Spiritual Care from a Patient's Perspective
At the Oates Institute the question we have been asking is “How well prepared do I want my spiritual caregivers to be?” We ask this knowing that at various points in life, we and those we love are all going to be patients and family members. It is personal. I found myself changing the question this past month when I became a patient again for a second round of surgery and chemotherapy. “What do I want, need, and expect from my spiritual caregivers?” I made a list.
As a pastoral educator I often ask the theoretical questions related to what I think I want spiritual caregivers to be able to do as they work with patients, family members, and others who are part of the health care team. As a patient, I started asking the practical questions related to what I want, need, and expect as the consumer of health care services.
Prior to my first round of surgery and chemotherapy, my surgical oncologist told me that my job was first to survive the procedure and then to recover. Since the cytoreductive surgery with the heated intra-peritoneal chemotherapy is a challenging procedure to recover from, he advised me to think of it as a marathon. He reminded me of this again as we prepared for the second round.
What I learned the first time around is that it takes both outstanding medicine and a tremendous amount of heart and soul energy on the part of the patient and family members. It takes the kind of optimism that rolls up its sleeves, breaks a sweat, and does the work to get over the hill. Going in to the operating room I knew that I had an outstanding medical team ready to employ cutting edge medical practices. I was in one of the thirty-five facilities in the U.S. that does this procedure. I was in good hands (and good hands were in me, so to speak).
But who helps me with the recovery part of this? Who helps me identify and tap into my resources and other resources to do the work involved in recovery? Who helps me learn to adapt to the life changes brought on by a cancer diagnosis? Who helps me nurture my sense of hope and sustain a positive attitude toward living meaningfully? Who helps me tap into my spirit? Who helps me bring the resources of my faith and spirituality into play? Who helps me bridge these resources from hospital to neighborhood and community?
As a patient, I am looking to my spiritual caregivers for this help. Is that fair? Frankly, as the customer, I don’t care. That is what I want and expect. And as a Boomer, I am used to being able to get what I want as a customer.
What does this mean? It means that as a patient I want my spiritual caregivers to be aware of why I am there without me having to be the one to bring it up. As a patient, I expect everyone on my care team, including chaplains, to at least glance at my chart to know why I am there and give some thought to the implications for care before walking in my door. It is a point of entry for conversations related to how I am doing with my recovery but with my diagnosis and prognosis. It opens the way for conversations around how my family members are doing with it and what my future needs may be.
While in hospital I realized that as a patient, I count on my spiritual caregivers to take the initiative to help me have some necessary conversations with myself and with my family. I count on them to help me recognize resources I have available to me, resources that I may be overlooking or minimizing. As a patient I count on the skills that my spiritual caregivers have acquired to help me overcome both my denial and my reluctance for talking about some of the things I need to talk about..
As a patient, my inclination is to wait for my spiritual caregivers to initiate these conversations. I’m just trying to restore some normalcy so it is easier for me to have conversations about basketball, weather, churches, and my spiritual practices in general than to get into illness, hope vs. despair, and how my sense of faith and spirituality might help me cope with my current losses and changes relates to how and how long I might live.
One of the other things I realized is that even though my hospitalizations have been long by today’s standards—a total of twenty-nine days over two stays—the time in hospital when I have access to the spiritual care specialists for help in addressing these issues is also when I am most focused on the immediate concerns of overcoming pain and recovering mobility and bodily functions. When I am home continuing my recovery the questions of hope and despair, loss and change, heart and soul start kicking in big time. By then I have lost my access to those specialists who are prepared to help me with the spiritual parts of my recovery. I have home health and follow up appointments with my surgical oncologist, but to whom do I turn to with my questions and follow up needs with these matters of heart, soul, and spirit?
I hear Peter Senge's voice in my ear reminding me to always look for my hand print in the system. How am I contributing to what is and what can I change in what I do that might influence change within the larger system? Then I hear Wayne Oates' voice in my ear, “How can we teach them?”
As a pastoral educator, I start asking:
- How does what I learn as a patient affect what I do as the director of a learning community for spiritual caregivers?
- What are my opportunities to share what I discover as a patient?
- How might I help us to learn from the perspectives and experiences of other patients?
- What might I do to help bridge spiritual care from hospital to community resources, including congregational communities?
- How do I develop learning opportunities to help congregational caregivers learn how and when to be present? And how do I help them learn to make referrals to counselors, social workers, and other resources within the community?
- How do I help pastoral counselors and family therapists learn to speak to these spiritual care needs and desires?
In asking these questions I see a lot of opportunities for future publication and seminars from the Oates Institute, both for our clinical members and for our future congregational members.
Life is always changing for individuals, families, and organizations. Coping and learning to adapt creatively and meaningfully to change requires a lot of heart, soul, and spirit energy. Our spiritual caregivers are uniquely able to help us with this.
Dr. Chris Hammon is the Executive Director of the Wayne Oates Institute and Affiliate Faculty in Leadership for the Drew University Theological School's Global Online Doctor of Ministry Program.