You Can Always Say No

In certain industries, we are naturally suspicious about the incentives a salesperson might have to “sell” a product. Car dealers and insurance salespeople come to mind.

In healthcare, by contrast, we assume that recommendations being made by providers are in our best interest and we seldom question them. Instead, we passively agree to whatever plan of care, diagnostic test, or surgical intervention is offered to us. Unfortunately, this can sometimes be a mistake.

Consider the example of “Mrs. G,” an older adult who had an abdominal mass identified as an incidental finding during an ultrasound that she received for a medical condition for which she was receiving effective treatment. One physician recommended a diagnostic test that was invasive and that would have been challenging given the state of her health, mobility, and cognition.

Rather than simply move ahead, I encouraged the family to first request a follow-up appointment with the physician, during which they could ask thoughtful questions, such as…

Is this test really needed? What specific information will the test provide, what are the potential recommendations that might be made based on the results, will those recommendations be considered?

What, exactly, would the test entail in terms of preparation and during the actual event? Is the test doable, or would it be too onerous and potentially traumatic, thus causing suffering to Mrs. G?

What are the risks of this procedure? No invasive procedure is without risk. While they may be small, all risks should be explained so an informed decision can be made.

Are there safer or simpler options? If so, what are they and how do they compare to the original recommendation?

What happens if we say “no” and don’t do anything about this situation? What might occur if no further steps are taken?

What is the financial cost of this recommendation? Providers may not know about your specific insurance coverage (deductibles, co-pay, co-insurance amounts, etc.). However, they will know if something is generally not covered by insurance.

Based on these questions and the answers provided, and given that Mrs. G was a 92-year-old woman experiencing cognitive decline and who often stated that she’d lived a good life and did not want extraordinary measures at the end of that good life, the family decided not to embark on the diagnostic test. Mrs. G. lived four additional years and eventually passed away from complications of Alzheimer’s dementia.

Another Example

“Mr. S” called us in a panic following the one-and-only conversation he had with a hospital-based case manager. Six weeks earlier, his 42-year-old wife had suffered a major stroke. Despite the case manager’s recommendation of a transition to another facility, he could not imagine such a move at this point. His wife was extremely ill, and when he was honest with himself, he was not convinced she was going to live.

He was clearly quite stressed, so I described how under these circumstances, we work with clients to slow down the process, communicate with all stakeholders, and develop a realistic, methodical, and comprehensive plan.

He seemed relieved to have an informed ally by his side, but at the end of the call, he said, “What if they tell me my wife must leave this weekend?” I answered, “We just say ‘no, that is not possible.’” He was surprised to learn that saying “no” was even an option.

Overall, I had a negative reaction to Mr. S’s encounter with the case manager. Because while I did not think a discharge would happen at this time, I so wished he had called us sooner so we could have gotten involved in the process and helped him avoid so much anxiety.

Here were my initial thoughts…

Why was this the first time, during a six-week-long admission, that discharge was mentioned? It’s important to think about and discuss discharge plans from the point of admission so there are no surprises and the criteria that must be met for a transition are known from day one.

What was her clinical status and how were things to be managed in a less-acute setting? Mrs. S’s numerous complications required a sophisticated level of care. But Mr. S had no idea that any facility besides a hospital could provide this. After all, this was the first time in his life he was faced with the major illness of a loved one.

What was a realistic date for this impending discharge? Had the case manager described the criteria upon which his wife could realistically be discharged, Mr. S’s panic could have been avoided.

What detail could the case manager have provided, beyond a list of settings to which his wife could be transferred? Case managers often use technical terms — LTCH (Long-term care hospital)SNF (Skilled nursing facility)— and provide the family with a list of facilities to which their loved one can be transferred. But most people have no idea what the words mean, let alone how to evaluate such places. Why was there no education given to Mr. S?

What was her prognosis? Meetings with providers must occur, so that answers to this important question can be provided. Case managers should be involved in facilitating such discussions.

What were the goals of Mrs. S’s transition? The goals of care provided in an acute care hospital compared to the goals in the next facility need to be clearly outlined so the family can distinguish between the two and make appropriate decisions.

Taking these and other related questions and considerations into account, we contacted the case manager. By the end of the week we had a detailed plan in place and a full understanding of the criteria that had to be met before Mrs. S. could be transferred. Mr. S. visited several facilities that would be appropriate and felt in greater control of the situation.

Final Thoughts 

In both scenarios described above, family members learned that saying “no” is always an option. If it’s not automatically offered as such, we have a responsibility to politely speak up, describe what we expect, and ask for what we need.

That’s what we mean by empowering individuals to become assertive consumers!