Improving Communication Between Patients and Oncologists, Part 1: Rethinking Our Roles

 

If you are a sarcoma patient, a physician, or a patient advocate, you know that medical encounters are sometimes frustrating and dissatisfying for those involved.

Communication can go wrong in many ways, both big and small.

This is particularly unfortunate when it happens in encounters between patients and oncologists, as there is so much at stake.

Impact of Communication

Just the other day I read this post by a patient:

"My first oncologist left me feeling confused and stupid. But since I moved to another hospital and another oncologist, I’ve seen such a change. He involves me in decisions and doesn’t give false hope but says “It’s life-extending treatment”. The former one said, “There’s no cure, it’s palliative care.”

For this patient, the way an important message was framed made the difference between their leaving the oncologist’s office with a sense of hopelessness or with the prospect of more time for living.

But it’s not just a question of how a patient feels after an encounter with their oncologist.

Communication impacts other really important things, too, like a patient’s compliance with their treatment, their ability to engage in decision-making, and their quality of life.

What can we learn from the example above? The patient plucked up the courage to move on from a medical relationship that wasn’t working for her. And the new oncologist treated her like a respected partner, encouraging her participation in decision-making and allowing a measure of hope to prevail.

Successful communication surely played a part in this outcome, as did the roles adopted by both patient and oncologist.

I want to look more closely at the roles we adopt and how they can affect patient-oncologist communication. As a patient and patient advocate, I will concentrate here on the patient side. (We need to hear oncologists’ voices, too -- oncologists are cordially invited to share their perspectives in the comments below or contribute their own blog post!)

A Challenging Situation

It is clear that even in the best of circumstances, the medical encounter is laden with built-in challenges: There’s never enough time, the subject matter is highly complex, uncertainties abound, and a range of emotions are in play.

What’s more, the relationship between patient and oncologist is inherently asymmetrical: The medical expert possesses knowledge and institutional power, and the patient does not. In societies with more traditional social hierarchies, this asymmetry between doctor and patient can be even greater.

In addition, the medical encounter is perceived differently by those involved. While seeing a patient is a routine professional activity for the oncologist – it’s one meeting in a long and very busy day -- that is not the case for the patient. For us patients, the oncologist visit is a highly charged event. After all, we are in the unenviable position of being sick and in fear for our life.

Traditionally, a paternalistic model of the doctor-patient relationship prevailed, with clearly defined roles of wise and caring father on the one hand, and obedient child on the other. Information flowed in one direction, from doctor to patient.

This kind of relationship hinders communication and keeps patients from participating fully in consultations with their oncologist. Maybe you have experienced this: you forget the questions you wanted to ask, you’re afraid you will get a negative response, and you even doubt whether you have the right to ask questions. The encounter leaves you feeling “confused and stupid”. Needless to say, this all increases psychological distress.

Of course, it’s easy to reject the old-fashioned paternalistic model of the doctor-patient relationship today. It doesn’t fit our contemporary understanding of the autonomy of the individual. But it still persists. And while the knowledge and power gaps remain real, we patients should remember that we no longer have to accept the role of passive recipient of information and treatment.

Embracing New Roles

The question is: Which roles serve us better?

I’m convinced that we take a big step forward when we reframe our role and see ourselves as the oncologist’s partner in our own care.

In a partnership, doctor and patient communicate as equals and make medical decisions together. Information flows in both directions. The oncologist provides medical information about the disease and treatment options, while the patient shares their experience of the disease, information about their quality of life, as well as their wishes and fears.

How do you make this partnership a reality? It’s important to realize that you, as a patient, are a worthy partner of your oncologist. You are an expert in your own experience of the disease. Besides, you share common goals with your oncologist: Both want the treatment to succeed and the best possible quality of life for you. These shared goals can bridge the knowledge and power gaps and balance out an asymmetrical relationship.

If you enter into communication with your oncologist as a whole, competent person with your own experience and ideas, when big decisions come up, it will be easier for you to access and express your own wishes and participate in decision-making.

Sharing information from your own life will help your oncologist perceive you as a whole person. Common goals such as therapy success and quality of life become more tangible. For example, if you share the information that you are looking forward to a family milestone such as a wedding or graduation ceremony, your oncologist could take that into consideration when scheduling your treatment. Or if you work full time, letting your oncologist know about your work life could help prioritize the management of treatment side effects.

Share your personal story, your courage in dealing with your disease, your plans for the future, your wishes and ideas, what you live for.

It should be added that, as a partner in your own care, you are also responsible for learning as much as you can about the disease and its treatment options. Sure, this kind of information can be incredibly complex and may seem pretty overwhelming at first.  But you can learn new things step by step, and gradually build up your knowledge.

No one chooses the role of sarcoma patient, but every patient can shape it in the best possible way.

We can choose the role of partner in our own care. And a partnership with our oncologist is formed through shared goals and successful communication.

(The second part of this blog post will share practical tips for improving communication with your oncologist.)

• What are the challenges you encounter in communication?
• How do you (as patient or oncologist) see your role?

 

Amy Bruno-Lindner

Photo credit:

Photo by Lucas Guimarães Bueno on Pexels