Matthew sat across from me in his wheelchair. At 21 years of age, he was used to the stares and the uncomfortable attitude of the physicians with whom he had to meet often to get his healthcare needs met for his cerebral palsy, his speech impairment, and his cognition limitations. I was one of those yet-to-be physicians unsure where to go with my physical exam, my history taking, and planning a plan. As a fourth-year medical student on a neurology rotation, I was out of my comfort zone. I had not been taught how to engage in a physician-patient therapeutic relationship with a patient who was physically disabled and cognitively impaired. Matthew looked at me, and I looked back at him, both of us waiting for the other to make the first move. A deep breath surfaced from my chest, and I said a simple “hello.” No response.
What do I do next? The history-taking and physical exam templates I was taught to use with all patients should have been helpful here but were not. How was I supposed to take care of this patient? Leaning on my readings of medical ethics that I had engaged in from a need to better understand how and why the hard decisions were made at the bedside and the consequences thereof, I moved to finding a place of “caring about” and “caring for” Matthew. Leaning forward, I reached out my hand and placed it on his, no words spoken, a smile on my face, and waited. Finally, a smile on Matthew’s face appeared, a slightly off-balanced smile all the same, and we were connected. There was so much to learn about taking care of, caring about, and caring for a patient with disabilities. And so here it is. We are still not where we need to be in teaching medical students how to do so.
So, what is this all about, and why am I bringing it up? Matthew is clearly entitled to appropriate, timely, and equitable care. This falls into our wheelhouse as physicians as an ethical imperative. There is no reason Matthew must face multiple barriers to accessing healthcare services. Those barriers can result, and yes, some patients with disabilities end up with adverse health outcomes. However, health disparities should never be made because of a person’s limitations. A person is a person, no matter what.
Matthew was at risk of being vulnerable to disregarding his autonomy and dignity due to what some physicians envision as seeing those with disabilities as stereotypes, stigmatizing them, and garnering negative attitudes. Aren’t we all entitled to autonomy and dignity regardless of what we are? Or even better yet, it’s about who we are that matters most. The person. Personhood. The makeup of our character. Autonomy is the mainstay of medical ethics, always looking to give the patient the entitlement of self-directed care, their goals of care, and the decisions they make about life. Even those who cannot engage in a conversation have a say. A nod, a look, the unspoken word of a facial expression can be enough to be heard. They may not be able to elucidate their healthcare preferences and goals. Still, we can undoubtedly listen by being present when present by being authentic and genuine in our caring.
Matthew had a unique background, a culture rarely embraced, and a family far from the norm. To better understand his “who”, I needed to recognize and respect the unique cultural, social, and personal contexts of his disability and how each would influence his healthcare decisions and outcomes. He is a Roma. The racist term would be “Gypsy” and brings with it the stigmatization of being less worthy than others. Being Roma, or Romani with Romanian origins, carries the culture clash with modern-day Western society. Add to Matthew’s culture and heritage, his disabilities, and he is set up for being less than worthy. I knew little, if anything, about the Roma community and found myself turning to the elders who were with him. I wasn’t even sure who his parents or guardians were. All I knew was that they had brought him here and that they cared for him. Unconditionally. So why couldn’t we, as physicians, do so as well?
We embrace the ethical principles of non-maleficence and beneficence as physicians, protecting our patients from harm and doing good. We should also apply these principles to caring for disabled patients. Learning how best to care for disabled patients is not only a matter of competence but also a matter of ethics. We have an ethical obligation to respect the dignity and autonomy of disabled patients, provide equitable healthcare access, avoid harm, promote beneficence, and foster professionalism and integrity. And to recognize them as persons. We should prioritize disability education in our medical school curricula to ensure that future physicians have the knowledge, skills, and attitudes necessary to provide ethical and equitable care for disabled patients. To know them as persons worthy of all that they are entitled to. No more, no less. And we need to be more open to accepting medical students with disabilities. Yes, we may need to have resources for them. However, if they meet the rigid admissions process, the rigors of medical school, and the practice of medicine, then so be it.
As I sat with Matthew, I wanted to ask him to share what he sees regarding his medical care. However, I knew he would be unable to. We expect to learn from challenges and sometimes conversations about complex topics; difficult ethical issues like this one are like climbing walls, which is why I write this blog.
With our hands clasped in each other’s, I recognized his smile as one of thanks for accepting him for who he was. We can do better for those who are looked upon as different. Let’s make sure we have the teaching in place for medical students to do so. We need to commit to caring for those with disabilities.