What Do Patients Wish Their Doctors Knew?

For the better part of the 21st century, researchers from academia and the pharmaceutical industry have observed, recorded, and attempted to influence the physician-patient power dynamic.  As one such study revealed in 2001, both physicians and patients have “power”; but differences in “in-office priorities” – physicians’ focus on efficiency and patients’ on self-advocacy – result in missed opportunities for improved health outcomes.

As my colleague, Richard Tsai wrote in Embracing The Patient-Centric Culture, “The challenge for healthcare organizations, be they government or private, is to elevate the perspectives of patients and caregivers, incorporating their needs and priorities into the strategies they build.”  Given this patient-centric paradigm shift, Inspire asked our members, “What do you wish your doctor knew?”.  Over the course of one week, we received nearly seven hundred responses.  The respondents provide a glimpse into the unspoken and unmet needs of patients in the physician-patient relationship.

Insights Into What Patients Want To Say, But Dont

Nearly one-third of patients wished their doctor had a true sense of empathy for their condition.  Their responses focused on the impact of their condition on their everyday life, and as such, wanted their doctor to understand what they go through each day.  While their outward appearance does not always match how they feel, most wanted a certain level of appreciation for their symptoms.  Others went as far as to wish their doctor could walk the proverbial “mile in their shoes,” believing this would get them better treatments, faster.

In the words of one 22-year-old woman with cirrhosis from celiac disease:

“I wish he [my doctor] knew that I want to be the best mom I can.  I wanna be the home room mom at school and help coach soccer and run and jump around with my sons.  I wanna be the main provider for my kids….  I’m not proud of having government assistance or having to apply for SSI [Supplemental Security Income] to get by so please don’t treat me like I’m another scrub not wanting to work and feeling sorry for myself.  My diagnoses has not only affected me financially but at home too my 6 year old doesn’t see hurts or cuts so he thinks I’m fine and tells me to quit being lazy–it breaks my heart I’m viewed as a lazy person not wanting to support my kids but I am just because you don’t see my hurts and cuts don’t mean on the inside I’m not dying.  My insides bleed randomly, I get ulcers a lot, and I’m flat out in pain all the time.  My immune system is shot so I get sick more often than not.  I’m tired of being home in pain I WANT to work and I want my life back.  I used to be a good mom and I still am but I can see my disease tearing what I love and who I was away.  I may never be ME again if I get a transplant but I could be closer and I do have hope but judging me or telling me what I can and cannot do doesn’t make my body able to do it.”

Patients also prioritized the manner of physician-patient interaction.  In fact, whether their current doctor’s bedside manner was good or bad, 20% of responders indicated that physician interaction greatly influenced how they feel coming out of an appointment.  When physicians aren’t cognizant of how they say certain things, patients and caregivers are left facing harsh realities on their own.  One person said:

“I wish my loved one’s oncologist knew that every time he tells us a good test result and then says ‘but we all know where this is headed’ he is sucking the joy out of small victories and the time we have left together. PLEASE get over thinking you may somehow give us false hope if you allow a positive thought out of your mouth. We need you to be in our corner.”

Conversely, some patients noted that their physicians are tremendous allies and keep them going through everything they are facing,

“I wish my doctor knew how I can never repay him for saving my life.  For starting treatment ASAP considering other issues had to be resolved before I could start.  Thank you for always being available and giving me test results the next day.  I trust you completely.  I know you truly care about me and have concern for my treatment and my side effects.  I am truly blessed.  Thank you”

As far as the power dynamic between the two parties, some patients explicitly considered physicians as vital partners in their healthcare.  But to have a good doctor, one who is empathetic and supportive, requires patients to uphold their end when it comes to healthcare:

“A doctor-patient relationship takes TWO (or more!)  If you want a GOOD DOCTOR, start by being a GOOD PATIENT.  I won’t define what I mean by being a GOOD PATIENT now, as this is the wrong forum.  However, as patients, we’re EQUALLY responsible for the quality of our relationships with our care providers as they are.

Respondents also expressed a desire for doctors to recognize and accept the information patients have amassed regarding their conditions and treatments.  Patients often shared the sentiment of this 66-year-old woman with pulmonary fibrosis that they are being undervalued in the assessment of their health conditions.  “I wish my doctor knew I have things to contribute to the conversation about my illness,” she said.

In the healthcare information age, patients have widespread access to high-quality information and should be viewed as proactive and engaged when it comes to healthcare management; however, many respondents reported resistance, even disdain from their physicians when bringing information they’ve found to appointments.

“I wish my doctor knew that just because I’ve Googled my condition and/or symptoms does not mean I think I know more than they do.  There is no need for the annoyance – patients should not be made to feel like ungrateful children for having the nerve to educate themselves.”

Dismissive physicians can create hostility in their relationships with patients that can result in drastic actions like patients seeking out other treating physicians.

Respondents also listed a number of tangible elements they wish to receive from their doctor, including:

  •      More information (20%)
  •      Emotional and mental support (13%)
  •      More time (9%)
  •      Alternative medicines (6%)
  •      A cure (4%)
  •      Financial/insurance assistance (4%)
  •      Better treatments (2%)
  •      13 other items ranging from better penmanship to a nicer office staff (1% each)

A Balanced Relationship

In summary, patient respondents felt that physicians need to be more empathetic.  Patients want their physicians to listen and respect them.  Patients want physicians to do more, while making interactions with their patients more constructive and supportive.

But many patients feel they can be better partners in these relationships, for example, by not minimizing their symptoms.  Or, when presenting information they have found on the internet to their physicians, patients can give their doctors more time to review and objectively react to this research.

By sharing unspoken and unmet needs, patients are changing the balance of the physician-patient relationship.  Reaching the goal of improved health outcomes means an evolution in the power dynamic and a more patient-centric healthcare experience.

See our eBook “Untangling the Mixed Messages of the NICU: Parents’ Perspectives”

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1 Goodyear-Smith, F., Buetow, S. “Power issues in the doctor-patient relationship.” Health Care Analysis, 2001;9(4):449-62.