Janina with her husband, Gary, and granddaughters

Living in sunny Naples, Florida, Janina Birtolo had a rewarding life and career as a writer, journalist, and actor. But in her 60s, she was diagnosed with advanced emphysema—a progressive lung condition—and developed symptoms so severe that she became depressed. 

Janina’s health deteriorated to the point where she rarely left her home. Managing her symptoms and care was all-consuming. “In constant discomfort and anxiety, I was dejected over how small my life had become,” she remembers. 

Unfortunately, her story is far from unique.

A recent study found that more than 80% of adults age 50 and older in the United States find managing their health and healthcare challenging—negatively affecting their quality of life and their engagement in their care.

Adults like Janina, who live with chronic conditions, depression, or mobility limitations, report even greater difficulty. The study also found that individuals with hearing or vision impairments, or those with private insurance rather than Medicaid, were more likely to struggle with their care.

Two key factors driving these difficulties include administrative hurdles and financial strain. For many, navigating the healthcare and insurance systems can be confusing, time-consuming, and costly.

The so-called “Big Beautiful Bill” recently passed by Congress and signed into law by President Trump is poised to further exacerbate these challenges. Medicaid cuts may lead an estimated 1.6 million people to delay seeking the care they need. Additionally, many rural hospitals as well as a quarter of nursing homes may be forced to close their doors.

While daunting, Compassion & Choices remains steadfast in creating a more patient-directed healthcare system, especially for those approaching the end of life.

Through clinician education, policy advocacy, defending patients’ rights in court, and more, we’re fighting to ensure that the care we receive meets our needs and improves our lives—up until the very end.

While systemic change is vital, we also have power as individuals to pro-actively manage our healthcare and increase our capacity to respond to challenges.

Janina’s story turned a corner when she voiced her struggles to her primary care doctor, who thankfully listened. Janina was referred to palliative care, which “turned out to be a godsend.” Thanks to palliative care, covered by Medicare, as well as an endobronchial valve placement procedure, Janina’s quality of life dramatically improved.

Like Janina, we can all take steps to improve our care—including by having honest conversations with our healthcare providers, documenting our wishes, and advocating for ourselves and our loved ones.

To support you on this journey, Compassion & Choices offers free, easy-to-use guides and resources. Explore our Tools to Finish Strong today and start navigating your care with confidence.

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