When your loved one has to be admitted to the hospital, it can be scary, stressful, and at certain points very overwhelming not only for you, but also for the person needing the health care. What I have learned after caring for my son who was born at 26 weeks and experiences hydrocephalus (cerebral spinal fluid does not drain properly and requires a shunt to drain the fluid to his peritoneum) is that when he is in the hospital, I never leave him alone. I have always been deeply involved in his health care, much to some nurses’ and doctors’ irritation… However, after what we have experienced in the hospital, I believe it is vital that your loved one has an advocate to ensure the best care possible is delivered and also to help when a nurse or certified nursing assistant can’t get to the room quick enough to assist. For example, if your loved one is receiving intravenous antibiotics, which can cause explosive diarrhea or potentially life threatening allergic reactions, sometimes it can take 5 – 15 minutes for someone to respond to a call button. By that time the situation can be much worse if your loved one is alone.
During one hospitalization, my son developed Red Man Syndrome, which is a sudden allergic reaction to vancomycin. One minute he looked fine and literally two to three minutes later, he was red from his chest up to his forehead. After pushing the call button and waiting one minute with no response, I ran to the nurses’ station, where no one was there, found a nurse down the hall and demanded to have the IV stopped. The nurse had the nerve to argue with me that she didn’t think my son was having an allergic reaction. I demanded again to have the IV stopped and for her to call the doctor. While she was calling the doctor, I googled allergic reactions to vancomycin and discovered Red Man Syndrome where 47% of people receiving IV vancomycin develop the allergy. When the nurse came back, I showed her the information and she was shocked. I’ve even had to ask phlebotomists (technicians who draw blood) to put gloves on before they take blood or start an IV on my son.
The unfortunate reality of what happens in hospitals is that many staff are overwhelmed, may have had a mediocre education, or perhaps chose health care for less than authentic reasons. I have witnessed nurses purposely medicate a loved one in order to make their day more manageable. I have personally experienced less than adequate health care while hospitalized for preterm labor and miscarriage, and I look back now realizing that these events occurred while I was alone.
Here are some helpful hints to prepare for a potential hospitalization:
Do your homework about your local hospitals. The Joint Commission is an independent, non-profit organization that accredits and certifies over 20,000 health care facilities in the nation. They have an online “Quality Check” tool where you can see how your local hospitals are rated (http://www.qualitycheck.org/consumer/searchQCR.aspx). Another safety rating organization called the Leapfrog Group is composed of a group of large employers that came about to discuss how they could work together to use the way they purchased health care to have an influence on its quality and affordability. They collect data on hospitals all over the nation and produce a Hospital Safety Survey that consumers can check (http://www.leapfroggroup.org/).
Evaluate your doctors and health care staff. Do they listen? Do they respond in a timely manner? Do they treat you with respect and compassion? Do they empower you to manage your own health care? Are they open to holistic options and discuss the importance healthy nutrition and exercise?
Empower yourself with information about any diagnosis your loved one may experience, treatment options, and any local, state or national organizations specializing in that health condition. Your state Family to Family Health Information Center can help you with that (http://www.familyvoices.org). PAVE supports the WA State Family to Family Health Information Center and you can contact Jill McCormick, the Program Director at JMcCormick@wapave.org .
One of my colleagues at PAVE shared this helpful hint: Have an overnight bag packed and in the trunk of your car because you never know when you might have a medical emergency with a loved one.
Establish a local network of friends and family members who can support you when you need a break.
Ask questions to medical staff about what drugs or procedures are being used, why, and any side effects. Insist they wash hands when they come in the room or use gloves. Understand there is a reason it is called “the practice of medicine.”
Use medical alert bracelets to identify allergies, implanted devices or diagnoses. These tools can be vital in alerting emergency personnel if you or your loved one is unconscious.
Complete your own advance directive and help your loved one complete it as well. After experiencing the tragic death of my mother who did not have an advance directive, my sister and I had to witness her suffer because her husband insisted on ineffective life support. My son and I have completed ours and we carry them with us.
According to the Leapfrog Group, “there are more deaths in hospitals each year from preventable medical mistakes than there are from vehicle accidents, breast cancer, and AIDS.” During my son’s last hospitalization in 2012, my father who was, at the time, CEO of Providence Alaska Medical Center, leaned over to me while we were in the emergency room and whispered, “Don’t leave him alone.” So I didn’t. And I will not. Not for as long as I live.
There are many transitions in the life of a child impacted by disabilities. One transition that is often set on the back burner is the medical transition from pediatric to adult care. This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.
It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with. If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself. The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic. If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time. A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like. There are tools online that help with communication and getting ready for a doctor’s visit. One very good tool is at http://hctransitions.ichp.edu/gladd/ They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.
GLADD stands for:
G(ive) – Give information about how you are feeling and what you have done to stay healthy
L(isten) – Listen carefully to your health care providers and learn to
A(sk) – Ask your doctors the questions you have about your health
D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next
D(o) – Do your part in following the plan.
This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation. Other such tools can be found at: http://healthytransitionsny.org and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan. From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities. Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.