The End of Sight at the End of Life

I presented this talk on Thursday 4/4/2013 at the Harvard University  "Think Tank" on Health and Aging. The two-day conference, held at the Charles Hotel in Cambridge,Massachusetts, brought together prominent scholars from the Harvard School of Public Health as well as global experts in economics, health care policy and longevity, for a fascinating and thought-provoking colloquium on the demographics and consequences of aging in all societies.

It remains difficult for physicians to confront and accept end-of-life issues in their patients, because our professional education and ethos inform us to do all we can as doctors to fight disease and prolong life. Can we afford to continue to do so with no limits and constraints? Even if we could, should we? Those are the moral and existential questions which confront us today.

For ophthalmologists, it is extremely difficult to accept end-of-sight issues in our patients. 

Over the decades, our specialty has proudly trumpeted its splendid life-enhancing victories over various causes of visual loss: certainly against cataracts, where we can safely and permanently remove them, replace them with a plastic intraocular lens, and restore sight, and we have been performing that miracle for years. We have been less successful in the management of glaucoma, macular degeneration and diabetic retinal disease, the other three leading causes of blindness, not only in developed societies, but increasingly in less developed ones as well, as the world's population is aging. These are diseases which we cannot yet cure, and over which we are only beginning to have some control. 

Based on cross-sectional studies done most recently in 2011, in the United States alone, almost three million people have advanced macular degeneration, my own mother being one of them, and over a million more have end-stage glaucoma or advanced diabetic retinal disease. There is a race, indeed a heated one, between research and development to bring new therapies to bear against these diseases, and the increase in their prevalence as we live longer lives.

The burden of those three diseases – glaucoma, macular degeneration and diabetic retinal disease - continues to loom over us, as they affect an elderly population which grows ever larger. The economic burden of these diseases thus continues to increase, as their progression causes more visual loss and medical visits, and more costly rehabilitation, low vision services and custodial care.  And what about the emotional burden? The emotional burden, for the patient and their family, is incalculable.

What is the price of vision, which is to say, what is the price of not going blind?

A 2012 global eye health survey performed in Spain, Russia, China and the US found that almost 70% of respondents in each of those countries would rather lose a limb, or ten years of life, than lose their sight.

Of course, eye specialists constantly preach preventative measures: annual eye exams for those over age 50, cessation of smoking, wearing UV-coated sunglasses when outside, weight loss, and eating a balanced diet, as the food journalist Michael Pollan reminds us, of real (that is, not processed) food, mostly plants, and not too much. To this I would also recommend the eating of cold water fish, in moderation, for their salutary omega-3 fatty acids, and to supplement with safe doses of Vitamins C and E, and the co-enzymes zinc, lutein and zeaxanthin. 

But we don’t always see the results of these strategies in clinical practice. At times, we face other more painful realities. 

So, how does an eye specialist deal with the patient and their family when that patient, who has end stage macular degeneration, glaucoma or diabetic eye disease, says to us, fearfully and plaintively, “Doctor, am I going to go blind?” ?

Our knee jerk reaction is, of course, that there must be something else to offer: to add another drop, to try one more injection, one more procedure, one more surgery. While we have been able to transplant corneas for over a century now, we cannot yet successfully transplant retinas or optic nerves, let alone whole eyes. So there are limits to our current technology, and when we do have to say to that patient, “I am sorry, there is nothing more to offer,” then what happens? Where does that conversation go? 

That patient is usually already infirm, perhaps with degenerative joint disease or rheumatoid arthritis, or suffering from the relentless consequences of bad choices over a lifetime, such as smoking and poor dietary habits, which have led to pulmonary disease and the metabolic syndrome of atherosclerotic cardiovascular disease, diabetes, and hypertension.

Yes, the patient is certainly alive, but what will the quality of that already difficult life become now, as they progressively lose vision? How will that patient now imagine their grandchildren, whose faces they have blissfully enjoyed seeing, often too infrequently? How will they drive their car, watch their favorite television shows, do their puzzles and sudokus, read their books and e-mails, or call their friends, all those comforting activities that stem the tide of the loneliness, and now the darkness too, that inexorably envelops them?

For a few patients, as I have poignantly witnessed over the decades, end-of-sight becomes a life no longer worth living. One such narrative documents at once the arc and trajectory of one man’s vision, and is also a constant reminder of why I became a physician and surgeon in the first place:

In 1995, I had the privilege of assuming the eye care of a prominent modern artist, a brilliant and inquisitive man, vibrant and trim and athletic even in his late 70s. His artistic style could be described as a wonderful amalgamation of the freedom  and gesture of the abstract expressionism of Pollack with the monumentality of the cubism of Cezanne and Picasso.

He had been diagnosed with cataracts, and was despondent because the cataracts had made it increasingly difficult for him to actualize his artistic vision and creations. I performed cataract surgery in both eyes, a few months apart,  and he and his art seemed to flourish afterward; indeed his palette regained the blues and purples and an overall vibrancy that the cataracts had stolen.  I remember giving a lecture on art and visual perception about a year after his cataract surgery, and he graciously came to that talk to explain to the audience the changes in his visual perception and his art before and after the eye surgery.

About five years later, for no explicable reason, he developed strokes to both of his optic nerves, a few months apart, with rapid and profound visual loss. The optic nerve is part of the central nervous system, an extension of the brain, and cannot regenerate if damaged. I sent him to the best neuro-ophthalmologists for subspecialty care.

A few months later, after extensive evaluations and treatments, he came back to me for follow-up, still with substantial loss of vision in both eyes. As I examined him, he leaned in and said to me, almost in a whisper, “Vincent, if I cannot paint, I cannot live.” About six months after that second eye had sustained profound visual loss from the stroke, he passed away. 

The memorial service was held in New York City, about a hundred miles from my office. As life would have it, I was scheduled for a busy  surgery session that day and I did not make it down for that very personal event.

About a month after the memorial, I received a note, which I still have on my desk. The note was from the artist’s spouse, herself a leading voice in American literature. lt read, “Dear Vincent,  He was so devoted to you. You were the architect of his eyes.” She told me that he had fallen, was hospitalized, and died of complications, yet I still wonder about the last days and thoughts of that wondrous mind and spirit.

No, ophthalmologists cannot accept end-of-sight.  Not easily at all. And that is how it always should be, because it will continue to catalyze us to find cures for all causes of visual loss, so that our patients, and at some point we are all patients, can enjoy the beauty of this world while we are still here.

 

@ Vincent de Luise MD  A Musical Vision