It sounds great in theory, but in reality, it doesn’t always happen that way. Despite electronic communications and promises of patient-centered care, important information continues to be lost, skimmed over, or slips through the cracks.
What if we stopped thinking about post-treatment care in terms of a patient-provider relationship? What if we de-medicalized it, and let the patient guide the process?
Instead of the patient being told what to do at each pre-determined stage of follow-up care, address the real lifestyle problems as they come up, allowing the person to guide their care by solving only the things that become troublesome, and let the doctors or providers serve them accordingly.
This is not to say we omit follow-up scans and lab tests that look for the recurrence of cancer. But we need to move past the thought that survivorship care is primarily medically-oriented, and scans and lab tests comprise the core of it.
At some point, the person who has been through cancer treatment needs to be referred to as the person, not the patient. Perhaps that could begin with diagnosis.
The system of health care as we call it, is not actually about health. It doesn’t even necessarily restore health. It can stop illness from advancing, or make it go away temporarily or sometimes permanently, but it really doesn’t do much to take a person from a state of illness back to a state of wellness. There are a multitude of specialized therapists available to help with specific physical or emotional difficulties, but often it’s hard to get the patient to their services, and it’s not because the services aren’t needed.
Doctors aren’t doing it intentionally, they are simply doing the best they can in the system in which they were trained and must work every day. That includes tons of electronic documentation and many other regulatory tasks that must be completed, and an untold number of daily distractions related to these necessary tasks, many of which take time away from the doctor’s time allocated to patient care. Unfortunately, it is the patient who suffers as a result.
Many patients never get referred to the right therapist to help them, for a variety of reasons:
- The patient doesn’t verbalize their needs to the doctor due to lack of time or distraction by other issues in an appointment,
- the patient’s lack of awareness that what they are experiencing isn’t normal or necessary to suffer through,
- the patient isn’t aware that the resources exist to give them relief,
- patient and/or doctor are aware that services exist but insurance doesn’t cover the needed services,
- the doctor doesn’t listen to the patient carefully enough,
- the doctor doesn’t perceive it as a problem when it isn’t life-threatening even though it is causing the patient distress,
- the doctor assumes everything is okay if the patient doesn’t mention anything,
- or the doctor isn’t aware that the resources exist to help the patient.
It takes an extra team member to oversee the whole operation! That’s where a cancer health coach can help. By looking at the complete picture of the person’s life, their everyday needs and struggles to get life back to an acceptable level of function and quality, sometimes referred to as “the new normal”, the coach can help direct you to the right resources to help you cope with the problem.
Here are some examples of missed communications, lost opportunities, that resulted in prolonged suffering for the patient. In each case, intervention by a health coach directed the patient to the right practitioner and the problem was resolved. (Details altered to protect privacy)
- after pelvic radiation, the patient did not tell the doctor about urinary incontinence. As a result, the doctor never made a referral to physical therapy for pelvic floor exercises.
- after surgery to remove a large number of lymph nodes, the patient had swelling that persisted long after healing was complete. The doctor did not mention lymphedema might result from of removal of many lymph nodes, patient was athletic and active and didn’t know that the constant exercise intensity was contributing to the problem.
- after starting on endocrine therapy, patient had severe joint pain that resulted in limping and disability. The patient found out that the drug itself was not the source, but pre-existing arthritis had progressed to degenerative joint disease. After joint replacement, patient was able to continue with endocrine therapy and get back to normal activities.
- a patient had persistent and severe fatigue after remission, more fatigue than oncologists could explain due to patient’s recovery from anemia. A simple TSH test revealed that the patient needed an increase in thyroid medication dosage, and the fatigue resolved.
Skills for self-advocacy can be taught by a health coach to make sure that the patient can better direct care to resolution of a problem, saving the patient, time, money, and suffering. If the patient directs the process, they will be more likely to achieve relief because they will follow through to resolve it. Busy health care providers cannot be aware of the degree to which the patient is suffering and their priorities may be based on immediate medical emergencies.
Having a health coach on your team, especially after cancer treatment is complete, can be one of the best values anywhere in terms of your well-being. It can save you a lot of extra appointments, time, money, frustration, and suffering.