Event 1: Introduction to Narrative Medicine

Meet Wendy

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

General Surgery

Dear Colleague:

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.

Sincerely,

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?

Question

Do you feel Wendy is addicted to Percocet (oxycodone/acetaminophen)?

Incorrect

Correct. Research documents that the risk of addiction (as defined by uncontrolled opioid use associated with socially destructive behavior) is rare in pain caused by cancer and other advanced diseases. Opioid physiologic dependence is associated with symptoms and signs if the opioid is suddenly stopped and will occur in nearly 100% of patients on long term opioid therapy. Health care providers consistently struggle with the concepts of dependence and addiction.

Question

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.

Incorrect

Correct. 85-90% of cancer pain patients can have their pain well managed on simple oral opioid regimens with minimal side effects. This includes minimal sedation. Warning patient’s and families of transient sedation during dosage increases is important. However, cancer patients with well controlled pain demonstrate improved cognitive function over patients with poor pain control. When cancer pain patients were tested using a driving skills test their performance was significantly better with adequate pain control on opioids, than when pain was poorly controlled and off opioids.

Question

Wendy is not at the end of life and talking about end-of-life issues now may reduce her hope and increase her distress.

Incorrect

Correct. We all know that we will die we just don’t really believe it. The end of life is a natural part of the life cycle. It begins when a person’s abilities either physically, mentally or both begin to diminish due to irreversible disease. For some this period is extremely short, such as someone who dies suddenly in a car accident or of a heart attack, lasting a matter of minutes or seconds. For others it is a long affair lasting years, such as a patient with Alzheimer’s type dementia or end stage lung disease. Each time such a chronically ill patient has a serious medical deterioration it could be the physical end of their life or not, depending on the goals and spiritual beliefs of the patient and her/his family. Exploring early with the patient and family their understanding of the illness, important issues, spiritual beliefs, past experiences with serious illness, and family support will allow for a much richer and well thought out end-of-life experience for all involved including their doctor. When skillfully approached research shows that patients, families and health care providers have a better quality of experience and more importantly a better quality of life.

Question

Exploring Wendy’s spiritual/existential concerns should be done by the chaplain and should not be routinely done by other team members.

Incorrect

Correct. When a patient has far advanced illness for which medicine has no therapies that can change the ultimate outcome, what is “good medical care” for that particular patient and family? Most patients and families reply, “medical care that allows me to live a life that I enjoy, makes sense to me and my family and allows me to be who I have always been or need to become in this situation.” There are no blood tests or CT scans that give us such personal information. Instead we need to understand enduring values, beliefs and relationships that allow such a patient and family to make sense and meaning of their lives. For many patients and families it is the transcendent and spiritual dimension where such values and meanings dwell. By understanding a patient’s spiritual beliefs we can insure that the medical treatments we provide support a meaningful life for the patient and his/her family. If we only pay attention to the physical dimensions of life, we will never know if what we provide medically inhibits or supports a life consistent with the values and meaning of the patient and family. It is impossible to treat the total pain experience without an understanding of the patient/family spiritual/existential values and goals.

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.