What is Ocular Futility and End of Sight Care?
Ocular futility is the term used when medical treatments no longer provide a benefit for the patient’s eye health. It can be hard to determine exactly when further treatment for eye conditions would be ineffective. Health professionals often base this on the patient’s overall physical, mental, and emotional health. They use the concept of medical futility to help make the difficult decision not to treat a patient because the available treatments will probably not result in a benefit. The choice to withhold patient care is a complex ethical issue and it varies depending on the practitioner.
In the field of ophthalmology, there are no absolute rules for when continuing treatment is considered futile. In general, if a patient’s vision decreases to the point where they can’t perceive light, the focus of their eye care shifts from preserving vision to giving comfort and maintaining outward appearance. However, doctors don’t use a strict measure of vision clarity (visual acuity) to decide when to stop interventions that may be risky. For example, a patient with a severe, end-stage form of age-related vision loss (macular degeneration) might not see any improvement from ongoing regular injections into the eye. These injections can carry rare but serious risk of infection (endophthalmitis), and the need for regular appointments may be a burden for the patient and their caregivers.
What Causes Ocular Futility and End of Sight Care?
Eye health issues can crop up in many ways, whether from diseases, accidents, or simply getting older. Here are four scenarios and the common medical procedures associated with them:
Eye Trauma
Severe eye injuries, like an open globe injury (a break in the outer wall of the eye), can have uncertain results. Doctors often calculate an ocular trauma score, which helps predict the consequences after the eye is repaired. Even then, it’s standard practice to immediately seal the wound in the eye first, and then assess what to do next. For serious eye injuries, in the next few days following surgery, some patients (10% to 30%) may require enucleation or evisceration (removal of the eye or its contents). Deciding to remove the eye is a tough call to make, especially if the patient is too injured to give consent. In these situations, it’s hard to balance the benefits of less procedures with the risks of trying to save the injured eye.
Advanced Age-related Macular Degeneration (ARMD)
Advanced ARMD is often accompanied by geographic atrophy (a gradual loss of retinal cells) or a choroidal neovascular membrane (new blood vessels grow beneath the retina, causing vision loss). There’s no cure for nonexudative ARMD (also known as ‘dry’ ARMD), so the atrophy can’t be stopped. However, for exudative ARMD (‘wet’ ARMD), a treatment involving injections into the eye can be given, but this doesn’t halt the eventual vision loss. It’s often unclear when to stop these injections, especially if the patient’s vision continues to worsen. Practically speaking, doctors tend to stop injections if there’s a large scar in the eye, even if there’s additional fluid or bleeding.
Eye Surgery in a Terminally Ill Child
Eye surgery in children, such as strabismus surgery (for cross-eyed or ‘lazy eye’ conditions), can help restore normal vision and improve the child’s appearance. But when a child is terminally ill, it’s hard to decide whether surgery is worth pursuing. In some cases, parents request surgery to help them accept their child’s condition.
Advanced Glaucoma
In people with advanced glaucoma (a condition causing damage to the optic nerve), the goal is to preserve any remaining vision. This can involve rigorous eye drop routines, which can be burdensome and cause side effects, leading to some patients not following their treatment plans. Surgery might also be an option for these patients, but it carries high risks such as infection or low eye pressure. In cases where no other treatment works, transscleral cyclophotocoagulation (a laser procedure to lower eye pressure) may be used, but this also carries the risk of vision loss.
Neurotrophic Keratopathy
Neurotrophic Keratopathy is an eye condition often caused by a herpetic viral infection as well as other toxins or injuries. When severe, this disease can lead to corneal ulcers and melting, as well as potential perforation of the eye. Treatment options are limited at advanced stages and corneal transplants rarely survive. The decision to proceed with invasive treatments is always challenging. Although there are promising new therapies emerging at specialty care centers, the reality is that such options are not widely available.
Risk Factors and Frequency for Ocular Futility and End of Sight Care
In Denmark, the number of people going legally blind due to ARMD (Age-Related Macular Degeneration) has dropped nearly by half since 2000. In 2010, the rate was around 25.7 out of 100,000.
In the United States, severe eye injuries can often result in legal blindness, with 27% of seriously damaged eyes meeting this unfortunate outcome. Some research even says that 35% of these severe eye injuries lead to a vision clarity of less than 20/200, which is quite poor.
Primary open-angle glaucoma, a common eye condition, affects about 2% of people aged over 40, and becomes more common as individuals age. It’s hard for patients with this condition to realize they have a problem until significant and sometimes permanent damage has occurred to their optic nerve. In fact, a study found that in newly diagnosed cases of glaucoma, 30% of patients already had a severe form of the disease in at least one eye.
- Neurotrophic keratopathy occurs in roughly 1 to 5 per 10,000 people.
- It’s a serious condition; one study showed that 30% of eyes with this problem needed to undergo a cornea transplant.
- Furthermore, in 33% of these transplant cases, the patient needed multiple transplants within a year.
Signs and Symptoms of Ocular Futility and End of Sight Care
When dealing with eye conditions that might not improve with treatment, there are several factors to take into account. These factors help decide the usefulness of further eye treatments.
Some factors to be taken into account include:
- Any history of childhood or systemic diseases associated with a short life expectancy,
- Any eye injuries,
- Any other severe systemic conditions that can interfere with proper eye care, like advanced dementia,
- The fatigue of the patient or caregiver due to frequent appointments and lack of improvement despite treatment,
- Poor starting vision and unusually high pressure in the eye can be crucial physical examination findings that suggest the need for careful evaluation of further eye treatment.
In specific cases, there might be no point in continuing treatment. For example, in patients with advanced Age-related Macular Degeneration (ARMD), scarring or fibrosis involving the central area of the retina, or atrophy may indicate continued intervention’s futility. In case of severe eye trauma, if the internal contents of the eye are forced out or if there’s a penetrating injury of the back of the eye that extends more than 5 mm behind the limbus, further eye treatment might be futile. A pale optic nerve or the large cup-disc ratio in advanced glaucoma may mean that further treatments might not be beneficial. And finally, patients with neurotrophic keratopathy who show dense band keratopathy, blood vessels or swelling in the cornea, infiltrates beneath the cornea’s surface or thinning or ulcers in the cornea may have reached the limit of eye therapy.
Testing for Ocular Futility and End of Sight Care
For certain eye diseases, imaging studies can be instrumental in understanding the severity of the condition.
One such condition is Advanced Age-Related Macular Degeneration (ARMD). In this case, a special type of eye scan called Optical Coherence Tomography (OCT) is used to look at the central region of the retina, known as the macula. If this scan reveals complete blurring of a critical area in the macula or significant scarring, it’s an indication of serious and permanent damage. This would mean there is a limited chance for improving vision with treatment.
Similarly, in patients with advanced glaucoma, an OCT scan of the layer of optic nerve fibers and a visual field test, which checks how well you see in various directions, can give doctors an idea of the severity of damage. The OCT scan would show thinning of the optic nerve head, and the visual field test would reveal a significant decrease in overall vision or only a very small area of vision left. These would suggest severe, irreversible damage to the optic nerve, and this could mean a poor prognosis for vision recovery even with ongoing treatments.
Finally, in the case of severe eye injuries, a type of scan called a Computed Tomography (CT) scan can be quite telling. This scan checks for eye shape within the bony socket that holds the eye, known as the orbit. If it shows a loss of the eye’s normal round shape, this could imply severe trauma with possibly permanent damage, suggesting a limited chance for meaningful vision recovery.
Treatment Options for Ocular Futility and End of Sight Care
Some research suggests that it’s up to doctors to decide when treating a patient no longer has any benefit. With that said, it might be best to talk things through with the patient themselves before making such a decision. Striking a balance can be difficult, though, because data about end-stage diseases is not always readily available. Despite this, doctors have a duty to make sure that patients and their loved ones understand the intended outcome of treatment and the odds of reaching it.
For patients who have lost all vision but still experience eye pain, there are certain types of therapy that might help. One example is retrobulbar alcohol, which works by blocking the nerves that transmit pain signals. In one study, 85% of patients no longer felt pain after having this type of treatment, with nobody affected by serious side effects. This could be a good option for individuals who aren’t emotionally ready for other kinds of surgery, or who are dealing with continuing pain after an operation to remove their eyes.
The Gunderson conjunctival flap is a surgical procedure that moves part of the eye’s outer layer to cover its front surface. This can help with conditions like herpetic keratitis, bullous keratopathy, and neurotropic keratopathy, alleviating pain from injuries to the eye’s surface and blocking certain harmful chemicals. Though newer treatments might have taken over in some cases, this kind of surgery could still be useful for people with serious corneal diseases who aren’t suitable for a cornea transplant.
Permanent tarsorrhaphy is another procedure that can guard the eye against pain caused by exposing the cornea when other therapies haven’t worked. If the eye’s painful but can’t see, we can even think about evisceration or enucleation — surgical procedures that remove the eye itself. However, not everyone is a good candidate for these types of surgery, as they may lack the necessary healthy tissue, and recurring pain due to exposure of an orbital implant, a device placed in the eye socket to replace the removed eye, can be an issue.
Ethical questions come up when treating an eye that can’t perceive light. We often don’t recommend surgery on eyes with no potential for vision often because of the infection risk and the possibility of triggering a serious eye condition in the patient’s other eye. It’s crucial to move carefully when any treatment could affect not just the patient’s sight, but also their general health.
Even so, if the patient is deeply distressed by the eye’s appearance, we may consider surgery. For instance, a white cataract in a blind eye can be visible and cause significant emotional stress for the patient. In this case, cosmetic appearance matters. If the patient is stressed by the appearance of a white cataract in their non-seeing eye, cataract evaluation may be considered for visually impaired patients. However, instead of full surgery, there are less invasive options such as colored contact lenses, corneal tattooing, and the placement of a black sulcus lens.
In some scenarios, it may be advisable to perform surgery if the pain in the blind eye is caused by a problem that can be rectified easily, such as a retained lens fragment. However, when making this decision, it is paramount for healthcare practitioners to respect the patient’s right to make informed decisions about their care, do what’s best for them, and avoid causing harm. If a surgical procedure is being considered for a patient with a blind eye, it’s important to have a thorough conversation with them about their treatment goals, the risks involved, and any other alternatives.
What else can Ocular Futility and End of Sight Care be?
There are several diseases that can lead to severe eye health issues. These include but are not limited to:
- Advanced age-related macular degeneration (ARMD)
- Ocular histoplasmosis syndrome
- Myopic degeneration
- Choroidal rupture
- Angioid streaks
- Pattern dystrophy
- Drug toxicity
- Stargardt and other macular dystrophies
- Central serous chorioretinopathy
For a critically ill child with strabismus, some possible causes could be:
- Decompensated inward or outward turned eyes (esotropias or exotropias)
- Cranial nerve palsies
Advanced glaucoma can be triggered by:
- Toxic or nutritional optic neuropathy
- Arteritic and non-arteritic lack of blood supply to the optic nerve (ischemic optic neuropathies)
- Traumatic optic neuropathy
- Compressive optic neuropathy
Neurotrophic keratopathy, a condition where the cornea loses its sensation causing severe dry eyes, can be caused by:
- Dry eye
- Topical drug toxicity
- Exposure keratitis
- Contact lens-related disorders
- Chemical injury
- Limbal stem cell deficiency
- Acanthamoeba keratitis
- Herpetic keratitis
What to expect with Ocular Futility and End of Sight Care
The term ‘ocular futility’ applies only when a patient has a terminal condition related to the eye or a severe general health condition that prevents further eye treatment from being possible.
Possible Complications When Diagnosed with Ocular Futility and End of Sight Care
Treating patients with eye conditions who are considered at the end of possible helpful treatments can lead to problems from further interventions.
Injections in the eye to block VEGF, a protein that promotes abnormal blood vessel growth, for patients with advanced Age-Related Macular Degeneration (ARMD) could potentially lead to a serious infection inside the eye called endophthalmitis. However, it’s worth noting that this is quite rare, with only 1 case reported per 2578 injections.
There are also risks linked with evisceration and enucleation (surgical removal of the eye or its contents), with 1 in 7 patients requiring further surgery as per retrospective case series.
Also, treating end-stage glaucoma with a surgery to relieve eye pressure (trabeculectomy) or an implanted drainage device might increase the patient’s risk of infection by around 3%.
Additionally, vision-threatening complications of these procedures include cataracts, excessively low eye pressure (hypotony), wound opening (dehiscence), choroidal effusions (accumulating fluid under the retina), and failure of the procedure.
Possible Complications:
- Endophthalmitis
- Reoperation risk after evisceration or enucleation
- Infection from trabeculectomy or drainage implants
- Cataracts
- Hypotony
- Wound opening
- Choroidal effusions
- Procedure failure
Preventing Ocular Futility and End of Sight Care
Teaching patients about their condition is a crucial step when it comes to dealing with issues related to eye health. Knowing what to expect in terms of their vision and understanding the anticipated benefits and potential risks of treatment is vitally important. This helps them understand the limits of what can be achieved with their care and sets realistic expectations.
