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Sunday, October 16, 2016

Writing Your Medical Autobiography





Many of us have thought about writing our autobiography to share with family and friends our life experiences and insights as we travel the road we call Life. Although this might seem foreign to many, sitting down to write about yourself is a good idea. Recently, I had the opportunity to join a colleague on a radio show to talk about the value a patient advocate can bring patients and their caregivers when a medical event thrust them into the complex would of healthcare. To listen to the show click here.

It was an interesting experience, and I learned a lot as part of the process. During one of our breaks, I met Francine Yaffa, a professional organizer.  Francine was listening to our discussion on the show and offered a suggestion that we share information on the importance of writing a personal medical autobiography. I had not heard this term before and asked her what a medical autobiography was. She explained a medical autobiography is another name for a Personal Health History that a person develops, so they have all of their current and past medical history in one document.

I thought this was an excellent idea and wanted to share information in this week’s post so readers could become familiar with the concept and start their medical autobiography.

Having a personal medical autobiography allows each person to reflect on their life, their health history and allows them to see how their health history changes over time. Documenting the information can provide insights into how you are doing, the progress you are making and how the treatments you have taken in the past or are currently receiving are working. 

Reflecting on this information allows you to ensure your health and healthcare are meeting your goals. In addition, having this information in print allows you to share your information with your providers and others charged with speaking for you if and when you cannot speak for yourself. Most importantly, your medical autobiography allows others to get to know YOU.

I asked Francine to share with me some of the points that she recommends to be part of a Medical Autobiography. Here is what she recommended. I also added a few ideas that you might want to consider.

Your name, address, home and cellular phone number, email address

Emergency contacts names, addresses, phone numbers, email addresses (note if any of these contacts are the person’s health care surrogate and power of attorney)

Medical Insurance information: note your insurance information with your ID numbers and phone numbers. If you have long term care insurance include that information also.

Prescription Insurance: company name, phone number, Policy #

Prescription Medications. List all of the medication you take. Write the names exactly as they are on your medications bottles. Note the dosage, times you take the medications and the date you started taking the medication as well as the reason for taking it

Over-the-Counter Medications and Supplements also should be listed. List all of the information noted above for your over the counter medications and supplements.

Note all of your health, dental and vision conditions including date of onset

Note any and all surgeries you have had. Including the date/year of the surgery, the surgeon’s name, the reason for surgery

List all of your physicians: note their names, specialty, address, telephone, fax, email, patient portal link along with your username and password.

If you are a snowbird, list the doctors whom you see in your hometown as well as the providers whom you visit when you are at your vacation home. The document allows your physicians to communicate with each other as needed.

List any allergies to drugs, food and environmental allergies. 

Note any food sensitivities, diet restrictions or preferences (for example gluten/lactose intolerance, vegan, kosher, etc.TIP:  If you have allergies/food sensitivities you might want to move this section up on the list under emergency contact information so that it is right at the top of the page as it will be more noticeable to the healthcare provider. You can also use a yellow highlighter to highlight the headings “Allergies” and “Food Sensitivities” (or type these headings with a RED font and print the document with a color printer so important points stand out

Hospital where you would be admitted. Include the address and phone number. 

Rehabilitation centers/facilities you are currently using or have used in the past. Include the address and phone number

Urgent Care Centers you have used. Include the address and phone number

Laboratories, where you get your blood work is done. Include the name, address and phone number

Facilities, where you get your diagnostic testing done. Include the name, address and phone number

Durable Medical Equipment being used, such as a walker, cane, wheelchair and the company where you have obtained the equipment. Include the name, address and phone number

Miscellaneous information: For example, copy of the card the doctor gives you to show the location of implantable devices as well as the serial numbers that identify the devices. These cards have important information that physicians would want to have in case there is a problem with the device or implant. Examples of implantable devices are stents, pacemakers, joint replacements, etc.
Copies of your Healthcare Surrogate document, your Living Will, your signed HIPAA forms, advance directives.

If you have contacted with a professional healthcare advocate to assist you in navigating the healthcare system, include their name, phone number and email address. 

Make a list of all of your financial information with your account numbers and directions on who do contact when needed.

Names, addresses, phone number and email of your Attorney, your Financial Planner, your Accountant, your Bank and other financial institutions where you have accounts. These could include retirement accounts.

Your place of Worship. Many people want their names placed on a prayer list or have someone from the place of worship to visit them if you are housebound

If you have made pre-arrangements with a Funeral Director, include the name, address and phone number.

If you have a description of how you want your funeral planned out, include that document so you can make sure your wishes can be implemented. Items to include could be your favorite scripture passages, music you like and people you want to make sure attend and what you want them to do.
This document should be kept in a safe place as it contains sensitive information. Having developed the document, allows you to print out your medical autobiography and provide it to your doctors so they can have the information for their files.

A digital copy should be kept on a flash drive and be kept your wallet as well as saved on your person’s computer. Having the document on your computer allows you to update the document as your health history changes.

I hope this post will inspire you to develop your Medical Autobiography. Doing so allows you to be an active participant in your health and healthcare journey.

Resources:

File for Life: designed to make the difference between life and death by providing vital information to first responders. The File of Life format is modeled to be easy for patients to use and immediately recognized by local EMTs, police and fire departments nationwide. File of Life strives to maintain an open dialogue with communities across America to provide the most up-to-date, effective products and information possible. To learn more click here

A Letter of Instructions to My Family:  In addition to your current Will, a Power of Attorney and a Living Will, individuals are encouraged to plan ahead and write messages to their family and executor detailing their specific desires regarding funeral and burial. Written instructions to your family and executor containing information and guidance will minimize uncertainty, confusion, and possible oversights following your death.  The information you furnish should ease the settlement of your estate and provide for an orderly winding-up of your affairs.  You need to share what you know with those who (often suddenly and without warning) must step into your shoes and carry out your final needs. For a sample letter of Instructions click here.

Five Wishes: Five Wishes is America’s most popular living will because it is written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you want.  To learn more about Five Wishes, click here

Professional Organizer: As I mentioned, the idea for this post come from a friend and colleague, Francine Yaffa of Francine Yaffa Organizing. As a professional organizer, Francine provides solutions to simplify lives by reducing clutter and putting streamlined systems in place. This optimizes space, time, and tasks and helps to increase productivity, accessibility, and functionality. Francine can help organize your personal health information onto one simple document as described in this post. You can reach Francine at fyaffa@yaffaorganizing.com / 954.970.0415

I hope this information inspires you to create your own Medical Autobiography to share with those who you trust to have the information. If you have done this already, please take a minute to share how it has helped you to be an empowered patient. 

Thank you for reading Nurse Advocate. Have a good week!







Saturday, October 1, 2016

The Joys of Traveling as a Disabled Person




I love to travel and considered myself a ‘road worrier’ during most of my career. I found traveling fun despite some of the challenges that we all encounter as part of the process.  Today, airports are getting bigger, so the distance between gates is longer. Also, flight schedules are tighter so getting from one gate to another can be a challenge especially if your departing flight is late taking off.

As a newly disabled person, travel has changed for me.  Today I need to prepare more and be cognizant of how I will get to my gate when I arrive at the airport or get to baggage claim once I reach my destination. If my flight is not direct, I need to make sure I request a wheelchair to take me to my next gate as the distance between gates in most airports can be quite long.  

I was recently introduced to a reporter from the Wall Street Journal by a colleague. The reporter was doing a story on the fact that airports were getting bigger causing walks to gates to be up to a mile long which is causing challenges for all travelers. As part of this story, he wanted to include how airport expansions have impacted the elderly and the disabled. I was glad to talk to him as I had taken a few trips recently that opened my eyes to the challenges people have when traveling especially the elderly and the disabled. Here is the link to the article in the Wall Street Journal. 

As the article did not fully capture the points I felt were important, I thought I would share them in this week’s post as I realize travel is important to many people whether able-bodied or disabled.

One of the things I have learned as a newly disabled person, is that I can still travel, but I need to take the time to prepare and be alert for resources that allow me to navigate in a safe manner.  I felt this was an important post as many readers of Nurse Advocate are challenged by disabilities in one form or another. Other readers are healthcare professionals who can help their patients know some of the challenges they are going to face when they travel and how they can help them avoid problems by being prepared. Here are some of the tips that I have learned traveling as a newly disabled person.

The most important thing that I can recommend is to plan ahead and make a list of things you will need so you are safe and can continue your treatment during your journey.  Second is to make sure you give yourself plenty of time, so you do not feel rushed, can handle setbacks that occur. This will allow you to be prepared, decrease your anxiety and have good experience.

Traveling by air is an efficient way to get from one place to another. Most people prefer air travel if their destination is more than four hours from their starting point. If less than four hours, consider driving your car as it might be more effective and comfortable for you. Having your own vehicle allows you to stop when you want and be on your own schedule. 

Air travel for the elderly and the disabled can be a challenge but by preparing you can be assured you get the assistance you need. When you make your reservation online, you will see that most sites have an area that you can check if you need special assistance. If you do not see this on the web page, call the airlines. Recently, I flew American airlines and did not see a place on the website to check that I needed special assistance.  When I called the reservation line, the person told me, that they took that section off the website as they wanted people to call them with their special request.  I was able to tell the person I needed a wheelchair to get to my gate when I landed between stops.

If you are not able to handle your luggage, you can check it in when you arrive at the airport. This frees you up and makes the possibility of forgetting or losing something less. If you are carrying your bags onto the plane, make sure you are aware of the ‘rules’ and comply. On most planes, you can take one bag and one small carry-on onto the plane. If you are over the limit, you will have to check the extra bags so make sure you know the rules and comply. If you have medication, keep them in your carry-on in case your checked bags get separated or delayed.

As I have to wear leg braces to ambulate safely, I usually ask the TSA people if I need to remove the braces to go through security. Depending on the airlines and the security, they have allowed me to go through security without having to take them off. As the alarm usually is triggered, I usually have to get wanded, but because I arrived early enough, this extra procedure was not a problem. 

As a disabled person, most airlines allow you to board the plane early so you can get your luggage stored before general boarding. This is a help as many people need a little more time and by boarding early, you do not hold up the line as you get settled.

I have been impressed by the systems that the various airports have in place for people who need wheelchair assistance. Most times, my wheelchair is waiting for me when I deplane. The people pushing the wheelchairs are courteous and help you with your bags and make sure you get into the wheelchair safely.  On the way to the gate, I have been asked if I needed to use the ladies room before getting to my gate. I thought this was so thoughtful as I try not to use the restroom on the plane if possible. If the distance between gates is long, you might be greeted on arrival with a wheelchair but taken to a central point where you transfer to an electric cart. Again, most of the major airports have their systems down to a science and are efficient in getting people from one gate to another. It is customary to tip the wheelchair attendant for this service. If you are satisfied with the service, please be generous as these people work really hard. 

For those with ambulatory issues once seated, they are usually ok, but if a person has other needs such as oxygen, the stewardesses are very helpful in getting things set up. Again, making arrangement ahead of time helps prepare the staff. Fellow passengers are usually helpful to those with special needs so don’t be afraid to ask for help if you need it.

If you are traveling by another means, like a train or bus, there is similar assistance available when requested.

When we were on a cruise a few months ago, the ship had resources for those who needed assistance with a variety of needs. Don’t be afraid to ask for help as it is usually can be provided or recommendations on how to accommodate the person can be discussed.  I shared our cruise experience and how it compared to the customer service in the hospital in a post in Nurse Advocate titled; Going Beyond Expectations to Create a Culture of Caring. If you do not recall reading the post, take a look as it will give you some good ideas on customer services that can help many in healthcare be more proficient.  

If you are going to be staying in a hotel on your trip, you may want to consider asking for a handicap room if needed when you make your reservation. I have been disappointed in some hotels as their handicap rooms are not always equipped to help a person. So it is important to be careful when you are in a hotel as it is different from your home. Things you take for granted might not be the same in a hotel. An example is the towel rack.  Do not depend on the towel rack being sturdy enough to hold your weight, so if you are off balance and need something to hold on to look for something that is sturdy. Another area to be mindful is getting in and out of the tub/shower. Most hotels have grab bars which help but be careful, so you do not slip and fall.

Make sure you pack your medication and keep it in your carry on bag as well as any equipment you might need.  On a recent trip, I forgot my medication. I called the local Walgreen’s (the same pharmacy I use at home). Unfortunately, the cost to get a few pills was cost prohibitive as I was between refills. Thankfully my husband was home and could overnight a few pills to where I was staying o I could stay on schedule. 

If you need other equipment while you are traveling, talk to your doctor. If you have a case manager or a patient advocate whom you are working with, ask them as they will be able to help you make arrangements so things can be delivered to you once you arrive.

As with everything I do now, pre-planning is important. By taking the time to prepare, I realize I can still travel and enjoy life.

Thanks for reading this week’s post. If you have had an experience while you were traveling you would like to share, please post in the comment section or email me at allewellyn5@bellsouth.net


Have a good week!