Sabina's Legacy in Healthcare and What Can be done to Honor Sabina

NOTICE:  St Vincent's Hospital where Sabina was first treated is now closed, as of April 14, 2010.  Here is detail of the decline of a premier Manhattan hospital:  NY Times Story, click.

Background

I attended Sabina as her father during her hospitalization for her head injury.  The experience of dealing with the medical system, doctors, hospital staffs, attorneys, family, friends, and press was overwhelming.  Given my experience in the management of Sabina's care at the end of her life, there are many things that must be taught to others.  As a result, I offer my collected experience and recommendation for other in a situation of serious hospitalization.

This page is dedicated what I, her father, must do to honor Sabina

Whenever I now read, hear or see any instance of traumatic brain injury, my thoughts lead to questioning Sabina's care and circumstances of her death.  I have come to know others who had to deal with the recovery of traumatic brain injury.  Many of the medical care issues exposed apply generally to serious hospitalization, especially those with potentially fatal outcomes.

Our family's experience has led me to produce both a list of recommendations for patients and loved ones, and a proposal for a Patient's Bill of Rights.

There is a long list of things anyone who is responsible for overseeing the care of a loved one should track, and act upon.  Every one of these circumstance occurred during Sabina's care.  The list is not complete, and will be expanded and modified with additional recollections and information.

• Question whether that person is getting the best possible care.  Expand your horizons to other hospitals within ambulance and air transportation range.
• Do not accept the hospital doctor's word for anything.
• Bring in another doctor to be your advocate to review charts daily if possible, weekly if that is all you can afford.
• If an infection occurs to the patient, move immediately to another hospital.  Do not question this.
• If you do not see hand sanitation dispensers in every room and all through the hospital, get out.
• If key medical equipment is under repair or unavailable due to overload for days such as MRI and CAT scanners, get out.
• If you see medical garbage on the floor, get out.
• If there is poor security in the hospital that allows gangs in without supervision, get out.
• If you notice poor sanitation and poor housekeeping such as dust  on the windowsills, get out, especially if you see this in an ICU context.  Get out.
• If the ICU has more than one patient per room, get out.
• If the nurses or doctors are lazy or playing around, get out.  A nurse more interested in pad thai than the condition of a patient, you need to find other quarters.
• If the setting is inappropriate or the staff is untrained for the patient's care, get out.  An example would be a patient treated for neurological conditions being kept in an ICU rather than a neurological ICU, get out.
• If you cannot be with the patient for any reason, get out.
• If the hospital doctors are evasive and do not voluntarily go over the patients prognosis and recovery plan, get out if you can.  They are being evasive and protecting the hospital's interests.  A sphinx like doctor is not an asset.
• If the nursing staff seems overworked and are working more than 60 hours per week in an ICU, get out.  ICUs burn out staff readily, and having nurses work more than one hospital for 6 12 hour shifts a week is a formula for ennui and carelessness.
• If you have to argue with the nurses over the care of the patient and their needs with the nurses or doctors, get out.  This is especially true when you know more about patient care than they do.  Staff often runs according to script and if they are lousy will stick to the script, pushing you aside.  This is insidious and proof of incompetence, especially if they do not invite review by a senior doctor.
• Get a lawyer immediately if an injury accident.  Get a lawyer if there are major lapses in care, or you cannot get the patient transferred to an adequate facility.
• If it is an injury accident and you are approached by the press, open up with them.  You will need all the resources that you can muster.  You will need all the strength that you can muster.

Longer term, there are major issues that need to be addressed in health care reform:

• There needs to be complete data and voice connectivity between doctors across the US who are experts in serious medical conditions.
• Serious medical conditions need to be reviewed by multiple doctors for care and treatment options.
• There needs to be regional triage over where to send patients.  Patients should not always be sent to the nearest trauma center.  Review should be in the ambulance, done by a regional triage staff linked by voice and data.
• Marginal care facilities need to be closed down or limited in the care that they can offer.  There is nothing wrong with moving patients from a top facility down to a lesser facility if the patient is relatively stable and uncomplicated.  The medical condition should be the factor that selects the hospitalization.
• Sanitation is essential and is often the poor cousin of medical care.  Sanitation should be the first focus of everyone.  If it is not a prime focus, the hospital will be a source of illness.  The disasters exposed by the Hungarian physician Semmelweis are around today.  Hospitals that are lax in sanitation need discipline.
• There needs to be patient and family support throughout the full cycle of treatment and recovery.  Patients and family understand what is going on so poorly that they take on immense stress and fear.  Very serious illnesses can require nearly 24 hour support of the patient and family.  It is easy to go off the rails and make poor decisions due to duress.

Proposal for a Patient’s Bill of Rights

One of the things that occurred to me dealing with a patient in the hospital is the similarity with being imprisoned: Your life is under the control of others and you are imprisoned by expertise of the staff.  One thing that those imprisoned receive is their Miranda rights.  No such rights are expressed for patients.  Based on various experiences with Sabina and her care, here is a Patient's Bill of Rights to consider:

1. A patient has the right to a care controller, if unable to perform the function themselves.  Define care controller as patient (if not conscious or able), or a family member, legal guardian, or roommate, if neither available, an immediate government supplied independent physician or guardian.
2. When an ambulance arrives, that the patient or a family member or guardian be given the choice of hospital that can handle treatment, with basic outcome rankings.
3. A patient can be moved to a more suitable facility, if approved by government supplied ombudsman physician, or independent review board.  Independent review is required within 1 day if not approved by ombudsman.  The ombudsman is required to render judgment contemporaneously.
4. A patient has a right to a clean room.
5. A care controller has a right to stay in the room with the patient, with minor exceptions.
6. If a patient gets a hospital borne infection, they must be moved to another hospital within 24 hours.  This right may be waived in writing at the time of discovery, not in advance.
7. If a patient gets any serious iatrogenic illness in the hospital, including bedsores, they must be moved to another hospital within 24 hours.  This right may be waived in writing at the time of discovery, not in advance..
8. If a care controller has any unresolved disagreement with a hospital staff member over treatment , the hospital staff member must summon their ombudsman for contemporaneous resolution.
9. A care controller must have access to all medical records by computer and network at a computer of their choosing.  If the care controller does not have a computer, one must be supplied for the duration of the hospital stay for 24 hour access.  Access must never be denied due to overuse, system maintenance, or oversubscription.
10. A care controller may have a physician not on hospital staff supplied to him for review of all records throughout the hospital stay, if the care controller cannot supply one.
11. A care controller has the right to question any staff member treating the patient.
12. A care controller has the right to access all widely available medical care databases.  If needed a medical database consultant will be supplied.
13. A care controller has the right to have an attendant in the room with the patient, subject to review by the ombudsman.  The attendant may be a lay person, or someone qualified to attend patients, such as a practical nurse, or therapy assistant.
14. A care controller will be given a daily summary of the care and prognosis of the patient.  Only changes need to be posted, daily, a weekly summary is to be supplied if there were changes during the week.
15. If hospitalization is for injury, an attorney or list of available attorneys will be provided if none is available.
16. The care controller will be enumerated these rights at the moment of introduction, either by paper, electronically or spoken.

What steps can we take to improve healthcare in Sabina's honor?

The major problems that Sabina encountered were due to poor care.  The origins of poor care in Sabina's case in order from most significant to less significant:

1. Overtrained staff -- Over qualified staff results in staff too busy with housekeeping tasks to manage key problems in care, and staff that is too expensive, see point #2.  Overqualified staff makes it hard to train staff, and thereby limits the size of the available staffing pool.  Requiring excessive schooling  makes staff anxious to pay back expensive loans, recover expenses, and recover lost time to training.  A limited staffing pool, creates excessive opportunities for poorly trained and poorly motivated staff.  In industry, staffs are often trained for the job in a minimal amount of time.  Requiring certifications, while reassuring, is unnecessary if the employer monitors training, qualifications, and work on the job.  Professional qualifications are often a barrier to adequate oversight, with strong bias toward deference to "experts" (e.g.  Doctors, nurses) even by peers.  One problem seen again and again is poorly motivated staff.
2. High staff costs -- High staff costs come from a variety of sources, including those enumerated in this list:  Overtrained to tasks at hand, poor training for assigned tasks, and poor motivation.  High staff costs also come from excessive competition for a limited staff pool because of legal qualifications, poor working conditions, limited career opportunity, inadequate management controls (in Sabina's case contacting nursing management was almost impossible, and often not face to face), limited resources that require staff to spend time working around limitations, union work rules that limit management flexibility in assignments (e.g. a receptionist could not empty overfilled trash containers), union wage scales above industrial norms (e.g. janitorial services), union rules that prohibit volunteers, here overqualified, hiring nursing or medical staff from foreign countries to reduce compensation but that create treatment friction due to language skills, not hiring lower level staff such as LPNs to complete rote tasks, not having enough information technology to manage recordkeeping and patient monitoring, and simply not hiring the right level of skill.   Excessive staff costs results in lower levels of care overall, because it leaves fewer funds to address lapses in care, housekeeping, IT and infrastructure.  It also results in an emphasis on cost reduction leading to shortcuts, and higher overall costs which can lead to a vicious cycle of misplaced cost reduction leading to higher staff costs.
3. Poorly trained staff -- These are perhaps the most dangerous.  This is ironic in that overtrained staff can be poorly trained.  Let me explain.  In overtraining, a doctor or nurse is given training far in excess of what is needed to perform their job function.  Because of the excessive training, they become separated from lay people and often think that they know everything.  Good doctors and nurses are generally humble.  The training that they receive is too broad.  A simple example would be a nurse trained in ICU, being responsible for a NeuroICU patient.  They lack basic experience.  They come out of school or training program, thinking that they understand all aspects of care, and are expected to know what to do.  When poorly trained staff is confronted with  a problem that they barely understand, they are often over careful, afraid to ask for expert assistance, and insistent that they are in control and understand the issues.  They may lack humility and can behave in an arrogant manner, to the detriment of the patient’s health.  Another origin of poorly trained staff is the limited staffing pool.  By limiting the staffing pool, hospitals must take the bottom of the barrel to fill staffing needs, this is especially true during nights, weekends and holidays.  Those are the times that patients are in greatest peril to poorly trained staff.
4. Poorly motivated staff -- Poor staff motivation results from a mixture of causes.  First is poor training.  A staff member with inadequate or substandard training will shun the patient, trying to defer care to the next shift.  Poor motivation can result from overworked or underworked, overpaid or underpaid staff.  Managing staff to set the proper level of motivation or fire unmotivated staff is essential.  Poorly motivated staff can often come from unionized staff.  This is especially a problem at the janitorial and cleaning level.  If they are poorly motivated, poor cleaning results in excessive filth, dust, and hospital borne infections.
5. Poor management -- Poor management runs across all levels of healthcare issues.  While they are often dealing with the hiring and management of professionals, if they do not take the time to hire well, they can hire overqualified people that become poorly motivated, under qualified staff that does poor work, they can hire overqualified staff that raises expenses to an excessive level, they can mismanage training, they can fail to oversee work performance, they can fail to motivate, or find poorly motivated staff, they can fail to remedy critical problems such as hospital borne infections, and  they can fail to manage budgets, limiting access to critical equipment, dropping the level of care in critical situations,
6. Under budgeted operations -- Critical to operating hospital and the starting point for management is to see that they have enough money to carry out the functions that they will offer patients.  Often the first area cut is cleaning and sanitation.  Good sanitation requires constant oversight and management.  Dirty facilities and overfilled trashcans are not going to improve patient care.  If there is not enough money, they must not offer services for which they cannot maintain a high level of care.  It is not good enough to maintain an adequate level of care. Each patient service must be seen as a center of excellence or it should not be offered.  If there is a regional need issue, then dropping care needs to be rationalized against patient transport offerings such as helicopter and fixed wing transport to other centers.  Just because a facility calls itself a hospital, does not mean that it must offer all types and levels of care.  If a locality or hospital wants to offer marginal care, then budgets need to be brought in line with reality.  The message here is "If you cannot do it right, then do not do it".  Lower budgets often mean lowering the level of care offered, and passing patients on to properly equipped facilities.
7. Poor equipment --  Not having state-of-the-art equipment means substandard care.  Not having enough state-of-the-art equipment  means delays in treatment and diagnosis to the detriment of the patient.  Not having maintained equipment means delays in access.   All of this is of course related directly to poor budgeting and poor management.
8. Poor patient and family support -- Not supporting the psychological needs of he patient and family through the care cycle can result in outcomes that can destroy patients and their families.  Family support can consist of allowing family members to stay in the room with the patient, providing for housing needs if the family is from far away city, and having someone that bonds with the family through the day, listening, talking and visiting several times in the day, not sitting behind  desk or partition.  These points may seem trivial, but resolving the little things must be attended to for any good outcome.  Chasing a staffer to get resolution to issues is worthless.  The person who listens, does not require certified training, and can simply be someone capable of calling on the right people; an office secretary fills such a role in business.  Motivation, drive, sympathy and intelligence are needed here, not a highly paid social worker, psychologist, or public health worker.  Think of management by walking around.  The one thing that struck me in the hospital was the lack of management of patient care.  There was no one person who was responsible for managing Sabina's care; people seemed to drift in and out of her life.  I will give St Vincent's credit for having the same doctor available every day to talk to, but because of the stresses on him, he was never able to offer much, and dealt with only the medical issues. At Columbia Presbyterian, the doctors were excellent, but were very hard to get time with, and were different every week; continuity was lacking and a coherent viewpoint never formed. There were so-called care managers or social workers, but they were often elusive, hard to identify, were multiple people, could be surly, had responsibilities at a different point in the care cycle, or unsympathetic.   To exemplify how families and support affect outcomes, a man who was in a coma for 19 years, made a substantial, miraculous recovery.  See details about Terry Wallis.  Look for it on the Discovery Health Channel .

How to Improve the Level of Care

Centers of Excellence

The best model of how to handle multiple levels of care is exemplified by the early 20th century model of the Mayo Clinic.  The Mayo Clinic was not organized by government.  It was the result of the private enterprise of the Mayo family.  Private enterprise here, really does not denote a profit making, NYSE listed facility, but a professionally run, top rate facility not run for profit.  This is a hard concept to grasp today where enterprise is some monster trillion dollar company listed on the stock exchange, or Federal, State or local government.  You may have seen a similar motivation in charity run hospitals (Mayo is affiliated with St Mary's Hospital for example), or "Doctor's Hospital" where doctors would band together to offer needed care.

Mayo relied on cases too difficult for the local doctor, or surgeon, and they relied on simple patient transportation across many states in the Midwest.  Mayo created a center of excellence that brought very highly skilled physicians together with difficult cases that matched the skill level of the physician.  There was a critical mass for specialization.  Care was brought to an optimal level for its time through transportation to appropriate skills and facilities.

The same can be done today, but much stands in the way.  Many hospitals want to carry forward with their charters of charity, and seek paying patients to fill in the financial gaps and to offer staff patients that will match their level of specialization and skill.  There is a tendency today for every hospital to want to compete with Mayo, rather than send up difficult patients to Mayo or similarly highly skilled facility.

The notion of centers of excellence is dealt with in "Redefining Health Care" by Porter and Teisberg, among other topics.  The major difference with their focus and mine is heavier emphasis on them, an emphasis on improved patient transport networks, to include both variable and fixed wing aircraft, a mechanism for emergency triage to centers of excellence, and the need for established agreements between hospitals and centers of excellence.  It is my view that no hospital should be without agreements with a center excellence on how to exchange patients with them, both in sending critical patients to a center, and releasing patients out to local and regional hospitals, clinics, rehabilitation, and long term care facilities.  This also holds for exchange between centers of excellence both for a better match of skills, to relieve patient overload, and to maintain a robust backup in case of catastrophe.

In Sabina's specific instance, she was driven to the nearest hospital that could treat head injury and traumatic brain injury.  Driving time there was seven minutes (Google).  It took St Vincent’s about an hour or two to diagnose and recommend surgery.  To reach the center of excellence for neurology on Manhattan at NY Columbia Presbyterian Hospital (reference  Bob Woodruff, ABC News, and ranked by NY Magazine)   in Washington Heights would have taken 14 minutes (Google). That time difference was probably even less since it is a freeway drive up the Westside Highway to NYP, while it is a short drive through traffic to St Vincent's.  Seven minutes difference in time is not enough to materially affect Sabina's care, while transportation to an appropriate facility is. The  time difference of 7 minutes could have  been used to prepare staff and an operating room and clear an MRI and CAT scanner, making the time difference completely irrelevant to patient care.

It is my view that no patient unconscious from head injury (traumatic brain injury) must be transported only to facilities that have an operational Diffusion Tensor Imaging systems.  Diagnosis, prognosis and treatment cannot be guided with this tool.

 I consider Sabina's transportation to St Vincent's completely inappropriate given the obvious severity of her injuries.  I strongly believe that Sabina could have had a meaningful recovery if sent to the very hospital that she was working at. 

This is horrifying, and made even more horrifying knowing that it was a government regulation by the State of New York (reference NY Medical Journal).   That led to transportation to  St Vincent's.   New York State needs to revisit its regulations regarding patient transport to the nearest trauma center.  This is one of those government regulations that sounds good and feels good, but needs to be completely redone immediately.  It is simply wrong.

What makes this issue murkier is that St Vincent's is a trauma center and should have had good care for her.  St Vincent's may have been able to carry out the surgery, but their sanitary conditions and surgical procedures were sub-standard.  St Vincent's failed to place the part of Sabina's skull in her abdomen as specified in standard protocol for hemicraniectomy (where a part of the skull is removed to relieve pressure and swelling from concussion) .  The NeuroICU at St Vincent's had no provision for isolation.  Four patients were grouped into a ward room with many people coming and going.  Young patients undergoing hemicraniectomy generally have a good prognosis of 25% to 50% long term functional outcome[medbrains.net].  Sabina for whatever reason, did not have such a good outcome.  There may have been some indication that her injury was very severe and given a very small chance to survive.

Sabina contracted a drug resistant strain of lung infection the first week from the respirator that should never have happened.  St Vincent's does not have hand sterilization at many locations in the hospital and patient rooms.  At the end of the first week, Sabina was kept under inappropriate sedation, Propofol, for too long a time; this resulted in pancreatitis, an expected side effect.  This was aggravated because St Vincent's MRI machine was not ready due to disrepair, and scheduling Sabina for diagnosis kept getting delayed.  The stay at St Vincent's became a horror show.  The infection in the lungs led the NICU to place Sabina and another infected patient from the NICU into the ICU.  The staff there were not all trained in the problems of neurological patients; some staffers were NICU experience, others were at times lax and clueless.  Even St Vincent's staff knew of the inadequacy of some members of the nursing staff. 

Improvements in Patient Transportation:
The major improvement to be made in patient transportation is to offer more choices to patients, allowing them to reach one or more centers of excellence for their illness or injury in a timely manner.

Modernization of Staff Training and Management of Staffing Costs
Staff training should be brought out of the medieval craft guild model into the 21 century industrial model.  My view is that patient care tasks do not need to be done only by registered nurses.  More tasks assigned LPNs, and minimally trained patient care technicians would improve care due to dedication to rote tasks, and specialization to simple tasks.  The notion is similar to the modern assembly line where one person performs a specific task to perfection.  In the case of patient care, this might be someone who's sole task is to turn patients at regular intervals, or another to inspect IVs for quantity, and integrity.

More advanced specialization might occur with some of the tasks undertaken by physicians.  This might be someone to handle gathering all available research on the patient's condition.  Another example, might be a person to review in detail patient monitoring data for anomalies.  Another example might be someone to test for basic functions such as coma scale using a standard set of tests.  I am not going to parse standard tasks at this level, but you get the idea of the industrial revolution:  Parse the tasks of the expert craftsman, and train workers to accomplish each separate task.  This both reduces costs, and improves accuracy and quality because of the dedication to task.

Another modern industrial practice is that of using engineers to solve specific problems and deal with specialization.  I see possible adaptation of engineering to patient care.  One possible task amenable to engineering discipline is that task of care coordinator.  A role much expanded over the narrow social worker assignment seen today.  In Sabina's case,  was frustrated by the role that social workers had in the care cycle.  Part of the problem that I saw in it is that they lacked the training and discipline of  engineers.

They typically lacked training the hard sciences, making the understanding of simple things like X-ray machine, cat scanners, MRI, somewhat mysterious to them.  I can imagine immense frustration given the lack of science training, and inability to master the material given them.  I would rather see a position of health care engineer created to replace social workers.  An engineer's role is to assemble technology and teams to solve a problem.  Social workers are really geared to working a system for an individual, dealing with paperwork, and detail.

To me these are far different roles.  Engineering roles are far more facile and malleable.  For example, you might often see a mechanical engineer become proficient in some aspect of electronic engineering, stepping completely out of their primary field of education.  Cases abound of engineers migrating across boundaries to solve a different set of problems.  Their basic training in problem solving skills and base scientific knowledge moves them across such boundaries.  There is a notion of acquired skills.  In medical are, specialties are often boxed in with severe limits placed on duties and skills.  I will challenge those who question the engineering model with engineering results:  The Intel processors.  The PC.  None of these were built by licensed engineers.  They were designed by engineers who developed high levels of skill far beyond any formal training.  They have produced these products with few defects.  The same cannot be said for medical care.

Work rules and the training of social workers block this sort of adaptation and puts them in a box.  One of the major issues identified in Sabina's case is this box thinking where no one outside is allowed inside other boxes.  Medicine needs to learn from the immense progress that engineering has made in the last century in problem solving.  It still resides in a craft/guild space.

Dietitians as a profession signify the archetype of the "medical engineer" as being close to a model of an engineer in health care, focusing on a specific science and delivering solutions.  Nursing tries to put too much into the basket.  Social work puts too little training in the mix;  one cannot imagine a social worker trying to move into an engineering role.  One can, however, imagine an engineer expanding the role of social worker.


Improved Telemedicine

Telemedicine is a means to improve care delivery by linking experts and centers of excellence.  There needs to be appropriate infrastructure to support such activity, and it should be done under cooperation.  By cooperation, I mean any fees are not charged beyond a maintenance base if hospitals and physicians provide appropriate support.  The maintenance fee is to provide a functioning infrastructure, and hourly fees for designated stars.

Key to making telemedicine successful is federal recognition of all state medical licenses for any telemedicine activity.  It would be insane to deny a patient one state the expertise of someone not licensed in that state.  This cries out for federal regulation under the telecommunications act.   This is no place for states rights.  Patients and families should also have the right to consult physicians out of state without local license.

One request that I would make at a federal level is to mandate and pay to have all medical publications on-line for free.  The time for paid subscription medical publications is over and is impeding medical research, impeding dissemination of treatment options, and thus is costing lives.  Access to any medical papers should be instantly accessible by anyone, anywhere with a computer at no cost.  This is not something that benefits from high costs.  All the access keys, codes, different databases, and all cost time, effort, and limit thoroughness.  It is a friction on care and medical research that must be eliminated.

A real case example is in order to show why medical papers should be freely accessible by anyone anywhere.  I represented a firm in the SPEC (Standard Performance Evaluation Corporation) a non-profit industry consortium.  SPEC started out by charging about $500 for a quarterly publication of its performance results.  The high cost barely covered the costs of preparation, editing, printing, binding, and shipping since it was a low volume circulation.  When SPEC went to WEB based publication, it made the data freely available.  Updates to performance results instead of being quarterly (and publication was formerly delayed up to nearly 1/2 year), came out monthly.  There was almost no cost to publication.  The organization was able to function without any raise in membership fees. Quality and speed were much higher.  It comes free.


Facilities Improvements
Facilities improvements begin with management.  Number one facility improvement is sanitation and cleanliness.  It takes a military drill sergeant-like manner to deal with the detailing of dust, dirt, messes and waste.  The same goes for security; it needs to no-nonsense, and unobtrusive.

Another aspect is to have enough funding to manage the mission requirements.  It means having enough patients in special intensive care facilities to justify the infrastructure.  Neuro-ICUs must have isolation for example.  Neuro-ICUs need special computerized and networked monitoring equipment given the vital sign complexity of their patients.

Because neurological patients can manifest a lot of distress, facilities need to make provisions for 24 hour attendance by one relative or caregiver.  Basically a cot in the same room.  Rooms need to be large enough to allow for them and allow appropriate isolation for the patient.  My father was a neurological patient and needed toilet access.  He fell out of bed trying to get the attention of staff and cracked his skull open again.  The staff had ignored the pager, his yelling,  and items thrown at the door by my father.  In Sabina's case, storms would erupt, and staff at night would be thin and preoccupied. 

Had Sabina had a bed in her room for a relative, she may have had a better outcome.  Such was the staff inattention for her two most severe storms.  Having a cot for a relative offers a much higher degree of comfort for the attending relative, and may boost patient morale and speed recovery knowing that someone is there.  Just because someone is not obviously conscious does not mean that they are not aware of their surroundings.  Given the story of Terry Wallis I believe that contact with relatives can have a major effect on outcomes, both in the long term and short term.  Get the cots in the rooms, and make the rooms big enough, or put a futon on the floor.

IT needs to be a focus for facilities improvement.  All patient records should be paperless.  Mayo and various other institutions have done this.  Voice recognition should be available to record status and observations.  New IT programs need to bring patient cases into contact with experts using social networking tools such as twitter, or blogging.  Each patient should have a physician, patient family, and staff blog.  The physician blog is to explore and contact cohort specialists that can offer advice and guidance on advances in patient care.  Sabina would have greatly benefited from this at St Vincent's, and it is my belief that had NYP had such a system in place that advanced therapies could have improved her outcome at NYP, for example the baclofen pump.

Patients and families should have computer access to all of the hospital library and online library for searches, and access to all patient records, including prognoses.  I was never shown Sabina's records, and only once shown her cat scan.  I found communication with staff of poor quality at both hospitals.  Patients should be able to call on the staff librarian for computer search assistance.

Computerized drug dispensers at NYP were a massive improvement over the air tube shuttle from the building pharmacy.  Nurses would walk to the end of the hall, type in a password, and get any drug needed for a neuro patient.  No walking, waiting, pleading, poor record keeping or confusion.  Sabina would have benefited a great deal at St Vincent's even to get Tylenol for fever reduction during her storms.  The cost of computerized drug dispensing  is easily justified in staff time and better outcomes.

Better waiting rooms with 24 hour access and security cameras are essential.  Any visitor with a felony record needs to be accompanied by a security guard.  I see no reason to waive such a requirement.

ICU rooms should have a pleasant view of the outside world.  The ICU at St Vincent's was horribly depressing.  Windows were set high into a dusty, dirty well that offered almost no contact with the outside.  Patient's need to have their biological clocks somewhat set by sunlight.  The rooms should be easy to clean.  Those at St Vincent's were not.  Those at NYP MIlstein hospital were very well designed  for a clean stay.  The NICU at St Vincent's was far too busy and chaotic with no isolation for patients.  The results of poor cleaning were manifest by the resistant acinetobacter infections among the patients.

Of course there are the obvious things.  Equipment should be in working order and enough equipment needs to be available to serve the needs of the patients without encountering substantial delays.  Delays of 4 days as seen at St Vincent's are simply inexcusable.  Diagnostic equipment should cause minimal stress on the patient.  Because diagnostic equipment was so far away at St Vincent's and because of it may have too cramped for NICU patients, there was a lot of stress associated with her transportation to equipment, and the need for heavy sedation, which ultimately led to pancreatitis.


Patient/Family Communication
These are first and foremost improvement in technology, and second about providing a consistent, constant human contact with the administration. 

Technology can be the simplest means to bridge the gap between patients & families and healthcare workers.  First you need online recordkeeping.  Currently only 15 to 20% of hospitals manage their records online.  These records then need to be accessible by patients and families to understand what is being done and what the expected results will be.  Automated record keeping offers a better means of nursing oversight than presently exists, and offers a means to offer more consistent nursing care.  It avoids duplicated tests, incorrect tests, and incorrect treatments.

Patient Management through a Healthcare Agent
Here we are talking about an TBD

Prevention of brain injury
Brain injury can occur from multiple sources:  physical trauma like Sabina's, anoxia from carbon monoxide or other gasses, asphyxia from drowning or smothering, drugs, and aneurysms/stroke.

I was reminded of how simple it can be to prevent brain injury by a note from one of Sabina's friends who was alerted recently by a simple $20 device to detect carbon monoxide.  It surely saved her and a number of apartment dwellers from serious brain injury or death.  Read the story [click here].  Call it a miracle if you wish.  Perhaps Sabina has not forgotten us.

The other methods of preventing brain injury are all too obvious:  Wear a bicycle helmet, or motorcycle helmet or occupational helmet, be alert 360 when crossing the street, don't play soccer with your head, avoid drug abuse, avoid tobacco, wear a life vest for motorized water sports, never swim alone, and keep your pool secure.  If for any reason you cannot maintain a 360 view of your surroundings while crossing the street, spread your arms out.  Spreading your arms even a little helps to take the energy of impact away.

To learn about Sabina's struggle for life after severe brain injury, and treatment of brain injury, please visit her page on autonomic storms . 

My Scientific View of Organ Donation

On issue brought to attention is that of organ donation.  I have come to the conclusion that organ donation of what are considered to be brain-dead patients should be halted.

Why should organ donation be stopped in brain injury cases?  Two reasons:

1.  It is my view that many brain injury patients can be revived through aggressive coma stimulation and therapy, and achieve much better outcomes than presently attained.  The cost is high, but the rewards are greater.

2.  Most importantly, I have come to the conclusion that scientific research in the ways to alleviate damage in the first few hours needs to be advanced.  The alternative of organ donation pushes away aggressive study into stopping brain cell death by the very existence of an alternative. 

The thinking would be:  "we need organs really badly, doing more to reduce brain death after trauma is not going to yield us nearly perfect humans, whereas organ donation will bring us a yield of more perfect humans".  I realize that almost everyone would deny this, but you see this wrenching agony of a family offering a child's organs, in contrast to the family whose child receives the organs. Personally I find the taking of an organ where there is this competition between death of one child versus the death of another child quite disturbing.  To me it is the horror of cannibalism.  It is the horror of the Chinese who harvest the organs of the executed -- that process tends to encourage more executions.  Seeing research on preventing organ donor damage in storming patients sets my teeth on edge.

To me the right answer is to find ways to generate organs using cell culture methods for those in need, and to find relief for brain injury through aggressive research.  Stopping organ donation would set research and clinical priorities on the right track.  My view is that much more can be done to save and improve outcomes for brain injury, that it is unconscionable to deny every TBI patient any chance for reasonable recovery.  Simply because brain injury requires extensive support is not a reason to deny someone a recovery within the means of society.

To those struggling with traumatic Brain Injury
After my struggle to save Sabina, I started to realize the truth of Churchill's words October 29, 1941, when he visited Harrow School during the darkest days of WWII:
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But for everyone, surely, what we have gone through in this period [...] this is the lesson: Never give in. Never give in. Never, never, never, never — in nothing, great or small, large or petty — never give in, except to convictions of honour and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy.
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My life has changed.  TBI in a family member will change your life.

Sabina had a spiritual strength that shined on everyone that knew her.  May the Lord keep her close to Him.