Continuing with
the four part series on Creating Positive Health Outcomes, last week was Five Things Family/Friends Can Do,
this week’s focus is what patients can do.
Today’s health
care is “patient centered,” which
requires that the patient and/or their designee, make choices and decisions
about treatments, tests etc. Since this is a shift from the “provider down”
approach of old, it can be confusing, frustrating and challenging. It means
that patients need to be as clear as they can be about what they want, so if
the situation arises where they can’t speak for themselves, their wishes are
carried out. As we age, this brings its own set of unique issues, particularly
if there are no children or family to represent them.
As my
brother-in-law noted recently, Whether family or
friends, an individual anticipating decline must increase her/his awareness of
the shortfalls which may occur in his/her care, whether hospital, nursing home
or at home. Part of growing older is losing friends and family so this
may require building new networks of friends or family whose mandate is health
management advocacy agreed to in a reciprocal compact. This means
conversation and planning in an informal forward looking way among the team members
in an effort to take a role in each other’s care.
As you go
through the five things patients can do, you will see overlap. For example,
“Keeping a health notebook” appears under three headings simply because it’s a
good way to tract what happens and it helps when information doesn’t make it
into the medical chart. Unfortunately, missing information from a patient’s
chart is a very common occurrence and can compromise care.
1. Know your
rights and responsibilities as a patient and act accordingly: Most hospitals, health centers and even
states have specified rights and responsibilities. Be sure to check these
sources. Below are general guidelines on rights and responsibilities.
You
have the right to:
• Considerate
and respectful care regardless of race, ethnicity, national origin, religion,
age, sexual orientation, gender, payment source or health care condition.
• Current and
understandable information concerning diagnosis, treatment and prognosis.
Expect reasonable assistance to overcome language (including limited English
proficiency), cultural, physical or communication barriers.
• The
identity of the physician, nurses and others involved in your care, including
those who are students, residents or other trainees.
• Work
with medical providers in establishing the plan of care, including the refusal
of a recommended treatment, without the fear of reprisal or discrimination. Be
told of realistic care alternatives when the current treatment is no longer
working
• Privacy and the expectation that all records
and communication are treated as confidential.
• Your
medical records.. Request that your provider amend your record if it is not
accurate, relevant or complete
• Expect that
an advance directive (such as a living will, health care power of attorney)
will be honored by the medical staff.
• Receive
timely notice and explanation of changes in fees or billing practices.
• Voice
concerns, complaints and questions about care and expect a timely response.
• Expect that
the medical caregivers will give the necessary health services to the best of
their ability. If a transfer of care is recommended, you should be informed of
the benefits and alternatives.
•
Access to emergency services. In the event of a medical emergency, where you
believe your life is in danger, you have the right to receive screening and stabilization
without prior authorization or financial penalty.
As
a Patient, You Have the Responsibility To:
• Provide
your medical caregivers with accurate and complete information, and convey your
understanding about what is expected of you in regard to your treatment. If you
believe you cannot follow through with your treatment, let them know. Inform
them of changes in your condition, care situation or modification or completion
of important legal forms, such as advanced directives
• Meet
your financial obligations as promptly as possible.
• Be
considerate of the rights of other patients and medical personnel while in the
hospital.
• Recognize
the reality of risks and limits of the science of medical care and the human
fallibility of the health care professional.
• Be aware of
the health care provider's obligation to be reasonably efficient and equitable
in providing care to other patients and the community.
• Become
knowledgeable about your health care plan.
• Keep
appointments and notify your provider if unable to do so.
For more information
2. Advocate
for yourself.
Ask
questions. Ask for what you need. Ask for your medical information (tests,
treatments, records etc.)
Decisions: You are in charge of deciding
what you want to happen. Don’t pretend you understand if you don’t. Don’t stay
with a provider you don’t feel comfortable with them.
Voice your concerns.
Organize a health record and keep it up to
date.
Communicate with your provider, family and
friends. Communicate what you want
and feel-Be specific and put it in writing Communicating includes listening.
Consider your priorities-what is it that you need and want. Calling your provider-know how to reach
them in case of emergency. Choose
health information carefully. Consider a second opinion. Choice-You have the
right to refuse treatment
Advocate: Ask a family member or friend to
help you get what you need.
Talk to others:
Join a support group. Team: You and your provider are a team. You are the
captain of the team. Treat your care team with respect and honesty. Take a
“friend with a pen” to office visits. Think about questions in advance and
write them down. Take your time in making a decision that will change your life
Take responsibility for the decisions you make.
Educate yourself and others about your
condition. Learn about local resources that can help you. Expert: You are the expert
on you.
For more
information
3. Be clear
about what you want and need.
Letting your medical provider, caregivers, family and friends know what you want and need up front and
in writing can save time, energy, reduce frustration, helps you get what you
want and could even save your life.
•
Fill out advance directives, designate a health proxy, and be clear who people
can go to for information about how you are doing and what you might need.
• If
you have a serious condition, where it’s important for someone treating you in
an emergency situation to know about, wear a medic alert bracelet as well as
carry written instructions about what you might need, medications you are on
etc. If you are unable to communicate, be sure to have accessible written
information that you want them to know. It can help if you have your medical
provider include a letter about your treatment protocol and how to contact
them. Note that there are services, like MedicAlert that can
provide immediate information to appropriate medical responders with everything
from advance directives, do not resuscitate orders, to important medical
information. They will even contact your family if you desire.
• ICE
your cell phone: Make sure your cell phone contains an In Case of Emergency
number(s).
4. Manage
Your Health
• Keep a
health notebook: You can now do this on-line.
• Maintain
healthy habits by:
-
Reducing
sugar & caffeine in your diet;
-
Limiting
alcohol to a glass of wine daily if allowed with current medications;
- Regular exercise as health permits (consider yoga, Tai Chi and Qigong);
-
Getting
sufficient sleep
• Keep
medical appointments
• Identify
resources in your community that can help you get what you need. Use the
Getting What You Need Checklist
• Develop and maintain good relationships with your health
providers
Additional
Information
5. Be aware of health fraud: If it sounds too good to be true, it probably is. People with
chronic/life threatening conditions are often the target of fraud. The fact
that serious illness causes great suffering, and can lead to death, has
encouraged the marketing of hundreds of unproven treatments. Learn more about scams and health fraud.
Several
weeks ago, I spoke with a woman who was caring for her elderly Mom who had
memory issues, was reluctant to leave the house and most likely was depressed.
Consequently, Emily (not her name) was beside herself trying to figure out what
to do with her Mom. 
Organizing
the area: You
will want a flat surface to work on, a chair, lighting, electrical outlet,
electric strip and storage. While shelves are great, a desk with drawers
underneath, or even an old door laid on two saw horses, with boxes on the floor
and peg board on the wall are also fine. Work with what you have. Mason jars;
tins and even yogurt containers are great for stashing paintbrushes, colored
pencils etc. for both storage and easy access.
•
Clay-Model Magic is terrific for creating items that can air dry. For finer
detailed work, such as jewelry, use polymer clay. This will require baking. 
