Chapter 3
Survival:The Second Week
BREAKING OUT IS
FOLLOWING YOUR BLISS PATTERN
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STORIES FROM THE PATH The ICU nurse was pleasant and efficient, as far as I knew. She raised horses on the side and was a robust and likable young woman. I waited impatiently with other visitors outside the ICU, amidst stored gurneys and wheel chairs, for afternoon visiting hours to begin. Finally the signal came and we made our careful way through the large swinging doors, oversized for the sake of the gurneys. As others went in different directions to see their loved ones, I walked straight ahead to the tiny cubicle, overloaded with monitors, where Jane was kept. I looked first at the array of monitors above her bed. And then my eyes dropped to the comatose figure half propped up in the bed surrounded by the various tubes that went in and out of her body and then, casually, under the bed where tubes and wires hung down. I noticed then the large, glistening, red puddle on the floor and began a struggle in my mind that probably only took a second but seemed an endless process, to think the words, form the words, speak the words and focus them on someone--the pleasant nurse--and tear them from my throat: “Blood under the bed.”
The nurse
reacted quickly as if in an emergency drill after a klaxon has gone off. The
ICU was closed again while Jane was attended to and the blood cleaned up.
Afterwards the nurse reassured me that the situation had been caught in time.
Somehow, the peripheral IV had pulled out of Jane’s arm or malfunctioned, but
she probably hadn’t lost more than one pint of blood. |
The length of time that your patient will spend in the ICU depends on how they
respond to treatment and, therefore, cannot be predicted with certainty.
However, if the patient is in a coma and their CSF has blood in it, the process
may take several weeks. Ask an attending nurse whether the coma is
induced; if you know that it is, you won't have to worry about when they will be
coming out of it.
Their Team
A hospital consists of a coordinated collection of administrative units that
function as teams to provide medical services. You will encounter several of
them as well as departments of the hospital during the patient’s extended stay.
It is important to learn how to relate to the individual teams and team members
that are working on your behalf. This may involve something of an
apprenticeship and training, but what you learn will serve you in the
post-hospital rehabilitation period when you will be responsible for putting
together your own team. Caution: be careful not to become subjectively involved
with hospital teams. Remember, you are the ultimate employer who is contracting
for medical services.
● The rules. Hospital activities are coordinated on the basis of rules,
orders and instructions. There are procedural rules to ensure effective
treatment and technical standards for procedures and There are also
administrative rules concerned with coordination of activities and with
liability issues. In addition, each operational unit has its own rules. These
rules have the greatest effect on the patient’s partner since they regulate
visiting times and access to hospital resources.
● The social worker. The hospital social worker will contact you, as the
party responsible for the patient, soon after the patient is hospitalized. You
may have the expectation that the social worker will help you with the difficult
problems related to your crisis and, perhaps, explain the hospital resources and
procedures that are available to you and the patient and that will be used in
the case. You might expect this because of the generally understood notion of
social work as it appears in the Occupational Outlook Handbook published by the
US Department of Labor.
Social work is a profession for those with a strong desire to help improve people's lives. Social workers help people function the best way they can in their environment, deal with their relationships, and solve personal and family problems.
Social workers often see clients who face a life-threatening disease or a social problem. These problems may include inadequate housing, unemployment, lack of job skills, financial distress, serious illness or disability, substance abuse, unwanted pregnancy, or anti-social behavior. Social workers also assist families that have serious domestic conflicts, including those involving child or spousal abuse.
Through direct counseling, social workers help clients identify their concerns, consider effective solutions, and find reliable resources. Social workers typically consult and counsel clients and arrange for services that can help them. Often, they refer clients to specialists in services such as debt counseling, childcare or eldercare, public assistance, or alcohol or drug rehabilitation. Social workers then follow through with the client to assure that services are helpful and that clients make proper use of the services offered. Social workers may review eligibility requirements, help fill out forms and applications, visit clients on a regular basis, and provide support during crises.
Unfortunately, this kind of assistance will probably not be offered to you by the hospital social worker who is mainly concerned with the hospital’s welfare. What you can expect is that the social worker will check to see the nature and extent of your insurance coverage. They will also apply on your behalf for pre-certification for procedures requiring it. They will also arrange for alternative sources of treatment for the patient if their insurance is found to be inadequate. They will also arrange for the patients discharge from the hospital and available post-discharge treatment.
It is essential to understand clearly the extent of your insurance coverage and procedures that your insurance provider requires you to follow as well as time constraints and methods of appeal. You will need a copy of the policy and any guidelines the company provides. To those untrained in the arcane and solipsistic language of "insurances," this may be an impossible task. There is lots of help available for the asking, however, beginning with the hospital social worker who should be familiar with your insurance provider. You should also check with the hospital's insurance liaison office for advice on reporting requirements. Outside of the hospital there are state agencies such as the insurance commission and local consumer assistance agencies such as those found at senior centers or community centers. AARP is one of several non-profit organizations that provides counseling and assistance. These are listed in Search
You and your patient/partner will benefit from the services of a social worker
who fits the description from the Occupation Outlook Handbook, given above. However, you must make
arrangements for those services on your own by contacting the appropriate public
agency, an organization like Visiting Nurse Association or an independent
provider.
● Using the hospital resources
Hospital
facilities are often built within a campus or reservation plan. A special
parking pass is usually available to the patient’s partner on request. Some
hospitals have a limited number of hotel-type rooms available on the reservation
for use by the partner and may maintain a list of rooms available nearby, some
in private homes or B and B’s.
A receptionist inside the lobby is the best place to enquire about facilities
and get oriented. Not all facilities are what they seem, however. Using
special donations, one hospital installed a nicely landscaped garden area
designated for patient recreation that, in fact, became a smoking area.
However, while the patient is still in the ICU, the library may become your most
important resource.
Advocacy
The caregiver/partner is the patient’s advocate. Advocacy with reference to
institutions providing health care has come to be identified with the role of
the ombudsman who monitors the provision of health care for serious shortcomings
and lapses in quality. From the point of view of the patient’s partner,
however, advocacy means being there for the patient when the patient is totally
vulnerable. It is a form of preventive quality control and extends from the
provision of medical care to other aspects of the patient’s interests that may
suffer from lack of oversight.
Looking at the medical care system and the hospital in particular it is important to understand that medical care is organized and provided on an authoritarian basis. The hospital administration is hierarchical as are the medical teams that work within that administrative structure.
The strength of this method of organizing is also its weakness. Medical care is provided on the basis of orders and there is little leeway for interpretation or improvising. Given their dependency relationship it is very easy for caregiver/partner and patient to become cooperative and obedient. Doctors, especially, do not always like it to have their orders questioned and will not willingly explain specifics of treatment in a meaningful way. Yet, it is the responsibility of the advocate to observe and question prescribed medicines and procedures in the same way that they would observe and question any other contractor.
Standard lapses in the provision of medical treatment in hospitals include unsanitary practices and environment, prescription errors, inappropriate treatment modalities and medication and harassment, to mention a few of the obvious. The caregiver/partner must be vigilant and willing to speak up on the patient’s behalf. Due to the structure of authority, most often an attendant nurse cannot or will not question a doctor’s prescription or failure to prescribe. Infection has been found to be a primary killer in hospitals and most infection is passed through direct contact by doctors, nurses and other medical staff.
Another, more insidious and long-term “infection” that can undermine long-term recovery is the authoritarian culture of the hospital and provision of medical care. It is a quasi-military system where unquestioned leadership operates within a top-to-bottom hierarchy. The patient and partner must avoid becoming part of the medical hierarchy as well. In the extreme, doctors expect everyone to obey their orders including the patient and those who are responsible for the patient. They are the captain of the ship and mutiny is subject to court martial.
Whether or not this approach is justified for the sake of effective medical treatment, the long-term problem that can arise from appeal to authority is that effective long-term recovery is based on the educational model. The major long-term objective of recovery, independence, cannot be achieved within the authoritarian structure used to provide medical care. An authoritarian attitude by the caregiver leads to co-dependency and undermines the partnership relationship with the patient and with it, long-term recovery objectives.
Finally, advocacy is also directed at institutions and governments in order to
bring about policy change. Caregivers and patients stand to gain during the
long period of recovery from enlightened policies and adequate resources. It
is, therefore, a natural extension of advocacy for the individual patient to
become an advocate for all patients. The results of such advocacy can be seen
in the Americans with Disabilities Act and in the greater availability of
educational resources at state and local level, such as the acquired brain
programs established in California community colleges.
Your Team
It takes a
team (if not a village); but, as the patient’s partner, you will have to make your own team. Your
friends, associates, family, even your significant other will probably not want
to be on your team. In fact, you might not want them on your team if you
weren’t so needy. Their attitudes reflect general beliefs and attitudes about
illness itself as well as confusion and conflict about the appropriate behavior
one should display towards people who are ill.
● The etiquette of illness and hospitalization. You may have wondered what might have transpired if your partner had the onset of their illness while at a dinner party. It would be reasonable to suppose that someone would dial 911 and the rescue squad would come to begin emergency treatment. However, Vogue’s Book of Etiquette (1948 edition), presents a different perspective:
When a guest has arrived at his hostess’s house, no matter how boring the party may be, there is no way of getting out of it before the usual time (see “When to Go Home,” page 469), unless there is a real emergency…If one feels suddenly ill, the best thing to do is to go to the hostess and explain, and leave without ostentatious farewells to the other guests. The point is that one should try to make his departure as inconspicuous as possible. And this is why it is easier to leave a roomful of people after dinner than it is to leave the dining-room table.
If one suddenly feels ill at the dining-room table and is sitting next to the hostess, an excuse need be made only to her: “I’m so sorry to be such a nuisance, but suddenly I feel rather ill; I wonder if I might lie down for just a moment.” An older man—or any man guest at a small dinner—is taken by the host to his room; at a very big dinner, the butler would accompany the guest. The hostess should always accompany a woman guest. If one is not sitting next to the hostess, an excuse must be made to one’s dinner companion as well as to the hostess. All this is, obviously, a nuisance for the hosts, no matter how politely they protest, and a guest should avoid such situations if possible. One should use all one’s good sense and self-discipline to avoid leaving the dining-room table. An empty chair during a meal is conspicuous, inconvenient, and awkward.
It would be even more awkward if the guest had a stroke at the dining-room table and the medics refused to wait until after dessert and coffee. Vogues advice might have seemed odd even in 1948, after all the new realities of World War II. But, there is an underlying value judgment that is probably universal, to blame the victim. Illness is always inconvenient for everyone; a sudden onset even more so. That being the case, it is interesting that so little attention is given to the problem in etiquette books, which focus almost entirely on formal occasions and celebrations.
To be more relevant, some contemporary etiquette books attempt to include a broader range of circumstances such as hospital visits. But, still, Miss Manner’s Guide to Excruciatingly Correct Behavior, simply states: “Real, old-fashioned, in-person calls are paid upon a birth and death and, if appropriate and welcome, on the occasion of an illness.”
The question is whether there are any meaningful guides to appropriate behavior
towards those who are ill. Without some guidance in this matter, those who
might visit are unsure of how and when to do so and those who do visit are often
confused about why they are there and how to act. Disorientation is
understandable given the conditions—obstacles from equipment in tightly cramped
spaces. Two useful sources of information about hospital visits are listed
below.
Things to do Checklist
● Get a cell phone. It doesn’t have to be fancy and basic service will be
adequate. Ask around to find someone who has upgraded and will give you their
old phone. To find an organization that recycles used cell phones search
"used refurbished cell phones" using google or another search engine. A
typical company,
http://www.recellular.net/brochure/site_map.asp.
● Get a notebook computer; even better, get a hand-held (Palm Pilot) with folding keyboard accessory and download files to your desktop. It doesn’t have to be the latest model but it should be small, since you will be carrying it with you to the hospital. It should have a modem so that you can use the internet. Call your local computer users group for advice. Some groups collect and redistribute computers free to handicapped individuals and their caregivers. Also, Dell, Gateway and other sources sell refurbished computers.
● If you have not used the internet, go to a public library that has computer resources and ask the reference librarian to check you out. Check the hospital library for computer resources. They may have a place where you can use your own computer and their telephone connection. Check local colleges and universities for library access. A community college is probably your best bet because it is easiest to access and will have other resources that will be useful to you such as a fitness center and, later in recovery, supportive services. You should be able to enroll for access to the fitness center and, once enrolled, you will have access to library, computer labs and other resources. A local community center may also have computer and other resources available at low cost.
● Get a camera. It doesn’t have to be fancy, a throw-away or Polaroid camera will do fine (use low-light film). Take pictures of the hospital, the ICU, the patient hooked up in the ICU, visitors and what ever seems meaningful. The patient may lose several years of memory from before the incident until an indefinite period after. The photos will show what happened during that period.
● Get a record book for visitors to sign or use a section of your ring binder notebook. Also get blank greeting cards, the kind that say “Thank You” on the front. Send these to people who visit.
● Begin producing a weekly medical bulletin and send it to people listed in the
patient’s address book. Just tell the facts about the case using and explaining
medical terms. Include visiting hours and directions to the hospital.
● Check the type of mattress being used. Several types are
available; you need the best one to prevent bed sores. If the patient's
insurance will not pay for the best, tell the nurse or ICU supervisor that you
will pay the difference.
●
Learn the symptoms of hospital acquired disease (Internet search using "hospital
acquired disease, nosocomial infection") and look for them daily:
Dehydration--reduced urination
(30 cc per hour or less)
Mouth deterioration--severe dryness, bleeding gums
Pneumonia--light coughing
Hydrocephalus--Glasgow Coma Score
Infection, sepsis,
nosocomial infection--local or
systemic: fever
Local infection at entry ports or other skin breaks--pain,
redness, pus, swelling, odor, drainage, heat at the site.
Infiltration caused when an IV penetrates through a
vein--pain, redness
Bed sores
Peripheral vascular disease, deep vein thrombosis,
clotting--localized pain in legs
Urinary tract infection; can result in sepsis, blood systemic
infection, in the extreme
Medication errors: Observe the 5 rights: Right patient, right
time, right form, right route. (advocate should ask "what is that you're
giving the patient?")
●
Contact the local hospice. They can provide support to help you get through the emotional
crisis, and will follow through with home visits after your patient comes home
from the hospital. Hospice
care is covered by Medicare and Medicaid and is not just for those who are dying.
In order to be covered, a plan of care must be established before services are provided. The following are covered hospice services: nursing care; medical social services; physicians' services; counseling services; home health aide; medical appliances and supplies, including drugs and biologicals; and physical and occupational therapy. In general, the services must be related to the palliation or management of the patient's terminal illness, symptom control, or to enable the individual to maintain activities of daily living and basic functional skills.
Additionally, there are other services that may be provided under the hospice benefit, subject to special coverage requirements. Continuous home care may be provided in a period of crisis. This consists of primarily nursing care to achieve palliation or management of acute medical symptoms. A minimum of 8 hours of care must be provided during a 24-hour day.
Also, short-term, inpatient care is covered, as long as it is provided in a participating hospice unit or a participating hospital, or NF that additionally meets hospice standards. Services provided in an inpatient setting must conform to the written plan of care. General inpatient care may be required for procedures necessary for pain control or acute or chronic symptom management, which cannot be provided in other settings. Respite care is short-term, inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual at home. It may only be provided on an occasional basis and may not be reimbursed for more than 5 days at a time. Respite care may not be provided when the hospice patient is a nursing home resident. (See below for the full act.)
● Check the Federal Privacy Law that covers health service providers in order to understand you need to do to facilitate the provision of health care to your patient.
From 21 December 2001 the private sector amendments to the Privacy Act 1988 (Cth) became operative. The new provisions provide for ten National Privacy Principles (NPPs), found in Schedule 3 of the Act, which apply to health service providers.
Since the NPPs have been effective, two public interest determinations relating to the health sector have been issued by the Commissioner.
Four other significant areas which are monitored by the Commissioner which affect parts of the health sector are in relation to: (See the full act from the website below.)
● Contact a contract social worker case manager who can help you with
insurance claims. You should assume that you will loose money and probably
your coverage if you do not handle claims properly, and the insurance company
will hold you responsible for compliance. The bill for medical services
and hospitalization may be substantial and the insurance company will pay only
what they must. While the case manager will keep all related claims in
order, denied claims should be kept separate and reviewed by a lawyer who
specializes in health insurance law. This should be done in a timely way
since the insurance company will have a tight time limit for using the appeal
process. The appeal process is almost possible for a non-specialist to
deal with and should therefore be left to your lawyer. AARP, your state
insurance commission, and nonprofit organizations are also available to assist
you in this matter.
● Sign up to use a local fitness center. This can be a simple one at the local
community center or college or a more elaborate facility such as a health club.
Meet with the fitness trainer for an evaluation and to get started on a
program. There are two reasons for making this a serious effort. You will need
to be physically strong to help the patient in and out of bed and to accomplish
other tasks. Also, physical conditioning will make you mentally stronger and
more in control of yourself. Shooting baskets and practice passing a basketball
using a wall uses shoulder, arm, stomach and chest muscles and thereby reduces
tension in an area greatly affected by panic and anxiety.
●
Always start the day with a full breakfast. You need the energy.
Constructing Your
Team
Your
patient is your partner
Reference librarians
A contract social worker case manager
A life coach (see Ch. 2)
Hospice
Useful
Publications
To browse additional selections click on
Books.
Department of Health. "The
epic Project: Developing National Evidence-based Guidelines for Preventing
Healthcare associated Infections, Phase 1:
Guidelines for Preventing Hospital-acquired Infections."
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.
Hospital-Acquired Infections, http://www.emedicine.com/ped/topic1619.htm
Loehr, Jim and Schwartz, Tony. The Power of Full Engagement: Managing Energy, Not Time, is the Key to High Performance and Personal Renewal. New York: Free Press, 2003.
Subarachnoid Aneurysm (document)
http://www.americanheart.org/presenter.jhtml?identifier=1192
Rainer, J. Kenyon, MD. First Do No Harm: Reflections on Becoming a Neurosurgeon. New York: Villard Books, 1987.
Sylvester, Edward J. The Healing Blade: A Tale of Neurosurgery. New York: Simon & Schuster, 1993.
Useful Websites
American
Heart Association/American Stroke Association (search engine)
http://www.americanheart.org/presenter.jhtml?identifier=1200000
American with Disabilities Act
http://www.usdoj.gov/crt/ada/adahom1.htm
Association on Higher Education and Disability
http://www.ahead.org/
Centers for Medicare and Medicaid Services, Hospice
Services
http://cms.hhs.gov/medicaid/services/hospice.asp
National Association of Social Workers, on online Register of Clinical Social
Workers
http://www.naswdc.org/
Office of the Federal Privacy Commissioner, Federal Privacy Law
http://www.privacy.gov.au/act/
US Department of Labor, Bureau of Labor Statistics.
Occupational Outlook Handbook, online version
http://www.bls.gov/search/ooh.asp?ct=OOH
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