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:
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.
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?