Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International

post-polio.org  polioplace.org

 
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I. Considerations for Hospitalized Polio Survivors

Unexpected stays in the hospital, even though necessary, are frustrating, because hospitals are overwhelming places. The job of the medical staff is to treat patients and to explain procedures. Ask questions until you fully understand what is involved in the procedures and treatments.

Expect to interact with health professionals who have never treated a polio survivor, but don't be alarmed. The immediate issues are practical in nature and not dependent on an extensive knowledge of the disease of polio. Professionals generally understand neuromuscular diseases, such as muscular dystrophy, multiple sclerosis, ALS and polio. However, some mistakenly think that polio paralysis means the lack of feeling. Polio people can "feel" when their weakened or atrophied muscles are touched, and in fact, these body parts can be more sensitive.

Here are a few things to consider if your loved one is in the hospital.

  • Get to know the key personnel on the hospital staff. Remind them that a person who has lived with a disability for a long time is the most qualified to manage his/her functioning and general day-to-day care.
  • Inform staff of the person's limitations due to prior polio along with instructions as to how he/she carries out necessary tasks, e.g., can walk only with a brace, cannot reach out to receive medications or water, cannot lie on right side, uses nighttime ventilation, etc. Relaying this information is vital if your parent or friend can't speak for him or herself, and it signals to the staff that you want to be actively included in their care.
  • After compiling this information in written form, ask the staff to be flexible and creative in adapting their medical procedures so your family member receives the best care. Request that the staff place the information in the chart for all personnel to see.

Polio survivors have weakness from prior polio and from years of overuse of muscles and joints. This weakness increases as they age. Less common is weakness from disuse or inactivity, but it can occur during hospital stays. Sometimes, it is more expedient for staff to let polio people stay in bed because of the additional assistance they need. Activity is beneficial and family members can offer to assist their loved ones, so the survivors have an opportunity to be active to the best of their ability.

Polio survivors who use home mechanical ventilation at night or 24 hours a day, either with a tracheostomy (surgically-made hole in the throat) or with a nasal or face mask, may need the most attention when hospitalized. Many emergency care professionals are not familiar with portable breathing devices and the newer nasal and face masks (noninvasive ventilation) used in the home. The tendency is to replace the equipment with the more familiar hospital equipment and methods, such as intubation (a breathing tube placed into the windpipe through the mouth) and a tracheostomy.

While these hospital-based devices and methods may be necessary at times, polio survivors may avoid them by using their own equipment in the hospital. It may be necessary to adjust the settings of the breathing device, the specific type of nasal and/or face mask in use, and the amount of time on the machine, etc., during a hospital stay. The breathing device may need to be "checked out" by the hospital's engineering department before it can be used in the hospital.

In an emergency, a tracheostomy may be necessary to save one's life, but physicians can attempt to change back to the original equipment used for breathing once the crisis is over.

Be Prepared

The best scenario is to be prepared for hospitalization. Discuss unique health concerns with the primary care physician, pulmonologist or other specialists to obtain their agreement to act as an intermediary with other hospital staff during emergencies. The goal of the emergency room physician is to save lives, so expect them to address the most critical problems first.

Discuss with polio survivors who they want to make decisions in case they cannot. The selected individual has durable power of attorney for health care (medical power of attorney) and can legally make medical decisions for your loved one.

Ideally, your parent or friend will have completed the legal forms stating their wishes in case they can't speak for themselves. Families who have discussed the nitty-gritty of the various possible choices at life's end in advance have a distinct advantage during a crisis. Many polio survivors have spent a lot of time and energy "fighting against death" and it may be difficult to engage them in an honest, meaningful discussion about this topic.

It may be beneficial to remind them of the advances in technology and that you would like clear instructions to respect their wishes. Another compelling reason for them to plan is the number of physicians and specialists you as their child or friend may encounter in the hospital, all who will have differing ideas about prognosis and treatment.

Pre- and Post-Surgery

Prior to surgery, evaluate the home, specifically the bathroom and the bedroom, to accommodate for post-surgery limitation. It can be beneficial to meet the post-surgery physical therapist before surgery, so they can assess the polio survivor's muscle strength to establish a baseline that can be used for planning an exercise program for both in the hospital and when back home.

If your loved one's post-polio issues are complicated, consider having surgery done in a large teaching hospital, because staff members conduct pre-surgery "clinics" to exchange information about each patient. In other situations, schedule a face-to-face discussion with the anesthesiologist several days prior to any planned surgery and tell them your loved one had polio and your concerns, including a request for closer post-op monitoring than typical. The anesthesiologist assigned to a patient can change, so discuss the relevant information and request that they pass it along to the team.

To minimize complications when emergencies occur outside of a local area, encourage polio survivors to carry an information sheet containing brief instructions about their medical condition and contact phone numbers with them at all times. You and other family members should have a copy, also.

Intensive Care

If your loved one is in intensive care, attempt to get their primary care physician or the health professional who best knows his or her post-polio health history involved with the ICU professionals to help explain or reinforce your unique concerns. Remember having had polio can compound the effects of other illnesses or surgery. Having major surgery is difficult for healthy people and it can be more difficult for those who had polio.

Recovery time may be longer. Don't get discouraged. Watch for signs of improvement. Encourage appropriate exercise to counter disuse weakness acquired while your family member is inactive, so he/she can return to their "normal" day-to-day activities. Many polio survivors reject any exercise out of fear of overuse weakness, but explaining the difference between overuse weakness and disuse weakness can alleviate that fear. Family members can assist with personalized exercise once home therapy ends.

  • Reminder: Ask questions. Be an advocate. Try to think one step ahead so you are prepared.
  • If you have concerns about treatment specifically related to breathing issues, ask the pulmonologist to speak with a pulmonologist who is experienced in treating polio survivors.
    (See Resource Directory for Ventilator-Assisted Living.)

More ...

Summary of Anesthesia Issues for the Post-Polio Patient (post-polio.org, 2009 )

Anesthesia Update: Separating Fact from Fear (PHI's 10th International Conference, 2009)

To Have Surgery or Not to Have Surgery – That Is the Question! (Post-Polio Health, 2008)

Surgery: Another Point of View (Post-Polio Health, 2009)

Introduction to Take Charge, Not Chances (Ventilator-Assisted Living, 2007)

Home Ventilator User's Emergency Preparation Checklist

Caregiver's Emergency Preparation Checklist

Patient's Vital Information for Medical Staff (pdf) (Word option)

Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues

Care of a Tracheostomy (Ventilator-Assisted Living, 2005)


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