The Unexpected Drivers Seat: Medical Decision Making For The Intellectually Disabled

In the United States, our society strongly values the principles of individuality, liberty, and freedom. This mentality is especially apparent in the hospital, where the vast majority of patients are able to ask questions about their treatments, decline tests or medications, and even walk out of the hospital against their Doctor’s recommendations! Most cases are pretty straightforward: the physician explains the indication for each the test (or procedure, treatment, etc.) as well as the risks and benefits, and with this knowledge the patient can make an informed decision. But not all cases are this cut and dry, as I learned firsthand.

Lea* is a 65-year-old female with Down’s Syndrome who was my patient during in the fall of 2016. She has short chocolate-brown hair, pale blue eyes, soft waxy skin and a smile so big you could not help but smile back. She has lived in a group home for the last 38 years, but was brought into the hospital because her care taker noticed that she had not been acting "like herself" for the past few days. This can be quite serious, as often times individuals with mental disabilities do not always verbalize when something is wrong, and therefore often come to the hospital later in the disease process. When I saw Lea, her speech was impossible to understand, and I feared that her symptoms may have been ongoing for some time. I was shocked when her caregiver reported that Lea was her own medical decision maker and had no family involved in her life. Up until this point she had been healthy enough to be deemed to be able to understand and consent to her care. This situation was a little more dire than anything she had before, but we didn’t expect to run into any problems.

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We quickly found out the causes of Lea’s change in behavior. Her chest X-ray showed fluid in both of her lungs. Her heart was also failing and bacteria was coursing through her bloodstream within her delicate vessels. After Lea was stabilized, we reviewed an image of her abdomen, and saw a grapefruit sized mass on her right ovary. In general, ovarian masses can range from being harmless to catastrophic or anything in between; without further imaging it was impossible to get a handle on what was really going on. To better look at the female reproductive system, we ordered the standard work up, which included an ultrasound test where the probe would be placed on her abdomen and then into her vagina to best view the mass from all angles. We were confident that this was the best approach to treat our patient, so we put in the orders and moved onto the next person on our long list of patients to see.

Later that day, I got paged several times from a very concerned ultrasound technician. She felt that Lea, as a result of her developmental disability, did not fully understand what was going on and therefore was uncomfortable performing the exam. Over the phone, the tech brought up some very valid and important concerns: “Did the patient understand what this test was for and what it entailed? How do we get consent from this patient? … I am not sure if this feels right. What should I do?”

My heart sank, and I was not sure what to say. As we were only ordering the standard testing to provide the best treatment possible for Lea, this situation had not occurred to me. When I met with the medical team, we wondered how did this woman who had been disabled for her entire life got lost in the system.

When I went home that night, I learned that this situation is neither rare nor unique. In fact, the majority of healthcare decision-making for persons with developmental disabilities is not made by the family. Instead, agency directors rely on the position of physicians, the “best interest” of the patient, as well as the preferences of the individual themselves (if they are able to voice them). This can quickly escalate into what is a very precarious situation where we as physicians are being forced to make precipitous decisions for what are often our most complex patients. The best interest of a patient is often debatable – ask five different doctors and you may end up with five different answers. Even worse is that we usually have to make these decisions only a few hours after meeting the patient. In this case, someone who knows and works closely with Lea would be much more likely to know her wishes than her medical team.

In addition, ability to consent as an individual with intellectual disability is a spectrum, and the nuances of the extent to which the individual can or cannot understand their situation is an evolving discussion. Often what happens (as was the case of Lea) is that the facility director where the she has been residing becomes the surrogate decision maker. These decisions are often variable as opinions of what constitutes a good or bad quality of life is subjective. What worries me is that facility directors represent a financial entity that may not be objective when making these decisions on behalf of a paying client. Hospital physicians are then left to either let the situation stagnate or do their best to quickly pull together social workers, lawyers and the appropriate documents, often in hospitals with very few resources while caring for floors of other patients. The sad and honest truth is that many patients like Lea do not receive the consideration they deserve.

This situation is not easy and quick decisions are never in the best interest of the patient. For example, should Lea receive sedation medication in order to get the appropriate imaging? Should her mass be biopsied? Or removed? If the mass does turn out to be cancer, should she go through chemotherapy? Would she want to go through chemotherapy? How many side effects, if any, make the quality of her life worth the discomfort and/or pain?

There is no clear answer and everyone’s opinion is unique and valid, especially the patient’s (no matter what we think their understanding may or may not be.) However, in Lea's situation, I saw providers who wanted to provide the best care possible for their patients to the extent that the patient desires it. But the legal ramifications and administrative hoops were almost prohibitive. The medical system needs to allocate more resources towards streamlining these forms or developing a protocol for how we address these situations. Only then will we be able to best serve our patients by respecting their wishes when we are unexpectedly placed in the driver’s seat.

*The patient’s name and health information have been altered to respect their privacy.