It takes a multidisciplinary team to treat a person with a rare disease. Along with highly experienced and accomplished medical scientists there needs to be individualized care. Included and embedded in this specialized treatment is the skills of coaching.
We are all very familiar with the roles that coaches play in sports. From many different definitions some of the most successful sports coaches have mastered different skill sets. Some of the skills are analyzing performances, instructing in relevant skills, providing encouragement, guidance of the athlete in life and their chosen sport, and advising about health and lifestyle issues.
Coaching is involved in other industries as well. Health coaching is incorporated into practice when dealing with patients. Patients with a chronic illness are managing their care 99 percent of the time. It is important for health care providers to partner with their patients, together working toward the best possible quality of life.
Recently we were called by a patient’s daughter to come see her mother “Doris.” Doris was recovering from a pleurectomy, the removal of the lining of her lung for malignant pleural mesothelioma, a challenging recovery. Doris had been seen the week before and was recovering from the surgery, and had a very supportive family to help her.
This visit was different. Doris was unsure that she was progressing. She had intermittent nausea, was not eating, and was anxious that something was wrong. We reviewed her vital signs, her walking, appetite, sleep, pain level, and all the things that she needed to be doing to keep progressing. Doris acknowledged out loud that no she did not have pain, was breathing without difficulty, had no shortness of breath, and she needed to eat more, ambulate more, and get out of her house. She had gotten in her head that something was wrong and the anxiety and fear that she was not making progress had compounded her inaction. She knew there would be a “new normal” but was this it?
Sometimes uncertainty and doubt can creep into our minds and someone listening and pointing out the positives that the person has expressed can help. Listening and acknowledging someone’s fears and doubts is an important part of the care of a person, especially one who has been diagnosed with a rare disease.
Health coaching is an important part of taking care of a patient. The long held practice of giving someone a list of discharge instructions and expecting them to comply does not work. People are individuals and need to be acknowledged and appreciated for that uniqueness that we all have.
Doris is better, recovering and thankful. Her “new normal” is pain free, no shortness of breath, improved appetite, and enjoying her family!