The Doctor-Patient Relationship and Rheumatology Decision-Making: Are You Thinkin' What I'm Thinkin'

Adapted from a presentation at the SLE Workshop at Hospital for Special Surgery


Stephen A. Paget, MD, FACP, FACR

Physician-in-Chief Emeritus, Hospital for Special Surgery

Dr. Paget began his presentation by emphasizing that medicine is all about the patient. The patient may perceive a significant power differential in the doctor-patient relationship and that perception is right - it is truly the patient who holds all the power. Despite the changes in health care due to the Affordable Care Act and health care reform, good medical practice is still based on a one-on-one, doctor-patient relationship. This relationship, like any other, needs to be developed and nurtured to ensure that the patient receives the best quality of care. Dr. Paget told his audience: patients deserve the best care. Period.

The Doctor-Patient Relationship

What is a good doctor?

Dr. Paget emphasized that a good doctor must show concern, empathy, and sensitivity to each patient’s feelings. The doctor must also be able to engender trust and be able to communicate the reasoning behind his or her treatment recommendations. A good doctor is responsible for running an effective and technologically up-to-date office. Moreover, he or she must work well with, and be respected by the staff, and be well-trained in his or her area of expertise. Patients should expect their doctors to be Board Certified and to be recertified as dictated by professional standards to ensure that they are up-to-date in their field.

In addition to treating patients as they would treat their own family members, doctors can maintain a healthy patient-doctor relationship through: an ongoing commitment to care, honest communication, trust and mutual respect, compromise (give-and-take), and a sense of understanding of both the patient’s medical and emotional problems.

Doctor/Patient Responsibilities

Patients and doctors should use the following guidelines in order to cultivate an effective partnership:

Doctor's Responsibilities

Patients's Responsibilities

Keep doors of communication open to invite trust.

Share your feelings honestly.

Respect patients, their concerns, their time, and the pressures in their lives.

Respect doctors, their concerns, their time, and the pressures in their lives; however, realize that you don’t need to accept poor treatment.

Offer emotional support to patients.

Let the doctor know who you are as a person.

Be an advocate for your patient and be fully present.

Help your doctor be your advocate.

Recognize that care is a partnership, like every other relationship.

Accept your important role in the partnership.

Educate patients about their illness and medications.

Have knowledge of your health and be an informed consumer of medical care.

Develop an office environment that is sensitive, supportive, caring, responsive, safe, and private (in compliance with HIPAA).

Maintain an up-to-date, detailed time chart including all pertinent information regarding your health care, beginning with the last time you felt well and ending today (can be written by hand or with a computer program, such as Microsoft Word/Excel).

Keep up-to-date on medical knowledge and patient care.

Know your medications, doses, reasons for taking them, and side effects of the medicines. Be sure to tell your doctor what medications you are currently taking, including all prescription, over-the-counter, health food, and alternative medications.

Review patient medications regularly.

Tell your doctor which medications you have stopped. If not, the doctor may incorrectly believe that you have been taking it and it is not working.

Minimize waiting.

Arrive on time and expect the same from your doctor.

Establish a process for responding to problems, scheduling discussions, and arranging prescription refills. Emergencies should not be handled by email.

Report symptoms accurately and in a timely manner.

Ensure that patients are satisfied with their care.

Give feedback about your care. If you are unhappy with your care, say so!

Have knowledge of the current realities of the health care system as well as policies that affect it, such as the Affordable Care Act. Know what this represents to the patient, their specific illness, and financial state. Help the patient navigate through the complexities of the health care system. Appreciate medical costs and minimize them.

Communicate information about costs of medicines and medical care.

Understand your patient and his or her life.

Inform your doctor about how you feel and whether or not you are taking medications.

Return calls and other communications promptly.

Be accurate and assertive with messages. You define the timeframe in which you need a response, as well as the type of response it should be (e.g., a phone call or email message).

Additional Tips on E-mail Communications:

If you are given the doctor’s email address, use it as you wish, but keep the following in mind:

  • If it is after five o’clock or on the weekend, consider whether the message can wait until the next business day or after the weekend. However, do not be inhibited about using email.
  • If feasible and appropriate, be as short and succinct as possible. The doctor will likely respond faster to shorter e-mails.
  • Don’t trail multiple e-mails below the current one because the doctor will likely photocopy the communication for the patient record.

Advocating for Yourself

If you are unhappy with your care, do not keep it to yourself! You may communicate your concerns with your doctor and his/her staff in several ways, including:

  • Scheduling a face-to-face interaction to discuss your concerns
  • Sending an email
  • Writing a letter to your doctor
  • Sending a fax to your doctor’s office
  • Scheduling a phone conference with your doctor

Relationships can be complicated. If you are not getting the right care, you may need to change doctors to ensure that your care is not compromised.

Overcoming Fear and Anxiety

Because of the patient’s perception of an imbalance of power, he or she may feel afraid to challenge the “expert.” There are ways to overcome such fear and anxiety during an office visit, for example:

  • Bring a friend or family member along as an ally to offer support and to help communicate information. This may be especially useful if you have difficulty remembering things due to memory issues such as “lupus fog.” Your ally may assist by writing notes about the visit.
  • Write all of your concerns out before your appointment, but be aware of possible time constraints.
  • Practice your approach and see if you are comfortable with the person who will be accompanying you.

Remember, if you have expressed concerns about your relationship with your doctor, and feel that they have not been addressed, you can always change doctors.

Medical Decision Making

A Cost-Benefit Analysis

Like most decisions in life, such as those affecting finances or personal desires, medical decisions come down to a cost-benefit analysis. The issue that arises in medical decision making is that patients and doctors value costs and benefits differently, based on their respective experiences.

For example, Plaquenil, methotrexate, steroids, CellCept, and Benlysta, are all effective medications that - when well-monitored - can manage SLE with good results, despite their potential side effects. When making medical decisions, doctors can use their years of experience to formulate an equation and weigh the costs and benefits of using a certain drug.

However, a patient may look up the same drug on the Internet and find that it appears to be toxic, resulting in anxiety about their treatment. These feelings should be brought up with the doctor to enable an open discussion of the cost and benefits as perceived by the patient.

A Doctor’s Perspective

From the doctor’s perspective, looking at the most common medications used to treat lupus on a continuum, the strongest drugs used to treat inflammation also have the strongest potential for side effects. Doctors and patients often have differing opinions about the cost and benefit of a particular drug; these differences need to be discussed in order to address the identified needs of the patient.

Dr. Paget shared his personal method of making treatment recommendations: he strives to achieve the best balance between cost and benefit. However, he always discusses these recommendations with his patients, who bring their life experiences to the equation. If a patient disagrees with a medication recommendation, the doctor must be prepared to identify another option. Ultimately, the doctor is charged with finding an alternative that will bring the patient’s issue under control with the least amount of side effects and costs.

What I’m Thinkin’ vs. What You’re Thinkin’ about a Medication

A doctor may choose a drug as part of the treatment plan for the following reasons:

  • The drug may work quickly and effectively.
  • According to the doctor, the cost-benefit balance is acceptable.
  • Randomized, controlled studies have shown the drug to be effective and safe.
  • Long-term surveillance has shown promising effects. 
  • A milder, currently used medication is not working.

Patients may not want to take a medication for the following reasons:

  • Their own experience or their family’s experiences.
  • They fear the medication more than the illness.
  • They have heard about negative responses to the medication from other patients.
  • They may be frightened by a television ad about the drug that highlighted associated toxicities, risks, and infections.
  • The drug has not been out long enough to know the true side effect profile with “real world” use versus results seen in studies.

Final Decision Making

Ultimately, the final decision-making process goes back to the doctor-patient partnership. The patient and the doctor should share their perspectives on the drug regimen and illness, and communicate their concerns and all information needed to make an informed decision. The physician should give the patient educational reading material, and the patient should do his or her own research. In the end, it is a cost-benefit decision. The way that doctors and patients value the costs and benefits of a given treatment may differ from one another - however, the final decision is the patient’s. If the patient is having difficulty making a decision, Dr. Paget advises trying to think of which choice is a greater negative - the treatment or the problem for which it is given.

To help with the decision-making process, some doctors give their patients the contact information of another patient (who has granted their consent for this purpose) who has been through a similar experience. Patients may find this to be an effective way to overcome barriers and fears. Lastly, a second opinion by another doctor may be beneficial.

An Example

In closing, Dr. Paget offered an example of a situation in which a doctor wants to change a medication regimen from steroids, methotrexate and Plaquenil to Plaquenil, mycophenolate, and taper steroids! Why?

In this case, through clinical examination, the doctor finds that the current medication regimen is not working to stop inflammation and improve function. The current medication has also led to difficult to tolerate side effects. A new medication with fewer side effects has been approved by the FDA and would benefit the patient. The patient must stop taking the steroids because of cumulative side effects and instead start using the steroid-sparing, disease-controlling medication as an alternative.

Conclusion

At the center of the patient-doctor relationship and medical decision-making is a respectful, healthy, open, and honest partnership between patient and doctor. Open communication is key, according to Dr. Paget, who urged his listeners: Don’t be afraid to speak up! Remember, medicine is all about you and your care should be the best care.


Summary completed by Melissa Flores, Masters of Social Work intern and SLE Workshop Coordinator

Edited by Nancy Novick.

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