If, as a caregiver, you get your medical paperwork in order, you will be ahead of the game.
Step 1. Buy a hard cover notebook, small enough to fit in a purse and record the following information in it:*
- name and phone number of your parents’ primary care physician and/or geriatrician
- doctor’s phone number
- name and phone number of any specialists your parent sees or is referred to. (ex.cardiologist, oncologist, pulmonary expert, podiatrist, physical therapist)
- agency name and number for any visiting nurses or home health aides that help care for your parent
- schedule of home care visits.
Take this notebook to every doctor’s appointment. When you think of questions, write them in this notebook. When doctors share information or give orders, record them in this notebook. Keep track of questions and concerns as you think of them on your smartphone so you can access them when you are at the doctor. Ask your parents what their concerns are and add those to the list too. In addition to your own list of questions and concerns, here are some additional questions you may want to ask:
- What changes and symptoms should I report as I observe them?
- What should trigger a call to the doctor or to 911?
- What possible side effects should we expect from medication?
- Can we reevaluate his/her medication list? Can any prescriptions or doses be changed, reduced, removed? Every family caregiver should ask this question on an annual basis!
Step 2. Take pictures of your parent’s insurance cards – front and back – and keep them on your smart phone.
Step 3. Make a medication list. The list should include name, dose and time of every medication your parent takes – even better if you also list why they take it, plus, contact information for their pharmacy. Keep this list on your smart phone and in your notebook.
Consider a medication management system. Our favorite is from Hero Health.
Step 4. Review this paperwork If your parents don’t have these documents, ask them to consider them. If they do, locate them and make 4 sets of copies. Keep a copy at home, at work and in your glove compartment.
- Healthcare proxy aka Durable Medical Power of Attorney. Your parents should each designate one person to be their health care proxy. This person, often the primary caregiver, has the authority to make medical decisions for a patient in the event they are unable to. Some people have a proxy statement prepared by an attorney while others complete a form at their doctor’s office or at the hospital. Most proxies require at least two witnesses to sign them, but requirements vary state by state. Also, proxies can be changed, so if, for example, your parent names someone who can no longer fulfill the role, they can assign someone else. When you are a proxy, doctors will share information with you. If you are not the proxy, doctors are not allowed to discuss a patient’s medical issues with you due to the Health Insurance Portability and Accountability Act of 1996, commonly known as HIPAA. Some hospitals only recognize a proxy form completed at their facility and some only accept original copies. Therefore, if you are your parent’s proxy, always keep your original form as well as a few copies with you. Without this document you cannot get information or make medical decisions for your parent.
- Advanced directive aka living will. An advanced directive, sometimes referred to as a living will or physician orders for life-sustaining treatment (POLST), clearly spells out what, if any, medical intervention your parent wants to receive in certain medical situations, in the event they cannot communicate their preference. In some states, a patient can complete an advanced directive with their primary care physician. These directives cover whether or not a patient would want a feeding tube, for example, if they were unable to eat, or the use of life sustaining treatments such as ventilators, and heart-lung machines. Again, patients can update these directives if their wishes change. Advanced directives may be unpleasant to think about and discuss, but they can provide clarity and peace of mind for a caregiver in a difficult situation. If your parents are very ill, consider posting their advanced directive above their bed so nursing home staff, EMTs, or other responders will see it during an emergency.
- DNR. DNR stands for Do Not Resuscitate. This can be a doctor’s order or a legal document that tells medical staff not to perform cardiopulmonary resuscitation (CPR) or advanced cardiac life support in the event a patient stops breathing or their heart stops. A DNR can be part of an advanced directive or a person could opt to have just a DNR without an advanced directive. You may hear the term, “Allow Natural Death” in place of DNR. Some medical professionals are advocating the use of this phrase in place of DNR as it better defines the decision a patient and/or their proxy is making.
Step 5. Buy a magnetic file holder like this one and place it on your parent’s refrigerator. Get a large envelope and write “Emergency Responders” on the front. Place a copy of the Healthcare proxy form, DNR and/or advanced directive, medication list, copy of the insurance card, and your contact information in the envelope and put the envelope in the file folder on your parent’s refrigerator.
Step 6. Download and complete this medical history form. Keep it with your copies of the proxy, med list, etc.
*Also add this information electronically on your smart phone and/or a computer.