Transparency in Healthcare: Patients *Can* Handle the Truth
Mark's Note: Here is another guest post from Drew Locher. I'm hoping that he'll contribute occasionally to the blog as a guest author. My podcast with him is coming soon… please do read his “part 1” of this post and then read this. It's a sad story about how healthcare organizations and care providers can be arrogant or tone deaf… refusing to listen to or communicate with their customer, the patient and their family.
This blog is a follow-up to the one in March 2015 (on the ThedaCare Center for Healthcare Value blog) about my observations during a five-week period in which my mother received combined chemotherapy and radiation therapy (CRT) for inoperable rectal cancer.
First, I want to thank the dozen or so folks who sent me heartwarming notes after that posting. I greatly appreciate them.
Here is the update: within four weeks of completing treatment, my mother passed away of “complications relating to her cancer.” She did not officially die of cancer, but rather she starved to death. As of a result of the treatment, she was unable to intake the necessary nourishment to sustain her life. Keep in mind that, just three months prior, she was in no pain, had experienced some weight loss, and no one would have known she was ill by looking at her.
In that blog post, I did not address the issue of the prescribed treatment plan. I wish to do so now.
My mother was 85 years of age, had congenital heart failure, stage 3 kidney disease, and an already compromised gastro-intestinal tract. When she was first diagnosed, I sat with her and asked her what she wanted to do. She calmly told me that she did not want to go through treatment.
Twenty-seven years earlier, she watched my father go through similar treatments. He was 59 years of age, strong as an ox, and one of those people who was never sick a day in his life. The treatments were ineffective in combating his very advanced, very aggressive cancer.
She told me that she didn't want to go through what my father went through. I asked her what her plan was. She said, “I am in no pain now. I just want to live my life, and when the pain becomes unbearable, I will take care of things.” I asked for clarification and let's just say the woman had a plan. I told her that I respected her wishes and would do everything to support her. I asked her was there anything else. She said, “I would like to travel a little bit.” I responded, “no problem there.”
The first meeting with the medical oncologist began with a statement from him that “we are going for a cure.” My mother listened intently, and my siblings were quickly on board with the very aggressive treatment plan. I had questions about recidivism rates for this type of cancer for chemotherapy only, for radiation therapy only, and for the combined CRT plan.
My questions went unanswered. The doctor actually ignored them.
In fact, it was three weeks into her treatment that I finally found someone to answer the question. Alone in a room, the radiation oncologist told my mother and me that in ideal laboratory conditions the difference between the combined treatment plan and straight radiation therapy was 1.4 percentage points. We did not even get into the discussion about my mother's age group, nor her pre-conditions.
It was at that moment my mother said that she no longer wanted the chemotherapy and would continue with the radiation treatments only. As this point, her systems were already failing, she was unable to eat or drink, she suffered from dehydration, and her kidneys were beginning to fail – after just three weeks of treatment.
When we were leaving, my mother said, “If I had known that, I would never have agreed to this.” And that is the point of this blog.
I found it to be an egregious affront that doctors were unwilling to provide a patient and her family with the information necessary to make an informed decision. I had asked no fewer than three doctors, point-blank, for this data, and the medical oncologist and his fellow refused to answer the question.
I looked for information online. I couldn't find anything.
The radiation oncologist told me that the only study was in France. This was a research hospital and CRTs go back almost 40 years, yet no data existed. They also did not inform her that there would be follow up procedures after the initial 5 weeks – monthly chemotherapy treatments for up to six months. The radiation oncologist dropped this bit of information during our conversation, and confirmed what I found online. I also discovered from several staff members (technicians, nurses, administrators) that “we tell everyone that” with regard to “going for the cure.”
Think of the ramifications of their decision to purposely withhold information and not allow a patient and his or her family to make an informed decision. Not only were a conservatively estimated $100,000 in unnecessary Medicare expenses incurred (not including the two ER visits described in the first blog), the patient was not given the opportunity to make an end of life decision that was best for her and her family.
Healthcare organizations need to practice transparency and provide patients with information that relates to their case.
They could say something like, “Mrs. Locher, after 40 years of such treatments, we cannot tell you what the benefits are of this treatment plan for your type of cancer or for your age group and a person with your pre-conditions.” Then the patient can make an informed decision.
I am certain that this story is not uncommon. It not only has significant financial implications on the healthcare system, but the withholding of information is an example of utter disrespect for the patient.
More from Mark Graban: I'm going to share this post with friends, including e-Patient Dave, who are active in the “engaged patients” movement, including the Society for Participatory Medicine. I think they'll be very interested in this story and I invite you to check out their work and their groups.