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PRIMARY CARE OPTOMETRY NEWS 1/1/2006
Help refractive surgery patients cope with unexpected results
These patients experience a sense of loss and go through a grieving process.
John Potter, OD


Two years ago, I was asked to take on the responsibility for helping patients within TLC Laser Eye Centers who had significant eye or vision problems after refractive surgery. One of the first things I learned is that complications are not necessarily the same thing as unexpected results. Complications are a part of any surgery, and our patients and doctors understand the risks compared with the benefits and generally make good, informed decisions.


John Potter

However, I was not prepared for patients’ responses to unexpected surgical results. I was surprised to see that complications are just one part of the complex and very human behavior your patients may exhibit after surgery. More important than this observation was the sense that I was encountering loss more commonly associated with grief than anything else.

Grieving is a healthy human response to significant loss. However, understanding grieving requires some knowledge and sensitivity that may not come naturally. By sharing my experiences, I hope that you will be better able to help your patients.

Unexpected results after refractive surgery are uncommon, so you may have never had a patient who has gone through this. However, because our patient base is so large, and because we are so diligent about dealing with issues that may arise after surgery, we have learned a lot that may benefit you and your patients.

First response: a state of shock

When your patient has an unexpected result from refractive surgery, the first response is to enter a state of shock, which lasts for days or weeks. This is a good thing, because it protects patients from having to deal with a difficult concept: they have not gotten from refractive surgery what they thought they would.

This does not always mean that the surgery results were bad. For example, a patient who expected monovision but had both eyes corrected for distance is often as emotional and distraught as a patient who has an incomplete or free flap. Again, the emotion is not caused by the scope of the problem in many cases, but rather by the fact that expectations were not met. It is useful to note that you will go through some of the same emotions your patient is going through.

During this period, you may find that your patient is very accepting of the situation. Even in the worst imaginable circumstances, patients in this stage are often almost numb to the impact of their situation, and doctors mistakenly believe that everything will be just fine. As a result, you may not see your patient as frequently as you should, which leads to some compromise in the doctor-patient relationship.

In fact, you should see your patient at least weekly for a month or so. Your purpose is to stay close to your patient, because you need to be in touch as they move from this first phase to the next.

Phase 2: expressing emotion

Shock does not last for long, and the next phase your patient will go through may surprise you. This phase is highly predictable, so it is important to understand it when it occurs. Your patient will become very expressive, and that almost always takes the form of anger and frustration.

My experience suggests that this phase causes doctors to step back and withdraw from the patient. This is exactly the opposite of what you should do. You should draw yourself nearer to your patient emotionally.

Why do you back away? It is a very uncommon experience in clinical practice for a patient to yell at you or express a great deal of anger and frustration when you did not expect that level of emotion.

Your first response to this expression of emotion should be to put some distance between yourself and the patient by using the image of “going to the balcony.” Imagine yourself in a large auditorium. Your patient is on the stage, and you are in the last row of the balcony. This image of distance will help you maintain your poise in the face of anger, frustration and hostility.

Once you are in a position emotionally where you can help your patient, I recommend that you say three things: (1) honestly express your concern for your patient and his or her problem, (2) state clearly what you are going to do about the problem, and (3) suggest to your patient that whatever you learn from his or her unfortunate circumstances will help you avoid such problems with other patients in the future.


Three-step response to patient’s frustration

This first step in the interaction is critical. Do not say that you understand what your patient is going through emotionally. This is a common, but enormous, mistake. Your patient is likely to respond to you by making it very clear that you have no idea what he or she is going through, and, in fact, you don’t. You should state directly that you know your patient’s situation must be difficult. This acknowledgment is very important.

Now you can proceed to the next step. Here, it is very important that you be straightforward with your patient. If you know what the next steps in your patient’s care should be, then say so. If you don’t know, tell your patient that you don’t know, but you will find out. Because we often struggle with dealing with anger from our patients, if we are then less than forthright with them, we are beginning to lose the doctor-patient relationship.

The third step is often not included by doctors, but my experience is that it is vital. At this stage, patients are often very concerned about the welfare of other patients. Although this may seem an odd reaction at first, it is not if you look more deeply into the emotion expressed.

Your patient has an unexpected result from refractive surgery, and he or she is emotionally distraught and struggling to deal with the situation. The patient cannot imagine how anyone else could deal with what he or she is going through, so he or she often has a great fear that others will suffer. In my experience, patients at this stage almost always think they are handling their situation as well as they can, even though it may not appear that way to you. However, it is a very human reaction, and if you understand it, you can help your patient through it.

Patient feels depressed and alone

Your patient may very well be feeling emotions that he or she has never had before. Such emotion becomes very confusing and often leads to a situational depressive state. It is not at all uncommon for patients to tell me or their doctors that they have thoughts of ending their own lives. I am not aware of any patient who has ever followed through with this, but it is important to realize that this expression tells you precisely where they are in dealing with their grief.

You may not hear from your patient for months, and you may be relieved. Again, this is a very common and human response, so it is perfectly acceptable to have these feelings, even if they are inappropriate. You need to understand that your patient needs you now more than ever, but it is a difficult challenge to take the initiative to continue to try to help your patient when you are struggling yourself to deal with his or her problems.

In my experience, you either need to call or see your patient at least monthly. A call often will suffice, and it is important for you to know that you don’t have to have a great deal to say when you call. Tell your patient that you were thinking of him or her and that you are concerned. You don’t have to have all the answers to remediate the problem, but you do need to communicate your concern effectively. Your patient may say that you don’t need to be concerned, or that you don’t need to call, but you do. And you need to go over the three points of discussion again and again.

“Physical symptoms” may manifest

This next stage of grieving over unexpected results from refractive surgery is often very alarming to the doctor. Again, it is important to be able to identify the stage and understand it so you can help your patient. A common expression of this stage is for your patient to say something like, “My eyes are so bad that I cannot see to do my work at all.” Or, “My eyes are so bad, and my vision so poor, that I cannot drive a car at night.”

I have had patients express this emotion as back pain and other symptoms that seem unrelated to eyes or vision, but it is important to know what the emotion is telling you. Ask your patient if he or she is still working or still driving at night. Much to your surprise, your patient will say that he or she is still working full-time or still driving at night.

You must be careful here. If you become angry with your patient because it appears that he or she is misleading you or not telling the truth, you will be making a very grave error. Instead, you should respond that you understand that activities such as working or driving at night must be difficult. If you challenge your patient on what appears to be a contradictory position, you will push him or her backward and cause withdrawal. The patient will believe that you simply do not understand how much he or she has suffered. This will strain the doctor-patient relationship further, and it will make it that much more difficult for your patient to progress through the other stages of grieving.

Patient may become anxious

Your patient may become anxious and think of nothing but his or her eye and vision problems. It is very common to hear the patient say, “I will go anywhere, anytime, and I will pay whatever it takes to fix my problem. This is terrible! I want this fixed now. Just tell me what to do, and I will do it.”

This is the stage where operating surgeons in refractive surgery make their most common errors. A doctor may well be tempted to do what the patient has asked for, and an additional surgery may be performed “because the patient really wanted me to fix the problem.”

Additional refractive surgery is not a treatment for anxiety in grieving over unexpected results from refractive surgery. Countless numbers of surgeons make this mistake and live with the results, which are almost universally not what the doctor expected. Nor are the results from doing surgery when a patient is anxious what the patient wanted, anyway. So, again, the doctor-patient relationship is strained and often will break at this stage.

Patient experiences guilt

This next phase does not last very long, but it can be quite problematic for patients and their doctors. In my experience, this phase lasts only a week or two, but it is important to recognize it.

Your patient may ask you if he or she made a mistake having refractive surgery in the first place, and you may be at a loss for words. On one hand, you want to say that he or she did not make a mistake in having surgery, but that can be difficult because your patient has an unexpected result. On the other hand, you can’t say that you think he or she made a mistake in having surgery, because he or she didn’t. Both you and your patient carefully considered the options.

There are three things you can say that will help you and your patient. First, acknowledge that the feeling your patient is having is a perfectly reasonable concern. Doubt is a part of loss and grieving over loss, so it is a normal human response. Second, if you have had other patients tell you something similar, or if you are aware that patients might have these feelings, it is important to tell your patient that other patients have had similar feelings as they deal with their unexpected results from refractive surgery. Third, you need to use your awareness and understanding of your patient’s emotion to suggest that these feelings will diminish over the next few weeks, because they will.

Patient may become angry, resentful

The next stage in your patient’s journey can be quite difficult to understand. Your patient may develop an anger and resentment of you and what you have done — or not done — to help him or her. The anger is almost always completely out of character for your patient, and it may be directed at family members or loved ones, too. Many times, a family member or loved one may call you and beg for your help in dealing with the patient. This can be difficult for you unless you have some sense of what is happening and why.

Your patient may begin to feel that you have forgotten how much he or she has suffered, and he or she must keep the memory of the suffering alive and well. In fact, it may become his or her personal mission in life for months or, in some situations, years to remind you and others of how much he or she has suffered. Such emotion is often difficult to understand, but it is critical that you do. Otherwise, you will be of no help to your patient.

Several Internet sites are littered with these patients’ feelings and their emotion over what they feel they have lost with their unexpected results from refractive surgery. I am not a great fan of this form of dealing with loss, because what the patient needs is their doctors, not the Internet. The solution is to stay close to the patient.

Patient resists getting back to normal

The most complex situation you may find yourself in is one where the patient is resisting returning to his or her normal self. You may very well have a treatment or have arranged for additional surgery, but your patient will not use the treatment or won’t show up for appointments. In fact, you may become quite frustrated with your patient — but it would be a mistake if you did. In fact, the harder you push, the more resistance you will encounter, even to the point of what may appear to be absurd.

You may know someone who has lost a child to illness or other tragedy, and the family keeps the child’s room exactly as it was right before his or her death for years and years. They know every detail of the room, and even the slightest change is devastating. Patients suffering with unexpected results from refractive surgery may feel similarly, and you need to recognize it to deal with it effectively.

The thing to do here is to back off completely. Tell your patient that you know having treatment or additional surgery is an important decision and that time should be taken to make sure the decision is right. Stay in touch with him or her over the next months. Don’t push, but remain committed to helping when he or she is ready.

Gradually, hope returns

One of the most meaningful experiences of my professional life is to have worked with patients and their doctors for several months and see hope return. Your patient will begin to talk about the future and not dwell on the past. Your patient may be ready to make additional decisions about treatments or surgery, and your patient may end up with better vision and results from refractive surgery that can benefit him or her, not be the major focus of their life. When this occurs, it is a remarkable experience.

I have had patients apologize for previous behavior, which is completely unnecessary, it is as though it was I who have suffered, not them. Additionally, I have had countless patients offer to help me by making themselves available to other patients with similar problems.

Learn about loss to help patients

Unexpected results from refractive surgery can be a challenge for doctors and patients. Learning about patients from the point of view of their loss is an important step in being able to help them. Your patients need you more when they have problems than ever before, so don’t abandon them or feel threatened by things that you may not yet understand. Make an effort to understand their issues and problems, because what the patient wants more than anything else is a doctor who understands them and will stick with them through a difficult situation.

For Your Information:
John Potter, OD, is a Primary Care Optometry News Editorial Board member and vice president for clinical services for TLC Laser Eye Centers. He can be reached at 18352 Dallas Pkwy., Ste. 136, Dallas, TX 75287; (972) 818-1239; fax: (972) 818-1240; e-mail: john.potter@tlcvision.com.

Wow.

I am going to print this and send it to the "doctor" who pretty much failed on every bit of good advice that is in this editorial.