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 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 told his audience, "Patients deserve the best care. Period."
Dr. Paget emphasized that a good doctor must:
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:
Patients and doctors should use the following guidelines in order to cultivate an effective partnership:
If you are given the doctor’s email address, use it as you wish, but keep the following in mind:
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:
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.
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:
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.
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 nause 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.
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.
A doctor may choose a drug as part of the treatment plan for the following reasons:
Patients may not want to take a medication for the following reasons:
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.
In closing, Dr. Paget offered an example of a situation in which a doctor wants to change a medication regimen:
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.
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."
Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.
Summary completed by Melissa Flores, Masters of Social Work intern and SLE Workshop Coordinator
Edited by Nancy Novick.