{"id":5392,"date":"2010-04-15T20:58:13","date_gmt":"2010-04-16T01:58:13","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=5392"},"modified":"2010-04-15T21:07:52","modified_gmt":"2010-04-16T02:07:52","slug":"the-healthcare-pyramid-views-from-the-apex-and-the-base","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/04\/the-healthcare-pyramid-views-from-the-apex-and-the-base.html","title":{"rendered":"The HealthCare Pyramid – Views from the Apex and the Base"},"content":{"rendered":"

We’ve talked in the past about “d-patients<\/a>” – doctors who become e-patients themselves. Our own founder Tom Ferguson MD was one. “D-patients” are a special case that proves, once and for all, that being an e-patient has nothing to do with rejecting the medical establishment, \"\"<\/a>as some have feared. Being a d-patient, or any e-patient, is about being empowered, engaged, and participatory.<\/em><\/p>\n

This special guest post is by Alan Pitt MD, a radiologist at a neurological hospital who found himself being a participatory caregiver: his mother, an accomplished artist, became a quadriplegic. At left is a drawing she later did, showing what her breathing felt like when she first came off the ventilator, with her chest walls very weak. This drawing has been accepted into several national exhibits.<\/em><\/p>\n

The medical story is compelling, but as with all patients, when all is said and done, life goes on. In this thoughtful essay Dr. Pitt asks why we can’t have better e-tools to make it easier for the family to participate<\/strong> in her care. <\/em>
\n
\nThe Apex of Care<\/strong><\/p>\n

My name is Alan Pitt.\u00a0 I am a successful physician at the Barrow Neurological Institute (BNI), the U.S largest hospital for neurological disease.\u00a0 As a senior\u00a0 radiologist, I have a good idea who are the best doctors and how to get things done at my hospital quickly.\u00a0 Every year we take care of thousands of patients with brain tumors, epilepsy and spinal cord injuries to name a few.\u00a0 There is process to care for these patients referred to as best practice.\u00a0 We hope to optimize their outcome while they are in our care.\u00a0 I am also the son of a quadriplegic, Sheila Pitt.\u00a0 Danny Sands, a friend, thought it might be of general interest if I gave some perspective on her story, and my observations since her accident.<\/p>\n

Here is some background on my mother.\u00a0 She has always been a strong, independent person.\u00a0 Growing up she successfully competed in women\u2019s gymnastics.\u00a0 She wanted to go into art, but that was not an acceptable career for a good Jewish girl in the 50\u2019s.\u00a0 Her father suggested she was better suited to be a teacher.\u00a0 After marrying, she pursued a fairly traditional life as a spouse and mother.<\/p>\n

After we moved to Arizona in the early seventies she developed a passion for horses.\u00a0 She was an Equestrian.\u00a0 She began riding in her 30\u2019s and continued in the sport for over 35 years reaching a high level of competition.<\/p>\n

In her forties she also went back and pursued her dream of becoming an artist.\u00a0 She got her MFA at the University of Arizona.\u00a0 She received tenure in her late forties and was made head of the printmaking department at the University of Arizona.\u00a0 Her work has been shown at national and international shows.\u00a0 She was also asked to advise the undergraduate studies program for the department, managing over 750 undergraduates.\u00a0 She was elected to the Faculty Senate.\u00a0 She is no wall flower.<\/p>\n

The day of her accident was a bit bizarre.\u00a0 I was participating in a new building dedication. Most of the neurosurgery department was in attendance. \u00a0Late Saturday morning, I got a call from my sister.\u00a0 She wanted to tell me mom had an accident.\u00a0 She had fallen from her horse and the paramedics were there.\u00a0 I didn\u2019t think much of it, but was able to reach another friend at the scene who put me through to the paramedics.\u00a0 They were taking her by ambulance the hospital.\u00a0 She was complete from the neck down.\u00a0 I collapsed in front of 50 of my peers.<\/p>\n

\u201cComplete\u201d is a term in neurosurgical terminology meaning the patient isn\u2019t moving below a certain level- neck, chest ,waist- and really isn\u2019t supposed to move ever again- they are complete.<\/p>\n

There were a series of tests and stabilizing care given in Tucson.\u00a0 Within 8 hours I had her helicoptered to my hospital 100 miles north. By midnight she was in the operating room with one of my close friends and best spine surgeons in the country, Dr. Nick Theodore.\u00a0 I honestly believe my mother\u2019s functional status would not be as high without this prompt intervention.<\/p>\n

As a senior physician at the BNI, I was able to guide much of my mother\u2019s course through the ICU, step down and rehabilitation facility.\u00a0 Another friend, Dr Rick Su, prevented her from requiring a tracheostomy by patiently monitoring her respiratory status at a critical time.\u00a0 This procedure involving a breathing tube inserted into her neck, would have meant several months of additional recovery.<\/p>\n

When she arrived at the rehab floor, Mom had minimal movement in one shoulder, but could breathe on her own.\u00a0 She began a course of aggressive therapy.\u00a0 Therapists \u00a0worked on her limited strength and function most days.<\/p>\n

Occupational therapy was perhaps one disappointment.\u00a0 We wanted to have Mom trained to use voice recognition on the computer.\u00a0 This would enable her to read and respond to email, in essence, get her closer to reintegration with activities of daily living.\u00a0 We were told they did not have the staff to train her on the computer and would only offer skills for her to type the keys with a pencil.\u00a0 We arranged for a local high school to volunteer.\u00a0\u00a0 Students would offer computer assistance with the software program in exchange for volunteer hours at the facility with my mother and other patients having similar injuries who asked for help.\u00a0 It would be a win-win.\u00a0 This opportunity was passively refused by the hospital occupational therapy supervisor.<\/p>\n

She spent several months there with some gains.\u00a0 She was able to push up her glasses with one arm.\u00a0 However, after a while, she wanted to go back to Tucson.\u00a0 Her husband and friends were there.\u00a0 Phoenix was not her home.<\/p>\n

The Base<\/strong><\/p>\n

As a quadriplegic the only place in Tucson meeting her medical requirements and that her insurance would pay for was the county nursing home.\u00a0 This is a clean but rather Spartan facility.\u00a0 The staff was nice but limited, and the physician rarely seen.\u00a0\u00a0 She was placed in a room with roommate.\u00a0 This woman had been in a chronic vegetative state (most would call it brain dead) for 15 years with no chance of recovery.\u00a0 All Mom could hear was the in and out of the breathing machine.\u00a0 Although she said this was a plus (she didn\u2019t have to be bothered by idle conversation), I know this wore on her.<\/p>\n

It felt like a dream to me.\u00a0 She showed tremendous strength.\u00a0\u00a0 One minute she was a professor in front of students.\u00a0 A horse stumbles and she is unable to move or reach a call button.\u00a0 The person next to her was one in name only.\u00a0 After another month, custom changes to her home were completed.\u00a0 She left the nursing home and remains at home today.\u00a0 She has 2 care providers on any given day.<\/p>\n

Whereas I could monitor and optimize my mother\u2019s care at the BNI, in her new surroundings I am largely reduced to a family member.\u00a0 Certainly other care providers make themselves available to me.\u00a0 However, largely her care is reduced to the base – self driven and self monitored with no real \u201ccaptain\u201d of her ship.\u00a0 She has a multitude of providers – a urologist, a neurologist, a physiatrist.\u00a0 Each deals with individual issues they are comfortable handling.\u00a0 There is no individual overseeing the care process.\u00a0 This is largely the responsibility of my mother and her husband.\u00a0 Like most people with chronic illness, they have discovered their own solutions, ways to solve problems they encounter with drugs, services and insurers.\u00a0 She has a marker board for her list of medications and appointments.\u00a0 Although we all have financial worries, hers seem somewhat more acute and ever present.<\/p>\n

\"\"<\/a>After much cajoling, she returned to work last September.\u00a0 She teaches a full class at the University of Arizona on printmaking (see picture below).\u00a0 She asked for and received a student helper in the classroom and one to assist her in making art in her studio from the university\u2019s disabilities resource center.\u00a0 She has had to be creative in the process.\u00a0 She participates in the process but needs to be collaborative.\u00a0 I have asked her to write a piece on how the process of art has changed for her – both as an able bodied person and now as one with disability.\u00a0 She is thinking about it.<\/p>\n

Her health remains good.\u00a0 She deals with occasional spells related to body temperature regulation and hypotension, but overall has not had common complications of many quadriplegics.<\/p>\n

I would like to make one final comment regarding quadriplegia. The word \u201ccomplete\u201d is a misleading term that should be abandoned. On hearing this term, many of the nurses we met at the Barrow gave up on my mother assuming she would never get any further recovery.\u00a0 Patients with cord injuries are not complete or incomplete.\u00a0 They are transected (the cord has been cut) or they have an injured but intact cord remaining.\u00a0 There is no way to know at the time of an acute event whether the cord is cut or simply injured without advanced imaging.\u00a0 For those that are not transected, like my mother, every day is a chance to get a new skill, to recover lost functionality.\u00a0 Hope is a powerful motivator.<\/p>\n

Replacing the shoebox and other issues for the future<\/strong><\/p>\n

Along with my clinical responsibilities, I do research related to the nexus between humans and computers, asking how data and process can be captured to improve care.\u00a0\u00a0 I have a particular interest in tools enabling patients to participate in the process of wellness.\u00a0 I find it more than a little ironic that my mother continues to use paper and a marker board to manage her care. My mother\u2019s experience reflects some of the basic problems with the current approach to healthcare delivery.\u00a0 In particular, her care was optimized during the acute phase, but is relatively disorganized now that she is coping with a chronic disability.\u00a0 Further, patient and family efforts to optimize care are not supported by participatory tools.<\/p>\n

The current administration is spending billions of dollars to improve the healthcare infrastructure.\u00a0 There is an expectation that within 5 years every medical practice, from large hospitals to small clinics will be using some form of electronic record.\u00a0 This should improve care and hopefully reduce costs.\u00a0 However, in many ways, this is more of the same, an effort focused on the provider, the apex.<\/p>\n

Patients and their families need a similar effort that is directed at helping them care for themselves.\u00a0\u00a0 Currently, a shoe box is the best we\u2019ve got.\u00a0 This \u201cbox,\u201d full of notes from previous hospitalizations and clinic visits along with CD\u2019s of images, is all too common.\u00a0 The patient comes to clinic, hands over the box and expects the provider to make sense of the records and arrive at a plan moving forward.\u00a0 With most appointments no more than 30 minutes, this is not going to happen.\u00a0 There are a number of companies offering to digitize records.\u00a0 This is not the answer.\u00a0 Providers need relevant summaries, dashboards, of how the patient has been doing.<\/p>\n

There have been some recent signs of change.\u00a0 In 2006 the FDA suggested \u201cobservations of daily living\u201d (ODL) become part of new drug and device evaluations.\u00a0 It makes sense to ask the consumer (and not just the researcher) how they are doing with products.\u00a0 The private sector has also made efforts.\u00a0 Microsoft, Google, and Relay Health have all introduced solutions that capture information about and from patients.\u00a0 However, these are not simple to use or significantly relevant to merit sustained traction.<\/p>\n

Solutions need to be transparent.\u00a0 Many people with chronic illness are from a generation that is not comfortable with the internet.\u00a0 Even cell phones are a bit foreign.\u00a0 My father-in-law often uses his cell phone as a one way device.\u00a0 He makes calls and then turns it off to save the battery.\u00a0 My mother is willing to participate, but the process has to meet her workflow.\u00a0 My personal belief is that the TV will be the final common device.\u00a0 Everyone can work a remote.\u00a0 It will work with other devices in the home through Bluetooth.\u00a0 It will remind us when to take pills.\u00a0 It will allow us to meet with our doctor while at home.<\/p>\n

The cable box is not a one way device.\u00a0 I Skype with my mother, but she has to turn on the computer, start the application, turn on the camera.\u00a0 She should meet me and others on her healthcare station.\u00a0 Voice recognition software also needs to improve.\u00a0 It is designed for business, but there are other large markets.\u00a0 The software needs to be hands free.\u00a0 She uses it, but not without assistance.\u00a0 Later this year she and I will be experimenting with a new box from Cisco that should get us closer to this vision.<\/p>\n

Solutions need to consider the patient\u2019s ecosystem rather than their illness.\u00a0 My mother and I don\u2019t care about quadriplegia, but rather living with quadriplegia – how she copes with the various difficulties in her effort towards wellness.\u00a0 Most approaches do not consider ways to leverage the family and related opportunities or local resources to stay well.<\/p>\n

I was told a story by a father of a juvenile diabetic.\u00a0 His daughter had slipped into coma several times in the past.\u00a0 Out of concern, he found himself calling her once a week at odd hours to check on her.\u00a0 The daughter viewed these calls as an intrusion on her independence.\u00a0 A solution that called out to the father, but only when there was something wrong, would have provided a margin of safety for the daughter while addressing her family’s concerns.<\/p>\n

Similarly, advanced electronic platforms message or alert a nurse <\/em>if the patient\u2019s weight, blood pressure or sugar is abnormal.\u00a0 Why are family members not included in the messaging layer?\u00a0 Families are cheap and the most vested in the patient\u2019s well being.<\/p>\n

My mother has to find solutions to problems on her own – where to find goods and services, how to deal with common problems.\u00a0 Google Maps can find and rate a restaurant or the nearest gas station.\u00a0 Why not use local based services for physicians, wheel chairs, etc.? I raised this issue with Google Health two years ago…nothing yet.<\/p>\n

The patient is the largest untapped resource in the healthcare debate.\u00a0 After all, they are the most vested party, the one with the illness.\u00a0 Providers are merely a part of the process along the way.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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