Chronic Illness and the Doctor-Patient Relationship
Learn how to evaluate and maximize this crucial relationship.
Posted January 14, 2020
In my work with people who live with chronic illness, I hear a lot about doctor/patient relationships. I hear about the doctors who return calls promptly, problem-solve collaboratively, and empathize with their patients’ pain. Unfortunately, I also hear about doctors who dismiss their patients’ suffering as “all in their head,” treat their patients like a burden, and bark out orders for tests and medications without explanation.
A good patient/physician relationship is essential in a chronic illness treatment plan. What should you insist upon in your relationship with your doctor? What is your role in creating and maintaining positive interactions with your doctor? Can you fire your doctor? (Spoiler alert: You can.) This blog post explores these questions.
Is My Doctor Skilled?
Look for board certification, affiliation with highly-rated hospitals, and positive word-of-mouth reviews. Also, educate yourself on your disease by joining organizations that offer education and support. Ask for reading materials, follow the organization on social media, and attend educational events. You want to understand treatment options well enough so that you can gauge whether your physician is following accepted protocol and keeping current on new developments.
Is My Doctor Invested in My Care?
In today’s managed care era, it can be challenging to assess whether your physician is invested in you as a person living with a chronic illness. Many patients report feeling as if there is too little time to talk with their doctors; consequently, they fear that their doctors find them burdensome if they ask too many questions or require too much attention (Henselmans, et al., 2014). Dangerously, they may opt to ride out symptoms by themselves rather than face the shame and rejection they feel from interaction with their doctor (Lim, et al., 2017).
One way to assess whether your doctor is invested in your care is to ask yourself how easily and how effectively you communicate with them. When you meet in the office, is there sufficient time to review symptoms and make treatment decisions? Does your doctor seem interested in and responsive to the information that you are bringing into the office? Does your doctor see you as a whole person or simply as a body that is broken?
It’s important to note that physicians cannot meet all of the emotional needs that accompany chronic illness. There’s no question that patients have an “emotional and psychological experience of chronic illness” (Campbell & McGauley, 2005). A good physician acknowledges and understands this but is not trained to meet those needs. Many physicians refer patients to mental health professionals who work with chronic illness. This is not a dismissal or a lack of caring; rather, it’s a belief that partnering with mental health specialists can improve patient well-being.
Can I Reach My Doctor Between Appointments?
A good doctor has an excellent staff who is responsive to patient communication. Many offices use patient portals, in which protected email communications are answered promptly. Some offices prefer telephone messages, picked up several times a day. Living with a chronic illness means living with the constant fear that things can go very wrong very quickly. The anxiety associated with carrying this fear can be allayed by the certainty that your physician will be available and present to you when you are in distress (Jimenez, 2017). If you roll the dice every time you call your doctor’s office and have no idea whether or when you’ll receive a return call, you probably need to think about finding a new physician.
How Can I Participate in My Own Care?
It’s essential that those of us living with chronic illness participate in our own care (Campbell & McGauley, 2005). We make multiple decisions a day that affect our well-being, from diet to stress management to exercise to medication compliance. These daily decisions can have a large impact on our health. Doctors can advise us to best steps, but they can’t force us to implement them. A pattern I often see enacted between physician and patient is a breakdown in care implementation, causing high levels of frustration for both parties.
Sometimes patient compliance breaks down because the patient does not truly buy into the treatment plan. The unpleasant side effects of certain medications, for example, may outweigh the perceived benefit of taking those medications. Additionally, there may exist barriers to meeting expectations. For example, a person instructed to exercise may be so fatigued that she does not know how she possibly can make that happen. Finally, there may be underlying psychological issues that inhibit medical compliance: perhaps a patient routinely self-sabotages or expresses her painful feelings through lack of care for her body. All of these are issues that can and should be addressed.
As a patient, it’s important to notice when you’re not complying with your doctor’s recommendations. Do not judge or berate yourself; simply be curious. What is getting in the way of following your treatment plan? Once you have an idea of what’s happening, talk with your doctor about what you’re seeing. You may have to be firm that this is something you need to address together.
For example, if medication side effects are bothersome, your doctor needs to understand that they are affecting your willingness to comply with treatment. Are there ways to mitigate these side effects? Is there a different medication available? If barriers to health seem insurmountable, ask your doctor for resources. Are there exercise trainers skilled in working low-energy, high-pain patients? Are there dietitians who could help you put together an appropriate food plan? If you’re feeling that you’re struggling to care for yourself due to psychological issues, ask your doctor for a referral to a mental health care professional.
Getting Your Needs Met
Many people come to therapy seeking help with relationships that are giving them trouble. Therapists work with people seeking stronger marriages, more harmonious parenting, and deeper friendships. If you live with chronic illness, you also may come to therapy seeking help for the relationship you have with your doctor.
A therapist can help you sort out and understand the feelings you have toward your physician. How does she meet your needs, and how does she leave you disappointed? What can you reasonably expect from her, and why might you actually be expecting more (or less)? Does your relationship with your doctor echo other relationships in your life? Too many chronically ill people underestimate the importance of the physician/patient relationship. Chronic illness is hard enough. If you do not feel supported and cared for by your physician, it’s time to reflect on why that might be and what you can do about it.
What is your relationship with your physician like? What do you value and what do you wish were different?
Campbell, C. & McGauley, G. (2005). Doctor-patient relationship in chronic illness: insights from forensic psychiatry. BMJ, 330, 667-670.
Henselmans, I., Heijmans, M., Rademakers, J., & van Dulmen, S. (2014). Participation of chronic patients in medical consultations: patients' perceived efficacy, barriers and interest in support. Health Expectations, 18, 2375-2388.
Jimenez, X.F. (2016). Attachment in medical care: A review of the interpersonal model in chronic disease management. Chronic Illness, 13(1), 14-27.
Lim, C., Berry, A., Hirsch, T., Hartzler, A. L., Wagner, E. H., Ludman, E., & Ralston, J. D. (2016). "It just seems outside my health": How patients with chronic conditions perceive communication boundaries with providers. DIS. Designing Interactive Systems (Conference), 2016, 1172–1184. doi:10.1145/2901790.2901866