Nothing about me without me.

 What Matters to Me: Investigations in a Dermatology Practice

By Hope Mendez and David Elpern, M.D.
The Skin Clinic, 12 Meadow St. Williamstown, MA 01267
Corresponding author: David Elpern djelpern@gmail.com

Abstract: We surveyed 125 consecutive patients in a dermatology clinic in rural Massachusetts in the attempt to learn what matters most to them in their interactions with providers and the health care system.

Keywords: patient-doctor communication, patients’ rights

Introduction: We were first made aware of to this subject by a prescient article in the British Medical Journal by Sosena Kebede.¹ When patients see providers they are rarely given the opportunity to communicate what they they want and what they expect to receive. Patients’ busy health care professionals ask a few questions, do an exam, order some tests and prescribe treatment. The question “What matters to you?” is rarely asked. Instead, they are asked, “What’s the matter today?” Yet, asking WMTY would allow patients to disclose their interests, values, and preferences—as autonomous humans, not just as passive recipients of care. This philosophy is not often practiced when patients consult physicians, and it is particularly hard for care providers to follow in consultations lasting 10 to 15 minutes.

With the help of Dr. Kebede, we designed a questionnaire to enable us to learn more about what our patients think about this issue and administered it to 126 patients in a dermatology clinic in western Massachusetts.

Methods: Our questionnaire collected demographic data (age, sex, ethnicity, education and insurance coverage) and addressed five questions related to what matters most to our patients.

1. When interacting with your physicians which qualities do you value the most:
2. My personal responsibility for my health is:
3. Regarding labs or diagnostic tests that my doctor may recommend:
4. Regarding medications that my doctor may prescribe:
5. Regarding my overall healthcare expenses including cost for medications and tests:

The questionnaire can be accessed in Appendix 1 Patients were encouraged to comment on each question; but few did. After we collected 100 usable questionnaires one of us (H.M) sat down with 26 randomly accessioned patients to have them comment about what they thought about the each of the questions.

Results:

The demographics from the Massachusetts clinic can be viewed in the Table. Williamstown is a New England college town and a about half of patients have undergraduate or postgraduate degrees. The clinic also sees a mix of patients with private insurance, Medicare and Medicaid. Ninety-one percent of our patients identified as white.

The data collected showed a wide range of perceptions and opinions about what individual patients hope to experience in their interactions with their physicians and other providers. The responses to the questions can be found in Appendix 2.

Thirteen of the original 100 patients made 41 comments on or about the questionnaire. The remarks of the first 100 patients and the 26 patients interviewed after the first part of the study can be found in Appendix 3.

Examination of our patients’ choices and comments makes it clear that there is a wide range of preferences and concerns. It is difficult, and may be unproductive, to try to quantitate these data. Here are some brief impressions from the 100 consecutive questionnaires.

Top Choices from the Questions:

Question 1: When interacting with physicians what qualities do you value?
Our patients felt that:

• Choice G: Explaining things fully and in the way I understand them. (25/100)
• Choice F: Spending adequate time with me. (21/100)

These were ranked # 1 and 2 most frequently.

Question 2 My personal responsibility for my health is:

• Choice A: Learn as much as I can about my condition and be actively involved in decision making. (47/100)
• Choice B: Exercise, diet, and lead a healthy lifestyle. (41/100)

Question 3 Regarding labs or diagnostics tests that my doctor may recommend:

• Choice A: I only want the absolute critical tests performed. (57/100)
• Choice B: I want all the tests that could be helpful to understand my condition better. (31/100)

Question 4.  Regarding medications that my doctor may prescribe:

• Choice A: I want to know exactly what I’m taking and why. (56/100)

Question 5 Regarding my overall healthcare expenses plus cost for medications and tests:

• Choice B: I want to know what my health insurance covers. (34/100)
• Choice A: I want to know exactly what I’m being charged for. (25/100)
• Choice D: I am willing to spend whatever I need to take care of my health. (25/100)

The comments on the questionnaire can be viewed at Appendix 3.

As an example of one patient’s comments, we have extracted those of patient, # 5, a 56 year-old professional with a post-graduate degree. Her observations do not apply universally to our sample, but give an idea of how a given person has engaged with the questionnaire:

Q.1. Question 1. When interacting with physicians what qualities do you value most?
Patient #5: “I like to be involved in decision making and to be treated as a person. I don’t want to be judged, blamed, or be talked down to. Patients can have a lot of guilt and anxiety that they caused their illness which may or may not be true.”

Question 2. My personal responsibility for my health is:
Patient #5: “I try to lead a healthy life but everybody has their vices. We can’t live in a ziplock bag. My father lead an extremely healthy life and died from cancer. Sometimes stuff happens.”

Question 3. Regarding labs or diagnostics tests that my doctor may order:
Patient #5: “I DO NOT like unnecessary testing because the doctor wants to CYA in case of a lawsuit. I depend on the experience and knowledge of the doc to determine which tests should be done, sometimes I feel like I am being shoved through the system. One size fits all testing. This can make patients VERY anxious.

Question 4. Regarding medications that my doctor may prescribe:
Patient #5 “OK, the side effects of meds can be worse than the benefits. I don’t take anything except Motrin when needed. I prefer natural remedies. However, I will take meds if necessary. My mom is on the BP, A Fib wagon and almost bled to death from daily dose of aspirin.”

Question 5. Regarding my overall healthcare expenses plus costs for medications:
Patient #5: “I don’t mind paying ANY doctor for quality care. I am lucky that I have adequate insurance and have had no major issues. Of course nobody can afford care for major medical issues.”

General Comments:
Patient #5 “Patient centered care is most important to me because I have health anxiety. I believe I have been mis-diagnosed in the past and nobody cares or will say perhaps this was a wrong diagnosis! I like that you are doing this 🙂 IT MATTERS.”

Discussion:

This is a qualitative study. The patients’ answers to the questions are idiosyncratic and they are difficult to tabulate quantitatively. Every patient brings unique wants, needs and expectations to her office visit. Our job, as providers, is to find out what these are and to tailor the visit to serve their unique needs.

As physicians we have a fiduciary responsibility to put our patients wishes above concerns for our financial gain. To do so, we have to know what matters to them. Using a questionnaire such as the one we have developed will help us to shape the therapeutic relationship such that it is more satisfying to those we serve. In so doing, we will also find that our interactions with patients become more fulfilling. Of course, we have to be cognizant that each time an individual consults us, what matters to her may be different. It has been said that when a patient comes in for an appointment, instead of asking her “What is the matter today? we should rather inquire, “What matters to you, today?”

Our data show a wide variation of responses. Some patients seem content to defer to their health care providers while others want to direct their own care. It is difficult to predict what a given patient wants or expects from her physician.   The provider has, in our opinion, an obligation to let his patient know that her wishes regarding the health care she receives are appropriate and important to their providers. This may be a complex dance for some providers, patients, or proxies (parents of children, designated guardians of older patients with judgment problems).

When a patient establishes a relationship with a care provider, there may be a role for utilizing a questionnaire such as the one we have developed early in the therapeutic relationship and an opportunity to revisit it periodically. Too often, we have observed providers recommending procedures, screenings and medications that may not be evidence-based, or in cases where evidence is lacking. There are numerous instances in a fee-for-service health care system where investigations and procedures are recommended tht directly enrich practitioners or clinics at the patients’ expenses. Conversely, it is possible that services that are expensive for an office or a clinic to provide may be withheld. These are sensitive issues and few studies have been done to address this topic.

Our research is in its early stages. For us, we now appreciate the value of asking our patients to let us know “What Matters to Me” and to use their responses to inform the relationship with each patient. Difficult scenarios that we have thought about are:

1. How to deal with patients dependent on, or addicted to narcotics
2. End of life issues (much has been studied about this)
3. Expenses of drugs or procedures that may not be covered by insurance

References:

1. Kebede S. Ask patients “What matters to you?” rather than “What’s the matter?” BMJ 2016; 354