08:Introduction - Beyond the Guidelines

26/06/2023

In 1994, my grandmother, a woman in her 80s, was not in great health. She had been wheelchair-bound for many years because of congenital dislocation of her hips. She had cardiac failure. She had diabetes. She had Paget’s disease of bone which affected some of the major bones in her body, including the skull plates of her head. She had cataracts so she couldn’t see very well. She had a severe form of rheumatoid arthritis that caused her considerable distress. Then, she was hospitalised and it was found that she had pneumonia. She was a sick woman.

While in hospital, she was diagnosed with a condition called atrial fibrillation. This is an irregular beat of the heart characterised by the loss of the co-ordinated contraction of the top part of the heart, the atrial chambers. The condition affects the pumping capacity of the heart, important because it reduces how well the heart functions as a pump. It can also cause other problems which carry their own risks. One of these is the formation of a clot within the heart which can lead to a stroke.

When this near-blind, wheelchair-bound, 80+ year-old lady with bad rheumatoid arthritis, cardiac failure and diabetes left hospital, because of the
atrial fibrillation risk of stroke, she was started on a medication called warfarin. Warfarin is a blood thinner and works well to reduce the risk of stroke. The problem was that Gran was on multiple tablets already. She couldn’t really see what she was doing and so Grandpa looked after her medications. She had a lot of trouble having regular blood tests, a management imperative when using warfarin. Even more importantly, though, because her heart was not working properly, blood was accumulating in her organs. One of the important organs where it was collecting was the liver, and the liver is where warfarin is metabolised or processed.

I saw this as a difficult situation. As high as was the risk of stroke, treatment with warfarin seemed to present a situation that could lead to complications that probably outweighed the benefit, at least for my grandmother. While the medical team had made the decision to commence a blood-thinning agent in keeping with all the guidelines regarding atrial fibrillation, the guidelines didn’t consider, specifically, my grandmother’s overall medical condition. The guidelines didn’t address the needs of a person who was over 80 years of age, visually impaired, a diabetic with rheumatoid arthritis who also had cardiac failure and problems with her liver function, leading to an inability of the body to potentially clear and manage that drug properly and so bring her benefit.

After detailed discussion with her medical team, we thought, on balance, Gran’s life was less complicated by using aspirin instead of warfarin. This was not the guideline recommendation but, for her, almost certainly the best and most sensible compromise. She lived at home and then moved to a nursing home where she died about three or four years later, from a stroke. Atrial fibrillation is a common condition. We know that it affects more than 30 million people worldwide. Statistics show that for adults over 20 years of age, it affects three percent of the population and for adults over 80 years of age, more than 15 percent of the population. So, if you have atrial fibrillation or you know someone who has it, it is no surprise.

Although atrial fibrillation is widespread, the way we manage it shouldn’t always be the same for everyone. It is a condition that warrants good information and good education so that patients can be engaged in their own best management. Gran’s circumstances highlight that we are all individuals. This requires each patient, maybe also the family but certainly the patient, and the doctor looking at the pros and cons of each intervention and coming to an understanding of the individual’s needs and circumstances.

In the following pages, I will explain what the condition is, how we diagnose it, how we manage it and how that impacts on the patient. We will look at the drugs and other approaches that can be involved in treatment. We will scrutinise atrial fibrillation in a way that allows patients and medical practitioners to understand the best way to look after the condition in personal sets of circumstances.

While this book will provide interesting and useful details, it will also pose questions, hopefully resulting in some significant and revealing discussions between you, the individual, and your medical care providers.

Let’s begin.