Wednesday, August 17, 2016

Patient-centered care? Not for this patient . . . and not for how many more?

Although I didn’t know Jess Jacobs, a young woman who tragically died on Monday after suffering for years from two rare diseases, I have learned much about her from her blogs  detailing her encounters with the healthcare system.

I have learned that she suffered greatly from her conditions, postural orthostatic tachycardia syndrome (POTS), an autonomic disorder, and from Ehlers-Danlos Syndrome (EDS), a rare hereditary disease of connective tissue. 

I learned that her suffering was unnecessarily compounded by a health care system that, by her own detailed reports, failed her at every point.

On February 14, 2014, she wrote of her frustrations over receiving the following letter from her primary care physician:

Hi Jess,

POTS is a rare diagnosis, and I am by no means a specialist in the treatment of it. I cannot comment on whether treatment with opioids is the best route or not. My only suggestion was that it might be prudent to see another POTS specialist for an opinion. It might also turn out to be helpful to see the Rheumatologist and Neurologist to see if they have any thoughts or ideas.

I know this is beyond frustrating for you, feeling poorly and not having any therapies pan-out with respect to making you feel better. There are no clear answers when it comes to POTS.

Best wishes,

Primary Care Physician

Jess’s reply, excerpted below, takes the doctor on for “surrendering” rather than trying to coordinate her care:

The majority of my friends are allied with the healthcare field – doctors, health lawyers, nurses, health administrators – and all ask “who’s coordinating all of this?” to which I say I am and then they all stress about who is going to take over when I start puking and can’t get off the floor on my own.

I’m not sure where they got the notion that my primary care physician should coordinate my care, maybe they were looking at NCQA’s patient centered medical homes model, or found a copy of the Accountable Care Organization regulations from CMS, or listened to people discuss Obamacare on Late Night with Jimmy Fallon. All I know is that they all say that a PCP is the person to coordinate care.

In my search to figure out what this actually means, a physician friend turned me onto Vernon Wilson’s 1969 article entitled “Prototype of a Doctor.” Wilson postulates that as a continuing medical advocate for their patient, a PCP’s job is to evaluate and coordinate patient care and “accept responsibility not merely pass it along – utiliz[ing] specialists rather than surrendering to them.”

By telling me that my condition is complex and stating that I should just see additional specialists, you are surrendering. . . So, this leads me to ask: If you are not willing and able to help me, who in your practice is?



On November 15, 2014, she added up all of the encounters she had with the health care system to date--“56 outpatient doctor visits, 20 emergency room visits, and spent 54 days inpatient”--and how many of these visits were actually useful to her.  I encourage readers of this blog to read her detailed tables. She particularly felt that her visits with her primary care physician were the least valuable:

The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.

Some of these specialties were overly impacted by the amount of time it takes to schedule visits. For instance, hematology took six months and over four hours of my life to schedule one visit; however, the time spent with the doctor herself is quite valuable. Conversely, Ophthalmology and Endocrinology were scheduled using a third party platform so the scheduling process was very smooth, but using the third party platform led to billing issues. If I accounted for the time-value of money, the numbers would shift a bit.

On May 31 of last year, she wrote about a hospital stay that she called  “the most profoundly heartbreaking experience of my life”—not just for her, but for the patient that shared the room with her, excerpted below:

. . . when I answer people asking ‘What is the worst healthcare experience of your life?’ - that honor belongs to the 48 hours I spent housed in an on-call room last November.
November’s stay made me appreciate my cellphone in ways that you should not have to appreciate your phone while inpatient at a hospital. Here my phone wasn’t my connection to the outside world - it was how I connected the dots within. It enabled me to contact five of my physicians, all of whom are attending physicians at your institution, when my resident was unable to do so. When the resident insinuated I had not established care with hematology, I was able to call the hematology department and connect my hematologist to the resident in under 15 minutes. At the time of admission, I had given this resident a typed list of my specialists which included the same contact information I used successfully; as such I find it difficult to believe the resident attempted to verify I was an existing patient.

When the nurses couldn't hear the physical bells my roommate and I were given, I resorted to calling the nursing station on my cellphone (Ironically, courtesy of the speaker in the wall of our on-call room, we heard nurse requests from all the other patients on the floor). My roommate did not have a cellphone and I ended up relaying her requests by calling the nurses station each time my roommate rang her physical bell. As such, I didn't sleep the entire time we were in this closet.

However, these communications issues are simply annoyances in comparison to the emotional torture of a fellow human experiencing unrelenting pain.

My roommate, admitted for a Sickle Cell crisis, cried hysterically for over 12 hours while her pain remained unmanaged. During this time I called and emailed the patient advocate several times on my roommate’s behalf and ‘rang’ the nurse countless times.  Eventually my roommate’s attending came to see her. Unfortunately her physician was “Dr. Feelgood.” I had the misfortune of being this physician’s patient in July. I nicknamed him “Dr. Feelgood” for stopping my pain regimen (developed by a pain specialist) and insisting yoga (contraindicated with my joint condition) would magically fix all my problems. True to form, Dr. Feelgood insisted my roommate's issues related to positive thinking and refused to revert to a pain regimen that had apparently worked before. I’m not a physician and have no idea what pain medications this girl should have been on. But as a human I know that “Tears = Bad” and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn't faking it. She didn’t stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.”

Reading Jess’ posts brings me to tears. How can anyone who has empathy not be?
But feeling bad for Jess, her roommate, and the many other patients who are failed by our health care system is not enough.  We who make our livings as advocates for primary care and Patient-Centered Medical Homes must acknowledge the chasm between the principles  we articulate, and Jess’ experience. 

Where in Jess's experience was the “ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care” ?

Where was the “personal physician [who] leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients” ?  

Where was the “Whole person orientation – the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care”? 

Where was the “Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community based services)”? 

Where was the advocacy “for their patients to support the attainment of optimal, patient-centered outcomes that are defined by a care-planning process driven by a compassionate, robust partnership between physicians, patients, and the patient’s family”?

Federal policymakers must also acknowledge and address the gap between Jess’ experience and the kind of care they would want for themselves and their families, and how their own regulations and flawed policies may contribute, as Acting CMS Administrator Andy Slavitt did in tweeting about Jess.  Hospital administrators need to acknowledge and address how their institutions are failing patients like Jess. 

And physicians, nurses, pharmacists and other health care professionals must acknowledge and address the fact that Jess, like so many other patients including those with more common diseases—have been failed by a system that doesn’t put patients first.  While I believe that most health professionals care deeply about their patients, and try to do the best they can, many of them would say that they are stymied by a “system” that devalues patients’ experiences with the care received.  But blaming the system isn’t enough: the medical profession has an obligation to do everything it can not to surrender their patients to a system that doesn’t seem to care about them, and to advocate for reforms to truly put patients at the center of the health care system.

Most importantly, we need to listen to patients, including those like Jess who now speak to us from the grave.

Today’s question: What do you think of Jess’ experience, and what should be done about it?


Victor G Ettinger said...

The problem the author of this diatribe has is a lack of understanding that the system as it has morphed in the last few years doesn't give a damn about the individual patient. All THE system cares about is maintaining its self and the associated bureaucracy for the benefit of the payors and their employment. Patients be damned; they just get in the way of the rules.

Jay Larson MD said...

Up until a year ago, I was aware of Ehlers Danlos syndrome but did not really know much about it. A new patient established with me who had the condition and educated me on the condition and all the complications including POTS, autonomic dysfunction, Mast cell activation disorder, joint hypermobility issues, and the association with fibromyalgia, irritable bowel, anxiety, irritable bladder etc. Now I have 5 patients with the condition. It is very challenging to manage them. It is not abandonment when a PCP feels they are over their head with a rare condition and refer them to specialists who may have more experience managing the condition.

PCP's in this health care system get no respect. All these demands are placed on them without the resources to accomplish tasks. They literally do not have time to do everything. Yes you can make them part of a team, but in my experience patients want their doctor not a team to care for them. To really care for someone you have to spend time with them. A 10 minute office visit is just not going to cut it. Many (if not most) PCPs are now employed by healthcare systems. Healthcare systems are driven by profit, not individualized care. Physician ethics might as well be thrown out the window when it comes to profit driven healthcare.

What needs to be done? (Now this is where the magical thinking come in). Patient panels need to be cut in half and appointment times doubled. Reimbursement for PCP office visits should be doubled and proceduralist's reimbursement for procedures cut in half. Hospitals should be banned from employing PCP's. Drug prices should be set by an independent non-biased panel, not by the drug manufactures. Medicare should just pay providers without any hoops to jump through and not review their records to pull money back.

Until profit is no longer the main reason for the healthcare system, then people like Jess will continue to be failed by the system.

Harrison Robinson said...

Well. That's a lot to think about.

In the PCP's letter to Jess is a suggestion that Jess had somehow requested pain medicines. That is a pretty common source of conflict. Pain specialists don't make money off of managing prescription pain meds month in and month out and try to get PCP's to do this. But with the scrutiny worsening on these drugs, fewer and fewer PCP's feel comfortable with them. It feels like one wrong move will result in an investigation and a criminal charge.
And that creates a distrust with patients who get those drugs.

Then there is the description of Jess in the ER room with a sickle cell patient. There is the potential for racism and bias against pain medication users within that scenario. And again there is scrutiny from peers for giving in to demands for pain medications from patients who have chronic and recurrent pain syndromes -- just like sickle cell.

And then there is the suggestion that Jess had Fibromyalgia. Now that is a loaded diagnosis. It is linked to sleep problems and chronic pain and irritable bowel syndrome and of course depression associated with somatic complaints.

And with all of this, was Jess willing to work with a PCP team?

I'm not sure how best to react.

I am a PCP.
I have patients like Jess.
Not with POTS and Ehlers Danlos Syndrome but with chronic opioid use and rheum conditions and irritable bowel and depression, and I try to see them often and I'm sure that I have caused some of them to call me and challenge me to help them more and to do more with coordination.

We don't have a PCMH.
Not officially anyway.
But my office staff doesn't turn over much, and they refer to patients as "my patient," as opposed to "Dr. Robinson's patient," and we try to encourage patients to tell us how we can help them more.

I think Jess needed a PCP to help manage her expectations some, maybe...
But that is presumptuous on my part.

It is sad that Jess is gone.
I hope the circumstances were peaceful.

I am over time more comfortable with the new subspecialty of palliative care than I used to be, but when the concept was first floated I didn't like it.
My thought was: Isn't palliation a big part of what a PCP's role is just by being an empathic provider of care to our patients?

Maybe what we can positively take from Jess is that we need to work on empathy, and we need to recognize that there is a lack of empathy bordering on cynicism deeply engrained in the health care system we all work in.


DrJHO7 said...

That's a sad story, Bob. One of the things that keeps me grounded as a physician is the self-reminder that, no matter what our patients may/may not have done to/for themselves with regard to their health, many of them suffer from very unfortunate conditions/diagnoses that, at best can only be palliated, and at times, not very effectively. For me, this reminds me that empathy on the part of the physician is very important in our role.
A few thoughts:
One of my favorite rock bands from the 90's put out an album called "3 sides to every story (yours, mine, and the truth)." We have heard one side of the story and I'm sure there are elements of truth in that.
It is easy to blame a "primary care [physician]" for...just about anything, since they are ultimately responsible for...just about everything, 24-7-365, often with no reimbursement for their time and effort.
Primary care is not a specialty. It is a mode of care and a health policy sector.
Outpatient General Internal Medicine is not the career choice of most internal medicine residency graduates. There are reasons for that, and we know well what they are. Some of those reasons are oft quoted in this blog.
Physicians are human, therefore imperfect, and sometimes we fail. I certainly have.
When I have done well by a patient, they have told me it was because I didn't give up, that I tried (again) to help them, even in the face of significant uncertainty or previous lack of success, and with empathy.
Referrals to specialists are not an act of giving up - they are often appropriate, and many patients require assistance with setting them up. Some don't. There is a right way to provide assistance, of course.
Communication between physicians and other HCP's is a key element of care coordination and as a health system, I think we have a long way to go to improve that one, but I believe it is the better care. Much more-so, perhaps than the litany of "quality measures" we will be judged by.

maddie said...

Problems that I see commonly in primary care practice which are illustrated in this post include unrealistic patient expectations, Doctor shaming (I found the PCP's letter to this patient much more cooperative than the patients reply) and the discounting by patients of the importance of such tasks as medication reconciliation and refill (which if done correctly is complex and extremely important).

No doubt systematic problems have worsened in the 20 years I have been practicing primary care. In an effort to slow the formerly greased wheels of medical care and reduce costs payors have added obstacles that wreck efficiency and waste physician, nurse and patient time. The idea that these obstacles improve care is fantasy.

cc said...

Knowing that what I can see is only a tiny window into this unfortunate woman's case, I am hesitant to make any comments. But I stopped by her blog, and noticed that this is her definition of useful:
Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits.

cc said...

Knowing that what I can see is only a tiny window into this unfortunate woman's case, I am hesitant to make any judgements. But was I the only one to make note of her definition of a "useful" visit?

"Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits."

I have heard or been a part of enough horror stories to know that her experience with the health care system can't be disregarded, but her expectation that her physicians just "know" that everything is going fine, that they refill meds without re-evaluation, that they suddenly become experts on rare conditions because they now have a patient with that diagnosis, and that they can afford to spend time coordinating her care without ever being reimbursed shows a lack of understanding of how good health care works.

DC Doc said...
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