What Is Authentic to You in a Medical Decision?
When there are no rights and wrong, people choose according to their values.
Posted Feb 20, 2019
Authenticity is a relatively new concept, prompting us to live wholeheartedly, in a way that is honest, vulnerable, and true to ourselves. It’s mostly associated with Brene Brown, who brought authenticity to the forefront, encouraging many to follow their hearts.
On a completely different note from this new age, concept lies medical decision making.
Or maybe not so different.
We live in an era where people are increasingly invited to—or at least capable of—participating in their own care.
Since we’re not doctors, we have limited medical knowledge to guide us. I’ve spent over a decade of research and consulting in order to improve the way information is conveyed.
But beyond the medical information and knowledge, we have something no less valuable when it comes to us choosing—intimate knowledge of our values and preferences. And the authenticity to act upon them. This is particularly true in situations where there are no clear cut rights or wrongs.
I reached out and learned from some remarkable people how they authentically made medical choices. I’ve got to say I was blown away by the courage in the moment, and the courage to share.
Catherine Callahan is a retired land use planner who has started a business last year, ICareHealthCare, to help people get better healthcare. She also wrote a book, "YOU Can Do It: Tools to Better Manage Your Healthcare."
Here is her story of her medical decision and why it worked:
“I have had more than 25 years of experience with the healthcare system, both on a personal level and with others. Quality of life is what's important to me and helps guide my medical decisions.
Very recently I was told that I needed a shoulder replacement. None of the intermediate steps (injections, physical therapy) had worked. I am recovering from a major surgery performed four months ago and did not want to add another prolonged and intense recovery.
Although this option was not offered to me, I requested that the surgeon go in and "clean things up," meaning to remove inflamed and arthritic tissue, smooth joint surfaces, etc… He pointed out that he would have to relocate a biceps tendon attachment. I was willing to accept the recovery period for this procedure as a tradeoff for a quicker recovery and improved quality of life. I was clear and honest about the reasons for my choice in our consultation. In the end, the surgeon willingly agreed to do it, both of us accepting that the outcome was uncertain. That is my authentic voice, focused on maintaining quality of life in a medical situation with difficult choices.”
I find this a great example of a patient being transparent and creative in the solution she suggested, which suited her values, as well as her recent surgical experience. This type of considerations is idiosyncratic, and cannot be brought to light without the patient’s active participation.
Sydney Williams, Founder of Hiking My Feelings, talks about authenticity and finding her true path, not just around medicine and illness, but around life as a whole, from one of the glitzier corners of corporate America to hiking - in a truly inspiring way:
“When I was diagnosed with Type 2 Diabetes in September 2017, I learned that there are four things that affect my blood sugar: food, exercise, medication, and stress. I took to the first three right away; cleaned up my diet, started walking 30-45 minutes every day, and took my medications as prescribed. When my blood sugar levels remained elevated, I knew I had to take a good hard look at my life and the source of my stress. Not surprisingly, my job was the biggest source of stress; I was working at a marketing firm, leading NBC's email marketing, and was diagnosed the week before fall premieres. I knew I needed to make some drastic changes. I started to advocate for myself more at work, hoping I could reduce my workload. No luck. On the side, I had been helping my friend with her startup, and when I had the opportunity to join her team full-time, I took it. I thought if I was working on a brand that was more aligned with the issues I care about, perhaps that would reduce my stress, and thus, my blood sugar. Again, no dice. After quitting the agency job (fat salary, cushy benefits for a newly diagnosed Diabetic), and joining the startup, I started having panic attacks near-daily. Something had to give. And that something was my career. I quit my job with no backup plan, no savings to speak of. It was the scariest thing I've ever done. Two weeks later, I found myself hiking across Catalina Island, connecting the dots on more than a decade's worth of trauma that followed a sexual assault I survived 12 years ago, and how it had manifested in my mind and body. I'm now on a nationwide speaking tour, sharing the story of how hiking saved my life. It's not popular to quit a six-figure salary. It's not popular to leave your best friend's startup after 95 days. But those are two of the most authentic decisions I've ever made for my health, and I'm pleased to share that I am now down more than 70 pounds since my diagnosis, I'm off all of my medications, and manage my Diabetes via diet and exercise.”
Liz O’Carroll, a holistic health coach, and founder of Misfit Wellness gives several examples of decisions patients face and shares what were her guiding principles when making them, and when living with their consequences:
"After struggling with depression and disordered eating for most of my life, and then dealing with a perfect storm of health challenges that included infertility, spinal osteoarthritis, and back surgery a few years ago, I've faced a high volume of medical decisions. Two medical decisions in the past decade come to mind as requiring a strong sense of self and authenticity, as they were both profoundly influential on my overall health and wellbeing. After I was diagnosed with lymphedema, I was encouraged by a Stanford specialist to get off "the pill" after 15 years, though it could mean difficulties balancing my hormones due to PCOS and hypothyroidism. A few years later, I was faced with the decision to get off medication that was helping me with anxiety and depression but was possibly negatively affecting my gut health, hormones, and mental health. When making both decisions, I tapped into a deep level of self-awareness cultivated through years of meditation and daily journaling. Those practices combined with a regular practice of checking my decisions against my values, helped me make medical choices that felt authentic and true to who I am. I have great faith in the power of holistic diet and lifestyle practices, and these were two areas where I knew it was time to challenge myself to practice what I preach - or at least give the holistic approach that has worked in every other area of my life (and my clients' lives) a chance.”
Hassan Alnassir, founder and owner of the kids’ toy business Premium Joy offers a perspective which healthcare professionals might be uncomfortable with, but which felt right to him, and apparently also worked well, medically speaking:
“I have suffered from food poisoning and was hospitalized for two weeks while on the daily job. The doctor informed me that I had hepatitis for a long time after seeing elevated liver enzymes in the blood tests including those done in previous years. But he wasn't able to figure out the root cause of the disease even after doing much blood and stool testing, and just made some speculations. I was later transferred to another hospital where they also couldn't discover the disease cause and prescribed a drug for me.
I knew that drugs were unmeant for my body, and they wouldn't resolve the problem. Based on my inner voice, I refused to take conventional medicine and opted to alternative therapies and healthy practices for relieving my condition. I have undergone several natural healing therapies to cure my hepatitis including reiki, theta healing, acupuncture, chi energy treatment, massage, and distance healing. I additionally performed regular meditation and exercised using a trampoline and whole body vibration machine.
Thanks to all the natural healing practices I have followed, the liver condition improved and my general health became considerably better. I'm delighted I followed my intuition at that time and made the decision to reject the prescription drug, opting instead to alternative health practices. This medical condition has opened my eyes to the world of natural healing and changed my whole life.”
Mike Gnitecki of UT Health brings an important perspective on how authenticity in patient choices is perceived – and respected – by healthcare providers. He reminds us that the other side of patient autonomy is professionals ceding control, and agreeing to go along with patient choices. A common phrase in shared decision making is 'it takes two to tango'. Usually, we mean that the patient should share and the doctor should explain, and make an effort to elicit, then follow, the patient's wishes. What we often fail to take into account, are the clinician's emotions:
“I am a paramedic.
I have patients who come in sick and sometimes refuse blood draws. This is their right to refuse. I explain the potential consequences (e.g. we can't see abnormal labs such as elevated white blood cell counts if they refuse a blood draw), but the patient has the final decision -- even if we disagree with their decision.
As healthcare providers, it is our obligation to respect the wishes of our patients. We need to explain the potential benefits of a test and the potential consequences of refusal, but it is the patient's choice.”
I chose to end this article with Dr. Shoshana Aal, a clinical psychologist and owner of a therapy practice called Watermark Counseling in Denver, Colorado, who specializes in trauma, grief, and loss. I had asked everyone about having made a medical decision in a way that was authentic to them, and this is her response, which shows how patient preferences, while not changing the medical outcome in this tragic case, have made a huge difference emotionally, giving a patient a sense of choice and control in a situation that on the surface offered neither:
“Your query reminded me of a very strong patient I saw.
A client I was seeing came into therapy to process a nearly impossible experience. She had gone in for a checkup with her OB/GYN during her fourth month of pregnancy only to learn that her child had tested positive for Edwards syndrome, a condition that causes most infants to die before birth or within their first month of life. Her doctor then asked her when she would like to schedule the surgery to terminate the fetus. She never referenced anything religious but let me know that she felt immediate defiance at this statement as if it fought against everything she was feeling for her unborn child. She decided in the moment to follow her instincts, her authentic self. She changed doctors and found one that would be willing to understand her needs as this child's mother instead of just seeing her as a pregnant woman with a doomed child. She knew that, whatever happened, she wanted to carry her child through to birth. It was an unpopular choice in the medical community and with her family, but she felt that it was what she wanted to do for her child as a mother. The child died soon before birth, and while she used much of the time in therapy to grieve, she never expressed a wish to have done anything differently.”
This is the kind of article you read (or write) and need to get a coffee afterwards, practice some deep breaths, and process. I’ve been studying medical decision making from the comfort of my office so for long. This raw encounter with the real world, people, their decisions, their pains, is the best reminder of why I do what I do, and what a difference shared decision making can make to people, and what a relief it can provide during the hardest times of their lives.
If you’re had similar issues, and grappled with similar dilemmas, please write to me, or tell everyone in a comment here.