The Angry Type 2 Diabetic: What Patients Want From Their Clinicians...

Thursday, October 11, 2012

What Patients Want From Their Clinicians...

I think a lot about patients' rights, and expectations; about what the most ideal medical care should look like for a person with diabetes. I've often thought of putting together a post regarding these thoughts, but I never quite had a catalyst to really help me organize together all the elements.

The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'

When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:

To Be Afforded Humanity... With:

  • Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
  • Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
  • Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal. 
  • Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them! 

To Be Afforded Effective Communication... With:  

  • Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
  • Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts. 
  • Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
  • The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.] 

To Be Afforded Quality Care... With: 

  • Continuous Education:  As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
  • Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
  • Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems. 
  • Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you. 

For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations. 


  1. I think we should all print this out and leave copies in our physicians waiting rooms across the country! And then do it over and over again!

  2. Powerfully stated. I'll be sharing this widely.

  3. I'm printing this out and giving it to my Dr. along with the comment that she fits all the explanations of "What Patients Want From Their Clinicians". I have a wonderful, caring Dr. who is always ready to listen to my concerns about my treatment, and, most importantly, doesn't rush me through my appointment. She really listens and explains her thoughts on my concerns. If she disagrees with my conern, she explains why. If she agrees, she says she'll look into and get back to me, which she also does. I wish everyone could have such a caring Dr..

  4. I'm sitting here in tears because I'm on the 4/5 cusp of chronic kidney disease - someone on the brink of dialysis. I am so angry at my family doctor, I'm ready to SUE! He would read my lab results and mention that I was losing a lot of protein. Unfortunately he never told me what that indicated so I went on for 3 years before he recommended I see a nephrologist. So I did. They gave a course for chronic kidney disease patients. Afterward we were taken to visit the dialysis center. A huge room with huge machines and some of the most lifeless people I have ever seen. No windows - just a huge green box. So nice to know we could do this at home - in our sleep (is there anybody out there who can get to sleep?). Then I got information from a woman who calls herself a renal dietician. According to her, .5 cup of rice has just 3 grams of protein. According to the Minute Rice box, .5 of a cup contains 5 grams. According to the USDA National Agricultural website, a .5 of a cup contains 2.3 grams of protein. AARRGGHH! I just want to scream. Counting protein grams is vital to a chronic kidney disease (CKD) patient. In my case, I get up to 45 grams of protein a day. Do you have a scale at home that measures in GRAMS??!! Do you have a publication that lists such information?? In any case, I don't want "this has X grams of protein and that has X number of grams." And I don't want recipes - I WANT MENUS!! You'd think that by this time RDs would have such a thing and would furnish it to CKD patients. And limiting liquid intake - I'll not be eating any grapes because of that. And limiting potassium intake - I'll not be eating any more bananas either. They say that if you arrive at the point of having to go on dialysis and you don't do it that the resultant death is peaceful. But I'm a Catholic and we don't commit suicide, not because we're not capable of it but because we'll go straight to hell. Don't know what difference there is between that and living with CKD.

    1. Dear Anonymous, thank you so much for sharing your story... and your frustration. I think as a diabetic I share a similar frustration with nutrition labels, especially with carbohydrate counts. Some diabetics, for example, have to take insulin, and need to dose insulin to exactly the amount of carbohydrates they consume... and make these math calculations based on that. Often, folks use something called 'carb factors' to help them deal with the math (which could probably be applied to proteins, I guess)... and yes, there are scales that measure in grams, but they are pricey -- mine was like $30. And those nutrition labels, the USDA allows them to be off by at least 20-30%! That's right... labels can be off by that much. :( It's really difficult to manage health conditions under such inaccuracy burdens. Recipes are often a nightmare, too... and many diabetics end up taking 'scientifically wild ass guesses' on what they eat... which often backfire significantly.

      It would definitely be nice if there were more intuitive options for patients with less 'patience' or aptitude for some methods. I'm not such a great math guru, you know. :)