You are about to meet a new patient in your primary care practice, Wendy Jones. A surgical colleague you often work with, Dr Martin, referred Wendy to you.
Before meeting Wendy you review Dr Martin’s referral letter:
Gordon Martin MD
Thank you for agreeing to see Wendy. As we discussed on the phone she is a 67 year old woman who I did a diverting colostomy on two weeks ago. I am referring her to you for ongoing management of her care and in particular her pain.
She has a history of good health until March of 2010. A routine GYN exam revealed cervical cancer. A radical hysterectomy was done with clear margins and negative lymph node sampling. She recovered uneventfully but in February 2011 she was found to have recurrence in the pelvis on surveillance CT exam.
A second surgery was done for de-bulking and tissue confirmation followed by pelvic radiation and chemotherapy. She tolerated this treatment well and was again symptom free until six months ago when she developed a palpable recurrence on clinical exam.
The tumor failed to respond to several combinations of chemotherapy and the chemotherapy made her quite ill. Two weeks ago her symptoms of increasing large bowel obstruction from tumor necessitated the colostomy. She recovered well from surgery except for a small fistula. She continues to complain of significant pain despite large doses of Percocet (7 tabs/day or 100 tablets every two weeks).
I appreciate your willingness to assume her care and help manage her pain. If there is any other way I can assist you please call me.
Gordon Martin MD
cc: Frank Black MD oncology, James Turner MD radiation oncology
Meeting Wendy in Person
As you enter the exam room Wendy is sitting quietly looking calm and collected. Her daughter Tina, was unavailable to accompany her today. She exhibits no outward signs of pain. As you sit down she gazes at you intently and says hello in a soft, polite and controlled voice. After introducing yourself you ask her what are her concerns. She replies without hesitation “that I am suffering from extreme pain” and wonders “if you can do anything to control my pain?”
Dr. Martin referred her to you for care because her previous primary care physician (Dr. Jennifer Jacobs) is not a provider in her new insurance plan.
What are your concerns at this point and how would you address them?
Do you feel Wendy is addicted to Percocet (oxycodone/acetaminophen)?
Wendy will need to choose between adequate pain control with sedation or being alert given the high dose opioid therapy she will need to control her pain.
Wendy is not at the end of life and talking about end-of-life issues now may reduce her hope and increase her distress.
Exploring Wendy’s spiritual/existential concerns should be done by the chaplain and should not be routinely done by other team members.
Introduction to Narrative Medicine
One critical challenge in negotiating a common understanding among the patient, family and medical team is the differing ways clinicians, patients and families make sense of the information they are discussing.
Physicians traditionally use a biomedical perspective to understand illness. This approach organizes medical information in a rational way that resembles an excel spreadsheet with many data points. The information on this excel spread sheet is linear and a medical abstraction of the lived experience of the patient and family. This “hard” data is then used to weigh the risks and benefits of treatments to aid in medical decision-making. Patients and families rarely use such an abstracted, linear approach. Instead patients understand their experience through the creation of narratives.
Narratives are rich, multi-layered stories that are grounded in longstanding values and goals. Each narrative contains facts but also hopes, fears, and memories that may be conflicting and certainly not logical yet make sense within the patient’s singular story. Understanding the patient/family story and integrating the values, goals, hopes and fears it contains are central to negotiating a common understanding of the diagnosis and prognoses as well as developing a treatment plan.