Doctor-Patient Communication: An SLE Workshop Support Group summary

Adapted from a presentation at the SLE Workshop on October 28, 2004


Stephen A. Paget, MD, FACP, FACR

Stephen A. Paget, MD, FACP, FACR

Physician-in-Chief Emeritus, Hospital for Special Surgery

  1. Introduction
  2. Doctor/Patient Responsibilities
  3. Partnership and Communication
  4. Advocating for yourself: Addressing the issues
  5. Overcoming Fear and Anxiety
  6. Conclusion

Introduction

It's all about you.
The medical community is working very hard to find a cure for lupus. In the meantime, the doctor-patient relationship is the critical component of ensuring that patients stay healthy and receive optimal care. Patients are the soul of what medicine is about, though it may not always seem this way because of system constraints. Patients often perceive a power differential with their doctors because of their white coats and medical knowledge. However, it's really you, the patients, and not the doctors, who hold all the power.


Doctor/Patient Responsibilities

Just as each individual patient may have a job and a set of accompanying responsibilities, doctors are charged with their own set of responsibilities. The doctors' role is to make your lives better by focusing their medical knowledge on your personal health needs. They do this by opening up the lines of communication through trust and gathering just the right medical and personal facts about you. These facts are then woven into your own personal tapestry, assuring a correct diagnosis and the right treatment plan.

As a patient, you deserve the best care, no matter what. Physicians should treat you the same way they would treat a member of their own families.

Patients and doctors should follow these guidelines to ensure open, effective communication:

Doctor's Responsibilities Patient Responsibilities
  • Keep the doors of communication open to invite trust.
  • Honestly share your feelings with your doctor.
  • Appreciate how patients can experience their doctor's visits to be charged, stressful, and short.
  • Bring a list of your concerns to optimize the time you spend with your doctor.
  • Respect patients, their concerns, and the pressures in their lives.
  • Respect doctors, their concerns, and the pressures in their lives. Inform doctors about complementary medicines and alternative treatment.
  • Offer emotional support to patients and their families.
  • Be honest with your doctor.
  • Be an advocate.
  • Help you doctor to be your advocate.
  • Recognize treatment is a partnership.
  • Accept your important role in this partnership. Follow your doctor's recommendations and tell the doctor when you cannot.
  • Keep up to date on all therapies and concepts about lupus as well as possible side effects of treatment, and recognize the need to communicate these to patients.
  • Read health information and be an informed consumer of medical care. If you have a question, ask your doctor for additional information and literature on the subject.
  • Review medications regularly and try to simplify the regimen while keeping it effective.
  • Know your medications, the dose, reasons for taking them, and potential side effects.
  • Provide patients with education about their condition and treatment in language that patients can understand.
  • Report symptoms as accurately as possible.
  • Assess feedback from patients in order to move to the next step.
  • Give feedback about all aspects of the doctor's care and also about the doctor's staff.
  • Minimize time in the waiting room; too long is unacceptable.
  • Arrive to appointments on time and informed, with a list of particulars that you need addressed.
  • Return calls promptly.
  • Be accurate and assertive when you leave messages. Call back again if your physician does not return them.
  • Appreciate medical and pharmaceutical costs and help minimize them.
  • Communicate with physician if cost will be an obstacle to using any medications.
  • Optimize communication by understanding your patients and their lives.
  • Let the doctor know who you are personally.

Partnership and Communication

The doctor-patient partnership is like any other relationship, in that there must be compromise and understanding on both parts. This helps to build trust, mutual respect, and honest communication between doctors and patients. Through this partnership, doctors should be able to form a complete picture of their patients, both medically and personally. Patients should also be able to get a feel for their doctors' style and approach to care.


Advocating for yourself: Addressing the issues

If your relationship with your physician does not appear to work to your benefit, you should inform your doctor about your dissatisfaction.  There are several positive ways to bring your concerns to your physician's attention:

  • Schedule a face-to-face interaction where you are prepared to clearly and assertively address your concerns.
  • Send an email that speaks to the issues you are facing with the interaction (if you and your doctor communicate through email).
  • Send a fax addressing your concerns.
  • Write and send a traditional letter detailing the issues.
  • Schedule a phone conference with your doctor.

You can use a combination of these suggestions to advocate for your best care. You can feel empowered to challenge your doctor because you, the patient, bear most of the risk in the relationship. A feeling of having ineffective care can compromise the quality of your life - or even your life itself.


Overcoming Fear and Anxiety

You and your doctor should be partners in working together to secure the best quality care for you.  You should not fear your doctor and settle for care that is inconsistent with your medical needs. Patients sometimes report that they do not have a good relationship with their doctors because they feel like they are a burden to them; their doctors are too busy, and they are afraid to challenge the "expert." At the same time, the possibility of needing to change doctors creates a great deal of anxiety. Patients may be fearful of confronting their doctor because they don't want to lose that doctor, even though they may feel they are not receiving optimal care.

Tips for overcoming fear and anxiety:

  • Bring a family member or friend to your appointments so that you may have an ally in the room and not feel like it's you "against" the doctor.
  • Write out your concerns, questions, and expectations before appointments.
  • Practice your approach of addressing your doctor as someone who can give you useful feedback.

Conclusion

Remember, it's all about you. If you feel that you are receiving poor care, you may need to change doctors. Don't compromise your health, or more importantly, your life. Speak up, ask questions, and work hard to create a respectful, open, and honest partnership with your doctors.

SLE Support Program at HSS

Learn more about the SLE Support Program, a free support and education group held monthly at Hospital for Special Surgery.

Summary prepared by Jillian Rose, MSW Intern

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