With no cure for glaucoma, the goal in caring for these patients is to have good, functional vision at the end of life. Providers spend so much time treating glaucoma patients with the belief that they will be living for many more years or decades that when we are presented with a patient near the end of life, we have difficulty changing gears. In fact, sometimes we may have trouble recognizing this change in patient goals — going from an aggressive treatment course aimed at preserving vision to one that focuses on maximizing the patient’s quality of life.
Not many of us think about this, but does our management need to change when we see that our patients are reaching the end of life? I came across this question recently when my wife, a board-certified hospice and palliative care physician, described the extreme lengths patients and their caregivers go through to use glaucoma eye drops despite expecting to live only a few more weeks to months. For those patients with good cognition, it was clear how deeply engrained the need for glaucoma drops was to prevent blindness. All those years of repetition from providers to “make sure to use your drops” had become second nature, and there is fear of ever stopping them. Some even believe that they will have pain if they stop the drops. For those who are cognitively impaired, this absolute need to use the eye drops is passed onto the family and/or caregivers. Unfortunately, this can include having to use multiple people to force open a patient’s eyes in order to apply the drops.
The question then becomes, at what point do we as providers need to change our management goals because we have reached our desired outcome of providing good, functional vision at the end of life. It is critical to realize that at this stage we join the palliative team to help with the goal of improving quality of life. The following are three points I recommend to all glaucoma providers in order to successfully make the transition:
1. Learn to better identify and be more comfortable with patients entering the end of life. At first this may seem uncomfortable because we don’t routinely talk about these issues, but just as with anything else, more practice makes it better and easier. Chances are these patients have seen the doctor for many years and have developed a high level of trust, such that these discussions should be done. It’s our duty.
2. Take a moment to reassess the goals for these patients. This includes a discussion about how the use of treatment — ranging from remembering the eye drops to administering the drops to the eyes to the possible side effects — influences their lives. Evaluate the need for each medicine and ask if this additional drop is worth it to the patient at this stage of disease and life.
3. Touch base with the primary (or hospice) doctor taking the lead in the patient care. Not only can this give great insight into the patient’s goals but also reassures the patient and family that the entire physician team is aligned in care.
As glaucoma doctors, we are given the trust and responsibility to travel on the journey with our patients who have this disease. It is just as important, if not more, that we know how to provide care for them at the end of life just as we did the entire time before that period.
Disclosure: Teymoorian reports no relevant financial disclosures.