All Conditions & Treatments

Doctor-Patient Communication: Guidelines and Best Practices

Adapted from a presentation at the SLE Workshop and Myositis Support Group

Dr. Stephen Paget emphasizes 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 healthcare due to the Affordable Care Act and healthcare 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 believes "Patients deserve the best care. Period."

What makes a good doctor?

Dr. Paget emphasized that a good doctor must:

  • Show concern, empathy and sensitivity to each patient’s feelings.
  • Engender trust and be able to communicate the reasoning behind his or her treatment recommendations.
  • Run an effective and technologically up-to-date office.
  • Work well with and be respected by the medical office staff.
  • Be well trained in his or her area of expertise.

Patients should expect their doctors to be board certified and continually 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).
  • A sense of understanding of both the patient’s medical and emotional problems.

Doctor's vs. patient's responsibilities

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

Doctor's responsibilities

  • Keep doors of communication open to invite trust.
  • Respect patients, their concerns, their time, and the pressures in their lives.
  • Offer emotional support to patients.
  • Be an advocate for your patient, and be fully present.
  • Recognize that, like every other relationship, care is a partnership.
  • Educate patients about their illness and medications.
  • Develop an office environment that is sensitive, supportive, caring, responsive, safe and private (in compliance with HIPAA).
  • Keep up to date on medical knowledge and patient care.
  • Review patient medications regularly.
  • Minimize patient wait times.
  • Establish a process for responding to problems, scheduling discussions and arranging prescription refills. Emergencies should not be handled by email.
  • Ensure that patients are satisfied with their care.
  • Have knowledge of the current realities of the healthcare system, as well as policies that affect it, such as the Affordable Care Act. Know what this represents to the patient, and to his or her specific illness and financial situation. Help the patient navigate through the complexities of the healthcare system. Appreciate medical costs and minimize them.
  • Understand your patient and his or her life.
  • Return calls and other communications promptly.

Patient's responsibilities

  • Share your feelings honestly.
  • Respect doctors, their concerns, their time and the pressures in their lives. However, realize that you don’t need to accept poor treatment.
  • Let the doctor know who you are as a person.
  • Help your doctor be your advocate.
  • Accept your important role in the partnership.
  • Have knowledge of your health and be an informed consumer of medical care.
  • Maintain an up-to-date, detailed time chart, including all pertinent information regarding your healthcare, beginning with the last time you felt well and ending today. This can be written by hand, typed into a computer file (such as a Microsoft Word or Excel document) or maintained using an app on your mobile phone or tablet. HSS offers the free LupusMinder® mobile app, designed by and for lupus patients to track symptoms, medications and physician appointments.
  • Know your medications, doses, reasons for taking them, and associated side effects. Be sure to tell your doctor which medications you are currently taking, including all prescriptions, over-the-counter medicines, health foods and supplements or alternative medications.
  • Tell your doctor which medications you have stopped. If you do not, the doctor may incorrectly believe that you have been taking it, and that it is not working.
  • Arrive on time and expect the same from your doctor.
  • Report symptoms accurately and in a timely manner.
  • Give feedback about your care. If you are unhappy with your care, say so!
  • Communicate information about costs of medicines and medical care.
  • Be accurate and assertive with messages. You should specify the timeframe in which you need a response, as well as the type of response it should be (such as a phone call or email message).
 

Additional tips on email 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 brief and succinct as possible. The doctor will likely respond faster to shorter emails.
  • Don’t trail multiple emails 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. Patients are consumers. You or your insurance is paying for a service. You are entitled to good service. It can be frustrating if you feel doctors are doing you a favor by seeing you - but that can happen if the doctor is very busy. You may be reluctant to ask questions. But if you don't, then you may not get all the information you need. It is up to you to ask for good service. But that may take some assertiveness. If you are not satisfied with your care - after trying to improve communications over several visits - it may be time to find a new doctor.

To start a relationship with a doctor, treat it like any other relationship. You want to find out what the other person is like, and you want him or her to know you. You need to think about how to let the doctor know:

  • Who you are as a person
  • What your values are in relation to health care
  • How the disease has affected your life and changed you
  • How your needs are different from other people with the same disease.

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 appropriate 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 out all of your concerns before your appointment, but be aware of possible time constraints.
  • Practice your approach to be sure 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 those concerns 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. (In this regard, the "costs" and "benefits" of medical treatment options are not financial, but physical and emotional. For example, a medication may offer a benefit in the form of reduced inflammation, but also have a cost, such as an unwelcome side effect (such as nausea or loss of appetite.) A key issue that arises when making decisions about medical treatments is that patients and doctors value those 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 lupus 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.

Patient vs. doctor perspective on 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 only in studies.

Doctor-patient partnership: 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 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 to 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."

Support Programs at HSS

Hospital for Special Surgery offers free support and education groups held monthly.

Summary prepared by Jillian Rose, Angela Hunter and Diana Benzaia.

Authors

Stephen A. Paget, MD, FACP, FACR
Physician-in-Chief Emeritus, Hospital for Special Surgery
Stephen A. Paget Rheumatology Leadership Chair

Barbara Mazie, PhD 
Medical Educator and Consultant

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