Your life is too precious to be left in the hands of others. Whether you are newly diagnosed with ALS/MND or have been living with the disease for years, when it comes to making decisions about your care and quality of life, the most important thing to remember is that you are in charge.
Facing an ALS/MND diagnosis can be devastating, overwhelming and confusing. In addition, even with the best education and experience, no single medical provider can master all there is to know about any particular subject. Doctors know a lot about a lot of things, but they don't always know everything about you or what is best for you.
That’s why empowering yourself to take control of your care is essential. In fact, when people take an active role in their care, research shows they fare better—in satisfaction and in how well treatments work.
Many patients and their loved ones become worried or intimidated when visiting an ALS/MND clinic. After all, physicians have gone to school for many years, use words that we may not understand, and often seem so busy that patients feel there won’t be enough time to really talk.
Most medical practitioners try to do their best for their patients and are usually more than happy to answer questions. But, like many people who have spent years studying and working in a specialized field, they sometimes forget that the rest of us don't have the benefit of their vast knowledge and experience. However, by advocating for yourself and meeting your healthcare team half way, you resist the temptation to be a passive patient and you can reap numerous benefits too.
Just as your medical providers have areas of specialization, you have expertise to contribute regarding your personal needs, preferences and experiences. Your active participation will help get more of your needs met and may provide your healthcare team with information they otherwise might not have.
One of the best ways to be your own advocate is by thinking ahead. Because time is limited during appointments, you will feel less rushed if you prepare your questions before your clinic visit. Don’t be afraid to ask them. Clinic Coordinators and Neurologists often tell us they wish their patients would be more proactive during their appointments. We suggest patients and their loved ones bring the following 20 questions when visiting the ALS/MND clinic:
1. Which support personnel (physical, occupational, respiration, nutrition, speech, etc.) are available for consultation at this clinic?
2. Do you maintain the services of a psychologist, therapist and/or social worker?
3. Is this clinic sponsored and supported by ALSA, MDA, or MNDA?
4. How often should I come back for an examination?
5. How long will I be here each time?
6. How many other patients are scheduled at the same time?
7. How involved is the clinic in current and upcoming clinical trials?
8. Will I have access to advance trial information and participation?
9. How many patients with ALS/MND does the clinic serve in a year?
10. Does this clinic have a relationship with a rehabilitation center to which I have access?
11. Does this clinic offer home visits and, if so, how often?
12. In the absence of home visits, is there any telecommunication system (such as Skype)?
13. What kinds of respiration support methods and systems does this clinic endorse?
14. What support services does the clinic offer family, caregivers and children of ALS/MND patients?
15. If I have to cancel an appointment, how soon afterwards can I expect to be seen?
16. Will my views and decisions be treated respectfully?
17. If I need equipment, will clinic personnel evaluate my needs and assist me in obtaining equipment?
18. Who is my primary contact and what is his/her direct dial number and email?
19. Will phone calls be returned promptly?
20. May I please have a written recap of my visit that includes the names and titles of the members of my healthcare team, a list of their recommendations for me (i.e. medications, diet, exercise, etc.), and anything else important that we discussed?
Asking questions is important, but so is making sure you hear—and understand—the answers you get. Take notes. Or bring someone to your appointment to help you understand and remember what you heard. It is very important to understand the plan or next steps that your healthcare team recommends. If you don’t understand or are confused, ask your medical provider to explain the answer again.
Remember, healthcare is a team effort, and you are the most important member of the team.