Julianne Meiser, MSS, LCSW, an Outpatient Social Worker in the Division of Neurology at the Children’s Hospital of Philadelphia.
By nature, medical emergencies are unexpected, stressful, and often traumatic experiences. For those living with neuromuscular disease (NMD), seeking emergent medical attention due to an injury or illness carries additional layers of important considerations. Depending on one’s diagnosis, there can be significant medical risks that arise during standard treatments or protocols. While medical staff are well-trained to provide high level hospital care, there is often a lack of education and expertise on rare diseases, making it imperative for families with NMD to advocate for their needs and rely on additional measures of preparedness.
“An unfortunate reality for many people living with NMD is having to educate their emergency medical care team on the nature of their diagnosis,” says Julianne Meiser, MSS, LCSW, an Outpatient Social Worker in the Division of Neurology at the Children’s Hospital of Philadelphia. “NMD’s are rare, and because of that, many medical professionals have a limited knowledge base on the basics of these diseases. In emergency situations, people living with NMD may often need to rely on a caregiver to speak for them and provide this education.”
She shares that one of the most challenging parts of unplanned admissions is explaining your diagnosis to hospital staff and advocating for appropriate care. Depending on the type of medical emergency, you might not be capable of explaining your needs or alerting medical staff to precautions or unique considerations paramount to your care and safety. Julianne advises families to have a medical emergency written summary and medical alert bracelet – and stresses the incredible importance of having an advocate to accompany you.
An advocate in your corner
As many loved ones of people living with NMD have experienced, advocating for the needs of a loved one can be the key difference between negative and positive outcomes while receiving medical care. An advocate can provide information to medical staff regarding specific risks, considerations, concerns, and needs. Whether regarding mobility, medications, or respiratory considerations – an advocate can serve as your voice to educate the medical team about individual needs unique to a rare disease that they might not be familiar with and to help make informed decisions to best meet your needs.
“An advocate can be a parent, spouse, or friend who is familiar with your condition and can speak on your behalf in the event that you are in a place where you cannot speak for yourself,” Julianne says. “Your advocate can be someone you have officially designated to help you with decision making (like a power of attorney) or another loved one who is just there to help speak up for you while you are in the hospital. A Power of Attorney is a legal document that allows another person to act on your behalf. This is something you would have needed to prepare at home ahead of your hospital stay – usually with the help of a lawyer.”
Knowing your risks
In order to advocate for your health and medical needs in an emergency situation, you (and your advocate) need to be aware of your medications, any special considerations based on those medications, and any risks associated with your diagnoses.
“Medical teams always need to know about your current medication schedule,” Julianne says. “An example of this is PJ’s Protocol for Duchenne muscular dystrophy (DMD). It’s named after Philip James “PJ” Nicholoff, a young man who died from complications related to not receiving appropriate stress doses of steroids during a hospitalization for bone fractures. PJ’s protocol was established to give guidance to hospital staff on the use of steroid medications used by individuals with DMD.”
Other considerations can include the need for transfer devices during a hospital stay, the need for assistance or swallowing difficulty while eating, the need for respiratory support or equipment, positioning concerns, and special considerations for anesthesia.
Many of these considerations are truly specific to the individual person and their disease process. Julianne advises people to discuss individual risks and disease specific considerations with their neurologist and neuromuscular care team in advance. “Work with your care team to develop a list of important considerations and specific recommendations that you will need to make the emergency team aware of.”
Advance preparations
“One of the best things you can do for yourself to prepare for a medical emergency is to create and follow an emergency plan,” she says. “To make an emergency plan for going to the hospital you need to think through the information you want to share, your hospital preferences, and any items you want to bring along – and write this down or communicate this to a loved one.”
Your emergency plan should include a medical summary that provides easily accessible information to the emergency team. Include your diagnosis, medications, past surgeries, and information on daily support you require, like transferring or nighttime respiratory equipment. You can access resources like the MDA Emergency Room Alert Summary Card to provide to hospital staff in an emergency. Julianne recommends filling this out and having it in a place you can access quickly. Provide copies to your caregivers and family.
“In the event of an emergency, you may not have time to bring anything to the hospital except for yourself,” she says. “I think having something like a “go bag” is helpful to have on hand. This can be a duffle bag you keep close to the front door. It should contain the medical summary mentioned earlier as well as some important documents like your advanced directives, or a copy of your insurance cards. Additional personal care items like a phone charger and a change of clothes are also helpful to have on hand. These items should be things you will not miss in your day-to-day life but will make things simpler in the event of an emergency.”
Taking steps to prepare for how you will navigate a medical emergency or hospital stay limits danger and stress, allowing for better outcomes both physically and mentally.
Managing stress and expectations during an emergency
Although emergency hospitalizations are unexpected, Julianne recommends mentally preparing for the possibility and managing your expectations during a hospital stay. Working through your emergency plan and organizing your preparation materials in advance can lessen stress during an emergency. Recognizing – and expecting – the mental and emotional toll of a medical emergency or hospitalization can also better equip you to manage stress.
“Managing your expectations and preparing mentally for your stay is just as important as preparing your documentation. Hospitalizations can be upsetting, but there are some things you can do to make things easier,” Julianne says.
She advises families to familiarize themselves with their local hospital’s “bill of rights”, which is a list of your rights as a patient and includes ways you can advocate for your care needs. Take advantage of resources that can help you navigate a hospital stay. Create a plan with caregivers and family members to cover responsibilities like pet care or childcare in the event of a hospitalization. Ensure that your advocates have access to your directives, are aware of what you might need to bring to the hospital in an emergency, and know who to contact on your care team to coordinate your needs with the hospital staff.
The need for emergency medical care is often urgent and scary, and living with a rare disease adds a multitude of additional potential risks. Creating a plan, coordinating with your care team, and identifying advocates to educate medical staff and ensure that your needs are met during a medical emergency can help to mitigate those risks on the road to recovery.
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