Ethics Consult: Self-Determination in Medical Care

Dear Ethics Consult,

What are my responsibilities if a client is planning to let themself die instead of having a potentially life-saving surgery—but is otherwise continuing to comply with medical recommendations and attend all medical appointments?

Sincerely,

What’s My Role?

What’s a Clinician’s Responsibility When a Client Refuses Life-Saving Care?

Dear What’s My Role, 

When a client suffering with a life threatening health condition turns down a potentially life saving surgery, we as clinicians will have our own internal reactions and beliefs about the client’s choice. In these circumstances, it’s highly possible that various emotions will emerge for us, and countertransference can be present. 

Your values and your clients’ values may or may not align. Understandably, you may then have to wrestle with difficult questions that may arise in regard to duty, responsibility, ethics and legal obligations.

So, where do we start when navigating a case like this?

We need to understand whether it’s our responsibility to uphold the ethic of self-determination.

What Is Self-Determination?

As with all effective and ethical therapy modalities, we have to take a client-centered approach. Prioritizing empathic understanding, humility, curiosity, and exploration of our client’s perspective is imperative. 

There could be a variety of factors behind a decision as significant as declining a life-saving surgery. The client’s reasoning may be a personal, religious, or cultural belief. 

It may be the desire to live out the rest of their lives as fully as possible, choosing not to interrupt that precious time with a painful or invasive procedure. 

Alternatively, it could be related to a fear reaction, an avoidance behavior, a response to past traumatic experiences, or hopelessness leading to suicidal ideation. 

We have to make sure we fully understand our client’s “why.” Only then will we be able to guide the next steps of our clinical intervention.

To start, in order to learn your client’s “why,” you can try a tactic like motivational interviewing. It’s supportive, client-centered and can help both us and our client gain clarity on the reason for their decision. 

There are cases where it’s ethical for us to work on helping the client overcome their barriers and pursue the procedure, if we thoroughly assess and determine it does align with their deeper goals. If we start to discern change in the client’s responses, then we can follow their lead. 

For example, if we hear that the client is afraid of the procedure, then we can begin processing and working on those fears with them. 

We may also hear the client open up about hopelessness and suicidal ideation. In their example, we may begin to discuss protective factors, future orientation, and safety planning. 

However, if we ultimately determine that our client has a strong conviction and no desire to change their mind, then we can know that our responsibility is to uphold the ethic of self-determination. We can reflect this certainty back to the client and, if necessary, help them work on acceptance of the implications. 

Whatever the case, once we know their “why,” we can dig into our clinical toolbox and work from there.

Our Duty to Protect

On the opposite side of self-determination, you might consider your responsibility to prevent your client from harm. It may appear that, under all circumstances, a decision to refuse life-saving medical treatment is a suicidal behavior. 

The challenge with this perspective, however, is that nearly all mandates to intervene for a client’s safety relate to imminent harm. 

We are required to take more restrictive measures when the threat to a client’s life is active and present in the current moment. It’s difficult to see that criteria being met in a longer term decision about health. 

If we were to intervene on these grounds, then we would also have to start applying the same logic with any client who refuses to stop drinking or smoking—even if it was recommended by their doctor to prevent eventual death.

We may also be considering a client who is cognitively incapable to understand and make safe decisions for themselves. Intervention may be determined necessary if a person is deemed mentally incapacitated and unable to understand the nature of what they are deciding for themselves. 

However, there would need to be extensive evaluation and a significant process before it’s decided that someone is incompetent to make decisions about their own health.

Seeking Support and Consultation

As always, ethical dilemmas like this one are hard. In any situation where you feel uncertain or where our responsibilities feel unclear, speaking with another clinician or a supervisor is an excellent route to take. 

These conversations can sharpen your clinical knowledge, give you direction, and reveal vantage points you may not have previously seen. 

It’s also worth noting that when we have these conversations about a difficult case and then document those conservations, we gain the added benefit of mitigating our liability and protecting our clinical license. 

While this may seem callous in the face of your client’s dilemma, it’s still an important factor to consider for the longevity of your practice. 

Regulating Our Own Reactions

In the majority of cases, when a client chooses to forgo a life saving procedure, we must support their self-determination. 

In addition to providing an intervention based on their self-determined objectives and doing our ethical due diligence, it’s our responsibility to manage our own biases and emotions. This can be difficult, since we care about our client, have a relationship with them, and may believe we can objectively see what is best for them. 

It can be challenging to accept the decisions of our clients that may go against our values or our vision of wellness for them. 

In these situations, we have to be mindful to identify, name, and regulate our internal responses to prevent them from impacting our interactions with our client. 

The tools of radical acceptance and emotion regulation we often teach our clients can be our own supports in these cases as well. If we can hold onto the clinical pillars of being client-centered, vigilant, and self aware, we will be able to move forward in an ethical direction. 

Best wishes,

Ryan DeCook, LCSW

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