Why You Should Practice Shared Healthcare Decision-Making

Facing a neuromuscular disease diagnosis can be overwhelming, but the more that individuals and their caregivers can be involved in the treatment plan, the more empowered they will feel. Gone are the days when a doctor simply gave instructions and sent the patient on their way.

“It used to be that you went to the doctor, and the doctor told you what you were going to do,” says Matthew Harms, MD, a neurologist and Director of the MDA Care Center at Columbia University. “Now, the best healthcare comes when the patient is in the driver’s seat, and their route is informed by the information they receive from their care team.”

This concept of putting the patient in the driver’s seat is known as shared decision-making. It is a collaborative approach where individuals and their healthcare providers make decisions together, considering medical evidence and the patient’s personal preferences, values, and lifestyle.

In neuromuscular disease care, this approach is especially critical given the progressive nature of these conditions and the frequently changing landscape of emerging therapies and clinical trials.

Benefits of shared decision-making

Research has shown that shared decision-making is especially beneficial for those with ongoing medical conditions.

For example, a 2017 study published in the journal Circulation: Cardiovascular Quality and Outcomes found that people with heart disease who went through shared decision-making had better physical and mental health, better medication adherence, and lower hospitalization and emergency department use rates.

Neuromuscular conditions often require complex, ongoing management. This makes shared decision-making more than a nice-to-have; it’s a must-have for effective care.

“When you introduce choice to a family, and they have time to consider the options, their ability to follow through on a plan improves significantly, leading to better outcomes,” says Saunder Bernes, MD, a pediatric neurologist and Director of the MDA Care Center at Phoenix Children’s Hospital.

This collaborative approach fosters trust and a sense of empowerment. It also accommodates individuals’ and families’ diverse needs, such as scheduling flexibility for multidisciplinary care.

“Not every family can manage a full day of appointments,” Dr. Bernes says. “Shared decision-making allows us to adapt care plans to their unique circumstances.”

Key areas of care

Along the neuromuscular disease journey, families face many difficult decisions. Here’s how shared decision-making works in some common areas of care.

1. Treatments and therapies

Treatment options for neuromuscular diseases vary in their administration, side effects, and lifestyle implications.

“For milder forms of spinal muscular atrophy (SMA), for instance, one medication requires spinal tap administration while another is taken orally every day,”
Dr. Harms says. “Patients must weigh factors like convenience, potential side effects, and long-term implications to make an informed decision.”

Receiving clear information about the risks, benefits, and practical aspects of each option is essential. Dr. Harms advises telling your healthcare team if you don’t understand something. They should welcome questions and provide as much information as you need to fully understand your choices.

2. Surgeries

Surgical interventions, such as scoliosis correction or gastrostomy tube placement, can address symptoms or improve daily life but require careful deliberation.

“Families need to understand the natural history of the disorder and the expected outcomes of surgical procedures before making decisions,” Dr. Bernes says.

Shared decision-making ensures that surgical recommendations align with the individual’s goals and lifestyle.

3. Palliative care

Palliative care is often misunderstood as being synonymous with end-of-life care. However, with neuromuscular diseases, it encompasses symptom management and support to improve daily living throughout the course of the disease. For example, palliative care may involve treating pain and depression or addressing sleep issues.

“It’s crucial to introduce palliative care discussions early, so families understand it’s part of ongoing care, not just for advanced stages of the disease,” Dr. Harms says.

This proactive approach demystifies palliative care and integrates it seamlessly into the overall care plan.

4. Clinical trials

Participating in clinical trials can provide access to cutting-edge treatments but sometimes involves significant commitments.

“We discuss alternatives to participation, the potential burdens of travel, and the risks involved, ensuring patients and families are fully informed,” Dr. Harms says. He generally begins the conversation during a clinic visit and then dedicates time to address families’ follow-up questions.

Your healthcare providers can also alert you to other opportunities to participate in research, such as natural history studies that track the course of a disease, which may lead to better treatment. It’s important to have all the details and know what to expect before joining any research study.

The value of specialized care

Neuromuscular specialists, such as those available at nearly 200 MDA Care Centers nationwide, are a vital resource for patients with neuromuscular diseases. These providers offer access to multidisciplinary teams of experts, advanced diagnostic tools, cutting-edge treatments, and more. Beyond medical care, specialized providers also provide access to social work services, mental health support, occupational therapy, and resources for durable medical equipment.

“It’s more than just managing the symptoms; it’s about slowing the disease progression whenever possible,” says Nora Capocci, MDA’s Executive Vice President of Healthcare Services. “Bringing in all the experts, having access to the latest research and clinical trials, and providing that full wraparound support is crucial to ensuring our community members receive the best care possible.”

This holistic model is essential for managing the complexities of neuromuscular diseases.

“Often in caring for these patients, when you pull on one string, it affects another,” Nora says. “They’re so much more than their neuromuscular disease; they’re a whole body, a whole person, and a knowledgeable specialist can provide care.”

Currently, there are MDA Care Centers in 46 states, with over 3,200 providers who saw more than 70,000 patients in 2024.

Best of both words

Shared decision-making is not just a method — it’s a mindset that places individuals at the center of their own care. It respects their autonomy while leveraging the expertise of specialized healthcare teams to deliver the best possible outcomes.

“Neuromuscular disease treatments and interventions are evolving extraordinarily quickly,” Dr. Harms says. “Specialists have insider knowledge of developments long before they’re widely available, ensuring patients get the most up-to-date care.”

By fostering open communication, building trust, and aligning care with individuals’ goals, shared decision-making creates a supportive environment where the individual feels empowered to navigate the challenges of their neuromuscular disease
with confidence.

“There are so many different choices now — what to do, when to do it, how safe it is — that there’s no way of proceeding without making decisions together,” Dr. Bernes says. “It’s about giving patients options and then giving the family time to decide based on their socioeconomic status, personal beliefs, where they live, and more. There are so many issues that come up, and it’s our job to help them navigate, not tell them what to do.”

Meredith Landry is a journalist focusing on health and sciences.

7 Reasons to Choose a Specialized Healthcare Provider

For people living with neuromuscular diseases, having a neuromuscular specialist is invaluable. Matthew Harms, MD, a neurologist and Director of Columbia University’s MDA Care Center, shares several reasons why:

1. Expertise beyond medicine. “When a care specialist sees hundreds of individuals with a particular disease, they pick up some things you won’t find online about care hacks or best practices. They’ll have insider information on which brands of equipment actually deliver, and which ones have higher repair needs.”
2. Up-to-date knowledge. “Neuromuscular disease treatments and interventions are evolving extraordinarily quickly. Care specialists are the ones who will have heard about those developments long before they’ve managed to make it to the internet, and usually with more accurate information.”
3. Tailored treatment plans. “As physicians or clinic care team members, we don’t know what might be doable or possible with the amount of time you have, the amount of caregiver support you have, or what else you’re trying to accomplish. However, because of our breadth of experience in the space, we have a lot of experience in being creative and flexible.”
4. Access to clinical trials. “We tell our patients about studies they may qualify for in as unbiased a fashion as possible. We go over the alternatives, the relative risks, the burden on their time, and other factors to help them think through the options.”
5. Proactive palliative care. “Palliative care is something that should be taking place all along the disease severity spectrum. It’s extraordinarily important and gets far too little attention.”
6. Continuity of care. “One reason to continue seeing your neuromuscular specialist on a regular basis is to stay connected to the art and evolution of medicine for your disease.”
7. Telehealth and accessibility. “We are seeing patients in clinic less frequently, but we’re seeing them in their homes more often. Many times, we can do 90% of what we need to do virtually instead of in person.”