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Advocacy for Your Loved Ones

When illness, disability, or the frailties of aging strike, even the most independent individuals may feel vulnerable when faced with navigating a complex healthcare and/or long-term care system for themselves or their loved ones.  Without others to “go to bat” for them, some individuals may receive less than optimal care, be taken advantage of financially, develop a sense of hopelessness, or experience a myriad of other issues. 

Advocacy is a term which is used to describe the assistance provided to others in order to achieve certain objectives. It is often associated with non-profit organizations which are serving a specific population with defined needs.  However, many family members provide informal advocacy for their loved ones when health issues arise and the daily activities of life become more complicated.

Good intentions are not enough to provide effective advocacy for another individual, but advocacy skills don’t require an Ivy League education either.  When providing support and oversight of a loved one’s needs, especially an older adult, here are some tips to improve the productivity and success of your efforts.

The most important factor to clarify before trying to support another individual is to ensure the individual desires your help.  Without agreement by the individual in need, your efforts will only foster frustration and distrust. These feelings may damage both present and future attempts at advocacy.  Discussions about goals and preferences are also important. Discussions can create a foundation for decisions when gray areas are encountered.  Many situations in life are not black or white and it is impossible to plan for every scenario which may occur.  When conversations about actual and potential life events take place, an advocate will have a better understanding of what direction to take when a loved one hits a bump in the road.

Information is essential for effective advocacy.  The following suggestions are tasks which an advocate may undertake or steps to improve efficiency when advocating for loved ones in a health care or long-term care situation:

  • Keep a list of professionals your family works with and their contact information so you can contact them quickly if needed.  Include physicians, attorney, financial advisor, home caregivers, and accountant.
  • Know where important documents are located such as insurance cards, military service records, and birth/marriage/death certificates.
  • Do your homework – research your loved one’s medical diagnoses and medications.
  • Keep a list of current medications in your purse or wallet.
  • Make lists of items to cover when speaking to health care providers, insurance companies, etc.
  • Keep detailed notes of important conversations so you can refer back to the information.  Include the date and name of each individual you spoke with.
  • Attend physician appointments.  It is easy for patients to say they understand what a doctor has told them, and later be unclear about what was said regarding test results, medication instructions, and follow-up appointments.
  • Visit an elder law attorney.  Attorneys who focus specifically on elder law will probably provide a more comprehensive review of the legal and financial issues affecting your loved one.
  • Obtain Power of Attorney documents.  Financial and medical service providers will only release information to authorized individuals and without these documents, your hands could be tied during a crisis.
  • Get to know your caregivers if your loved one is receiving care from professionals at home or in a care facility. They will appreciate your interest, be willing to help your loved one with “extras”, most likely share information with you before you even ask questions.
  • Attend care plan meetings if your loved one is in a care facility.  These meetings offer families the opportunity to meet with several staff members at once in order to ask questions, iron out issues, and gain additional insight into a loved one’s functioning and daily routines.

Are you ready to be an advocate?  Some of the above actions may require assertiveness and sometimes feel uncomfortable, but the potential benefits for your loved one may be priceless.

Karen Kaslow, RN, BSN