Navigating the complex world of hospitals and
medical treatment can be challenging under the best of circumstances. When
someone is seriously ill, the situation can become even more difficult. For
this reason, some people choose to hire a professional patient advocate (also
called a hospital advocate or nurse navigator) to speak on their behalf and
help guide them through the decisions involved in treating whatever condition
they may be suffering from. If you have a loved one who has been
hospitalized, you can fulfill this role yourself. If you are a well-organized,
assertive, and caring person, you can help a friend or family member as their
advocate.
1. COLLECTING INFORMATION FOR THE ADVOCATE
1 Do some background research.
The more familiar you are with the health care system,
the insurance system, and the specific medical condition your loved one is
grappling with, the more effective you can be as an advocate.[2]
·
For example, take some time to learn how the hospital
bureaucracy works. What is the "chain of command?" Who does your
loved-one's doctor or medical team report to?
·
Learn about the patient's health insurance policy and/or
Medicare aid. Look into the process of appealing when aid is denied.[3]
2. Collect the patient's
medical documents.
Gather all relevant documents related to your loved-one's
hospitalization and treatment.[4] This might include test results, explanations of benefits,
bills, and prescriptions.
Keep all these records in one place and organized in such
a way that you can find whatever you might need to reference later. Keep the
same types of documents together, and organize them by date.
3
Take notes.
Keep a journal or notepad handy at all times. Make
notes every time you talk to the doctor or other health care professionals.[5] These sessions can be very brief, but contain a lot of
information, so keeping track of it all for later later reference can be
helpful.
Make note of who you've spoken to and what everyone
says.[6] Your loved one may be seen by several different doctors
and nurses. Record all their names. This will make it much easier to have
conversations later about the recommendations or information provided by each
physician.
Make sure to note the date of every conversation as
well.[7] Then if you have a question about something you've been
told, you can be specific, i.e. "Last Wednesday you told me X, but now
you're telling me Y instead. What has changed since last time we spoke?"
2. COMMUNICATING WITH AND ON BEHALF OF THE PATIENT
1.
Help keep the patient
grounded.
·
Long hospital stays can be disorienting and confusing,
especially for the elderly. Talk and read to the patient in calm, soothing
tones. Answer their questions in a clear but reassuring manner.[8]
·
Long hospital stays can promote the onset of delirium, a severe
state of disorientation or confusion that can make it difficult for someone to
think, rest, or follow directions.[9] This condition may be made
more likely by certain drugs that may be used to relieve pain, such as
narcotics (analgesics) and sedative hypnotics (benzodiazepines). If you suspect
the onset of delirium, contact hospital staff and ask what assistance they can
provide.
2
Present information
and options to the patient.
·
One job of the advocate is to act as an intermediary between the
doctor and the patient. Chances are, you will end up collecting a lot of very
complex information about the patient's condition and treatment options. Help
clarify the information and treatment options.[10]
·
Keep in mind that this situation may be very overwhelming for
the patient, and there is a lot to keep track of. Don't talk down to the
patient, but do present things in as straightforward a manner as possible.
·
Avoid medical jargon and other technical language when possible.
3
Find out what the
patient wants.
·
Make sure you know what the patient wants, both from you and in
terms of treatment. You can only be an effective advocate if you have a clear
understanding of your loved one's desires. This conversation is best had before
the person is severely ill. It is everyone's best interest to invest time and
energy into living wills, assigning power of attorney, and advance directives
so family and loved ones do not have to grasp at straws when faced with a
health tragedy.
·
Depending on the severity of the health issue, the patient may
or may not feel up to communicating their desires to doctors and other medical
staff.
·
Part of this process may involve helping the patient weigh their
options to make the best decision for treatment.[11] Being familiar with the
patient's values and belief systems can be important, especially if his or her
condition is life-threatening.
·
4
Look into advance
directives.
·
It is a good idea to find out if the patient has an advance
directive. This is a document that provides the hospital with instructions as
to what should be done if they become incapable of expressing their desires.
·
This might include specific instructions, such as a desire not
be put on life support if brain death occurs. Or, it may include instructions
to designate a certain person as responsible for making decisions on the
patient's behalf (a proxy directive, also called "durable power of
attorney"). Ideally, if there is a
proxy directive, it should designate you, the advocate, as the patient's proxy.
·
If the patient does not have an advance directive, it may be a
good idea to encourage them to complete one, and to help the patient through
this process. The paperwork for an advance directive varies from one state to
the next. You can find this paperwork here: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
5
Communicate the
patient's questions and concerns to the doctor.
It is your responsibility to ensure that any questions or concerns the patient has are conveyed to the doctor. This is especially true if they feel incapable of or reluctant about asking questions.
It is your responsibility to ensure that any questions or concerns the patient has are conveyed to the doctor. This is especially true if they feel incapable of or reluctant about asking questions.
·
Ask for clarification when necessary. Doctors and hospitals, for
example, use a lot of acronyms. If a doctor is talking in jargon you don't
understand, ask them to explain things in simpler language.
·
If you are a non-family member, the patient will need to sign
some paperwork so that healthcare workers can share information with you. Ask
about release of information paperwork so that you can legally be informed
about the patient's treatment.
6
Speak assertively on
the patient's behalf. Your most
important role as advocate is to make sure the doctor and other hospital staff
understand and follow the patient's wishes. This will require you to be clear
and politely assertive.
Use plain language to tell the doctor what the patient's desires
are.
Ask questions about follow up treatments, next steps, and what
will happen as a result of different test outcomes. For example: "if this
test is positive, what are our options?"
Get a second opinion if necessary. If your loved one wants a
second opinion, or what the doctor is telling you doesn't seem right based on
the information you've gathered, be direct about asking for and seeking a
second opinion.
3. MAKING LIFE EASIER FOR THE PATIENT
1.
Help with medication
regimens.
For serious health conditions, the number of medications a
patient must sometimes take can be overwhelming. As an advocate, you can help
your loved one by keeping a list of which medications they are taking.
Make note of which medications should be taken at what time.
Provide reminders or any other assistance the patient may ask for to ensure
medications are taken on schedule.
Use a medication planner with time slots designated for dosing
schedules. There are daily medication planners and multi-time slot medication
planners to make this more successful if the patient has multiple doses of
medication throughout the day. You can also look into different medication
reminder apps for your smartphone.
2
Do the paperwork.
You can also help your loved one by taking care of necessary
paperwork for them. This will be one less thing weighing on their mind during
this stressful time.
·
This could include forms and paperwork from the hospital itself,
as well as insurance documents and applications for employer-provided benefits.
3
Watch for errors.
Hospitals can be chaotic places, and errors by doctors,
nurses and other staff are common. This problem is especially pronounced in the
administration of medication.
Make sure your loved one is receiving the correct medication in
the correct dose, and that they do not have an allergy to anything the doctor
has prescribed.
The nurse should verify the medication, allergies and time of
dose with the patient to avoid and mistakes. Nursing staff observe the five
rights of medication administration — right patient, right dose, right drug,
right time, and right route.
Take special note of any new medications, and ask questions
about how long and when the medication should be taken, as well as what side
effects it might cause.
4
Provide other services
as needed.
An advocate is often asked to take on a variety of other tasks.
This could be anything from transportation to caring for pets.
Take on any task that the patient asks you to and that you are
comfortable and capable of carrying out. Ask regularly what you can do to help.
There may be many ways you can provide help that you haven't thought of yet.
Final Tips
Remember that the patient has rights — they deserve to have
respect, confidentiality, and assistance. Ask for the doctor to explain any
confusing medical terms or procedures. If you or the patient feel something is
not right, ask to see another doctor for a second opinion.
Ensuring that the patient's best interest is the heart of every
encounter should keep all parties on track.
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