When you are helping with the elder care management of a loved one, you serve as their advocate. This role is a significant and important one, whether you are providing support or serving as the decision maker for a family member who is no longer able to do so.
What are some of the typical challenges families face in coordinating medical care?
- Understanding privacy laws and legal provisions for decision making and assisting a loved one. This is particularly challenging because providers may have different understandings of laws and families often get conflicting information. Additionally, providers and facilities may have specific policies and forms with which you need to comply. (Grab a copy of our “Getting Answers about a Loved One’s Care” for an overview and tips.)
- Navigating insurance, benefits and procedures. Consumers have often complained about a lack of transparency in healthcare and insurance policies, making it difficult for the average person to get clear information. This is improving as information becomes available online and there is a push to provide consumers better information, but it can still be a lot to figure out (especially when dealing with the emotions of an ill loved one and balancing many tasks).
- The practical and emotional difficulties of trying to help someone with very personal (and vital) decisions (or even make them as a substitute decision maker). Individuals often have very different feelings about medical care and end of life wishes, which may even vary greatly over time. This is a particular challenge for family members who have not discussed such issues, where conflicts exist and where major decisions have to be made in high-pressure circumstances.
Thing you can do to help someone manage your medical care (or things you can begin to explore with older loved ones you will help):
- Make sure you’ve made preparations for decision-making. Key documents that need to be prepared include: a durable power of attorney, medical power of attorney/healthcare surrogate, and a living will. A qualified estate planning or elder law attorney can help you understand what documents are needed and prepare them according to your personal situation. Also, find out what paperwork your medical providers need (most have a privacy statement on which you can indicate persons to whom they can release information).
- Talk about it! Try to start an open dialog about beliefs, concerns, quality of life and what you would want in regards to your care. You can’t cover every possible scenario, but discussing these issues can give your loved ones a better idea of your personal beliefs and help them if they need to make decisions on your behalf.
- Put together a medical file. This makes things easier on you or caregivers who help (think about having information handy whenever you have to fill out new patient paperwork, and having easy access to provide good background during an emergency). Put together a notebook or use an online system with your: diagnoses, medical history (diagnoses, surgeries, family history, etc.), medications, allergies, and medical providers’ contact information.
- Contact a professional patient advocate. Some of the situations in which an advocate might help include: working through family conflicts or dialogging about decisions, providing an assessment and organizing your medical history, referring to needed professional services or helping locate specialists/programs, navigating Medicare and insurance, and assistance in the advocacy process/overseeing care.
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