Recently, my sister developed a rare type of gynecologic cancer and almost immediately she began asking me what all of it meant: the diagnosis, the likely therapy, prognosis, etc. My sister liked and trusted her doctor, but she often wanted help to interpret what he said. I helped her understand what she was facing, and I came to realize that the medical landscape had not advanced much when it comes to helping our patients understand and deal with the impact of a cancer diagnosis. To expand that point, let me put you in my shoes.
Hitting Close to Home
Let us assume you are an oncologist. Your mother makes a routine visit to her internist who finds a lump in her breast that looks like cancer on the mammogram. What do you do? If you are smart, you do not take direct responsibility for her care. But you certainly become involved. You discuss the situation with her doctor and agree on an institution and surgeon to obtain the biopsy. You explain the situation to your mother and talk to the surgeon. The biopsy is positive and the surgeon recommends a mastectomy, though lumpectomy with adjuvant therapy is mentioned as another option. You explain the pros and cons of the options to your mother in more detail. (I am not a breast cancer expert so give me some slack with the technical details.)
She chooses lumpectomy and node removal, which goes off smoothly. The surgeon calls you to say the classical adenocarcinoma was completely resected with wide margins, but there were two positive axillary nodes. He says that he has explained this in detail to your mother, including the need for adjuvant therapy. You call your mother and discuss the potential next steps in more detail, answering her many questions concerning chemotherapy and radiation not addressed by the surgeon.
She is referred to a medical oncologist that meets your approval. After he examines her, you call him and he describes a plan for adjuvant chemotherapy that is to your satisfaction. You call your mother saying you agree with the planned chemotherapy, but you discuss more of the details and help her plan for transportation, a companion during therapy, and for handling her normal duties. Your mother receives the first course of chemotherapy and tolerates it well; you talk to her before and after each course, offering her encouragement and support, and you consult with her oncologist occasionally.
Following the chemotherapy, the oncologist recommends that she be referred for adjuvant radiation therapy. Your mother is wary so you call a radiation oncology colleague to get his view on the need for radiation. After your explanation of the advisability and potential consequences of the radiation, your mother decides to go ahead. Your mother completes the therapy without incident and continues to do well one year later with no lasting side effects.
Navigating the System
The key medical feature of this story is that you helped your mother navigate the system of offices, institutions, medical specialists, and insurance issues—and very often a deep sense of fear. Her course was medically uncomplicated, but your mother was at times confused by the options or unclear as to exactly why a treatment was recommended. This process took a lot of your time and the physical outcome may or may not have been any different than without your involvement. But it made things much easier for your mother; it gave her more clear information, more time for questions and answers, another view of the treatment options, and, perhaps most important, it gave her more confidence in the process and greater peace of mind.
Is this valuable navigation of “the system” provided to patients who don't have a relative or friend in the business to help them? Too often, the answer is “No.” Medical oncologists and office nurses sometimes—and pediatric oncologists more often—navigate for their patients' care. But many cancer patients complain that:
- “Different doctors are making different recommendations and they don't seem to have discussed my case.”
- “It seems clear in the office, but when I think of other questions at home, it is so hard to call in to clarify things.”
- “I was referred to a specialist doctor who didn't know my history,” or “he had the facts wrong.”
- “My treatment was delayed for weeks because my records (or lab tests, pathology report, slides, x-rays) weren't sent (or received) by the specialist.”
- “There is so much information that I get confused, and my family and friends tell me even more to add to my confusion.”
Add to this the fear, anxiety, and disruption of family routine that always bedevils cancer patients, and even a good and well-meaning system may inadvertently add to patients' fear, confusion, and anxiety.
Options for Patients
A trained navigator can help within limits, but it takes an enormous amount of time, which is not compensated by third party payers. Busy doctors and nurses usually assume that “the system” works efficiently and equally for all patients. An oncology navigator should be familiar with the diseases and treatments and, much more important, should be comfortable helping the patient through the system of care. The navigator must have the people skills needed to deal with medical, nursing, and administrative staffs, to provide clear information and comfort to patients, and to understand and respect the sensitivities of providers and patients.
Here are some other options to consider and my reactions to them:
- The best option is to get Medicare (and other third party payers) to reimburse oncologists for providing well-defined navigation services. This is the first option, but a long shot in the current political environment.
- Train nurses for this role and seek reimbursement for their services. I like this one because most nurses have the greater patience that is so useful in this role, reimbursement might be easier to negotiate with third party payers, and hospitals and doctors' offices might be more willing to chip in for the cost.
- Bring retired primary care doctors, oncologists, surgeons, and pediatric oncologists into practices to provide the service part time either pro bono or for a modest fee. Social workers are often an excellent source of this kind of support, but they are spread very thin and aren't paid well.
In short, if a navigator or ombudsmen is very helpful for our mothers (or sisters—my sister has done very well, thank you), shouldn't we make this service available to all of our patients who need it?