Ccomstoc@hillside.com

The New England Journal of Medicine published an article a couple of years ago entitled Defining “Patient Centered Medicine”.  It began with a light touch of reality:

A patient consults an orthopedist because of knee pain. The surgeon determines that no operation is indicated and refers her to a rheumatologist, who finds no systemic inflammatory disease and refers her to a physiatrist, who sends her to a physical therapist, who administers the actual treatment. Each clinician has executed his or her craft with impeccable authority and skill, but the patient has become a shuttlecock. Probably a hassled, frustrated, and maybe bankrupt shuttlecock.

Before we are all done with this earth we will all have had such experiences.

In case it escaped your notice, a shuttlecock is that feathered projectile that is the center of attention in badminton. How does it feel to be a central part of the game?

As a patient advocate I consider myself a realist and I realize we have little leverage in the game. Oh yes it is our funds that pay doctors, hospitals and labs; however these funds are managed by well shielded agents whether they be the trustees of the social security system, Congress, or the trustees of insurance companies acting as agents for our employers.

As days go by our leverage is less. I grew up in an era where my life was in the hands of a neighborhood family doctor. My mom had maximum leverage in accessing my care. One call to Dr Mahoney and I was on my bike to see him if I could drive. One call from him and I stopped at the local pharmacy on the way home for my meds, on the rare occasion he did not give them to me for free.  And if those meds didn’t work, one call to a handful of Dr Mahoney’s friends and I had a specialty visit that day. The business of medicine was once neighborhood and community based.

Not so today; it is big business. And making it patient centered is lot like trying to make Microsoft’s Support network consumer friendly.

Fortunately, hospitals are still community based, because like firehouses time is of the essence; but they are more isolated than they once were. Once and long ago they were owned by physicians, now the physicians are owned and employed by hospitals. They are large and complex businesses. They compete in market that is far from free and hospitals are the prey of contemporary politics. If they have no community conscience they may thrive; if they have a community conscience they struggle. They have a capital structure that caters to admissions, emergencies and beds. They are under mandate to reduce admission and stays in the days of growing chronicity of an aging population. How can they not be self-centered. Where then is the room for patient centered focus, when statistically they are being asked to be less patient centered. Is there any national policy and guidance for this transformation and last but not least what are the opportunities that lie within this transformation? 

I was meeting with a pediatrician at my local regional hospital  a week or so ago and we were speaking about the need for comprehensive care management for children with complex care needs and what the hospital and community might do to fill the gap in services. I was reminded that the hospital had its priorities and that pediatrics was a minor part of hospital operations. You can’t argue with such facts, as adult beds far outnumber pediatric beds and children, except for birth, have a greater likelihood to avoid hospitals than the aging adult population.

However, that those pediatric beds are a small percentage of the beds overlook the significance that the vast majority of us (99%) are born in hospitals and the impression that the hospital makes will last a lifetime. Fortunately for all parties the vast majority of us are born healthy and the occasion is joyous.

However for a small percentage of families lighting strikes and their child is born with complex needs; its effect is profound. The grief of dealing with the loss of a perfect child is crushing in and by itself; and then overlaid upon that grief is prospect of being discharged to life that runs shivers up and down the spines of even the physician and staff that care for them. In essence the room that once was in the hospital becomes the room that in large part is duplicated at home.  Except that there are no call buttons for nurses; you don’t get to go home as nurses do at shift change; there are no labs downstairs; meals are not prepared and delivered; no laundry service; no room service by doctors; and the insurance coverage that once paid the hospital handsomely evaporates; and dollars that were poured into educating medical staff for years may well be replicated for the parents into a 10 minute briefing session by the nurse 30 minutes before discharge.  There is a calamitous disconnect here. You have parents who have no clue how they are going to survive being discharged by clinicians who have never experienced an in home duplication of hospital equivalent care without the resources or the training. Is it any wonder discharged patients  show up at the emergency room sooner than later.

One might understand the health system’s neglect of such a minority population if it were minor in all respects. However when it comes to the bottom line, pediatric complex chronic care is not a minority population.

The proportion of inpatient pediatric admissions, days, and charges increased from 1997 to 2006 for any CCC (complex chronic condition) and for every CCC group except hematology. CCCs accounted for 8.9% of US pediatric admissions in 1997 and 10.1% of admissions in 2006. These admissions used 22.7% to 26.1% of pediatric hospital days, used 37.1% to 40.6% of pediatric hospital charges, accounted for 41.9% to 43.2% of deaths, and (for 2006) used 73% to 92% of different forms of technology-assistance procedures. As the number of CCCs for a given admission increased, all markers of use increased. 

One day we might learn that if don’t serve well the least and youngest  among us who are born into chronic illnesses, we may never learn the lessons that will help us overcome the burdens of chronic illness as we age.

NHS patient records to revolutionise medical research in Britain | Science | The Guardian.

I have been an advocate all my life. Now, as grandfather and caregiver of two beautiful granddaughters with rare and long-term chronic complex disorders, I find myself utilizing my skills to advocate for them. My task now is no different from when I was advocating and strategizing for my clients. A professional advocate, if worth their salt, knows that achieving goals for their client is incremental; and that resources required to achieve those goals come from a limited pool. That being said, your success is immensely enhanced, if that which you seek, has universal application for the all other claims for those same resources. You also become acutely aware of whether or not your goals are achievable given the policies and/or the economic climate that exist at any given time.

I am advocating for  resources that come from funds allocated for health care. More specifically, I am seeking resources for the pediatric population that come into this world with a rare and/or complex disorder that requires years, if not a lifetime of long-term chronic complex care. These children and their families are perfect examples of the single biggest health care problem: super- utilizers.

Patients who accumulate large numbers of ED visits and hospital admissions that might have been prevented by inexpensive early intervention _and primary care–are a relatively small group, yet they account for the majority of Medicare spending, CMCS said in an informational bulletin issued this week. According to CMCS:

• ·         Five percent of Medicaid beneficiaries account for 54 percent of the program’s total expenditures
• ·         One percent account for 25 percent of the program’s total expenditures
• ·         Eighty-three percent of the top 1 percent of users has at least three chronic conditions
• ·         More than 60 percent of the top 1 percent has five or more chronic conditions

The rare and complex pediatric population take up a huge chunk of the time and resources of children’s hospitals:

The care required by medically complex children, approximately 0.5 percent of all children in the United States, accounts for 15 percent of child health costs annually. In children’s hospitals, patients with congenital and chronic health conditions account for 60 percent of admissions, 70 percent of patient days and 75 percent of costs.

Hence there is universality to their need that is shared throughout health care and that is: they use enormous resources. However the forces currently in effect seek to reduce emergency room visits, reduce admissions and length of stay, and yet only marginally increase the funds to achieve the ends desired and those funds are directed to managing and coordinating care; to which the overwhelmed and frustrated caregiver says: managing what? The pediatric caregiver says “I can’t find a pediatric nurse even with a fistful of money”.

At the same time demographic forces are pushing about 3 million baby boomers per year into the over sixty-five crowd; and as the population gets older they in turn need care and no longer give care; they add to the complex chronic care problem and therefore add to the ER and admissions problem; statutory changes add to the demand by enrolling formerly uninsured; they arrive, having postponed prior necessary medical needs and add to the complexity of care.

While this is happening, payment systems are being squeezed due to inability/unwillingness to fund the increases in medical costs; hospitals, already facing slim margins must adjust to the squeeze of managed care and value based care payments and the pressure of inflation. In the interests of survival they are driven to focus on practices and procedures that deliver the best margins; require little in the way of ER usage; less chance of readmission; less discharge planning; and little chance of long-term complication. I am not convinced that the payments per member per month come close to being enough incentive to enhance long-term complex chronic care.

Have we legislated for ourselves an impossible task: reduce ER visits and admissions in the face of growth of rare and long-term chronic issues in children’s hospitals; tidal wave shifts in demographics as baby boomers become elderly; legislative increases in the demand population through broader universal insurance coverage? The answer is maybe yes and maybe no, and that depends upon your expectations.  I expect that the shift in burden will be from the medical system to the medical home and I don’t mean the statutory medical home. If the shift puts greater burdens upon caregivers and parents, without the infrastructure and funds to educate, train, supply and support them, the resulting effect will be to increase demands for ER visits and increase admissions. In sum it will fail.

If we really want the outcomes we desire we will put more resources into the real medical home: and that is home sweet home, where the care is given. Recent studies indicate that 50% of it is advanced nursing skills. We must study and learn from those caregivers. In fact, it is the 3rd largest category of health care and deserve a representation at the policy table commensurate with their size. health care leaders and insurers should wake up to the fact that the caregiver world has the greatest investment in outcomes and have earned a position at the Board tables that rise far above their current token numbers.