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Six questions to see if you are at the center of your MS care

By Gay Falkowski


The most effective healthcare for people with chronic conditions such as multiple sclerosis keeps the individual with MS at the center of care. The treatment plan addresses all the ways MS affects the individual – psychologically, socially, and physically. When you are treated with a person-centered care approach, you are listened to, informed, respected, and involved in your care. 

“Person-centered care is a method of care that treats the patient as a person within the context of their lives, family and community support, mental and emotional state, beliefs and preferences. It is based on good communication and a partnership approach between clinician and patient with the aim of improving patient self-management, care outcomes, and satisfaction,” says Marie Ennis O’Connor, a board member of the Patient Empowerment Foundation.

So, how do you know if you are at the center of your MS care? You can start by asking yourself the six questions listed below. They are based on research conducted by the Picker Institute in conjunction with the Harvard School of Medicine.

If you conclude that you’d like to move closer to the center of your healthcare plan, the first step is to let the members of your care team know about your values and preferences. To improve your chance of being heard, avoid complaining and instead make positive suggestions. For example, instead of saying, “No one listens to what I want,” say, “I have an opinion about this and it’s important to me that you hear what I have to say.”

1. Do you feel your values, preferences, and expressed needs are respected?

A basic guideline of person-centered care puts people and their families at the center of clinical decisions. Each person brings their own unique preferences, concerns and expectations to the table, and these values should be integrated into decisions. Healthcare providers and patients bring different but equally important expertise to the decision-making process. Patients and their families bring their experience of living with a disease, their social circumstances, and preferences. This is especially relevant in chronic health conditions such as MS, where the patient may have many years of experience with symptoms and treatment responses.

2. Is your care well coordinated between all your providers?

Unless you’re able to receive care from an MS Center, where care is coordinated with specialists at the center, you may be receiving care from multiple healthcare providers who work independently from each other. If this is the case, make sure your providers know you want them to communicate with each other about their role in your MS care, updating each other when they make important care changes. Research shows that patients highly value coordination of their care. They consider it an important component of overall quality, especially when coping with chronic health problems and complex needs. 

3. Are your information, communication, and educational needs being met?

How much information you want to have about your MS may be different from how much information someone else wants to have about their MS. People who take an active role in decision-making may want a lot of information, while those who delegate decision making entirely to healthcare providers may want less information. When your care is person-centered, information is customized to your specific needs. In general, information about your MS needs to be easily available to you. It should be communicated to you in a way you can understand. 

4. Are you as comfortable as possible?

Attention to your comfort should address not only the physical aspect of pain, but also the psychological, social, and spiritual impact pain has on your wellbeing. Person-centered care includes timely, tailored, and expert management of symptoms such as pain or other discomfort. 

5. Have you been offered emotional support and relief from fear and anxiety?

Fear, anxiety, grief, depression, and sadness – these are just some of the conditions and emotions people with MS may experience. If they’re not addressed, they can be just as debilitating as the physical effects of the disease. Yet, the emotional aspects of chronic conditions are often overlooked when developing a treatment plan. In person-centered care, clinicians play an important part in helping their patients to maintain healthy coping skills. Often a psychologist or counselor becomes part of the healthcare team.

6. Is the involvement of family and friends acknowledged in your care?

Family members and friends who support and care for you are your caregiving team. When appropriate, they may even be with decision-making. They should be supported as caregivers, made to feel welcome and comfortable in the care delivery setting, and recognizing their needs and contributions.