During a healthcare crisis, while coping with a chronic medical condition or being an older adult living alone, it may be difficult to manage without the support of one (or more) advocates. You may need help to find your voice, or you may need someone else to be your voice.

The definition of advocacy is to give support to another person to help express their views and wishes and to stand up for their rights. It can become complicated to navigate the healthcare system or to find the right community, legal or financial resources to meet your needs.

An informal advocate is typically a family member, close friend or neighbor. For someone who has completed their advanced care directives, their health care proxy would be their primary advocate within the healthcare system. When things get more involved with overlapping needs, however, it often helps to build a team of advocates.

Who is the most informed about healthcare insurance, community resources, food delivery services, finances, home maintenance or transportation options? It is helpful to know that there are also formal and professional advocates who can be found through non-profit charitable organizations, national directories, and associations. 

During a hospitalization, it is extremely helpful to have someone who knows you well and what your level of function was before the admission and who can speak for you if you are too ill to speak for yourself. That is why choosing a healthcare proxy is important.  They can offer important information, insight, and share your preferences for your medical care.  Knowing you and being present to notice any changes could help to identify complications earlier.

Joseph’s Story

Joseph had been living in a nursing home for over a year. His only relative was his wife, who had dementia and was on their memory care unit. He rose early every morning, dressed, and headed to the dining room to visit with his wife. He called the palliative care nurse practitioner (NP) who visited him monthly “my nurse friend,” and he always had stories to share.

He was hospitalized for surgery and returned to the nursing home but on a different floor — the rehabilitation unit, where the NP visited him late one morning. Surprisingly, he was still in bed, quiet, and did not recognize her.  This was not Joseph’s normal behavior.  The other nurses did not know him and thought he probably had mild dementia.

In fact, he had developed a delirium (sudden confusion) following his surgery, which may have gone unnoticed, but the NP knew his baseline prior to surgery. The earlier that a delirium is evaluated and treated, the better the outcome.

Joseph’s story underlines the importance of having someone familiar with you, whether it is a healthcare proxy, neighbor, friend or healthcare provider should you become ill.

There are many who can help

There may be other needs identified while you are in the hospital. You may need the discharge planner to assist in finding home care services or a nursing home placement. Some hospitals and clinics have patient/nurse Navigators who can help with appointments, treatment schedules, patient education, and insurance claims. A social worker can be an advocate and help to bridge the gaps between medical, financial, and daily needs. They provide emotional and practical support and can be found through the hospital or if you are in the community through a healthcare provider, the United Way (211), Senior Centers, and Zencare (zencare.co/us/rhode-island/social-workers), among others.

In addition, the national Patient Advocate Foundation (patientadvocate.org) is a non-profit case management service offering patient advocates to navigate for services and to problem solve, including assistance with paying for treatments. Their website has a wealth of information.

There is also the membership directories for the National Association of Healthcare Advocacy (nahac.com) and The Alliance of Professional Health Advocates (aphadvocates.org), where fees may apply.

Another option for advocacy regarding insurance coverage is the non-profit Healthwell Foundation (healthwellfoundation.org). “When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses for essential treatments and medications.” Through grants, disease funds and donors, they can be an important resource.

The State of Rhode Island also offers a program called MyOptionsRI (myoptions.ri.gov/adults-60) that connects adults over 60 and people living with disabilities to “Option Advisors,” with access to a long list of local services and resources based on the need.   

If the issue is a legal matter there is the National Academy of Elder Law Attorneys (naela.org) that can direct you to attorneys who specialize in serving older adults and people with disabilities through education, advocacy, and community. An attorney can also be your healthcare proxy if there is no one else available. Estate planning, government benefits, elder abuse, and guardianship are just some of the issues they cover.

Medicare can provide services

As of 2024, Medicare now covers patient advocacy services. At Solace Patient Advocates (solace.health/state/rhode-island), advocates, who are covered by Medicare and many Medicare Advantage programs, can be contacted. They can verify if you are eligible for their services.  This illustrates that Medicare recognizes the importance of patient advocacy in our current healthcare environment.

If you are looking for information to help you manage your care and to advocate for your needs, it may be difficult to know where to start. The more specific you can be with your questions, the easier it should be.

Rhode Island Elder Info (RIElderInfo.com) is a comprehensive resource that has been designed for seniors, caregivers, and professionals in Rhode Island that may help to direct you. It offers statewide, as well as local town and city information, for seniors online or by calling: 401-585-0509.  Clicking on Bristol and then Case Management offered resources for patient advocacy.

In choosing who you think could help you, trust your instincts. The more informed you become, the better you will understand your options. You do not need to go it alone and get overwhelmed. Clearly, there are informal and formal, free and fee-based, advocates to assist you along the way.  Seek advice, build your team, and stay in communication. The resources and links mentioned in this article are just a hint at what is available.

Bonnie Evans, RN, MS, GNP-BC, GC-C, lives in Bristol and is a geriatric nurse practitioner, End of Life Doula, and certified grief counselor. She can be reached at bonnie@bonnieevansdoula.com.