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5 Tips to Be Prepared and Banish Fear of Hospitals While Living with Chronic Illness

For anyone living with a chronic illness, life is sometimes punctuated by unexpected complications requiring a trip to the emergency room or even a few days in the hospital.

Yet just because you have been there before doesn’t always mean you are prepared logistically or emotionally for another hospitalization.

With some planning and support, laying the groundwork for your next hospital visit is possible. Here are five ways you can be more prepared for a hospitalization.  

1—Where to go: Choose a hospital where you have received care in the past

If you have a chronic or progressive illness, chances are you see more than one doctor. Instead, you likely have a team of providers who care for you. This team usually includes your primary care physician, a specialist or two, and perhaps a therapist or specialized nurse. These providers are well-equipped to care for you because, over time, they’ve come to know the story of your illness and your unique needs.  

Consider the hospital another member of your care team. The more often a hospital is involved in your care, the more information about you will be available at that hospital.

Each time you are admitted to a hospital, your medical record at that institution becomes more robust, allowing providers to look back at the notes, labs, and test results that tell your story. With more information, the providers at the hospital will better understand your situation and how to care for you.

There will be times when you are traveling, or an emergency makes it impossible to choose which hospital you go to. In these cases, ask how the providers will obtain your records from other institutions.

2—What to know: Be able to list your current medications

When thinking about a hospitalization, the adage “knowledge is power” can be updated to “knowledge is safety.” The more information you can give the doctors and other providers, the more you are helping to ensure your safety during a hospital stay.

Specifically, you should focus on knowing and being able to tell the doctors in the hospital what medications you are currently taking and how you are taking them. 

When you are admitted to the hospital, the doctors will decide what new medicines you need, which of your regular medications you can continue taking, and which ones may not be necessary or are no longer safe; this is called the medication reconciliation process. Accurately completing the medication reconciliation is paramount to ensure your doctors create a safe and effective treatment plan. 

The names and timing of medications can be challenging to remember, so take advantage of any lists your pharmacy gives you or applications your primary care physician may use that allow you to keep an updated list on your computer or smartphone. Keep an updated copy of medications accessible at home (or packed if traveling).

*Note: Oxygen is a medication, so be sure to mention how much and how often you are using oxygen at home.

3—What to bring: Complete a portable order for life-sustaining treatment (POLST) and advance directive

One of the best things you can do to prepare for hospitalization is to have written out your wishes around life-sustaining measures and other medical decision-making. And the best time to make those decisions is when you don’t have to make those choices under pressure. So, take some time to sit, think about and write out your wishes by completing a POLST (portable order for life-sustaining treatment) and an advance directive

At your next primary care appointment, ask to complete and sign a POLST with your provider. A POLST form is a medical order that states which resuscitative measures you are agreeable to having performed if your heart stops beating or you can’t breathe and is a way for hospitals to know your wishes around such treatments. Each state has a designated POLST form. These forms are available in doctors’ offices, in hospitals, and online. After you have completed and signed it, be sure to keep your POLST in an easy-to-access place so it can be brought to the hospital when needed.

The other document you should have prepared is an advance directive. An advance directive is a legal document listing your wishes around resuscitation and life-sustaining treatments, any other type of medical intervention of concern, and whom you have chosen as your health care proxy. 

A health care proxy will make decisions for you if you cannot make decisions for yourself. The more information you can put in an advance directive, the better. The best gift you can give your health care proxy and loved ones is clear instructions so they can be confident that they are always honoring your wishes.  

4—Who should come: Identify a care partner

Who is the person you call when you are not feeling well or need to go to the doctor’s office? Who helps you make decisions about your care and how you manage changes to your medical regimen? The person you just named is your care partner. Your care partner is the person whom you depend on to help manage your care and who will continue to do so while you are in the hospital. 

Identifying a care partner and integrating that person into the happenings of your hospital stay is an easy way to lessen your load. You already know and trust your care partner, and, in turn, they are invested in your well-being and can help to advocate for you. 

Be sure your medical team knows who your care partner is, and set clear expectations for how regularly they should be updated. Consistent communication between you, your care partner, and the medical team is key to lessening potential points of frustration.

Working with your care partner will be vital at every point in your hospitalization. During admission, your care partner can communicate with your doctors and fill in the fine points of your story at a time when you may be too ill to remember everything clearly. Include your care partner in discussions about test results and updates to the medical plan. Finally, your care partner can help set you up for a successful discharge by assisting the case manager or social worker in coordinating a safe transition home. 

5—What to do: Keep in touch with your social supports

Being in the hospital can be an isolating experience as it takes you away from home and regular activities. When in the hospital, be assured that the people who love and care about you want to lift your spirits and be of assistance. Keep in touch with your loved ones and allow them to support you however they can. Have a phone charger with a long cord to keep your phone charged and accessible during hospital stays. This can help you stay in touch with friends/family and care partners as needed.

Also, find ways to stay engaged with the support system you have outside the hospital. Request a visit from your spiritual leader or use the chaplain services available in the hospital. Don’t feel like you have to go through a hospitalization alone. Keep the people and things you are looking forward to seeing again at the top of your mind so you stay motivated to participate in your care and work toward discharge.  

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