At seven months old, toddler Alfie Evans was admitted to Alder Hey Children’s Hospital in Liverpool, UK. Doctors diagnosed him with a degenerative neurological condition, but couldn’t confirm the exact type.
Alfie spent more than a year in a semi-vegetative state, and eventually his parents and the medical team began to disagree on the best course of action for him. The matter ended up in the highest legal courts, and resulted in heated public debates about the boy’s future.
His case brought to the spotlight the need for patient empowerment in healthcare. Many wondered: how was it possible that the parents of a sick child couldn’t influence his treatment plan?
At its heart, patient empowerment is about ensuring patients have sufficient understanding of their condition and treatment options, in order to have informed discussion about their care plan. It should not be seen as a threat to medical expertise, but rather, an option to tailor care plans to best suit the individual, in order to achieve mutually-acceptable outcomes.
The risk of not working in partnership with patients to empower them is that they will seek to self-empower through alternative means. It’s easy to believe that nowadays, when illness strikes, Google is the first port of call, not the doctor. Confusing online information, self-curated to suit netizens’ biases, may result in people making poor health choices, or in patients coming to doctors armed with incorrect opinions and unwilling to listen to the trained expert in the field.
Patient empowerment need not require huge effort in all cases. It may simply begin with a move to change the level of information offered to a patient so they can better grasp their condition and their treatment options.
Effective patient empowerment is also built upon trust. It seems likely that the trust between Alfie’s parents and his medical team broke down over time. The uncertainty over his diagnosis may have played a role, allowing his parents to believe that other doctors might be able to define the exact nature of his condition and perhaps find a cure.
Many factors affect the development or loss of trust. For example, when we don’t feel listened to or taken seriously, or when we feel our opinions don’t count. Once trust is lost, it’s harder to accept the facts we are told. Furthermore, when emotions run high, logic and fact-based arguments gain little traction until sufficient trust has been built.
Once trust is lost, it’s harder to accept the facts we are told.
Listening, understanding, informing
To build trust, we need empathy, for which a critical ingredient is listening. This helps patients feel valued, listened to, understood, and informed. These in turn help to strengthen the trust between doctor and patient.
At present, it is predominantly a one-way flow of information from expert to layman: the doctor notifies the patient of the diagnosis and treatment plan, and then instructs them to adhere to the necessary medication or rehabilitation. At most, patients might expect to be asked if they understand their instructions, or to contribute information to enhance the medical expert’s knowledge of their condition.
A greater degree of engagement will help patients gain a deeper understanding of their own conditions, root causes, preventative measures, and treatment options. Such empowerment encourages the patient to take greater responsibility for their health, rather than relying on the healthcare system to fix them when their health fails.
At the same time, such active engagement can improve the doctor’s understanding of what will work for the patient. This will allow them to provide the most appropriate level of care to suit the lifestyle, commitments, and resources of the patient, within medical constraints.
The evolving patient-doctor relationship
Citizens are increasingly empowered thanks to the digitalisation of services and access to information in most areas of life. We can gain a degree without going to university. We can book a round-the-world trip without using a travel agent. Hence, we expect the same level of power when it comes to our healthcare.
In the new order of things, we might look at patient empowerment as an opportunity for us to augment medical skills with human skills: my doctor is the expert in the diseases that are affecting my body, but I am the expert in being me. When we value individuals’ expertise, we help them to buy-in to our activities.
In the era of democracy through digitalisation, it is no longer realistic to assume that patients or their families will blindly accept the expert view without question or challenge. However, this brings an exciting opportunity to open up the future of healthcare to a whole new network of practitioners.
Tamsin Greulich-Smith is Chief of the Smart Health Leadership Centre at the National University of Singapore’s Institute of Systems Science.