For plenty of people, the desire to be released from the hospital is urgent the minute they slip on their admission wristbands.Those with neuromuscular diseases, however, often find they require more hospital care than the average person, so making the experience as smooth and comfortable as possible is important.
Hospital patients who recognize their needs and communicate them to the medical personnel on duty are most likely to be safe and satisfied with their treatment. Eating, toileting and positioning are fundamental areas where extra precautions may be necessary.
Make Sure They Know You
Anita (Amy) Ashdon, 38, for example, estimated she’s been admitted to a hospital more than 20 times since 1990. In most instances, Ashdon, who has spinal muscular atrophy type 2, needed intravenous antibiotic treatments for infections. She’s also been hospitalized for sleep studies, a broken femur, temporary organ failure and other reasons.
Ashdon, of Walpole, Mass., usually goes to Children’s Hospital Boston, which has pediatric-sized equipment geared more to her petite size.
Because Children’s is a teaching hospital, care providers there are more familiar with her SMA than those in nonteaching hospitals. Still, she acknowledged, “Teaching hospitals have different teams every semester. So while hospitalized, it’s ‘doctor du jour time’ no matter who you’ve seen as (an) outpatient before.”
On the basis of her experiences, Ashdon said she would suggest that hospital patients with neuromuscular diseases have a family member, friend or personal assistant with them at all times to assist with everyday care, such as eating, toileting and positioning.
This is costly for her, because the state of Massachusetts won’t pay for personal assistants while Ashdon is hospitalized. Still, she feels the measure is necessary: “Most times, staff are too afraid or nervous to safely care for me because their training never covered the extent of my daily care needs.”
She added, “When you’re feeling sick, it’s even more stressful to have to train every different shift every day of your hospital stay on how to do the most basic things.”
In the hospital, Ashdon has encountered nurses unfamiliar with operating Hoyer lifts, a physical therapist leery of making an equipment adjustment and an X-ray technician who chastised her for being unwilling to sit on a wheeled stool.
Ashdon has learned to take control in such situations. She advised that hospital patients memorize the federally issued patients’ bill of rights (www.
consumer.gov/qualityhealth/rights.htm). If rights are in question, patients should contact the hospital’s patient advocacy department.
Ashdon has found it helpful to distribute informational materials about her disease and disability. Spanish-speaking hospital employees have thanked her for providing copies in Spanish as well as English.
MDA clinics often have handouts that would serve the purpose. MDA publications, such as MDA’s “Facts About” booklets and Quest articles, can be found at your MDA office or printed from the MDA Web site (www.mda.org/publications). Ashdon also uses materials from the Osteogenesis Imperfecta Foundation (www.oif.org) that address fragile-bone issues people with SMA routinely face.
For her own comfort in the hospital, Ashdon takes pillows, a cell phone with earpiece, blood pressure equipment with a pediatric cuff and hair-washing equipment. If she’s able to get out of bed, she takes her power chair with charger and lap tray, too, but she insists on keeping the chair within her sight.
Bring Your Own
While Ashdon found that the hospital scene needs much improvement in terms of treating people with neuromuscular diseases, Peggy (Mary Margaret) Chun, 60, of Nuuanu, Hawaii, described her overall hospital experience as excellent.
Found to have amyotrophic lateral sclerosis (ALS) in 2002, Chun estimated she’s been treated 10 times at the Queen’s Medical Center in Honolulu for reasons such as tracheostomy and g-tube placement, pneumonia and g-tube reinsertion.
“Because I am completely paralyzed, needing suction [clearing the throat with a device] and mouth Yankauering [clearing the mouth with a suction device] constantly,” Chun said, “I have either a nurse or a trained volunteer with me because hospitals can’t provide the kind of 24-hour care I need, even in ICU.”
After a long hospital stay during which she became constipated, Chun said she often takes her own Hoyer lift for toileting. In addition, she brings special pillows, arm and foot braces, a spell chart for rapid communication, and an EverGain Chi machine that moves her feet and legs to improve circulation and offer pain relief all night. For pleasure, Chun takes a DVD player with movies, music and meditation CDs, photos of friends and family, favorite wall posters and paintings from her grandchildren; in brief, “anything to make the room homey.”
Competency, honesty and compassion are the qualities Chun expects in her medical team. They can exhibit these attributes, she said, “by keeping in touch regularly and being honest about progression of the disease.” Communicate Expectations
Barbara Yodice, 34, of Brick, N.J., has similar expectations of the staff treating her at various New Jersey hospitals. Yodice, who was found to have myasthenia gravis in 2000, estimated she has been hospitalized 17 times in her life.
“I expect my medical team to be educated about my illnesses. I also expect them to give me respect and compassion,” Yodice added. “I will not allow my doctors to make me feel rushed. If I have questions, they are not leaving yet. I want them to be human, not like robots that are just on a mission.”
Yodice said some nurses and other staff could educate themselves more about myasthenia gravis and neuromuscular diseases. She recalled an ICU nurse who kept talking about her daughter’s multiple sclerosis. The conversation made Yodice feel that she, the patient, and her condition were being dismissed.
As the founder of the Autoimmune Information Network (www.aininc.org), Yodice advised that people with special needs may want to investigate a hospital’s qualifications even when they’re in good health.
For example, the way hospitals deal with dietary matters can be revealing. Yodice encouraged checking whether, for example, the kitchen can puree food if swallowing is an issue for the patient, or if they have meal replacement drinks for optimum nutrition.
Hospital accreditation provides
a comprehensive evaluation, too, of how hospitals are meeting health care standards. The Joint Commission on Accreditation of Health Care Organizations (www.jointcommission.org), based in Oakbrook Terrace, Ill., offers an online Quality Check service
(www.qualitycheck.org) where people can access reports on the accreditation status of specific hospitals.
Ultimately, Yodice concluded, the most important feature of a hospital is a willingness to provide quality care. She said, “Look for hospitals that will make modifications to help you as best they can and that are willing to make your stay easier.”
Collaborate With Staff
Jennifer Michaels, associate professor of neurology at the New Jersey Medical School (part of the University of Medicine and Dentistry of New Jersey in Newark), agreed. She said the staff at the University Hospital in Newark (also part of UMDNJ and location of an MDA clinic of which Michaels is co-director) is striving to foster a satisfying outcome for patients by educating a wide range of personnel on particular life-enhancing protocols.
“Our respiratory therapists are expertly trained in the use of non-invasive techniques to support normal breathing and effective coughing in patients with neuromuscular diseases,” Michaels explained. “Because of that, we can often avoid or limit the use of surgery to connect a ventilator to the trachea, the passageway for air in the neck.” She added, the nurses in the intensive care and neurology services have gained a great deal of skill in caring for people with myasthenia gravis, since the MDA clinic treats so many patients with this neuromuscular condition.
Meanwhile, collaboration and communication between hospital staff, patient and the patient’s regular physicians remains crucial. “Patients should inform their MDA clinic physicians when they are admitted, or are planning to be admitted, to the hospital,” Michaels said. “This will allow the optimal care and communication between all the professionals involved.”
Lenka Vodicka, 34, of Nevada City, Calif., hasn’t needed many overnight hospitalizations since she received a diagnosis of Charcot-Marie-Tooth disease at 13. Still, she’s had a number of tests and procedures, and is well acquainted with the hospital system.
Vodicka has worked with several specialists and a family doctor, but she said no one really had a complete picture: “I don’t feel I have anyone in my extended treatment network that really treats the whole of my experience.”
In an effort to address that communication breakdown, Vodicka has created a one-page explanation of CMT and how the condition affects her. On this sheet, she lists a few Internet links in case medical personnel can do some additional research.
This joint patient and medical team approach makes sense to Eric J. Sorenson, head of the neuromuscular diseases section, Department of Neurology, at the renowned Mayo Clinic in Rochester, Minn., and director of the MDA clinic there.
“Any inpatient stay is more successful if the patient and the hospital staff work more in terms of a partnership, with patients involved in decisions on testing, treatments and care during their stay,” Sorenson reasoned. “I wouldn’t say that it is the responsibility of the patient, but an involved patient is more likely to have a satisfactory outcome.” |
Hospitals can be frightening for anyone, especially kids. Children with neuromuscular diseases often experience the poking and prodding of a medical procedure without completely comprehending its necessity or benefit.
Most hospitals try to do their part by having the appropriate equipment, specialists and policies in place to treat young patients and help them feel at ease.
Preoperative evaluation by all of the involved specialists can not only lead to better postoperative care, but also create an opportunity to review the usual patterns of recovery. Hospital personnel may also have the capability to connect new patients to others who have already experienced the same surgery.
Thomas Crawford, associate professor of neurology and pediatrics at Johns Hopkins Children’s Center in Baltimore, for example, said that linkages between departments and child life specialists can help to ensure that realistic and age-appropriate goals have been set for children.
“It is usually the case that no one individual — physician, nurse, therapist, parent or patient — has the full picture about the best path for care,” he explained.
“The key issues of care in children with severe neuromuscular disorders generally involve concern about respiratory care and mobility,” Crawford said. “In the acute setting, respiratory and cardiac issues are often paramount, and the Hopkins system has the full range of equipment and experience necessary.”
Meanwhile, some hospitals are recognizing the comforting value of a loved one’s presence. “Family-centered visiting policies are a fairly new concept,” said Tamara H. Murphy, gerontology clinical nurse specialist at the Milton S. Hershey Medical Center in Hershey, Pa. She added, however, they have existed much longer in the pediatric community than in other areas of the hospital.
“We have a family-centered visiting policy and try to accommodate those with special needs by allowing a family member or caregiver to stay, especially if it augments the patient’s care or comfort,” said Murphy. “Larger, more progressive hospitals are most apt to allow this kind of liberal visitation and patient support. It is an evolutionary process, and people should call their individual facilities first, to check on their policies.”
Parents and caregivers, after all, really are the people with the role of advocating for their child and keeping his or her emotional well-being uplifted.
Barb Jones’ 10-year-old son, Kyle, has Duchenne muscular dystrophy and has been treated at several Pennsylvania hospitals. When he needs medical attention, Kyle’s parents assure him that he won’t be left alone, and they bring familiar items, such as stuffed animals, from home to give him a sense of security.
Jones said that, as her son has matured, he’s less scared about hospitalizations. But he’s now more nervous when he understands what’s entailed. She credited caring medical staff, who frequently smile, with relieving some of Kyle’s natural apprehension.
Kristal Koehler has yet to face many hospitalizations with her 6-year-old son Brett Wilson, who has SMA2. She has assembled a team of specialists and equipment so most medical situations can be addressed at their Raytown, Mo., home.
A BiPAP machine, cough assist, pulse oximeter, nebulizer for breathing treatments and pediatric stethoscope are among the instruments she has for use. Brett also has a g-tube to help prevent dehydration.
Koehler said her intent is to protect her son from illnesses he could contract in the hospital. If, however, he does require hospitalization, she expects to take him to a location with an MDA specialist.
Robyn Gutierrez, 4, of San Jose, Calif., has had five hospitalizations in her life. Aarica Gutierrez said her daughter, who has Ullrich’s congenital muscular dystrophy, has taken the visits pretty much in stride.
“After the first stay, we learned to just try to keep calm and relaxed about it, so she’s not worried too much.”
Aarica packs plenty of activities to keep her daughter occupied, and she depends on hospital staff to be open to her insights as Robyn’s parent.
“There’s nothing worse than knowing something that could help, and feeling like the doctors think they are the only experts in the room,” she said. “They don’t know your child like you do.”
Aarica ultimately credited her daughter’s upbeat attitude for their successful hospital experiences: “She’s a very brave and patient little girl!”
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