Saturday, May 7, 2016

Empathy, Education & Access

Another friend died this week. Cancer killed her.

While I do my best to honor and remember those who have touched me in some way, shape or form, I don’t choose to write about the passing of each and every friend who dies of cancer. That would make my blog more of an obituary section than any of you could probably imagine.

But I must share elements of Diane’s story because they are a critical conglomeration of things that need change in our healthcare system. Things that could have made a difference.

Diane was diagnosed with Stage 3 breast cancer [IDC (ER+/PR+/HER2-)] in August of 2012 and began neoadjuvant chemotherapy with Adriamycin, Cytoxan and Taxol (AC/T)in October 2012.

Full stop. There were two months between her diagnosis and the initiation of her treatment protocol.
Not okay.

Diane plowed through four infusions of AC without issue and then had a horrific reaction during her first Taxol infusion. Her Taxol dose was halved and she continued with the protocol.

Following chemotherapy, she had a double mastectomy and five weeks of radiation.

She was cleared from active treatment and put on Aromasin. She was never given a follow up scan.

Full stop. She was NEVER given a follow-up scan. Not okay.

She began actively researching ways to relieve her chemo-induced neuropathy and I met her early on in my own breast cancer saga in the Summer of 2013. I found her to be an incredible self-advocate and a candid voice in the realm of treatment toxicities.

In November of 2014, while mowing her lawn, she collapsed and was taken to the hospital. In that visit, the emergency room discovered she had a collapsed lung and mets in her bones, chest wall and liver. She was placed on Xeloda for three months but showed progression in her first scan so was moved to Ibrance. After six weeks, she stopped the Ibrance based on side effects and began seeing a holistic practitioner in the Summer of 2015.

Full stop. She STOPPED treatment based on side effects. She was never offered a clinical trial, an alternate treatment or even an empathetic conversation about QoL versus overall survival. And, in her words, she stopped trusting the healthcare system at that moment.

In October 2015, I convinced her to learn a little bit more about her options including clinical trials. She, like many other individuals, associated clinical trials with experimentation human guinea pig style. She was concerned about toxicity of treatments she might receive as well as concerned about receiving a ‘sugar pill.’

Before we could even examine options, we needed to understand her cancer and her previous treatments. And that’s where is became even more clear to me that the system had failed Diane. She didn’t know her cancer’s pathology. She felt she had been told a variety of things around her HER 2 status and she didn’t understand how she could be ER+ if she was in menopause. She had asked questions but felt rebuffed by her oncologist. Based on her knowledge, or lack thereof, Diane had never participated in shared decision making with her healthcare team – she didn’t have the knowledge to do so.

But she was a fast learner.

With the documentation we needed written down, she physically marched her way up to her well-respected facility and asked for her:
  • Surgical Report
  • Pathology Report
  • Treatment Summary

Wrestling that documentation from her healthcare facility was akin to pulling teeth and it took her two weeks to get the documentation she needed to better understand where she had been with her cancer treatments. We met for breakfast and reviewed all the documentation. When walking through her pathology report, I defined some of the shorthand that had stymied her before. She stopped reading, looked up at me and said, “So THAT’s what I’m dealing with.” There was no fear, horror or dread. She was delighted to finally understand her own disease.

Full Stop. Three years. Over three years passed after her cancer diagnosis before she finally understood what she was dealing with. Not okay.

We identified a few trials she might qualify for but she felt pretty good health-wise and her mistrust of the health care system was greater than her interest in seeking treatment. She stuck with her trusted holistic provider and continued with a regimen of ginger tea and cleanses. And, even if I disagreed with her choice, I respected her decision.

Her January 2016 scan showed progression in her liver, bones and lungs.

In January, we had another conversation about options and she was ready to give the healthcare system another shot.

Diane qualified for several clinical trials however she was simply too exhausted and too mistrustful of the healthcare system to take advantage of any more treatment options. She declined options and put her mind to the business of premature dying.

We cannot fix the system for Diane but, with a few modest changes, we can certainly reduce the risk of gaps in communication and understanding being a defacto process for others.

EMPATHY. We must start with empathy. Diane did not feel like her doctors liked her or understood her. This was the first nugget of mistrust that moved her away from a system that likely could have extended her overall survival as well as her quality of life. Everyone deserves empathy from their healthcare team. We all want to be seen, heard and held. Empathy is the secret decoder ring.

EDUCATION. In order for shared decision making to work, people must understand what it being communicated. There is a HUGE knowledge gap between many patients and their providers. Rather than depend on the patriarchal “Do as the doctor says” method, we must work with individuals to meet them where they are and bring their knowledge base up to a level where shared decision making can actually happen.

ACCESS. Every advanced stage cancer patient should have a scan post treatment. Diane did not. Turns out her facility was in the middle of being acquired by another and so the focus on her case (and many others?!?) likely were lost in the transition. Access was also an issue with clinical trials. While the closest trial was only 50 miles away, Diane felt like that was too far to depend on others to take her. No amount of discussion could convince her otherwise. But the idea of access runs the gamut. Physical access to care, financial access to care, access to information and accessible (understandable) information are all part of this puzzle.

I am very grateful I was able to spend some time with Diane a few weeks ago. And, maybe when I have the emotional energy for another post, I will write about the awesome way Diane chose to face her mortality with the same tell-it-like-it-is grace and candor with which she faced life. Cancer robbed her of her health but that feistiness was still shining through. 

Thank you Diane for all that you taught me, for all that you shared with our community and for making the world smile & laugh with your sass and your spunk!