the reality that he would die from his illness. He identified his faith tradition as Catholic and had a wife and grandson living at home with him. During one of my visits to Francisco, he was sharing his life history with me, and as I was actively listening I was also collecting information in my mind.
In general chaplaincy we do not have an agenda, but in palliative care, we do have what I call a gentle agenda. It is to identify a patient’s inner self-resources, assess spiritual pain, and engage in processing — if patients wish! Francisco told me his reason to live was the responsibility of raising his 13-year-old grandson, the joy in his life. He also said that was his reason to get more treatment and to endure all the side effects and procedures. He didn’t understand at that point that all the treatments were palliative, not with the goal of a cure but to do better symptom management.
I asked, “What worries you the most?” He responded, “Dying and not being there for my grandson as he grows up.” I have found when the spiritual dimension is fulfilled by connections, those significant relationships can actually become a source of spiritual pain connected to one of the three frequent fears of death: fear of physical suffering, of leaving the loved ones, and of what comes after life.
After I shared the information with another member of the palliative care team, they talked to Francisco about palliative treatments that are not meant to cure, and goals of care that address quality of life rather than quantity of life. He decided to go to home to enjoy life with his grandson, and to finish a few projects with his grandson and his wife. Addressing his spiritual pain around the fear of not being there for his grandson, he created a plan with his wife and other relatives so that his grandson would continue receiving support when Francisco was not in this world for him. Francisco accepted support from the children’s life specialist and from me to engage his grandson in an honest conversation breaking the bad news and creating memories like a picture book, a letter, and a handprint.
Francisco was thankful for the support through the honest conversations. He went home with good symptom management and an extra support group, and he didn’t die until few months later.
It is not about not dying. All of us will die. It is about where, how, and surrounded by whom we will die. As a palliative care chaplain, I feel privileged to make a difference in people’s lives by not just listening but engaging those uncomfortable conversations that lead to healing, joy, peace, and reconciliation; in short, to a good death.
Frederico G. Borche-Gianelli, BCC-ACHPC, is a cancer care chaplain at Stanford Health Care in Palo Alto, CA.