The ethical idea of “do no harm” is one most of us have heard and attribute to the Hippocratic Oath. Medical providers don’t actually abide by this at all, rather something more along the line of “let the benifits always out weight the risks.” Because the truth is that medical providers cause their patients harm all the time. There is no course of treatment (even choosing not to treat) that does not come with some level of risk for a negative out come. It becomes the job of the medical provider to help the patient to weigh the risk vs benefits for various treatment options.
Personal Autonomy, in medical ethics, is usually expressed as the right of competent adults to make informed decisions about their own medical care; that a patient has the ultimate decision-making responsibility for their own treatment. The principle underlies the requirement to seek the consent or informed agreement of the patient before any investigation or treatment takes place.
On the surface, it doesn’t seem like there is any conflict between these two ethical positions. But it is surprising how often conflicts arise between the two. One of the major reasons that there is conflict arises from a difference in power in the relationship between the patient and the provider. There are several important factors in this power dynamic. First is the dynamic of social authority. Second is the disparity of knowledge. Third is the provider’s personal treatment preferences. The final piece is the power of refusal.
When a patient engages with a provider, the doctor is often viewed as an authority figure and the patient responds accordingly. This often leads to a situation where the patient does what the medical provider advises without asking questions or providing input. It is important that the provider takes your views, values and goals into consideration when developing your treatment plan. This is especially true with chronic illness. When you have conditions that cannot be cured, but rather need to be managed, it becomes important to define what success looks like. This will not be the same for everyone. Sometimes, medical providers will feel strongly about treating certain symptoms because of the risks that they present in the future. However, this often means being on medications that have side effects that are not tolerable. This is where weighing that risk vs benefit comes in. A provider will likely want to treat a high blood pressure because of the risk for heart attack and stroke. However, a patient may not want to take the blood pressure medications because they cause dizziness and fatigue, making it impossible for them to enjoy their daily lives. If the authority role is not taken into consideration, the doctor may never learn of these concerns and the patient may end up taking the medication.
The medical provider has the knowledge and chooses when and how that knowledge is dispensed to the patient. If a medical provider deems a treatment too high risk or unlikely to have a successful outcome, they might not even bring it up as an option for the patient. This limits the patient’s autonomy, because the medical provider is making a choice on their behalf by limiting what information is being given. The patient cannot choose a treatment option that is never presented to them. This happens in medicine all the time. Is it unethical? Depends on how you look at it. The reality is that the provider has a limited amount of time to present information and education to the patient. If there are many potential treatment options, it isn’t practical to review the risks and benefits of all of them. They limit their information to present what they believe will be most helpful to their patients and what they believe will do the least amount of harm. Yet, it does give the provider a degree of power in how the treatment course will go, even though that is supposed to be solely up to the patient.
There is the reality that every medical provider has personal biases in how they provide treatment. These biases are based upon their personal exeperiences and their education. They make these choices based upon what they believe will most likely work while being the least likely to cause harm. There is nothing wrong with having these personal preferences. It is this exerience that we are going to them for. But it infleunces what information they provide and what choices they present their patients with. It also infleunces the way that they present the information. If research indicates that two treatment options are equally likely to work, ideally the provider would present them that way. But it is more likely that they would present one as more favorable than the other dur to their personal bias. This again limits personal autonomy because the patient doesn’t know that there is a bias in play and is thus likely to take the provider’s information at face value.
The last part of this power dynamic is that of refusal. When we talk about refusal, it is usually how the patient has the right to refuse to accept treatment. But the reality is that the provider also has the right to refuse to provide treatment if they believe it is too high risk without enough benefit. This is a definite breech of personal autonomy. Yet, it happens all the time. Patients are told that nothing else can be done to manage their case. Surgeons refuse to operate on high risk patients dispite their low quality of life.
So, what does all this ethics stuff mean for us as chronic illness patients? I feel it is helpful to understand what is driving the decision making behind the health care plan. Knowing that there is a power dynamic can help you better navigate that dynamic as a patient. The way that we build relationships with our providers can greatly change the way that we receive care. The first step in that is how we choose providers and how we think about our relationship with them. We need to remeber that they are working for us. If they are not treating us as an equal or helping us work towards our goals, then we need to fire them and find a provider that will. When we are making a decision regarding our health it becomes important for us to do our home work. The more research we do on our condition and the potential treatment options the better equipped we are to navigate these conversations.
Medical providers are not our enemies. I truly believe that the people that go into health care, do so because they want to help people. While they have their biases, limitations and short comings (as all people do) they are our allies. They are also often our only route to healing and wellness. So it is truly essential that we navigate these relationships well.