Chapter 6
Medical Rehabilitation
OPPORTUNITIES TO FIND DEEPER
POWERS WITHIN OURSELVES
COME WHEN LIFE SEEMS MOST CHALLENGING
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STORIES FROM THE PATH
After almost
2 months in the ICU, Jane had made it through her life vs. death labyrinth, the
first phase of her journey to recovery. She was unhooked from monitors and
shunts and transferred to intermediate care.
A ventriculoperitoneal shunt was permanently installed and, freed from external
tubes and catheters, she was able to begin physical therapy. Each day I
eased Jane into a wheel chair and took her to the top floor of the hospital
where physical therapy facilities were located. Eventually she was well
enough to be released from the medical unit to the rehabilitation hospital
located across the street, where intensive and comprehensive rehabilitation
could be provided. Little did we know, when Jane entered the rehabilitation hospital, that we had also entered yet another labyrinth of worst case events, or that she would be discharged 10 days later on grounds that she had “plateaued-out,” in the words of the neurologist who directed her rehabilitation team. It was then that her health insurance was cancelled, retroactively, and we received the hospital bills outstanding. Having performed the standard underwriter review, the insurance company had determined that we were “guilty of attempted fraud and deception,” a false charge, as was later revealed. Coincidentally, the rehab team determined that there was nothing further the hospital could do for her. Later we learned that this sort of situation is to be expected if the patient is self-employed, as we were, and has an acquired rather than traumatic brain injury where, in addition to health insurance, accident insurance and litigation can provide additional sources of funding for third party pay services. Specific, rigid and demanding reporting requirements also take advantage of the patient’s vulnerability. Fortunately, a remedy was provided in our case by the state insurance commission which investigated the underwriter’s claim and successfully negotiated to reinstate our policy retroactively. But it was only by chance that I learned of this valuable resource from a lawyer we had met at a party a month or 2 before Jane’s aneurysm; it turned out that she worked for the insurance commission and called to see if we needed any help.
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Their team and your team
Typically, several medical teams are involved during a patient's extended stay
in the medical hospital, from emergency room to physical therapy. At the
same time you will have developed your own caregiver team, the one that will
provide medical services after your patient is discharged from the hospital. The immediate focus
of this team will
continue to be medical during the period of transition. Discharge from the
medical hospital may be to outpatient status primarily to access the hospital's
physical therapy program, or to a rehabilitation hospital, or to the home with
physical, speech and occupational therapy provided either in the home or at a
neurorehabilitation center.
At a minimum, the rehabilitation hospital team will include a doctor (neurologist or medical doctor). In keeping with the hierarchical medical model, the doctor will examine the patient and prescribe medication, order tests and provide instructions to other members of the team. These include a social worker and an occupational, speech, and physical therapist. After discharge from the hospital, you will assume the responsibility that the hospital doctor had for running the team, but the operating model for services will change from the hierarchical one to a patient-provider or consultative arrangement. This permits a major change from a doctor-oriented approach to rehabilitation to a patient-oriented approach. The patient and caregiver can then become partners in a collaborative rehabilitation effort the details of which will change as recovery proceeds over the long run.
The patient-oriented team also permits more flexibility in selection of modes of treatment as well as programs and choice of providers. While therapists, nurses and social workers on the hospital team are restricted by their relationship to the doctor, they are free to interact and develop treatment innovations based on their work with the patient. Working this way also provides for better integration of patient activities with other activities of the family and the development of the new lifestyle that recovery requires.
Thus, aside from the financial
questions relating to insurance coverage, there are a number of considerations about
how to proceed after discharge from the medical hospital. Given the range of alternatives, it is not
so much about what one can afford as about finding the best and most effective approach.
A rehabilitation hospital is probably more appropriate for the patient with
traumatic head injury if there is a continuing need for medical treatment than
for the patient with closed head or acquired brain injury.
Otherwise, given the expense ($1,000 per day or more) and the bother, it is
probably more cost effective to spend money for rehabilitation on resources that can be
accessed from home. Of course, it is also a question of what is affordable
and what insurance will pay for.
The rules
If you elect to use an in-patient rehabilitation facility you may find the program
dominated by management and administrative concerns with liability issues.
Rules and regulations may restrict actual rehabilitation activities to a minimum
and an approach based on the medical model tends to restrict the freedom of
therapists. At least the usually inadequate hospital food can be
substituted for by visits to the hospital cafeteria where you may find more
choices and a better grade of food than is served in the room. The primary need of the patient at
this time (and, possibly, for several months to come) is for sleep, sustenance,
peace, quiet and simple pleasures. At this point, other than the need for
physical exercise, rehabilitation is primarily spontaneous. There is a
great need also for simple amusement--TV sitcoms, comedy shows and films are
excellent sources of laughter. Walking may be difficult but is vitally
necessary. Constraint-induced movement therapy has been found effective
for patients who have difficulty moving arms or legs after stroke (see website
listing, below).
In Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration, Norman Cousins described how he improved his convalescence by moving from the hospital to a suite in a hotel nearby. If the home environment is noisy and even slightly chaotic, it would not be a good place in which to start the recovery process. A motel or hotel suite would be much better. Some motels provide suites with a separate bedroom and a small kitchen. Housekeeping cleans the kitchen everyday with the rest of the suite. There is cable TV, swimming pool, exercise room and sometimes a lounge area in the main building where complementary breakfast and afternoon snacks are provided. Restaurants and other amenities such as parks and recreation facilities may be located nearby. Rehabilitation therapy, VNA visits and almost anything else you may need can be provided on site.
The cost for this arrangement will be a fraction
of the charges at a rehabilitation facility and, with the services provided,
more convenient and pleasant for the caregiver. The rate is subject to
negotiation and possibly even barter for an extended stay. With a
prescription from the patient's physician the cost may be tax deductible (see
Internal Revenue Service, Publication 502, Medical and Dental Expenses, below).
Things to Do Checklist
● Check Head Injury: The Facts (see Chapter 2, above, for
citation) for considerations regarding the transition in leaving the
hospital and medical concerns for the caregiver to be aware of.
● Check the eligibility of both you and your patient/partner for benefits.
Contact Federal, state and local social services offices for information about
locally available resources. The National Council on the Aging provides an
individually prepared report for adults over 55 at:
http://www.benefitscheckup.org/
. This service is also useful for those under
55. To find other programs for children, enter "benefits check up
rehabilitation children" in a search engine.
● State social services departments provide case management and in home services even in small communities. Community centers can also provide activities that help in physical rehabilitation for those who are ambulatory--exercise room, gymnasium, dance classes, an adjacent park with walking paths. It is important to keep moving and have fun with a variety of activities. A rehabilitation hospital may be inappropriate if the program is limited by being structured and if the facilities are unavailable except under strict supervision due to administrative concern for liability.
● If you set up arrangements with the Visiting Nurse Association while your patient was still in the hospital, the case manager and nurse will make their first visits as soon as the patient is home, in order to help in the transition. This can be very helpful and comforting since arrangements must be made that are best for the patient with reference to the needs of others in the household.
● Buy a blood pressure monitor (check Consumer Reports, June 2003, for a recommendation). The patient's blood pressure should be checked before and after exercise and morning and night, with results kept in a notebook log. Take the log with you when you visit your internist.
● Find a local internist who is Board Certified and knowledgeable about head injury issues who also accepts Medicare payments (hopefully, you already did this while the patient was still in the hospital in order to facilitate a smooth transition). You and your patient should visit the doctor soon after discharge from the hospital. Arrange for a complete blood test including test for iron deficiency. Take hospital records with you to the doctor as well as any previous medical records.
The internist will monitor recovery of the patient's general health regularly for at least an extended period during which brain injury related issues will remain in the forefront. The doctor will also prescribe membership in a health club and services and treatments such as massage that would not otherwise be tax deductible as medical expenses and the doctor will also provide documentation for handicapped parking and other disability benefits. A letter from the doctor will be important to your application for Social Security benefits.
Provide a list of hospital-related medical issues to your internist. These may include incontinence related to the use of a catheter, extreme weight loss and nutritional imbalances related to overuse of liquid nutrition and hospital diet, infections and bed sores, blood circulation in extremities. Take the notebook to the doctor that contains the listings of medical issues, medications and treatment procedures that you prepared when your patient was in the hospital. When you call to make your first appointment, tell the doctor's assistant about the patient's circumstances and ask that sufficient time be allotted for the first meeting.
● Find a neurologist by asking your neurosurgeon to recommend someone who they have worked with and whose work is respected. This relationship could be important if the patient experiences complications (such as shunt infection or failure) that requires a decision about treatment. You can back check the neurosurgeon's recommendation for board certification and inclusion in local and national surveys. It is not important if the neurologist is local since your office visits will be infrequent. Trips to see the neurologist are considered to be tax deductible medical expenses.
There are two major things that the neurologist can do for your patient. First is to deal with the possibility of seizures, especially in the first two years of recovery. If the patient does have a seizure, the neurologist will determine and prescribe appropriate medication. The second valuable service that the neurologist can provide is a letter to be included with your application for Social Security Disability Insurance.
● Get a flu shots, tetanus booster and pneumonia shots. You can get them from your internist or county health department.
● Get the patient's teeth cleaned. This is very important after the hospital experience. It is also tax deductible.
● Contact the National Self-Help Clearinghouse: www.selfhelpweb.org. It provides a directory of national self-help groups and local chapters.
● Locate internet support groups through www.healthfinder.gov and www.selfhelpgroups.org. You can also check by putting "self-help" or other descriptors plus your state, in Google.
● Do a nutrition checkup on the patient and eat in conformity with the pyramid. Add supplements to the diet: A multivitamin plus Calcium, Zinc, Magnesium and Vitamins A, D, E, B complex--check nutritional recommendations for recovery from depletion and trauma and brain injury. If the doctor prescribes supplements the cost may be deductible. Almost all supplements are available in chewable or liquid form. The patient should drink lots of water--at least 8 cups per day.
Although it was published in
1965, Let's Get Well, Let's Eat Right to Keep Fit, and Let's Cook it
Right, by Adelle Davis, are still excellent sources for
health-related diet advice and overcoming the ravages of illness and
hospitalization.
Constructing Your
Team
Internist
Neurologist
Neuropsychologist
Dentist
Useful Publications
To browse additional selections click on
Books.
Dr. Whitaker's Guide to Natural Healing by Julian Whitaker
Family Health for
Dummies: A Reference for the Rest of Us! -- by Charles B. Inlander,
Karla Morales, & the People's Medical Society.
Hydrocephalus: A Guide for Patients, Families & Friends -- by Chuck Toporek & Kellie Robinson
Internal Revenue Service, Publication 502,
Medical and Dental Expenses
http://www.irs.gov/pub/irs-pdf/p502.pdf
Let's Cook it Right -- by Adelle Davis
Let's Eat
Right to Keep Fit -- by Adelle Davis
Let's Get Well: A Practical Guide to Renewed Health through
Nutrition -- by Adelle Davis
Own Your Health: Choosing the Best from Alternative & Conventional Medicine -- by Roanne Weisman with Brian Berman, MD
General Health Periodicals
Bottom Line Health: Wellness Strategies from the World's Leading Medical
Experts
Consumer Reports On Health, Consumers Union
Harvard Women's Health Watch, Harvard Medical School
Health Letter, Public Citizen Health Research Group
Nutrition Action, Center for Science in the Public Interest
Wellness Letter: The Newsletter of Nutrition, Fitness, and Self-Care,
University of California, Berkeley, School of Public Health
Useful Websites
Administration on Aging, National Family Caregiver Support Program
http://www.aoa.gov/carenetwork/default.htm
Benefits checkup--provides a summary of about 1,000 national and local
benefits programs. Sponsored by the National Council of the Aging
with support from AARP, drug companies and others.
http://www.benefitscheckup.org/
Constraint-induced movement therapy
http://www.stroke-info.com/cimt.htm
Constraint-induced movement therapy--A Clinical Review
http://www.vard.org/jour/99/36/3/taub363.htm
Family Caregiver Alliance, National Center on Caregiving
www.caregiver.org
Health and Medical Resources
http://www.esrl.lib.md.us/internet/16
I-Can online community for
people with disabilities
http://www.icanonline.net/
Internet support groups
www.healthfinder.gov
Internet
self-help support groups
www.selfhelpgroups.org
WebMD, family medicine
website
www.webmd.com
Medline Plus--health
information
http://www.nlm.nih.gov/medlineplus/headandbraininjuries.html
Mental health
http://www.mentalhelp.net/
Go to: Chapter 7