"Options Are Not Always Seen as Choice"

At a recent conference that I attended, I heard this amazing quote:

“There is no choice, We need to highlight the value that options are not always seen as a choice." Dr. Larry Allen, MD, who was discussing his work in shared decision making in treating  patients with an LVAD device.1

Sometimes one can run out of options for asthma treatment

This really resonated with me. For years I was in a  bit of a treatment purgatory, I had missed an opportunity to get into a clinical trial, there was not another opportunity for some time. The good news is that many of the studies that were happening at this time are now drugs that are providing life-changing results to some. I remember specifically that my doctor and I spoke about not doing more harm, that investigational medications offer no guarantees and at that time there were many unknowns but perhaps I would have a positive result and better quality of life. This was a lot to process, the treatment may or may not work, but in the next breath, it may be the only other options that I had not exhausted.

The stress of making an asthma treatment decision

The challenge and stress for patients are that sometimes options are seen as a choice. This is especially true when options do not take into account the quality of life, patient preference or when the option is literally the difference between life and death. This may also be the case when you are provided with only a single medical option. This can be also related to insurance coverage, comorbidities, and other factors. The discussion of these options needs to be seen as something more that takes this into account. While a care provider may feel good about providing options, there needs to be an emphasis on all the elements that go along with executing that treatment option. This can be the distance and transportation needs to a medical center, financial or employment constraints, need for child care or comorbidities.

Understanding the need of asthma patients

How might we able to understand the need of patients?. What values do you find important in making care decisions?  Have you faced a challenging treatment decision in which you felt options were not a choice?

Changing asthma treatment

Earlier this year I made a challenging decision about a course of treatment. I made a decision tree, consulted my care team,  qualified values and had all the feelings documented. I thought I had come to terms with my decision and while there were certainly times in which I may have had a twinge of regret I knew my data was solid. There is always the possibility of experiencing an adverse events and while you can add in that variable into your planning, you will never really know how you are affected until you experience them. All my planning was a great exercise and I seldom regret my decision, however, when things go unexpectedly it is hard not to think “what if”?

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