By Sameer Sheth, MD, PhD, Professor of Neurosurgery, Cullen Foundation Endowed Chair, Vice-Chair of Research, McNair Scholar, Department of Neurosurgery, Baylor College of Medicine, and Director, Gordon & Mary Cain Laboratories, Texas Children’s Hospital

Many patients that neurologists see will never need surgery, so when patients are finally referred to a neurosurgeon, it may be all too easy for us to assume we know what’s best. After all, we’re the brain surgeons with years of training. We understand things about how the mind works that people without medical training can never comprehend. But a paternalistic attitude towards patients can be frustrating for them and for their loved ones, precisely because they don’t know what we do. At St. Luke’s Health, we have worked hard to build a neurosurgical program that keeps patient perspectives at the forefront of everything we do, and it’s made a difference in our care.

Culture Matters

A focus to understand patient needs is rooted in the culture of St. Luke’s Health. We can do many procedures as physicians and as neurosurgeons, but it only matters if we are matching what we deliver to what the patient needs. That’s why our top-ranked neurosurgery department works to assess and prioritize patient needs for every type of procedure. 

If your hospital culture always starts with what the patient wants, it’s easier to address their concerns and fears. When patients and families can see that we are truly listening, they have a higher level of trust when planning for surgery.

Keep the Patient Involved in Decisions

Sometimes our practice can be a delicate balance between clinical guidance and patient autonomy. I try to spend around an hour with every patient before making a final decision to embark on surgery, explaining what to expect and listening to their concerns. Often, I find that they really just want reassurance that they are making the correct choice—whether that choice is to proceed with a surgery such as neuromodulation or to not get surgery after all.

I also find it important to have families and caregivers involved in this conversation. Around 95 to 98 percent of the time in these non-emergency procedures, patients are fully able to make decisions for themselves, even if they are quite sick. But involving families in the process helps everyone feel more informed and more comfortable with the process. This way we can discover together whether surgery is the right next step. I always want a good outcome, and I feel like that happens after a comprehensive discussion where patients have all their questions answered, even if the outcome is that the patient chooses not to get surgery. My feeling is that as long as patients are informed and as long as I feel they know everything there is to know about their options, then whatever choice they make is the right choice.

Listen to Patient Concerns

If you’re not a neurosurgeon, the concept of brain surgery is often frightening. Patients usually have preconceived notions of what brain surgery is and often associate it with medical emergencies and serious trauma. That is going to influence their thought process when considering brain surgery for conditions that are not traumas, such as Parkinson’s disease, epilepsy or depression.

When talking to patients, I make sure this is addressed upfront. I say, “Yes, this is brain surgery, but it’s also something we do day in and day out. There are risks, but they’re very small, and here’s how we mitigate them.” I want to be honest about risks, but the reality is that these are safe procedures, and I think they need to know that. Once we talk about it, they realize the risks are quite low. 

On the flip side, it’s equally important to know what patients’ goals are when it comes to surgery. Are they trying to go back to work after a worsening Parkinson’s diagnosis or do they simply want to enjoy retirement? Do they want to improve epilepsy symptoms so they can drive again? Do they just want to be able to function better during daily activities after a long bout of depression? Understanding these goals will help ensure they are getting the right procedure and one that is tailored to their needs, as different procedures and different surgical techniques have very different ramifications in terms of physical limitations afterwards.

Learning From Patients Over Time

My personal approach has evolved over the years as I have learned and grown from my patients. I explain things differently than I once did, striving to use language that resonates with both the patient and their specific case. I try to keep in mind factors such as their marital status, their family concerns, their age and their background during the conversation and tailor my discussion to address those concerns. 

With more experience, I’ve learned to read people better and notice how they respond to what I am saying. Do they seem to understand my recommendations, or are they confused? Do they appear comfortable, or do they seem ill at ease? Depending on their reactions, I can change my approach to better understand what they want and need and what they are worried about.

Ultimately, what we do as neurosurgeons should always come down to the patients and their families. As clinicians, we know our disciplines thoroughly—we’ve worked and trained hard to get where we are. But we are only performing the surgery, not living with it. It is imperative to always put the patient front and center. When you do that, you will find it is easier to make a connection and impart the information that you have. Listening to patients and spending enough time with them is crucial to helping neurosurgery patients have the best outcome.