Photo by Tianlei Sun on Unsplash.
For many years I didn’t see doctors. Then, well past Medicare age, my body began to fall apart. I exercise, eat reasonably, sleep, meditate, and don’t smoke—yet none of that protected me from a series of health problems that arrived within a 3-year period. Then came an eye condition that is mostly hereditary and tends to strike at an older age. That was my shock.
A New York Times article about Sandy Bem, a psychologist diagnosed with early-onset dementia, stayed with me. Dr. Bem ultimately found a way to a painless final exit — and at one point she admitted to feeling bitterly envious of a relative with Stage 4 cancer. With cancer, at least, she said, more options exist for medically assisted dying. With dementia, “you’re just condemned to be miserable.” I understood that feeling immediately.
I feel the same way about serious eye disease. I came across an article criticizing a woman who sought aid in dying because of macular degeneration and other conditions. Macular degeneration is not a walk in the park; untreated, it can lead to blindness. Yet the emotional, practical, and medical supports available to people with incurable eye disease are not remotely on par with what many cancer patients receive.
Cancer clinics routinely offer integrated support: social workers, cancer nurses, referrals to meditation and massage, and connections to both traditional and complementary therapies. Clinics often have staff whose explicit job is to help patients navigate the shock and logistics of a life-changing diagnosis. The message is: we know this alters your life, and we’ll help you manage it.
Compare that to most eye centers. I have yet to find one that treats the emotional fallout of an incurable eye diagnosis as essential. In an online eye-disease group, a nurse wrote that she was shocked at the lack of compassion for eye patients compared with other illnesses. My own clinic visit felt transactional from start to finish — a receptionist who didn’t greet me, a doctor who didn’t review my history, a clinician who clearly hadn’t been trained in breaking bad news. The whole experience made me feel like a number.
Some of this stems from stigma: eye diseases are often written off as “old-person” problems. But many people get these conditions in their 20s or 50s while still working. Employers in the U.S. are, in theory, required by the Americans with Disabilities Act to provide reasonable accommodations — but that’s easier on paper than in practice, and some jobs simply aren’t adaptable.
The patient experience is also harmed by dated infrastructure. Public reviews of local eye centers in Philadelphia — for example, Wills Eye Emergency and Penn’s Scheie Clinic — are full of long wait times, frustrated patients, and low ratings. Many clinics seem to have invested little or nothing in improving the experience.
Portals are clunky or broken: one facility delivers reports in XML (which is not available on most contemporary computers), while others ignore portal messages entirely. Pre-visit tasks that could be completed online aren’t functional, forcing patients into paper forms and long phone waits.
I work on the internet; in 2025 dealing with systems that feel stuck in the 1990s causes excruciating pain. It sends the message: “Who cares?” There are inexpensive fixes: offer PDF visit summaries, make secure messaging reliable, adopt modern portals that actually work, and train staff in compassionate communication. These aren’t radical changes — they’re basic patient respect.
We usually think of aging in terms of heart disease, cancer, or kidney failure. But many non-fatal conditions—eye disease, arthritis, chronic pain—can make people miserable for years. They deserve the same level of integrated care, emotional support, and coordinated services that many cancer patients receive.
Finally: assisted dying. For older people facing prolonged, degrading suffering, this should be part of the conversation. If the option existed more widely and ethically, I suspect health systems would be forced to pay closer attention to quality of life. The mere existence of that choice (“I’d rather be dead”) could change how patients are treated — and how compassion is prioritized.
