When illness, disability or the frailties of aging strike, even the most independent individuals may feel vulnerable when faced with navigating a complex health care and/or long-term care system for themselves or their loved ones. A recent cancer diagnosis for my father thrust my family into a whirlwind of uncertainty.

The emotional punch of a life-altering diagnosis or situation can make it hard to focus on the logistical details of what should happen next. Without advocacy by family, friends, or professionals, 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 that is used to describe actions taken on behalf of a cause or person(s) in order to achieve certain objectives. 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 advocacy efforts.

First and foremost, before trying to support another individual, ensure that the individual desires your assistance. Without agreement by the individual in need, your efforts will only foster frustration and distrust, which can add complications and possibly permanently damage a relationship. My parents had handled previous health changes by themselves, but my sisters and I immediately wanted to jump into the situation upon hearing the “C” word. Respecting my parents’ privacy while determining what types of assistance they wanted became an ongoing conversation throughout my father’s illness.

If an individual has multiple people who are willing to help, clear guidelines about responsibility for specific tasks and decision-making can reduce potential conflict between advocates.  The duplication of efforts can also be avoided. Timely communication of new developments will foster trust and respect among the advocates and promote teamwork. While a group text was our family’s primary means of communication, I recall one telephone conversation with my sisters which was especially helpful. It provided an opportunity to share our feelings as well as information and furnished insight into our perspectives about our father’s prognosis and his journey.

In a crisis, attempts to collaborate are likely to worsen previously strained relationships. If multiple advocates are having difficulty working together, tough decisions about who should or should not be involved may need to be made.

Discussions about life goals and preferences with the beneficiary of your advocacy efforts create a foundation for decisions if gray areas are encountered. Many situations in life are not black or white, and it is impossible to plan for every scenario that may occur. When conversations about actual and potential life events take place, an advocate will have a better understanding of what direction to go when a loved one hits a bump in the road.

Differences of opinion may occur between the advocate and the person they are assisting. Pursuit of the individual’s wishes should be followed in most circumstances, but there may be times when it is in the best interests of everyone for the advocate to make an opposing decision.

My father was a prime example. His cancer was late stage when it was discovered, but he wanted to fight it.  We did our best to support him through treatment, even when it became apparent that the treatment wasn’t working.  Eventually he decided that he had had enough, but he continued to resist hospice services https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care. Thankfully, the physician was willing to write the order at the request of my mother and me. My father didn’t say anything when we told him that a nurse would be coming to evaluate him, but shortly before the meeting he asked to cancel it. My mother responded that she needed the support even if he didn’t, and he chose to cooperate. Our family would have struggled to keep him at home and comfortable without these services.

Information is essential for effective advocacy. The following suggestions are steps which will help improve the accessibility and organization of information when advocating for loved ones in a health care or long-term care situation:

  • Maintain a list of the professionals (include contact information) who provide services for your loved one. Include their physicians, attorney, financial adviser, home caregivers, pharmacy, accountant, and other providers as needed.
  • Learn where important documents are located, such as insurance cards, military service records and birth/marriage/death certificates.
  • Obtain Power of Attorney documents BEFORE a crisis occurs https://keystoneelderlaw.com/power-of-attorney-faq/. Financial and medical service providers will only release information to authorized individuals, and without these documents your hands could be tied. For older adults or individuals with special needs, an elder law attorney can provide a comprehensive review of the relevant legal and financial concerns for your loved one.
  • Do your homework. Researching your loved one’s medical diagnoses and medications provides important background knowledge and improves understanding of the situation.
  • Keep a list of your loved one’s current medications in your wallet or car.
  • Write down your questions before speaking to health care providers, insurance companies, etc. and reference them during your discussions.
  • Take detailed notes of important conversations so you can refer back to the information. Include the date of the conversation and name/title of each individual with whom you spoke.
  • Develop a timeline of the significant events of your loved one’s journey such as hospitalizations, treatment start and end dates, diagnostic tests, and changes in symptoms.
  • 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.
  • Get to know the caregivers if your loved one is receiving care from professionals at home or in a care facility. They will appreciate your interest, be more willing to help your loved one with “extras” and may share information with you before you even ask questions.
  • Participate in 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.

Advocacy requires time and assertiveness. It may sometimes feel uncomfortable. The potential benefits for your loved one may be priceless.

Karen Kaslow, Care Coordinator

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