Chapter 2
Survival: The First Week
QUITTING THE
OLD PLACE
STARTING YOUR HERO JOURNEY
FOLLOWING YOUR BLISS
|
STORIES FROM THE PATH She was a 45 year
old psychologist, single mother of a beautiful daughter who, The daughter
enjoyed homemaking although she had difficulty with focusing One day when the
mother came late for their baking session she found that her daughter had
already started and was about to put the cookies in the oven. |
Discovery, Decision, Delegation, Determination
● Discovery. Discovering the comatose body of a loved one is, obviously,
unnerving. You may have discovered your spouse, significant other, child,
parent or friend in an extreme state or some time after the incident.
There are
typically two reactions you might experience at this point, other than the total
confusion you must fight off: The first is the “don’t leave
me” reaction and the
second is “what can I do to help.” With the first reaction you might feel
regrets–“why did this happen?” and a sense of
guilt. If you had the second
reaction, however, you will also strongly feel that nothing else matters but the
victim and regrets or recriminations
seem distant and unimportant. There is
only one issue: get this person
to a hospital, determine what is wrong and
develop a plan to do what is necessary to help them survive. The difference in
these two reactions can
be seen dramatically in the case of an airline crash
into the Potomac River
in the winter. Survivors were picked out of the water by
a helicopter but, because of hypothermia, some could not hold on to the survival
gear.
When Lenny Kravitz came upon the scene he saw a survivor struggling in
the water while onlookers watched from the shore. He immediately dove
into the
icy water and aided the woman in her survival. Those who
directed the rescue
efforts from the shore counted on the helicopter and
less direct but safer
methods to do the job successfully.
If your reaction to the
victim was the less direct one then you will need to develop a plan and
resources in order to use the efforts of others most effectively. If your
reaction was to become directly involved you will need
to find hands-on
resources and become a member of the team effort that
will be required. If the
former, then you will want to be involved in
directing efforts, to protect your
detached position and not let the
situation overwhelm you. If the latter, you
will want to join the efforts,
to be supportive and monitor and help the medical
team achieve its goals. Both kinds of help are needed by the patient.
The mortality rate for head
injury patients is very high. For example,
about 90 percent of those
experiencing cerebral aneurism die even after surgical intervention. Of the 10
percent who survive the first week, many
die in the first month from
post-operative seizure. Many of those who
make it to the neuro-stepdown unit
will experience seizures during the
first two years of rehabilitation.
●
Decision. Your efforts to save the patient have involved a number of decisions by which you have delegated tasks and responsibilities. Some of these have the appearance of being legally binding, but this may not bethe case. You have also agreed to hospital rules but these “rules” are not always enforceable. Of course you appreciate what is being done for your loved one and you, but you have been forced to agree to all that has been suggested because of the circumstances. Make a list of decisions and agreements signed by you. You certainly do not want to make waves at
this point, but you should understand agreements and you may want to review them later. You need to prepare a durable power of attorney as
soon as possible.
●
Delegation. In delegating tasks directly or by default, you are the final authority and share responsibility for the patient’s treatment morally and legally. Keep a running list of medical actions taken on the patient’sbehalf. You will be able to check them later against the hospital’s bills.
The efforts that will be expended for the survival and rehabilitation of the
patient will be complicated and substantial and will probably continue
over an extended period.
●
Determination. It is important to replace disorientation with determination and to establish a constructive attitude as early as possible. Being helpful, encouraging and interested in procedures used by themedical staff will help to manage your self-absorption and stress. It is essential not to be disoriented by the situation if you are going to deal
with the complex issues successfully. Rather than asking friends and
family what to do, it would be better to use professional counseling,
such as a life coach. Contact the Coach Referral Service, 866-802-2045, www.coachu.com or the International Coach Federation, 888-423-3131, www.coachfederation.org
Things to
do Checklist
Don’t just stand there, try to become
a member of the care giving team directly or indirectly. In fact, you
already are a member of the team
although you may not realize the extent of your
rights and responsibilities
and lack the technical knowledge and training that,
hopefully, you will
begin to absorb. Given the circumstances and depending
on your
background, there is much you will need to learn about patient care and
advocacy. It is important to be assertive about this because medical staff
do make mistakes and your efforts are needed by the patient.
The nursing shortage makes it highly advisable for you to
get involved in
your patient's care. In order to understand how nurse
staffing levels affect patient outcomes, a study was conducted of
232,342 general, orthopedic
and vascular surgery patients discharged from the
hospital between April 1, 1998 and November 30, 1999 at 168 hospitals in
Pennsylvania. The study found that each additional patient per nurse was
associated with a 7
percent increase in the likelihood of dying within 30 days
of admission and
a 7 percent increase in the odds of failure-to-rescue.
The study also found that dach additional patient per nurse was associated with
a 23 percent increase in the odds of burnout and 15 percent increase in job
dissatisfaction. The study concluded that "in hospitals with high
patient-
to-nurse ratios, surgical patients experience high adjusted 30-day
mortality and failure-to-rescue rates, and nurses are more likely to experience
burnout and job dissatisfaction."
A study by the Harvard University School of Public Health,
reviewed administrative data from 1997 for 799 hospitals in 11 states covering
5,075,969 discharges of medical patients and 1,104,659 discharges of
surgical
patients. The study concluded that "a higher proportion of hours
of
nursing care provided by registered nurses and a greater number of hours of care
by registered nurses per day are associated with better care for hospitalized
patients."
Given the dangers resulting from inadequate care you may
find it absolutely necessary to stay with your patient as much as possible and
to participate
in decisions about their treatment. If possible, enlist
others in this vital work; staying with the patient and actively participating
in their care is
very important and may save the patient's life. If there
are no others
willing to share this work and you have difficulty with hands-on
care,
discuss your problem with a social worker case manager familiar with
health care and caregiving needs.
●
Massage the patient’s feet and lower extremities regularly, strokinglegs towards the heart with light pressure. Stretch the calves of the legs
by pushing the toe of the foot back while holding the heel; rotate ankles. Stretching calf muscles strengthens them and helps circulation. To be effective, continue the procedures as often as possible. The hospital
should supply knee-high compression stockings; if not, get two pairs in
order to rotate them periodically. Ask nurses about related issues
including clotting, or deep vein thrombosis (DVT) and muscle degeneration. Although they cannot express it, massaging does give the patient
comfort and and pleasure and they may tell you so after they come out of their coma
(possibly by expressing interest in reflexology).
●
The mouth of the comatose patient will be permanently open and will become dry from constant mouth breathing. Ask nurses to show you howto swab out the patient’s mouth and do it periodically as needed.
●
Buy a 4"x5" ring binder, paper and dividers. Make sections for names ofattending medical staff listed by date, visitors and cards and other expressions
of concern, important addresses (including e mail), and a journal. Also include
a day planner calendar. Get a small briefcase to carry everything in. If others
are helping you monitor your patient, leave the notebook for them to make
entries on their shift.
● In one section of your notebook, write down the names of all medical conditions mentioned and procedures used for dealing with them. You can then check them out on medical websites.
● During the hospital stay there will be a constant stream of medical personnel visiting the patient. In another section of your notebook, write down the names of all medical personnel that touch your patient and make brief identifying notations next to their names.
●
Keep a list of medications given to the patient and check new
medications
against your list to make sure that the correct medication is being
administered.
●
Because of liability or other
administrative issues some things that might be good for the patient cannot be
carried out by the medical staff. For example, the patient’s hair would have
been shaved off where the incision was made for the operation but, typically,
left alone otherwise. Unless you want to specifically instruct the surgeon to
tell the nurse to cut the hair, it would be simpler and better for everyone for
you to do it yourself. The
nurse will help you get through the tubes and wires
without disruption.
The patient will be cleaner and more comfortable as the
result.
In the case of an aneurysm the patient will pretty much emptied the contents of their stomach, bladder and bowels during their seizure. After they are in the ICU, it is easier to cut the remaining hair than to wash it. The nurse can also provide a cleansing lotion to clean the patient’s scalp after shaving the hair.
Because of the acid in vomit you should also clean the patient’s mouth and teeth with a swab. At the same time check their skin for residues especially in folds around the neck and ears.
● Check catheters, drains and dressings regularly to see that they are clean and functioning adequately. Ask the nurse to show you how they work and what to look for to avoid infection.
● Wash your hands properly and remind medical staff to wash their hands before treating the patient.
● Check visitors to make sure they do not bring in a contagious illness.
● Ask to have an electric fan installed in your patient’s cubicle and run it at a low setting. Notice if the fan begins to accumulate lint after a few days. This could be an indication of otherwise unnoticeable air pollution.
●
Bring in a small radio that has a continuous reverse play tape player that you can put by the patient’s bed. Play soft, pleasant music that you know they would relate to. For example, country and western music might comfort the patient by making her think she was back home with her mother caring for her.● Bring in a small storage unit to hold the radio-tape player and other items. An ideal unit is one made of metal with 3 wire shelves 9"x15"x24" high. It is white and comes with casters (which makes it easier to push out of the way) and is generally available at hardware stores.
● Bring in a small teddy bear or other soft toy animal and an angel pin. Patients shouldn't have the pin on their gown as it could become a problem so pin the angel on the toy animal and keep it in the storage unit.
● Check out patient safety issues with the National Patient Safety Foundation, http://www.npsf.org/
● Write down the names of all medications used. Check them for side effects and alternatives in Worst Pills, Best Pills:
●
There will be times when the ICU will be closed to visitors. You can use this time for other activities. During the first week family and friends will visit but out-of-towners will leave at the end of the week. Make sure that all visitors get to see and touch the patient. There will probably be just enough room for a chair next to the bed. Encourage visitors to sit for a while and to hold the patient’s hand. Let or encourage visitors to pray if they wish; all communication, psychic or verbal, should be encouraged and visitors need some catharsis. Some might consider the gurney bed to be a kind of altar, which is probably not a bad thing.●
Locate the patient’s address book or Rolodex and begin the health bulletins that should be sent out weekly via e-mail, if possible. The first bulletin should simply state the nature of the patient’s condition and the address for replies. If the patient is employed and has a professional career, reference should be made to work arrangements. Pending contracts should be delayed temporarily. Contract monitors and program directors should be informed, business meetings and visits cancelled. A business address should be established to maintain continuity. At this point you should understand that the patient will need an extended sabbatical that may last several years. Therefore, employment contracts will need to be closed down for the "duration."● Check out the hospital library. As you learn new terms you can check them out there and, if you are lucky, they will have a computer that you can use.
● Some hospitals have rooms or apartments on campus that could be available to you, if needed.
● A person identified as a “social worker’ will contact you about the patient. The purpose of the visit at this point is to identify any problems with the patient’s insurance coverage and to establish the line of authority for the patient’s care. Follow up with the hospital's insurance liaison office to make sure bills are processed and submitted properly. Insurance companies reserve the right to refuse payment if claim procedures are not followed exactly as stated in fine print. Many procedures must be "pre-certified" within a specified time period or they will not be eligible and pre-certification does not mean that the claim will be paid as the company may still reserve the right to refuse. You may find that claims are being denied regularly although they appear legitimate and, although the company is required to provide for appeal within a limited time period, this is not easy to do. If the patient is employed in an organization that has a human resource office that is your best source of help. Self-employed and under insured individuals are more vulnerable.
●
If you do not already have a cellular phone you should get one right away. Put all the numbers relevant to the case in the speed dialer including doctors offices and hospital departments as well as friends and family.
Useful Publications
To browse additional selections click on
Books.
Aiken, Linda H.; Clarke, Sean P.; Sloane, Douglas M.; Sochalski, Julie; and
Silber, Jeffrey H. "Hospital Nurse Staffing and Patient Mortality, Nurse
Burnout, and Job Dissatisfaction," JAMA, 288/16 (October 23, 2002)
http://jama.ama-assn.org/cgi/content/288/16/1987
Brain Injury Association of Maryland. Brain Injury Guidebook. August
1996.
Breslin, Jimmy. I Want to Thank My Brain for Remembering Me. New York: Little, Brown and Company, 1996.
Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. Facts About Concussion and Brain Injury. Washington DC: U.S. Department of Health and Human Services.
Franklin, Jon and Doelp, Alan. Not Quite a Miracle: Brain Surgeons and Their Patients on the Frontier of Medicine. Garden City NY: Doubleday & Company, 1983.
Gronwall, D., Wrightson, P., and Waddell, P. Head Injury: The Facts (second edition). New York: Oxford University Press, 1998.
Mayo Clinic. Understanding Brain Injury: A Guide for Employers. Mayo Press, 2000.
Mayo Clinic. Understanding Brain Injury: A Guide for the Family. Mayo Press, 2000.
Mitiguy, Judith S.; Thompson, George; and Wasco, James. Understanding Brain Injury: Acute Hospitalization–A Guide for Families and Friends. Boston MA: J.R. Publishing.
Needleman, Jack; Buerhaus, Peter; Mattke, Soeren; Stwart, Maureen; and Zelevinsky, Katya. "Nurse-Staffing Levels and the Quality of Care in Hospitals," The New England Journal of Medicine 346/22 (May 30, 2002): 1715-1722. http://content.nejm.org/cgi/content/346/22/1715
Rose, Eric A. Second Opinion: The Columbia Presbyterian Guide to Surgery. New York: St. Martin's Press, 2000.
University of Iowa, Hospitals and Clinics. Acute Brain Injury - A Guide
for Families and Friends. 1995 (revised 2000). Available online:
http://www.vh.org/adult/patient/neurosurgery/braininjury/index.html
Vertosick, Frank, Jr. When the Air Hits Your Brain: Tales of Neurosurgery. New York: W.W. Norton & Company, 1996.
Way, Lawrence W. and Doherty, Gerard M., Eds. Current Surgical Diagnosis & Treatment. New York: Lange Medical Books/McGraw-Hill, 11th Ed., 2003.
The Rights of Patients: The Authoritative ACLU Guide to Patient Rights (Third
Edition) -- by George J. Annas
Useful Websites
Aneurysm information
http://www.columbia.edu/~mdt1/
Deep vein thrombosis (DVT)
http://www.dvt.net/
National Institute for Neurological Disorders and Stroke information site
http://www.ninds.nih.gov/health_and_medical/disorders/ceraneur_doc.htm
Trauma, emergency and intensive care neurosurgery index
http://www.bgsm.edu/bgsm/surg-sci/ns/trauma.html
Best Neuroscience Website
http://uscneurosurgery.com/links/best_neuroscience_links.htm
The Coach Referral Service (Counseling by a life coach): www.coachu.com
or
866-802-2045
Medical publications, www.accessmedbooks.com
The International Coach Federation, 888-423-3131,
www.coachfederation.org
What is acquired brain injury?
http://www.methodisthealth.com/rehab/braininj.htm
Glasgow Coma Score
http://www.trauma.org/scores/gcs.html
National Patient Safety Foundation
http://www.npsf.org/