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?

Best,

Jess

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?

Thursday, August 11, 2016

Make it go away!

We all want this sometimes, don’t we?  We want the things in our daily lives that bug us the most, like long lines at the DMV, to just go away.  But how often does that really happen?

As the senior staff person for ACP’s governmental affairs team in Washington, D.C., I hear often from exasperated physicians who want ACP to just make things they don’t like go away, whether it's MACRA or EHRs or Obamacare. The problem is that “make it all go away” is mostly about wishful thinking; it’s not a winning strategy. I respond by trying to explain while it may not be possible to make “it” go away (and probably not a good idea even if we could), ACP is striving to make things better.   As much as some physicians might want, and some pandering politicians and membership associations may  tell them, here are 3 things in healthcare that are not going to  go away, yet much can be done to make them better.

1. “Government-run” health care isn’t going away.  The fact is that millions of Americans already get their health insurance from government programs, and the number will continue to grow. More than 55 million people are enrolled in Medicare;  more than 72 million in Medicaid and the Children’s Health Insurance Program; 12.6 million in qualified health plans offered by the Affordable Care Act.  Comparing 1997 to 2014, the number of persons under age 65 with public health plan coverage increased from 13.6 million to 24.5 million while the number with private health insurance declined from 70.8 million to 63.6 million.   Enrollment in both Medicare and Medicaid, driven by demographics and, in the case of Medicaid, by the Affordable Care Act, will continue to grow: by 2022, an estimated 66.4 million people will be enrolled in Medicare, another 77.9 million in Medicaid. 

And as more people are enrolled, federal spending will increase: for 2015 through 2022, projected Medicare spending growth of 7.4 percent annually “reflects the net effect of faster growth in enrollment and utilization, increased severity of illness and treatment intensity, and faster growth in input prices, partially offset by ACA-mandated adjustments to payments for certain providers, lower payments to private plans, and reducing scheduled spending when spending exceeds formula-driven targets” according to the latest government estimates.  The same report says that Medicaid spending will grow by about 6.6% annually from 2016 to 2022, mainly driven by spending on the aged and disabled.

There a lot of things about “government-run” healthcare that doctors don’t like, and for good reason -- things like excessive regulations and price controls.  Much can be done to streamline, simplify, and improve Medicare, Medicaid, and Obamacare while making them more fiscally responsible.  But “government-run” healthcare has also improved the lives of many millions of seniors, children, and previously uninsured persons who otherwise would not have access to coverage and affordable care.  It is mainly because of government programs that the uninsured rate is at an historic low. 

2. Obamacare isn’t going away.  Related to the above, the Affordable Care Act, or Obamacare if you prefer, is not going to be repealed.  There is no plausible scenario where the voters will elect a Congress that will have the votes needed to repeal the ACA, even if Mr. Trump was elected to the White House.  And even if somehow they did, they would have to figure out a plan to replace it without kicking off the 20 million plus Americans who now get coverage because of the ACA.  This is why independent experts, including ones that have been highly critical of Obamacare, believe that a more likely course of action is that Obamacare will be reformed to address unpopular things like the Cadillac tax (which Mrs. Clinton has also proposed to repeal).  Steps might also be taken to shore up the health insurance marketplaces so they are not as subject to disruptions as insurers raise premiums or pull out of markets because they are losing money.  As the Washington Post editorial board recently wrote, there are some modest Obamacare fixes to the marketplace instability that could be implemented by a new President, if Congress was inclined to be part of the solution.

3MACRA isn’t going away.  The Medicare Access and CHIP Reauthorization Act (MACRA), which was passed last year with overwhelming bipartisan support, is not going to be stopped or repealed, nor should it.  The law makes needed changes in Medicare physician payment to align payments with value and to promote innovative delivery models like Patient-Centered Medical Homes.  As I wrote in previous posts, MACRA is a big improvement over the existing Medicare Physician Quality Reporting System (PQRS) and EHR Meaningful Use programs; the “sky-is falling, end of small practice” narrative is not supported by the facts.  Yet MACRA implementation is a work-in-progress—CMS has only issued proposed rules for 2017, not final ones—and there is much that needs to be done to ensure that Congress’ intent of simplifying quality reporting is met.  As I also wrote in this blog, what we need are practical solutions -- as ACP has provided in its comments on the proposed rule—not anti-MACRA rants. 

Now, I know that some conservative readers of this blog will say, there Bob goes again, defending big government health care.  Yes, I do believe—as does ACP—that programs like Medicare, Medicaid, and the Affordable Care Act have made American healthcare better (and the facts are on our side).  I do believe, as does ACP, that MACRA has the potential to bring about needed improvements in how Medicare pays physicians while achieving greater value for patients in the process.  But I also know that there is much that can and needs to be done to make these, and other programs, better for doctors and patients.  I believe, as does ACP, that there is merit to many conservative ideas that would introduce more competition, transparency and fiscal responsibility into them while easing regulatory over-reach.  I believe, as does ACP, that there is also merit to many liberal ideas to improve these programs, like allowing patients over the age of 55 to buy into Medicare and having a “public option” to compete with private insurers in the marketplaces.

There is a place for ACP members, conservatives and liberals alike, to work through the College to come up with practical improvements that draw on the best ideas from both camps—as they do, every day, by serving on ACP policy committees, the Board of Governors, the Board of Regents, and in leadership positions in our state chapters. They don’t engage in wishful thinking, they help us develop practical solutions.

Yes, we can make government-run health care programs more efficient, less costly, more accountable and less burdensome to doctors and patients.  But make them go away?  As we would say in my home city of New York, fuggedaboutit!

Today’s question:  Do you think “government-run” health care can or should go away?