By: Dale J. Buchberger, PT, DC, CSCS, DACBSP
Those of you that have read my column over the last few years know that I often reference my family to provide a “real life” perspective. This issue is about my mother’s recent experience with the healthcare system. We found out quickly that the “system” and its “players” lack the ability and the training to clearly communicate medical information, be compassionate and provide clinical management advice to a patient and their family.
It started with an emergency room visit due to difficulty breathing and growing fatigue. After chest x-rays, MRI’s, and CT scans, we were told that “it looks like pneumonia, but we can’t be sure without an endoscopic exam”. Really? In 2013 two pulmonary specialists with internships, residency’s, fellowships and board certifications can’t tell the difference between pneumonia and a lung tumor on advanced imaging? It took several days to finally elicit the diagnosis of a stage-4 lung tumor.
Chemotherapy was started and the oncologist and his staff were tremendous. They explained the plan, what side effects were to be expected and what the projected percentages of recovery had been in similar cases. There were no questions because the doctors communicated clearly and efficiently. During the process of chemotherapy a brain MRI was performed and it showed a tumor that had spread from the lung cancer. Mom underwent two cyber knife radiation treatments.
The cancer spread to her 3rd and 4th ribs. This required radiation treatment for ten-days to that area. This started to take its toll. Mom began to wear down but insisted on working. On May 3rd she went to work and during the course of the day suffered a stroke. She went into the hospital unable to use her left side. She was however able to talk and communicate. The stroke left her with great difficulty swallowing and thus she couldn’t eat. She was seen by internal medicine, neurology, oncology, speech, physical and occupational therapy and cardiology. It was quickly evident that there was little to no communication between the specialties. The twist, none of her regularly treating physicians had privileges at the hospital she was taken to so it was like starting over. It was as if 80-years of medical history had to be recreated because of a thing called “hospital privileges”. Each specialty was giving their opinion about their specific system, but they weren’t talking to one another to coordinate the findings and these findings were affecting my mother who is battling cancer and a stroke.
As a medical professional I don’t know everything, but I know enough to understand the “lingo” and the “jargon”. My older brother is a registered nurse with private sector and military war zone experience. We pressed the doctors on the aspect of communication and finally got them to talk. This simple tool made a drastic change in her management immediately changing her medication. She continued to struggle with swallowing, however. After three days the staff determined that she was still unable to “eat safely”. At this point, I spoke to the doctors trying to get them to commit to a clinical decision. This was very frustrating. My patients come to me and expect answers. If I can’t provide them with a reasonable answer I find someone who can. This group of doctors acted as if they had never seen an 80-year-old woman with cancer who suffered a stroke. I finally said, “Tell me what your clinical experience is telling you about potential for recovery and life expectancy”. They still “hemmed and hawed”. As rough as it sounds, I finally said, “Doc if you tell me she’ll be dead in a week and she is still alive three weeks from now, I’m not going to call you and say hey you said she was going to die two weeks ago”. Finally the answer was “we should think about hospice”.
The topper was the hospice nurse who listened to my mom’s throat and lungs for 20-seconds and determined that the “noise” was from her throat. Really? So either the five fellowship trained doctors that said the “noise” was fluid in her lungs (and medicated her accordingly) are morons, or the hospice nurse is Dr. House in disguise? This “hotshot attitude” enhanced the frustration.
In the end, mom declined a feeding tube and went to hospice on May 7th at The Center for Hope in Scotch Plains, NJ. She received the most compassionate care I have seen in 25-years of practice. It was the opposite of her hospital stay. Mom passed away on May 29th. If you are a medical professional remember that the patient in front of you is someone’s grandparent, parent or sibling. Treat them as you would have your family treated. The cost of healthcare maybe rising but it doesn’t cost anything extra to explain a patient’s condition efficiently and compassionately.