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HomemieyecareGlaucoma and the Five Stages of Grief

Glaucoma and the Five Stages of Grief

For the past four years Glaucoma Australia has run a successful Patient Support Program that has helped over 23,000 patients living with glaucoma. During that time Glaucoma Australia’s clinical educators, who are trained orthoptists, have identified distinct patterns in the ways newly diagnosed glaucoma patients respond to and process the news they have glaucoma.

In this article, Richard Wylie, the organisation’s Chief Executive Officer, offers insights into the patient journey and explains how the program aims to ‘extend your care’ and ensure your glaucoma patients embark (and stay) on the optimal treatment course.

Think of the last newly diagnosed glaucoma patient you spoke with. How did they react to hearing the news they have glaucoma, one of the world’s leading causes of blindness? To the realisation that they must accept a future of living with glaucoma and the threat of a potentially life-changing disability?

Rarely do humans take such consequential news in their stride and embark happily on a new linear path without some sort of emotional upheaval.

The Five Stages of Grief is the title of a theory developed by Swiss psychiatrist, Elisabeth Kübler-Ross, to describe the five emotional states that terminally ill patients were likely to progress through after being informed of their diagnoses. Those five common experiences are: denial, anger, bargaining, depression, and acceptance.

While glaucoma is not terminal, it’s still a useful framework in which to consider the information needs of newly diagnosed glaucoma patients. The reality is that grief – or receiving lifechanging health news – can take a ‘messy’ path (Figure 1). This is where Glaucoma Australia’s Patient Support Program aims to support glaucoma patients.

We reduce their anxiety following such a life-changing diagnosis, answer their questions, and also help you (their trusted eye health professional (ECP)) to ‘extend your care’ beyond their scheduled consultations.

 

THE FIVE STAGES OF GRIEF

Denial

Due to the asymptomatic nature of glaucoma, many patients can experience initial denial. “This can’t be right, I’m feeling fine”, is a common response to a diagnosis. Some wonder if the ECP has made a mistake, or if the test wasn’t taken correctly. This can lead some patients to seek a second opinion or call Glaucoma Australia in the hope that someone, anyone, can tell them they don’t have glaucoma.

It’s not uncommon for these patients to delay commencement of their treatment, thereby allowing their glaucoma to progress and steal more of their precious sight. In this context our clinical educators take the time to reexplain the key characteristics of glaucoma, underline that it is a progressive illness with no cure, and emphasise the urgency to act now and follow their clinician’s advice.

Anger

Some patients respond to negative news with anger, often towards their ECP, as if they are responsible for ‘giving’ them glaucoma. Others are distrustful of the health system and by extension, health professionals. Our clinical educators have heard patients say they feel there must be financial incentives for health professionals to recommend expensive ongoing tests and treatments. This type of ‘conspiracy theory’ thinking has only increased in our ‘post-truth’ ‘post-COVID’ world.

In this situation, hearing the same messages from our clinical educators that they have heard from their ECP can go a long way to helping them accept their diagnosis and prescribed treatment pathway.

Bargaining

Once a patient accepts their diagnosis, they need to become accepting of the recommended treatment pathway. Beyond the very human fear of anything being inserted into our eyes, some patients are strong believers in natural therapies and are suspicious of anything ‘artificial’. Indeed, our clinical educators have spoken with numerous patients who have delayed commencing their prescribed therapies or delayed recommended procedures while they cycle through a range of alternative treatments like diet modification, elevated sleeping, and other ‘miracle cures’ they have discovered on social media or via ‘Dr Google’.

Depression

Now that the full weight of the diagnosis has settled, some patients, particularly younger male patients, become increasingly anxious about what it would mean to lose significant sight, how this will impact their work, their independence (losing the right to drive), their lifestyle (hobbies or travel) or what it will mean for their family, particularly if they are a parent of young children. This is where Glaucoma Australia’s trained counsellors really play an important role. They know how to counsel patients who are not coping with their diagnosis and get them back into a more positive frame of mind to get the best possible treatment outcomes.

Acceptance

Once patients have accepted their diagnosis, have listened to the advice of their ECP, and have embarked on their treatment journey, the job is by no means over. Data from international studies shows that treatment compliance in patients with glaucoma is poor, with only 50% of patients remaining compliant six months after diagnosis and less than 37% after three years.1 So why is compliance so poor? I think I’ll have to save that for another article.

 

Figure 1. The stages of grief, adapted from the theory described by Elisabeth Kübler-Ross.

Countering Dr Google

Glaucoma patients can become voracious consumers of new information around their condition – whether it is from a trusted source or not. Indeed, our clinical educators often find out about new treatments, complementary therapies, or newly published international glaucoma studies from our patients. The job of Glaucoma Australia’s clinical educators in this context is to manage the patient’s expectations, to focus on the therapies and procedures that have been approved for use in Australia, and where complementary approaches are concerned, to emphasise that these cannot replace their prescribed glaucoma treatments and should first be discussed with their treating ophthalmologist.

CASE ONE: THE IDEAL PATIENT

Jenna,* a female patient in her mid-50s, was referred to an ophthalmologist with suspected glaucoma due to high eye pressure and visual field loss. Concurrently, the optometrist referred Jenna to Glaucoma Australia for education prior to her first ophthalmic appointment.

Glaucoma Australia contacted Jenna to help her prepare for the appointment and educate her on what to expect: how much time to allow, what tests would be performed, what she should take with her, and what questions she might like to ask. Being an experienced patient educator herself, Jenna was confident of being the “ideal patient”.

Jenna was diagnosed with primary open angle glaucoma and started on eye drops in both eyes. The treating ophthalmologist also indicated selective laser trabeculectomy (SLT) could be required to reduce intraocular pressure (IOP) to target levels, however she was reluctant to adopt this course of action as she was overwhelmed by the initial confirmed diagnosis.

Four weeks later, when Jenna attended her follow-up appointment, she presented with higher IOP and further visual field loss. Jenna contacted Glaucoma Australia following this appointment. She was distraught, disappointed, and upset with her ophthalmologist because her glaucoma had progressed and there was some visual field loss in as little as one month.

While speaking with Glaucoma Australia’s clinical educator, Jenna admitted to doing what she tells her patients not to do; i.e., following the advice of Dr Google. She had spent a month sleeping in an elevated position, changed her diet, and added vitamin supplements – expecting her glaucoma to be ‘fixed’.

Jenna confessed that she was ‘not ready’ to take on the advice of her ophthalmologist during her first appointment when a combination of laser and eye drops was recommended. Glaucoma Australia’s clinical educator talked her through accepting her glaucoma diagnosis and allowing her ophthalmologist to help her manage her glaucoma with proven methods of treatment.

CASE TWO: IF ONLY

Sam,* a male patient in his 40s with a family history of glaucoma, was not surprised when he was diagnosed with primary open angle glaucoma. During his first support call with Glaucoma Australia, soon after diagnosis, it was noted that he was compliant with his eye drops and understood the importance of lowering his eye pressures.

During a routine six-monthly follow-up call, Sam advised Glaucoma Australia’s clinical educator that “everything was great”. When questioned about attending his follow-up appointment, he was confused as he had finished his prescribed eye drops and his eyes “felt great!”. Unfortunately, Sam was under the impression that glaucoma eye drops work like a course of antibiotics and that his eye pressures would remain lowered once he had completed the course. After learning that glaucoma is a progressive, lifelong condition with no cure, he immediately made another appointment with his eye specialist and was back on track with his glaucoma treatment.

CASE THREE: RISKY BUSINESS

Mike,* a male patient in his 70s, was fearful when his ophthalmologist recommended glaucoma surgery after 20 years of successfully managing his IOP with eye drops. He was aware that his glaucoma had been progressing for the past year and recalled his ophthalmologist indicating that surgery would be required at some point.

As required, the ophthalmologist provided Mike with an information sheet outlining the possible risks associated with the surgery. Coincidently a friend had undergone eye surgery which had “not gone well”, but Mike had not felt comfortable discussing his concerns with his ophthalmologist.

During a support call with Mike, Glaucoma Australia’s clinical educator took some extra time to address his concerns and acknowledged that making decisions around and risks differ for each case, and that it was his legal right to be aware of the risks associated with surgery, which is why the ophthalmologist had shared this information. The benefits of surgery were discussed with Mike and the clinical educator encouraged him to speak to his ophthalmologist about his personal risk of complications and chances of a successful outcome. Mike wrote down a list of questions to ask the specialist and felt more confident about making a decision with increased knowledge and less anxiety.

REGISTER YOUR PATIENTS

No patient wants a diagnosis of glaucoma and for many it will take time to process the diagnosis. But with the expertise and the support of clinical educators at Glaucoma Australia, we hope to ‘extend your care’ and ensure your glaucoma patients embark (and stay) on the optimal treatment course you’ve laid out for them. To register a patient with Glaucoma Australia,

visit: glaucoma.org.au.

*Patients’ names changed for anonymity.

Richard Wylie is the Chief Executive Officer of Glaucoma Australia.

Reference

  1. Bansa, R., Tsai. J., Medical Treatment: Compliance/Adherence to Glaucoma Medication – A Challenge. Journal of Current Glaucoma Practice, 2007.

Glaucoma Australia’s support and advice is freely offered to patients registered with our service. We often received letters of thanks and appreciation. Here are just some comments from our patients:

  • “Your support and time you take to provide this information is invaluable to me, and I can’t thank you enough. Your support has made the world of difference for me.”
  • “Just wanted to say how much I have appreciated our conversations. Your advice and information has been invaluable, and I am most grateful for the support when dealing with my conditions.”
  • “It’s hard to put into words how much it means to have this support. When I call the support line, it’s amazing. They’re always there for us. They remind us that there’s hope and we would be lost without them.”
  • “Glaucoma Australia played a huge role in helping me along the road to acceptance. They treated me as a whole person – not just as a patient with glaucoma. Through Glaucoma Australia, I’ve gained a support network, and the information and resources I need to manage my condition long into the future.”
  • “I can’t put into words how important this support is to me. It’s truly life changing. And as a dad, knowing my children have an almost one in four chance of developing glaucoma, it’s a huge relief to know that… the Glaucoma Australia team is just a call away.”
  • “Glaucoma Australia has always been there for me whenever I needed them – they understand what people with glaucoma face and regularly check in on me. This is a huge comfort.”
  • I just love this (Glaucoma Australia Patient Support) group. Thanks to you, I asked today what sort of glaucoma I had and now know that I have closed angle. It’s only taken 10 years + to ask/be told. Perhaps I was told initially but all I heard through my tears was glaucoma.”