"Taking notes has always helped me con-
trol panic, and taking notes shows doc-
tors that you are paying attention, that
their time is not wasted in explanation.
The prime reason for taking notes, how-
ever, is simply to have an accurate record
of what was said during what is so often
a tense and hurried meeting. You will
want to think about what was said, you
will want to discuss it with others, per-
haps including other doctors. You will be
hearing words you don't understand,
that you may want to look up later in a
medical dictionary. Those notes will be
the foundation on which you will build
your own understanding of what is hap-
pening, that basis on which your deci-
sions about your life, or the life of the
person you are caring for, will be made.
Some people even tape-record medical
conversations, which is even better."
- Adapted from In The Country of Illness
by Robert Lipsyte
C O M M U N I C A T I N G W I T H H E A L T H C A R E P R O F E S S I O N A L S
Who Do I Call?
At any given time, there may be a variety of people
involved in your loved one's medical care. Depending
upon the diagnosis, there may even be a number of doc-
tors from different areas of medicine (specialists) working
with you and the patient. With so many people, you may
feel confused and unsure about who to ask for help.
Some health care professionals may be better equipped
than others to give you information or answers to your
As a family caregiver, you play a major role in
questions. It is important for you to know the appropriate
your loved one's medical care. This means that
person to speak to, depending upon the help you need.
you may be involved in making serious medical
At the time of the office visit or hospital discharge, ask
decisions, performing medical procedures, man-
the doctor who to call if you have questions. Also make
aging medication, monitoring the patient's
sure that you are familiar with each member of the health
health status, and reporting symptoms or health
care team involved in the patient's care.
concerns to the health care team. These are
important responsibilities, which can seem over-
Questions to Ask the Doctor:
whelming if you feel as if you are managing
v What days/hours is the office open?
things on your own. This chapter is about com-
v How are medical emergencies handled?
municating more effectively with health care
v When is the best time to reach the doctor by phone,
professionals. Effective communication can
fax, or email?
help you to:
v Which method of communication does the doctor prefer?
v Who can answer questions if the doctor is not ava i l a b l e ?
s Understand the patient's illness/disability
v Who can you call after hours or when the
s Know what needs to be done to attend to
doctor is away?
the patient's medical needs at home
v Who will have an up-to-date copy of the patient's file,
s Get the most out of your office v i s i t s / a p p o i n t-
including information about his/her condition, treat-
ments with health care professionals
ment plan, and medications?
s Recognize when to call the
doctor/health care professional
7
Members Of The Health Care Team
Physical Therapist (PT)
An individual who is licensed by the state and is educated in
Attending Physician (MD)
identifying, preventing, and correcting problems with the mus-
The supervising doctor who dictates the patient's
cles, bones, and nerves by physically manipulating affected
care. The attending may be the patient's general
areas.
practitioner, or he/she may be a specialist in areas
such as cancer, pain, or cardiology (heart disease).
Occupational Therapist (OT)
An individual who is educated in helping patients retrain
Fellow (MD)
their bodies or minds, and modify living/working arrangements
A doctor who has finished residency training, but
to perform tasks in new ways when recovering from an
is continuing training in a subspecialty. These
injury or illness.
doctors are assigned to work closely with
the attending physician.
Psychologist (PhD)
An individual with specialized training in the psychological,
Resident (MD)
emotional, and behavioral aspects of illness and patient care.
A doctor who is training in a specialized area of
Psychologists can specialize in different areas.
medicine for 3 to 5 years. These are the doctors
whom you will see most on the hospital floors.
Chaplain
An individual who is trained to provide religious and/or spiritu-
Medical Student
al support to patients, their families and their loved ones.
An individual who is still in the process of complet-
ing 4 years of medical school to become a doctor.
Patient Representative/Advocate
A staff member of the hospital who tries to resolve patient
Physician Assistant (PA)
complaints about the quality of hospital care, or hospital
A professional with special training that allows
policies and procedures.
him/her to assist the doctor by performing medical
procedures, ordering medications and tests, and
Hospital Administrator
communicating with patients.
A staff member of the hospital who knows the hospital
policies and standards, and resolves financial, operational,
Registered Nurse (RN)
and personnel issues.
A member of the health care team who assists
physicians by doing health assessments and advis-
ing patients on such things as diet and lifestyle.
On the next page, list all the members of the patient's
Nurses also perform clinical procedures, such as
wound dressings and injections, administering med-
health care team and their specialties. Make sure to write
ications and treatments, and teaching patients and
down their phone numbers and attach any business cards
caregivers how to continue medical care at home.
you have.
Nurse Practitioner (RN, NP)
A nurse with 2 to 4 more years of education and
training than an RN, which enables him/her to diag-
nose complaints, order tests, plan treatments, and
prescribe medications (in some states).
Social Worker (MSW, CSW, ACSW)
A member of the health care team who is trained to
assess patient/caregiver needs and resources, pro-
duce a care plan, give guidance, help coordinate
s e r v i c e s, and provide counseling.
8
3 If the situation is still not improved or you are not satis-
fied with the result, the patient representative should
be notified.
4 Finally, if the problem is still not corrected, you can
report the problem to the hospital administrator.
(adapted from McFarlane & Bashe, 1998)
When Do I Call?
What to do if you have a complaint:
If you are not satisfied with your loved one's
You can call any member of the health care team at any
care or have a complaint, there are strategies
point in your loved one's illness, treatment, and its after-
for resolving the situation. Though your feel-
math. Doctors are very busy and often do not have a lot
ings of anger or frustration may be warranted,
of time for answering questions over the phone. If you
it will not help matters for you to vent these
have basic questions about the care of your loved one, it
emotions to the wrong person or in an improp-
may be best to call the nurse or physician assistant. They
er way. You should try to go through the appro-
usually have more time to help you and can look up infor-
priate channels and allow the hospital and staff
mation in the patient's chart or consult with the doctor.
to take care of the problem.
However, if you have concerns about larger issues, you
should not hesitate to ask for the doctor. For example,
In order to most effectively lodge a complaint,
you should speak to the doctor when:
follow the hospital chain of command:
s You would like to discuss the patient's diagnosis
1 Speak to the person you are dissatisfied
s There is a change in the patient's prognosis
with and give him/her a chance to respond.
s You are concerned about a new symptom
Many times problems arise out of miscommu-
s A new medication is not working or is causing
nications that can easily be cleared up.
negative side effects
s You want to find out about or discuss test results
2 If that result is not satisfactory, you should
s You think you need a referral for home nursing care
contact the primary nurse or doctor of the
patient and make them aware of the situa-
tion.
9
What Do I Say?
Tips for good communication with health care
professionals
s Be prepared before calling.
s Write down your questions.
s Know exactly what information you need to
know and why.
s Make sure that your questions are clear and specific.
s Be concise and stick to the issues.
s If you don't understand something, don't be embar-
Timing is everything
rassed to ask for a second explanation.
s Call in the morning and ask the secretary
s Repeat what was said to make sure that you under-
when the best time is to reach the doctor,
stand what he/she told you.
then call back at that time.
s Take notes or tape record doctor appointments so that
s Leave a message with the secretary in the
you remember what was said.
morning for the doctor to return your call.
Provide the secretary or answering service
Troubleshooting: What to do if...
with all numbers where you can be reached
There is a situation that you think might be an
at certain times, and make sure you are there
emergency:
at those times. This includes home, work, car
s Call 911 immediately if you are sure that the situation
phone, beeper or cellular phone.
is an emergency.
s Some doctors have specific hours when they
s If you are not sure, call the doctor or the emergency
take calls. Find out when this is, and call
room until you reach someone you can talk to.
during those times.
s Make sure you tell the person that you think the
situation might be an emergency.
Other options:
s
v
Use the word "emergency" when explaining the
If you have basic questions, and have
situation.
access to e-mail, ask if you can send the
s Do not hang up until you have the information you
doctor an e-mail.
v
need to help your loved one.
Write down your questions and
concerns and ask the doctor at the
What you might say:
patient's next appointment.
v See if you can get answers to your questions
"I may have an emergency and need to speak to a
doctor."
through other means, such as books, pam-
"I am concerned about [patient] and am not sure if this is
phlets, or the Internet.
an emergency. Can you help me?"
10
A nurse/physician assistant returns your call but you
would like to talk to the doctor:
s Thank the nurse for getting back to you.
s If you are certain that the nurse cannot answer your
question, explain that you would like to speak to the
doctor.
s Explain why you would like to speak directly with the
doctor.
What you might say:
The doctor does not return your call:
s Do not assume the worst. The doctor may be
"I really appreciate your getting back to me. However, I
am very concerned about [patient] and need/want to
out of town or unavailable at the time.
speak to the doctor directly. When will he/she be avail-
s Call the office secretary and ask when the
able to speak to me?"
doctor will be available so you can call back.
s Leave a message with the office secretary
stating that you really must speak with the
doctor as soon as possible.
s Be clear about what the problem is and why
you need to talk to the doctor
What you might say:
"I am worried about [patient]'s condition and
would really like to discuss the diagnosis with
the doctor."
"Will he/she be available to talk to me today?"
"What time do you think he/she will be able to
talk to me?"
"May I leave a message for him/her to call me
back at that time?"
-OR-
"Thank you, I will call back then."
11
M A N A G I N G M E D I C A L C A R E A T H O M E
Know when to call for an ambulance
There are certain instances in which recognizing an emer-
gency and calling 911 can save a person's life. However,
since ambulance service can be extremely expensive when
not covered by insurance, it is important to know exactly
when it is necessary. Always call for an ambulance
if a person...
s is unconscious
Medical Emergencies
s has chest pain or pressure
s has trouble breathing or is not breathing
When caring for someone who is ill, it is vital to
s has no pulse
know how to handle a medical emergency.
s is bleeding severely
Though it is possible to avoid many medical
s is vomiting blood or is bleeding from the rectum
emergencies by closely observing the patient for
s has fallen and may have broken bones
health changes, calling the doctor for advice,
s has had a seizure
and keeping the home safe, emergencies can
s has a severe headache and slurred speech
still arise. Having a plan to follow will help you
s has pressure or severe pain in the abdomen that does
remain calm if an emergency does occur. It can
not go away
also aid those who assist you in caring for the
OR
patient when you are not at home.
s moving the person could cause further injury
Post emergency information:
s traffic or distance would cause a life-threatening delay
To start, fill out the Emergency Information form
in getting to the hospital
at the end of this section to organize and con-
s the person is too heavy for you to lift or help
solidate important emergency information.
If you know CPR or other emergency procedures, you
Make sure that you list contact numbers, includ-
should call for an ambulance before doing anything else.
ing the patient's doctors and other members of
Once you make the call, you can care for the patient until
the health care team. This information should
help arrives.
be photocopied and put in places that are easily
accessible, such as next to the telephone and
(Adapted from Meyer, et al.,1998)
on the refrigerator.
12
Going to the Emergency Room (ER)
s Use good communication skills. Though the ER can be
Most people try to avoid going to the ER at all
a frustrating place, it will not serve you well to take
costs. This is usually based on past negative
your anger out on the staff. Try to be understanding
experiences with the ER. However, there are
and patient, while being assertive. To do this, follow
times when the patient's need for care is
these tips for better communication:
urgent, and you must take him/her to the
h Don't be afraid to speak up if you feel that the
emergency room. Though such a visit is rarely
patient's rights are being violated or if you are not
a pleasant experience, there are some things
satisfied with the patient's care.
h
that you can do to make going the ER more
Tell the health care professional about your dissatis-
faction with care in a direct way that is not demand-
satisfying.
ing or disrespectful.
s If you think that the patient's condition may
h Speak in a way that does not put the health care
lead you to the ER, pack a bag in advance so
professional on the defensive. When talking, use "I"
that you are ready to go if/when the time
statements, such as, "I don't like that my mother is in
comes.
so much pain," rather than, "Why won't you do
something about my mother's pain?" This sounds
s Make sure you are familiar with the patient's
less accusatory, and expresses how you are feeling to
medical history, in case the patient cannot
the other person.
speak for him/herself. Keep a list of impor-
h Be clear about what you and/or the patient need in
tant information, such as past health prob-
order to feel comfortable and content with the care.
lems, allergies, and current medications and
h Listen carefully to what the health care professional
dosages (a "Medication Schedule" is provid-
has to say and ask for clarification to make sure that
ed at the end of this section).
you fully understand what is being said before
s Be able to describe exactly what the patient's
responding.
problem is, when it started, what may have
h Be sensitive to the health care professional's limita-
caused it, and if the patient was given any
tions in his/her ability to help you and the patient.
medication or other treatments.
ER staff members are usually very busy, over-worked
s Know the patient's legal rights and responsi-
and tired. Don't assume that they are just unpleasant
or unwilling to help.
bilities while in the hospital. "A Patient's Bill
s For patients who go to the ER frequently (e.g. sufferers
of Rights" is a document developed by the
of sickle cell disease), try to develop good relationships
American Hospital Association outlining the
with familiar ER staff members. If you are friendly and
patient's rights regarding health care and
treat them with respect, you are more likely to receive
appropriate treatment from staff within the
the same treatment in return.
hospital (see page 17 for a copy of "A
Patient's Bill of Rights").
13
s Know the ER chain of command. If you are
Open the airway Place two fingers under the point of
not happy with the care the patient is receiv-
the patient's chin and lift the jaw. At the same time, place
ing or if there is a problem with a particular
your other hand on the patient's forehead and tilt the
staff member, identify the appropriate person
head back.
to speak to. There is a nurse manager who
oversees the nurses and a chief physician
who supervises the residents and other
Check if the patient is breathing Listen and look at
physicians. You should speak to one of these
the chest to check for breathing. Feel for breath coming
two people for problems with staff on the
out of the mouth on your cheek for 5 seconds. If you do
floor. If you still are not satisfied with the
not hear, see, or feel anything, the patient is not breath-
patient's care, you can always make a com-
ing.
plaint to the hospital patient representative
or administrator (see page 8 for a list of hos-
pital staff).
Check for a pulse Place two fingers over the patient's
Adam's apple and slide the fingers toward you in the
Learn first aid and basic emergency
groove of the neck. Feel for the pulse for 5-10 seconds.
procedures
If you are not familiar with CPR or other emer-
Give "Rescue Breathing" Remove any material from
gency procedures, and would like to learn, you
the patient's mouth or throat. Tilt the head back (see
can take a course from the American Red Cross.
opening the airway), rest your hand on the patient's fore-
The following are some basic tips about first aid
head and pinch their nose closed with your thumb and
and emergencies. You should always call 911 or
index finger. Take a full breath, place your lips around the
an ambulance before performing CPR or first
patient's mouth and blow into his/her mouth until the
aid.
chest rises. Remove your mouth and allow the chest to
fall fully. Continue providing 1 breath every 5-6 seconds.
To locate a Red Cross near you, contact:
American Red Cross
Give CPR Place the heel of one hand over the lower 1/3
431 18th Street, NW
of the breastbone (where the ribs meet the breastbone).
Washington, DC 20006
Place the heel of the other hand on top of the hand on
(703) 206-7090
the breastbone and intertwine your fingers. Lean over the
www.redcross.org
www.nyredcross.org (for the New York area)
patient with your arms straight and begin press down on
the chest about 1-1/2 to 2 inches. Complete 15 chest
Check if the patient is conscious Ask the
compressions, at a rate of about 80-100 per minute. Give
person a question and gently shake his/her
2 rescue breaths (see "Give Rescue Breathing" above).
Continue alternating 15 chest compressions with 2 rescue
shoulders. If there is no response, the person is
breaths.
unconscious.
14
Treat burns Pour cold water on the burned area for 2-3
minutes. Remove any clothing or jewelry that are on or
around the burned area, unless they are sticking to the
burned area. Cover the burn with a sterile dressing. Do
not apply lotions, ointments, or fat (e.g. butter) to the
burn. Do not touch the burned area or burst any blisters.
Do not cover a facial burn.
Treat severe bleeding If you have latex gloves, these
Treat choking Ask the patient if he/she can
should be worn at all times while in contact with blood.
speak or cough. If the person cannot speak,
If not, you can use plastic wrap or layers of cloth. Using a
give the Heimlich Maneuver. Stand behind the
clean pad or dressing, apply direct pressure to the wound
patient, place your fist just above the navel,
for 10 minutes. If no bones are broken, raise an injured
clasp your fist with the other hand, and give
limb to above the level of the patient's heart. Lay the
quick, upward thrusts until the object is
patient down to reduce the chance of shock and minimize
removed or the person becomes unconscious.
blood flow. Apply a bandage over the original pad or
dressing. Wash your hands thoroughly with soap and
If the person becomes unconscious, give two
water after providing care.
rescue breaths. If they do not go in, sweep the
mouth with your finger, then give abdominal
(Adapted from VNAA, 1998 and Meyer, et al.,1998)
thrusts by straddling the person's legs, placing
the heel of your hand (one on top of the other)
directly above the navel and give inward,
upward thrusts. If breathing starts, lay the per-
son on his/her side with the head tilted back
and the top knee bent to prevent rolling for-
ward.
15
Reminder
If the patient has a signed Do Not Resuscitate (DNR)
Order, you must show it to the paramedics immediately.
Otherwise, they are required to perform CPR and other
life-saving procedures. The DNR Order must be kept with
the patient at all times in the ambulance, emergency
Troubleshooting: What to do if...
room, and hospital.
The person is injured, but conscious
1.Assess injuries
2. Call an ambulance (if necessary)
3. Treat injuries (see First Aid)
The person is unconscious
1. Call an ambulance
2. Open airway and check breathing
The person is breathing
1. Place the patient on his side or stomach
(only if spinal injury is not suspected)
2. Wait for the ambulance to arrive
The person is NOT breathing
1. Give "Rescue Breathing"
2. Check pulse
There is a pulse present
Continue "Rescue Breathing"
and keep checking the pulse
until the ambulance arrives
There is NO pulse present
Perform CPR until the ambulance
arrives
(Adapted from VNAA,1998)
16
A Patient's Bill of Rights
Health care institutions must advise patients of their rights under
state law and hospital policy to make informed medical choices, ask if
These rights can be exercised on the patient's behalf by a
the patient has an advance directive, and include that information in
designated surrogate or proxy decision-maker if the
patient records. The patient has the right to timely information about
patient lacks decision-making capacity, is legally incom-
hospital policy that may limit its ability to implement fully a legally
petent, or is a minor.
valid advance directive.
1. Quality of Care
5. Privacy and Confidentiality
The patient has the right to considerate and respectful
The patient has the right to every consideration of privacy. Case dis-
care.
cussion,consultation, examination, and treatment should be conduct -
2. Information Regarding Treatment and Medical
ed so as to protect each patient's privacy.
Team
The patient has the right to expect that all communications and
The patient has the right to and is encouraged to obtain
records pertaining to his/her care will be treated as confidential by
from physicians and other direct caregivers relevant, cur-
the hospital,except in cases such as suspected abuse and public
rent, and understandable information concerning diagno-
health hazards when reporting is permitted or required by law. The
sis, treatment, and prognosis.
patient has the right to expect that the hospital will emphasize the
Except in emergencies when the patient lacks
confidentiality of this information when it releases it to any other par-
decision-making capacity and the need for treatment is
ties entitled to review information in these records.
urgent, the patient is entitled to the opportunity to dis-
6. Right to Information
cuss and request information related to the specific pro-
The patient has the right to review the records pertaining to his/her
cedures and/or treatments, the risks involved,the possible
medical care and to have the information explained or interpreted as
length of recuperation, and the medically reasonable
necessary, except when restricted by law.
alternatives and their accompanying risks and benefits.
7.Appropriate Treatment
Patients have the right to know the identity of physicians,
The patient has the right to expect that, within its capacity and poli -
nurses, and others involved in their care, as well as when
cies, a hospital will make reasonable response to the request of a
those involved are students, residents, or other trainees.
patient for appropriate and medically indicated care and services. The
The patient also has the right to know the immediate and
hospital must provide evaluation,service, and/or referral as indicated
long-term financial implications of treatment choices,
by the urgency of the case. When medically appropriate and legally
insofar as they are known.
permissible, or when a patient has so requested, a patient may be
3. Patient Choice
transferred to another facility. The institution to which the patient is
The patient has the right to make decisions about the
to be transferred must first have accepted the patient for transfer. The
plan of care prior to and during the course of treatment
patient must also have the benefit of complete information and
and to refuse a recommended treatment or plan of care
explanation concerning the need for, risks, benefits, and alternatives
to the extent permitted by law and hospital policy and to
to such a transfer.
be informed of the medical consequences of this action.
8. Possible Conflict of Interest
In case of such refusal, the patient is entitled to other
The patient has the right to ask and be informed of the existence of
appropriate care and services that the hospital provides
business relationships among the hospital,educational institutions,
or transfer to another hospital. The hospital should notify
other health care providers, or payers that may influence the patient's
patients of any policy that might affect patient choice
treatment and care.
within the institution.
9. Research
4. Living Wills and Other Advance Directives
The patient has the right to consent to or decline to participate in
The patient has the right to have an advance directive
proposed research studies or human experimentation affecting care
(such as a living will, health care proxy, or durable power
and treatment or requiring direct patient involvement,and to have
of attorney for health care) concerning treatment or des-
those studies fully explained prior to consent.A patient who declines
ignating a surrogate decision maker with the expectation
to participate in research or experimentation is entitled to the most
that the hospital will honor the intent of that directive to
effective care that the hospital can otherwise provide.
the extent permitted by law and hospital policy.
17
Patients should also be aware of the hospital's obligation to be rea-
sonably efficient and equitable in providing care to other patients and
the community. The hospital's rules and regulations are designed to
help the hospital meet this obligation. Patients and their families are
responsible for making reasonable accommodations to the needs of
the hospital,other patients, medical staff, and hospital employees.
Patients are responsible for providing necessary information for insur-
ance claims and for working with the hospital to make payment
arrangements, when necessary.
A person's health depends on much more than health care services.
Patients are responsible for recognizing the impact of their life-style
on their personal health.
Hospitals have many functions to perform, including the enhancement
10. Continuity of Care
of health status, health promotion, and the prevention and treatment
The patient has the right to expect reasonable continuity
of injury and disease;the immediate and ongoing care and rehabilita-
of care when appropriate and to be informed by physi-
tion of patients; the education of health professionals, patients, and
cians and other caregivers of available and realistic
the community;and research.All these activities must be conducted
patient care options when hospital care is no longer
with an overriding concern for the values and dignity of patients.
appropriate.
11. Knowledge of Hospital Policies
The patient has the right to be informed of hospital poli-
cies and practices that relate to patient care, treatment,
and responsibilities. The patient has the right to be
informed of available resources for resolving disputes,
grievances, and conflicts, such as ethics committees,
patient representatives, or other mechanisms available in
the institution. The patient has the right to be informed of
the hospital's charges for services and available payment
methods.
Patient Responsibilities
The effectiveness of care and patient satisfaction with the
course of treatment depend, in part, on the patient fulfill-
ing certain responsibilities. Patients are responsible for
providing information about past illnesses, hospitaliza-
tions, medications, and other matters related to health
status. To participate effectively in decision making,
patients must be encouraged to take responsibility for
requesting additional information or clarification about
their health status or treatment when they do not fully
understand information and instructions. Patients are also
responsible for ensuring that the health care institution
has a copy of their written advance directive if they have
one. Patients are responsible for informing their physi-
cians and other caregivers if they anticipate problems in
following prescribed treatment.
18
Coping With Home Care
What to expect from the home care nurse:
s On the first visit the nurse will:
Some of the duties required in caring for your ill
h Review the patient's medical history and medications
loved one can be difficult for you to handle on
h Perform a physical assessment of the patient
your own. The patient may require technical
h Identify patient needs
medical care for his/her illness, disability, or
h Develop a plan of care with you, the patient, and the
injury, which you may not feel prepared to han-
patient's doctor
dle. In certain cases, home care services are
s During return visits, the nurse will:
covered by the patient's insurance. Other times,
h Review the patient's plan of care
it is necessary to hire a home care nurse or
h Coordinate services that the patient may need
health aide privately to help with medical
h Educate you and the patient as needed
and/or personal care of the patient. While these
h Report to the patient's physician about health status
people can help to reduce much of the nervous-
Tips for Preparing for Home Care:
ness that you may feel, they can also add a cer-
s Participate in making the care plan with the hospital
tain amount of stress. Having a stranger in
staff and home care agency.
your home takes some getting used to. It takes
s Familiarize yourself with the home care plan and know
time to get to know the home care worker and
what to expect, when the nurse or aide will be in the
to feel comfortable with him/her. There are
home, for how long, and what services will be
some things that you can do to help make the
provided.
transition as smooth as possible.
s Determine how the home care nurse, aide, or others
will be paid. If this service is not covered by insurance,
Consider home care when the patient
needs:
make sure you discuss and agree on the fee for each
s Home assessments for an unstable physical
home care team member.
illness, such as cardiac, respiratory, or kidney
s Know who to call if you need help when the home care
diseases
worker is not scheduled to be there. There should be
s Wound care
someone from the home care team/agency available for
s Incontinence care, including Foley catheters
you to contact 24 hours per day.
and ostomy care
s Have all medications, insurance cards, and hospital dis-
s Diabetic instruction
charge information available at the first visit from the
s Home rehabilitation
visiting nurse.
s Medication monitoring or education
s Ask to be educated about the patient's needs and any-
thing you can do to help when the home care worker is
not in the house.
19
s Keep important patient information handy for
Troubleshooting:
the home health care worker. This includes
Many issues can arise when you are dependent on some-
emergency information, as well as current
one else for the care of the patient. You may find that
medications and advance directives (e.g.
you do not like the way the home care worker is doing
home DNR order, living will, or written infor-
something or that the person does not show up at his/her
mation about the health care proxy).
scheduled time. You need to know the proper way to
handle and resolve these and other problems with home
Making the relationship work:
care professionals in order to make the care plan work.
s Be friendly and polite when first meeting the
home care nurse or aide.
s Find out who is the target person/supervisor you should
s Introduce yourself and tell the nurse or aide
speak to about any complaints or problems. This is
how you would like to be addressed.
usually a nurse who is assigned to the patient's case.
s Introduce the aide or nurse to the patient
Write down these important contact numbers below.
and to others who are frequently in the
s If there is a problem, tactfully raise it with the home
house.
care worker. If you do not feel comfortable with this, or
s Refer to the nurse or aide as Ms. or Mr. ____
the problem persists, discuss it with the supervising
unless he/she tells you otherwise.
nurse who can tell you how to handle the problem or
s Give him/her a tour of the house and point
take care of it for you.
out where important things are kept.
s Do not hesitate to speak to the home care agency if
s Inform the visiting nurse or aide of any
you feel that you need more help in the home. There
changes since the last visit.
may be other resources available to you through your
s Ask if you can help the nurse or aide with
insurance or other means that can be of help.
anything periodically.
s Unless assisting the nurse or aide with some-
See Appendix F for how to find home health care services
thing, try to stay out of the way.
in your area.
s Be patient. Being in your home is a new
experience for the home care worker. It will
Contact numbers:
take some time for him/her to get adjusted to
the situation.
(Adapted from McFarlane & Bashe, 1998)
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J U G G L I N G F I N A N C I A L E X P E N S E S
Budgeting Money
The best way to get a handle on the patient's finances is
to work out a budget. Start by writing down all regular
monthly expenses, including:
s rent or mortgage payments
s phone and utility bills
s transportation (car payments, gas, public transporta-
tion, tolls, parking)
Whether or not you share finances with the
s insurance premiums
patient, as a caregiver you will likely find your-
s food
self involved in financial matters. Even if the
s clothing
patient is not your spouse or partner, you may
s child-care or elder-care costs
find that you want or have to contribute your
s medical expenses (prescriptions, medical supplies, other
own money to the care of the patient. This can
medical costs)
be an expensive commitment, especially if you
s monthly loan payments
and/or the patient have had to cut down on
s taxes
hours at work or take leave from your jobs.
s tuition
Medical bills and prescriptions can become very
s legal and accounting fees
costly, leaving you wondering how you and/or
s other household expenses
the patient will make ends meet. Although
s any other monthly expenses
financial problems can become overwhelming,
it is important not to panic. There are ways to
better manage money, receive financial assis-
tance, and get the most coverage possible from
the patient's health care benefits.
21
Once you have written down all of these
Handling Health Insurance
expenses, add up the total, deduct this from
Receiving huge medical bills from the hospital or doctor
your monthly income, and review the amount
can cause a lot of anxiety. Reading the bill, figuring out
left. If you find that cash is low, you may want
how it will be paid, and determining which services
to try some of the following options:
should be covered by the patient's insurance company are
some of the problems you may face. Understanding the
s Prioritize bills. First pay for essential
patient's health care benefits can be confusing. Dealing
expenses, such as food, shelter, and
with health insurance companies can be frustrating.
medication. If possible, postpone payment
However, there are some things that you can do to help
of larger medical or credit card bills.
s
minimize the stress associated with these activities.
Ask your utility companies (gas, electric,
phone) about assistance programs they may
Read the insurance policy thoroughly
offer to help people who cannot meet pay-
Whether the patient has private health insurance,
ment.
Medicare, or Medicaid, there are certain services that the
s Find out whether the pharmaceutical compa-
plan will and will not pay for. It is important for you to
nies that produce your family member's med-
know what is covered by insurance in order to follow pro-
ication offer prescription medicine assistance
cedures that will maximize coverage, such as getting a
programs.
referral before seeing a doctor. It will also help to ensure
s Make sure your family member is receiving
that the patient is getting all benefits to which he/she is
his/her Social Security benefits (Retirement,
entitled. If you have trouble understanding the insurance
Disability, Survivor, Supplemental Security
contract, ask someone with more experience to help you
Income (SSI), or Black Lung benefits).
s Look into dependent-care tax exemptions or
or call the insurance company with specific questions
credits for family caregivers.
about what is covered.
s See if there are family caregiver assistance
Check medical bills
programs offered at your local agencies on
It is not uncommon to be billed incorrectly by the hospital
aging.
or doctor. Look over each bill carefully and make sure
s Consider other ways to bring in income, such
that the patient is not being billed for services that were
as working from home, asking family mem-
not received. If you find charges that are doubtful, call
bers for a loan, or requesting help with bill
the billing department of the hospital or doctor's office for
payment from other household members.
clarification.
Appendix C lists agencies that can assist you in
obtaining these and other financial options.
22
Don't panic about big medical bills
s Submit a claim as soon as you receive a medical bill.
If a huge medical bill arrives asking for payment
s Double check your work to make sure the information
of the "amount due," don't panic. Many times,
on the claim form is correct.
bills are sent out before payments are received
s Make sure to attach all supporting documents (e.g.
from the insurance company. This makes it look
copies of bills, receipts).
like the patient owes the hospital or doctor
s Keep photocopies of bills, submitted claims, payment
more than they really do. It can take up to 2
stubs from the insurance company, explanations of
months or more for insurance companies to
benefits, and insurance company findings.
process claims and send out reimbursement
s Call the insurance company if you have any questions
payments. Therefore, bills that are received may
or are unsure about anything to do with making a
not reflect what is really owed. If you are con-
claim.
cerned about the balance on the patient's bill,
s Keep notes on your phone conversations, including the
you can call the billing office at the hospital or
name of the insurance agent, the date of the call, and
doctor's office and ask if there are any insur-
the information you were given.
ance claims pending on the patient's account.
Be persistent
If so, you can wait until all payments are
Claims may be denied for any number of reasons, includ-
received from the insurer before paying the bill.
ing mistakes on claim forms, missing documents, or vary-
If there are no claims pending, you can review
ing practices of claims adjusters. If the patient's claim is
the health insurance benefits to ensure that all
denied, you can always send it again and try for a differ-
of the billed services are not covered by the
ent result. It may also help to ask the patient's doctor to
patient's insurance. If you find that there are
write a letter to the insurance company, explaining the
services on the bill that should be covered by
need for certain procedures. Sometimes, this will lead the
the patient's insurance, you can either tell the
insurance company to re-examine a claim. If you have
hospital or doctor's billing office, or submit a
tried these suggestions, and are still not happy with the
claim to the insurance company yourself (see
result, you can ask the insurance company about their
below).
procedure for resolving disputed claims. You can also con-
Submit claims properly
tact a lawyer or your state insurance regulator.
Some doctor's offices or insurance companies
require the insured person to submit claims,
(Adapted from McFarlane & Bashe, 1998)
rather than the billing office. If you have to fill
out claim forms and submit them, be sure to:
23
About health insurance
PRIVATE INSURANCE:
s Insurance that is covered under a group plan from an
MEDICARE:
employer or purchased by an individual.
s Health insurance program funded by the fed-
s There are basically two types of private insurance:
eral government.
h Fee for Service Plans require you to pay premiums
s Offers health care benefits to people 65 or
and a deductible, then you (or the doctor's billing
older, and to anyone under 65 who has been
office) submit a claim to obtain reimbursement for
collecting Social Security disability for at least
the cost of care.
2 years or has a serious disability, such as
h Managed Care Plans (HMO/PPO) are prepaid health
kidney failure.
insurance plans that cover the cost of services within
s Medicare has two parts.
a network of health care providers. Patients choose a
h Part A covers institutional care, such as
primary care physician who they must see for refer-
hospital costs, rehabilitation, home health
rals to other specialists. These plans do not usually
care, and hospice.
have a deductible for in-network visits, but do charge
h Part B covers medical expenses including
a small co-payment for doctor's visits and prescrip-
doctor's bills, outpatient tests, lab services,
tions.
and home health care. There is a monthly
charge to the patient for coverage from
For More Information:
Part B, and a deductible is also applied.
Medicare Hotline: (800) MEDICARE (633-4227)
MEDIGAP:
Medicare Rights Center: (800) 333-4114 or
s Private health insurance policy offered to
(212) 869-3850 (in New York City)
people who are eligible for Medicare.
s Pays for those services that are not covered
American Association of Retired Persons (AARP):
by Medicare, such as deductibles, co-pay-
(800) 424-3410
ments, and prescriptions.
Federal Hill Burton Free Care Program:
MEDICAID:
(800) 638-0742; (800) 492-0359
s Health insurance program funded by federal
and state governments.
National Insurance Consumer Help Line: (800) 942-4242
s Offers health care benefits to those with low
income, such as those who are collecting SSI,
welfare, or public assistance.
s Eligibility depends on monthly income, per-
sonal assets, and state regulations.
s Covers most medical care and nursing home
costs, but is not accepted by all
hospitals/doctors.
24