Community in Dialogue
Shadow and Light: Radiotherapy and Radiancy
Shadow and Light:
Radiotherapy and Radiancy in the United Kingdom
Who is the Patient in the Care Journey?
Russ Parker DDiv, Karen Krasner Allen MBA, Douglas W Schoeninger PhD
Roz is summoned to hospital 2 hours away. Roz; not me.
I’m “just” the driver. It feels like a demand, not a request.
We’re in a state. What’s the urgency? It can only be bad news.
Roz wakes one day to find that the swelling in her left leg had gotten significantly larger. Throughout the past year, she thought the swelling was more of “vanity fair”; the natural result of getting older. She contacts her local doctor (GP) who says, “I think we need to have a look at it.”
The GP takes a biopsy. As a result, Roz is summoned by letter to a hospital two hours away; one which was completely foreign to us.
Upon our arrival, we enter an empty waiting room at the end of a corridor. We sit there alone, waiting. Sitting there, we feel empty ourselves.
We think we know why we are there: to go over the results of the tests that had been performed at our local hospital. The doctor we are to see is only a name.
The door opens. A nurse comes in wearing a MacMillan name badge. (MacMillan is a well-known agency in England caring for people with terminal illnesses.) She does not introduce herself. It is the “MacMillan” factor that creates a shock.
“She’s here for you, Roz.” “No, I’ve only got a lump on my leg.”
The MacMillan nurse seems to expect somebody else to be in the room. (Doctor? Administrator?) She just stands in the doorway.
“Why are you here?” “Have you come to offer counsel and support to my wife and me?” “I can’t talk to you until I have seen the doctor.” “Then would you mind leaving the room until the doctor arrives, please.” We never see this MacMillan nurse again.
Obviously somebody knows the test results and arranged for a MacMillan nurse without consulting us. I’m angry: “Somebody’s made decisions for us.” Somewhere down the line someone said, “You’re going to die.”
A doctor comes in 45 minutes later. He addresses Roz: “Are you Mrs. P? Come with me please.” He doesn’t address me at all. So I say, “I’m coming in with you.” The doctor responds, “Okay, if you want to.” The way each of us are treated makes me more determined to be there for Roz.
The doctor explains the seriousness of the lump: “You have cancer, a rare and aggressive form of sarcoma. You will require radiotherapy and surgery as soon as possible.”
Any possible surgery on Roz’s leg is preceded by 40 sessions of radiotherapy to create a necrotic border around the tumor, and to slow the tumor from metastasizing. We are sent to the MacMillan Cancer Center in London, a two and one-half hour journey each way: a ½ hour walk, 1 hour by train, a 10-minute walk to the underground, 30 minutes on the underground, another 15 minute walk to the cancer center. We go five days a week for eight weeks.
We are terrifically well cared for. Roz, amazingly, has very few side effects. I feel like I am going to a spa. Roz is treated as an old friend, and swept in for treatment immediately. I am treated as importantly as Roz from the moment we arrive. Little signals: “How are you? There’s the coffee. Roz is almost done. Your wife is doing really well. We will see you next time.” These little signals make a loud noise in my heart.
Roz has surgery at the Middlesex Hospital. They push her in a bed, marching from her hospital ward through the cold outside pathways, into a dilapidated building with no elevators. I walk alongside her, stopping only at the door of the operating theater: “I’m just on the other side of the wall.” I stay there and pray, eventually waiting in the hospital cafeteria. I head back to her hospital ward, sitting in the space where her bed had been. A couple of times I am told, “you needn’t wait. You can go home.” No one contests my presence. I want to stay.
The next day I am sitting by Roz in her bed in the ward. A different nurse tells me, “You can’t be here when the doctor comes on his rounds.” “When is he coming?” I want to be there to hear what he has to say. I’m not just the driver. She makes me leave. I go back to the cafeteria. When I head back to the ward I wonder if it is “safe”? Will I be allowed in now?” I’m 68 and I’m feeling like a 10-year old boy, afraid I will be “caught” for trespassing. I’m thinking, “why are they not calling me to inform me about my own wife’s status?”
A post-operative CT scan shows a second tumor in her gut which require an yet another surgery, which is conducted at the Royal Free Hospital. The time between the two surgeries is less than 6 weeks.
“It’s not a monochrome life we live. There is light as well as shadow.”
We are told that Roz will be in the intensive care unit for a week, on the ward for a couple of weeks, and will use a walking stick for the rest of her life, always walking with a limp.
Defying all odds, Roz is in the ICU for a matter of hours, on the ward for just a few days, and never uses a walking stick of any sort. She has tumors throughout her body which “have gone to sleep.” We are informed that the sarcoma will metastasize and her life expectancy is about 18 months. It’s been 4 years. They comment about how Roz shines all the time.
The view from my room: I feel like I have no light radiating from me. I am still feeling diminished by having to confront the MacMillan nurse. “I’m just the support cast.” Roz is radiant. She gets the news and is the participant. Being the also ran, there is no room for me to shine…I’m in the shadowlands. It takes me lot longer to get into balance. It’s not that I feel I don’t matter. I feel left out. I am the peripheral support act.
Who Is The Patient? Who Relates To The Patient?
· Everyone who is impacted by the patient and his/her condition; spouse, parent, siblings, children, and friends are also the patient. Every voice counts. Every one matters. Attending to the person and all the significant people they come with are of equal value. (The Contextual Principle of Multi-directionality). The patient is never “just” an individual.
· Information received from medical care team has to be clear and shared with others who need to know. To make it possible for caregiver and patient to help the healing process. “Immediately after the surgery her voice won’t be there; only mine” (the caregiver(s)). We need to be aware that we are not just healing diseases; we are healing people.
· The meeting itself between and among patient, caregiver(s), and health professional teams must become a sacrament of engagement (inquiry and listening). The patient and caregiver(s) rarely get to see or interact with surgical team members. During post-surgery rounds, “the surgeon hardly stopped by my bedside. Am I entitled to stop the surgeon when he makes his short visit with me?”
· Whenever a person enters hospital for surgery of any kind, they do in fact enter the world of the medical team. And to some degree the medical team enters the world of the patient. More often than not, when you enter the medical world you are “giving up your passport.” It’s the medical team’s world now: their world, their rules.
· Nonetheless, patients pick up cues from the medical team, just as patients expect the medical team to pick up their cues beyond the specific medical issue. A look of fear, sadness, sense of “being off”. Cues offer us a window into the well-being (or otherwise) of a medical team member as well as the patient.
· Touch, time and tenderness are three essential ingredients that must weave through the process of healthcare. They convey opportunities for self-awareness in the patient and medical team. A patient moaning at 3:00 p.m. every day. Pain medications have no impact. Why? Inquiry reveals the source: “what happens at 3:00 p.m.?” “It’s when my children get off the bus and I’m not there to greet them.” Consequently they play spirituals for him daily at 3:00 p.m. to soothe his soul. The doctor doesn’t know if the patient doesn’t tell him/her. Equally, the doctor needs to inquire more deeply of the patient.
These questions are a factor of entitlement: they relate to the patient, his/her family, friends, and caregivers; and medical teams. In our culture we are trained to be passive: “they are the experts, they tell us what it is, we don’t ask.” “Do I have the freedom to advocate for myself or others?” “Why don’t I always take that freedom?” “Whose turf am I on?” Can I exercise my voice without making a federal case?” “What is my footing with the medical team?” We -- patient and caregivers -- need to challenge our tendency to surrender our rights and authority before entering into a doctor’s office. Correspondingly, the medical team needs to challenge their tendency to a purely clinical and diagnostic approach, and to include the patient (person) needing healing and his/her caregiver(s).
Consider the attached Cleveland Clinic video (2015), which highlights the necessity of touch, time and tenderness raised in this pointer. https://www.youtube.com/watch?v=cDDWvj_q-o8&t=0s
Why Is Including Others Who Are Directly Impacted So Important?
· The caregiver takes the patient home and makes sure there is follow through on medical instructions and appointments.
· To this degree, you are part of the medical care process. Therefore, you have the right to advocate on behalf of the patient’s needs. For example, the need to change medications that are having adverse effects.
· The medical team can only treat the “whole” patient knowing some of his/her story and context; as compared to simply treating a set of body mechanics. It’s the “whole” person and his/her caregiver(s) who receive data, instructions, life sentences in this clinical process.
To treat the a person in context, it is essential that the medical team acknowledges patient’s and caregiver(s)’ contributions and role through appreciation, validation and legitimization. Patient and caregiver(s) are essentially part of the medical team
Taking Back Ownership
· How can the medical team help the patient and caregiver overcome passivity in the medical process? For example: A medical team’s active inquiry into the patient’s experience and context, and respect for the patient’s knowledge of his/her own body.
o “What is your previous experience of being under medical care?”
o “How are you feeling now that you’ve heard your diagnosis and medical recommendations?”
o “What previous experiences with medications and types of treatments do we need to take into consideration?”
· How can the patient and caregiver overcome passivity in the medical process. We need to recognize that we carry an age old assumption that we are there to be told what’s wrong, what “they” are going to do, and what is expected of me. It is this assumption we as patient or advocate need to challenge. For example:
o Ask the medical team questions to clarify terms and instructions.
o Start a dialogue with the medical team. Risk being viewed as intrusive, pushy, “out of line”.
o Assert information about things that the care team should know about the patient (e.g., medications to which the patient has a negative response, the patient’s history in the medical environment.)
Both the patient/caregiver and the medical team need to be trained and expected to inquire, to inform and to listen. It is possible and it does exist.
Post Script: Five Major Medical Interventions in 5 years
1. Radiotherapy and Surgery: Leg. Contrast between objectification (MacMillan nurse in example above) and direct address (radiotherapy and surgery medical team). (Non-person, vital person, non-person.)
2. Radiotherapy and Surgery: Gut and kidney. Radiotherapy and surgery 4-5 weeks after original leg surgery. Post-operative reflection of the surgeon: Do you pray? The tumor was dead.
3. Surgery Only (misdiagnosis): Groin Inflammation. The original team thought the inflammation was a cyst and scheduled surgery accordingly. The “cyst” was a tumor which had to be removed immediately. The original medical team left her under anesthesia, on the operating table, until a specialist came in to remove the tumor.
4. Radiotherapy Only: Neck (many tumors in her neck). Radiotherapy one (1) year after groin surgery. After the 4th lot of MRIs, the oncologist said, “people with your kind of rare sarcoma normally do not live 18 months past diagnosis. Here you are three (3) years later. All of your tumors are dormant. However, one in a particular part of your neck has progressed. Radiotherapy is necessary.” Radiotherapy required a protective mask covering her face and neck. The mask was strapped tightly to the bed.
5. Surgery Only: New Pelvic Tumor. Nine months after neck radiotherapy. No more radiotherapy and no chemotherapy possibilities. Surgery and prayer are only options left.
Now she goes for check-ups every three months, reduced from every six months.
Top to Bottom: Doug, Karen, Russ and Roz