Team Medicine might be hazardous to your health

From my experience, Team Medicine doesn’t benefit the patient. It is trendy and looks good on paper, but it sucks for patients and their families. My brother Bobby died seven years ago from a severe misdiagnosis of squamous cell skin cancer, leading to incorrect and dangerous treatments. He was a terrific father and devoted husband. Bobby was also a brilliant bass guitarist. He lost his arm with two amputations and then his life. I have not been able to write about it until now because I was too angry. The misdiagnosis part of the story is for another time. I want to focus on “team medicine” for now. From the beginning of his tragic journey with team medicine, my brother was treated with suspicion and disrespect because he was a reformed heroin addict. He received no credit for the fact that he had kicked the addiction 15 years prior and was a model client and well-liked at his methadone program. The medical professionals who were treating him for cancer red-flagged his chart, and that, I believe, led to doctors and nurses not treating him properly. One example, a nurse with a terrible bedside manner accused Bobby of using illicit drugs. He denied it. Accusatorily the nurse retorted that his blood work had traces of an illicit drug. Bobby explained that the anesthesiologist had administered that medication during his recent surgery. The nurse either didn’t read the chart notes or assumed he had taken the drug to get high. The stereotype of thieving, scraggly gutter-dwelling addicts isn’t accurate. There are many white middle to upper-class heroin addicts in the world with good jobs and happy families.

At Bobby’s initial doctor consult, the doctor’s first question was whether Bobby and Lynette were “Indians” (Native American). Bobby and Lynette shook their heads and said, “No.” They were both stunned by the question. Both wondered what would have happened if they had said yes. Lynette spoke up first and told the doctor that she worked at the Boeing company and had excellent insurance if that was his concern. This strange interaction set the tone for their relationship with this doctor. Bobby and Lynette were too passive to walk out as I would have done. I am unsure which prejudices were at play by too many of Bobby’s healthcare providers. Was it based on his race, skin color, or just the heroin history? Who knows, it could have been both, but after the second amputation, when Bobby complained of pain, they told him to take over-the-counter Tylenol. Finally, Lynette called me in tears to say that Bobby had been in agony for four months, and she didn’t know what to do.

I looked on the Seattle Cancer Care Alliance website, a renowned treatment center. (They are part of the Fred Hutchinson Cancer Center now, so hopefully, things have improved.) Below is the description of what patients can expect from team medicine providers. Your team includes doctors, a patient care coordinator, a registered nurse, an advanced practice provider, and others based on your needs. You also have access to experts like nutritionists, social workers, acupuncturists, psychiatrists, and more who specialize in supporting people with cancer or blood disorders. The SCCA website had a comment form. I wrote that my brother had not received the expertise they claimed was available to their patients. He was not treated with respect, received no comfort, and had been in pain for months following his latest amputation. I anticipated a canned response. The next day it came via email. They asserted that they could not “discuss” my brother’s treatment with me due to HIPAA. I replied that I wasn’t asking questions, nor was I asking to discuss his treatment. I informed them that he was not being cared for properly, and I was sure it was due to his previous drug use. I wrote, “My brother deserves the same respect as all your patients. He is a cancer patient first and foremost.” The response was that their Director of Pain Management would investigate the situation. I was astonished that they had such a person on staff when Bobby had been asking for help and crying daily for four months due to excruciating pain. My brother never cried, so I knew it had to be bad. At Bobby’s treatment appointment, Dr. Fitzgibbon stopped and told Bobby and his wife that he had ordered actual pain medication. The doctor was pleasant enough. His profile on their website identified him as a “Professor, Anesthesiology and Pain Medicine.” On his way out the door, he said, “And tell your sister to back off.” Bobby called me all excited, knowing he was no longer in pain. Then he said, “I met your friend Dr. Fitzgibbon today.” Bobby assumed that I knew the pain management doctor through my earlier volunteer work as president of a Washington children’s cancer nonprofit, and he thought that was the source of his reference to me. I was furious but let it go because he had written the prescription.

Bobby held his own for four and a half months. When his health worsened, I flew to Seattle to be with him. The second amputation and subsequent treatment didn’t work, and the cancer had spread to Bobby’s shoulder and then his lungs. We laughed and reminisced about our childhood. I urged him to speak honestly with his family. On my last day there, we took his best friend, Louie the Labrador, for a walk down the street to the park. When we got back, he struggled for breath getting up the stairs. That is not a good sign. We said our goodbyes that night, and I flew home with a broken heart. Four days later, our brother Mark called from the Emergency Room at the University of Washington Hospital, saying Bobby wanted to talk to me. He was having difficulty breathing because the cancer was growing like topsy. I asked, “Do you need me to come back?” He replied in the affirmative. “I will get the first flight I can,” was my response. I threw together my clothes while my husband found a flight for me.
The first morning there, Dr. Fitzgibbon strolled in with medical students. Bobby introduced me. With a superior attitude, the doctor said, “Oh, I know your sister Shirley.” When the group departed, I followed them into the hallway. I wanted to chastise Dr. Fitzgibbon for being so immature. Instead, I pointedly told him that I expected him to ensure that Bobby would receive enough pain medicine and proper care. I told him I could tell Bobby didn’t have long and that he would need more medication than most people because of his past drug use. I also let him know that Bobby was afraid to feel as if he was drowning. He nodded, told me not to worry, and walked away.

A few days after I arrived, Bobby’s health rapidly worsened. I called Mark and said we needed to consult with Bobby’s oncologist. He offered to make contact. That evening, we had a telephone conference call with Dr. Banerjee. We hadn’t known before the phone call that the Seattle Cancer Care Alliance doctor did not have privileges at the UW Hospital. So, no oncologist was caring for my brother at the hospital. Not one oncologist ever came to see him or talk to the family. Where was the team? It felt as if Bobby had to fend for himself. We described Bobby’s condition and asked for Dr. Banerjee’s assessment and advice. He didn’t give us much comfort. It didn’t help that he was just a voice on the telephone. The UW is a team medicine teaching hospital. What a joke. I felt as if Bobby was the kid waiting on the bench to be last picked for kickball. He was the last leaf falling off the tree. No team was there for him.

The staff moved Bobby to the oncology floor the following day. When they assigned Bobby to the last room at the end of the hallway, my thoughts immediately went to Elisabeth Kubler-Ross, who said the end rooms were where the staff put dying patients. Out of sight, out of mind. I thought that would no longer be true because Elisabeth talked about it happening in the 1960s. Sadly, it still seems to be a common practice. Bobby got even less interaction from the staff. Again, team medicine was an empty promise. Per Bobby’s request, I went to the nurses’ station and informed them that he wanted to control his death. He wanted to die with dignity. They reassured me that someone from hospice would be in touch. When the hospice people came a few days later to talk with us, and I explained that Bobby wanted to utilize his right to die with dignity, they balked. As a Catholic agency, they didn’t support Bobby’s wishes. The hospice worker said that the process required signatures from five doctors and would take three weeks. It was a toothless law made even more impossible by an agency that doesn’t believe in controlling death. I told them that Bobby didn’t have three weeks or five doctors and that his biggest fear was to feel as if he was drowning as his lungs filled up with cancer. They promised that he would get proper care and not to worry. I said that I wasn’t worried. I was trying to honor my brother’s last wish. They smiled and left. We never saw the hospice people again. Weren’t they part of the team?

Unfortunately, we soon found that you shouldn’t die in this Team Medicine-teaching hospital on the weekend. When Bobby’s pain ramped up and his breathing diminished, we had no point person to help. There were no oncologists or pain medicine doctors, social workers, case managers, or hospice workers to provide comfort and support to Bobby and his family. It is unbelievable that a teaching hospital didn’t have Residents or Fellows on shift to care for patients in the oncology unit. It was on me to run down the hallway to the nurses’ station and demand pain medication multiple times. Then, it would take forever to get the pain relief medicine to Bobby because they had to rely on doctors in the emergency room to write the script. Each time Bobby’s meds had worn off, he was in agony long before the prescription arrived. Witnessing Bobby’s depth of pain and panic was horrific for our family. In my opinion, Dr. Fitzgibbon should have known to leave a standing order for pain medication in Bobby’s chart since he would not be there, and he must have known that no one else would be on the floor because it was the weekend. He knew that Bobby wanted death with dignity. I cannot help but wonder if this was his ‘gotcha’ because I dared to tell SCCA they weren’t doing their best to treat my brother’s pain.

I am not going to give you the gory details, but my brother’s dying process was not peaceful like the Catholic hospice people promised. It was not pain-free like Fitzgibbons had assured me. It was two long horrible days of frightening unnecessary suffering for my brother and his loved ones. It was the opposite of what he had requested. There was no team helping him or us. We had no point person to help facilitate care. During the last week in the cancer unit, we never saw or heard from a doctor. We barely saw nurses. It was just as horrendously unfeeling as Elisabeth Kubler-Ross described the care for the dying in the 1960s. Leaving the hospital just after Bobby died, I was exhausted by the whole experience, but especially by the lack of compassion by the staff. I saw a huge banner on the fence fronting the hospital, stating proudly, “UW Hospital rated #3 in the nation!” I just shook my head and cried. I was sad, angry, and disheartened that my baby brother had been so disregarded by those who were supposed to care for him at the most awful time in his family’s life and the end of his. At the very least, Bobby deserved enough pain medication to provide the highest level of comfort. Team medicine failed him. It failed us all.

Beware of Team Medicine,

Shirley