Part one: The “good patient” problem — When compliance silences the patient
For many people living with sickle cell disease, healthcare is not something we encounter occasionally. It can become a lifelong relationship. From childhood appointments to blood tests, medication, hospital admissions, pain management and sometimes blood transfusions or exchange transfusions, we may spend a considerable part of our lives interacting with healthcare professionals.
Over time, we learn the language of hospitals. We learn our medications. We learn what certain changes in our bodies might mean. Most importantly, we learn ourselves. Yet there is a word that has traditionally appeared in healthcare conversations that I find increasingly uncomfortable: compliance.
A patient may be described as “compliant” if they take their medication as prescribed, attend appointments and follow medical advice. Conversely, someone who does not follow recommendations may be labelled “non-compliant”. But human beings are more complicated than that.
There is an important difference between refusing healthcare and asking questions about healthcare. There is also a difference between being difficult and advocating for yourself.
For generations, many of us were taught that the doctor knows best. You went into the consulting room, explained what was wrong, listened to the doctor and followed instructions.
Medical expertise deserves respect. Doctors, nurses, pharmacists and other healthcare professionals spend years studying and developing their knowledge. I certainly would not suggest that reading something online gives a patient the same expertise as someone who has studied medicine.
However, there is another kind of expertise that matters. Lived experience. Someone who has lived with sickle cell disease for 20, 30, 40 or 50 years has accumulated knowledge about their own body. They may know how their usual crisis begins.
They may recognise certain warning signs. They may know which pain-relief approaches have previously helped them, and which have caused problems. That knowledge should not replace medical knowledge, but neither should it automatically be dismissed. The best healthcare, in my view, happens when these two forms of knowledge meet.
Imagine being offered a new medication. You ask: What does this medicine do? What are the possible side effects? Is there another option? How might it interact with medication I already take? Those are reasonable questions.
Yet some patients worry that asking too many questions will make them appear troublesome. This can be particularly difficult when you are in hospital, frightened, exhausted or in severe pain. You may already feel vulnerable. The last thing you want is to be perceived as challenging the people caring for you.
So, sometimes, patients remain silent. But silence is not necessarily agreement. And compliance is not the same as informed consent.
For consent to be meaningful, patients need understandable information about what is being proposed, including its potential benefits and risks. They should also have an opportunity to ask questions.
This becomes particularly important with a lifelong condition such as SCD. A person may have several specialists involved in their care. They may be prescribed multiple medications. Their treatment may change as they grow older or develop complications.
Sometimes a patient may have previously experienced a difficult side effect. Sometimes there may be practical reasons why they struggle to follow a treatment plan.
Perhaps medication makes them feel unwell. Perhaps getting to appointments is difficult. Perhaps they do not understand why a particular treatment is necessary.
Simply writing “non-compliant” does not tell us the story behind the decision. We need to ask: Why?
What is preventing this person from following the treatment plan? Do they understand it? Are they frightened? Have they experienced side effects? Do they have concerns that have not been addressed? The answer may reveal a problem that can actually be solved.
Self-advocacy does not mean walking into every consultation ready for battle. It means recognising that you are a participant in your healthcare.
There will be occasions when the medical team knows something that we do not. We must be willing to listen. Equally, there may be occasions when we need healthcare professionals to listen to us.
A patient saying, “This does not feel like my normal crisis,” deserves attention. A patient asking, “Could you explain why you are changing my medication?” is not necessarily questioning someone’s competence. A patient saying, “I had a serious reaction to this previously,” is providing important clinical information. Advocacy can actually make healthcare safer.
Perhaps we need to move away from thinking about the ideal patient as the obedient patient. The ideal relationship should be a partnership. That requires responsibility from both sides. Patients should engage with their treatment, attend appointments where possible, take prescribed medication appropriately and be honest about what they are or are not doing.
Healthcare professionals, meanwhile, should create an environment in which patients feel able to say, “I don’t understand,” “I am worried,” or even, “I would like to discuss another option.”
Living with sickle cell disease can already make a person feel that much of life is beyond their control. Our bodies can disrupt work, family life, education, travel and plans without warning.
Healthcare should not remove another layer of control. Being an advocate for yourself does not mean rejecting medical expertise. It means engaging with it. Perhaps the question should no longer be, “Is this patient compliant?” A better question might be, “Does this patient understand, participate in and feel heard in decisions about their care?” That is where genuine partnership begins.
If you would like to get in touch with me about Sickle cell, do so via my email address: [email protected]. And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.