It sometimes happens
that decisions about medical treatments must be made when
the patient is too sick or unable to express his or her
own wishes. Sometimes a serious illness can cloud thinking,
as may the medicines used to treat the illness. This could
happen with Alzheimer's disease, after surgery, a terminal
illness, coma, or a stroke. When people are dying, there
is often a point when they are no longer able to make
their own medical decisions. When these things happen,
you may be asked to work with doctors to make decisions
that the patient would want. But making medical decisions
for someone else can be difficult. Family members may
disagree with one another or with the doctor. They may
not understand the patient's condition, or they may not
be sure what the patient would want.
"Health- Care proxy"
forms and "living wills" are types of advance
directives which are also legal documents that allow people
to state what they would want done medically in the case
of a terminal illness or in the event of a coma or stroke.
These forms can make it easier for family and friends
to make medical decisions when the person can no longer
do so. And they help the doctor to recommend treatments
that match the patient's wishes.
Many caregivers have
said that these documents helped them a great deal when
life-and-death decisions needed to be made. They help
patients feel more confident that future medical decisions
will be based on their wishes. They also help relieve
any guilt that caregivers might feel about stopping life-prolonging
treatments that aren't likely to help the patient.
Your goals are to:
-
Help the older person to think
about planning for future medical decisions
-
Learn the wishes of the older
person
-
Learn what will be required of
you when the older person can't make his or her
own medical decisions.
-
Encourage the older person to
complete advance directives.
Talking to a doctor
There are at least three good reasons why
you should encourage the older person to have a discussion
with the doctor about planning for life-threatening illnesses:
-
The doctor can provide important information
about the types of illnesses that make people unable to
speak for themselves (such as Alzheimer's), the types
of treatments that are sometimes used to prolong life,
and how well the treatments work.
-
The older person can give the doctor important
information about his or her own goals for future medical care.
-
The doctor will then know, first hand,
what the older person's wishes are which will help him or her to carry them out.
Here are some of the things that the older
person should ask the doctor:
-
What is my health like now, and what should
I expect my health to be like in the future?
-
What medical treatments might be used to
prolong my life, and what are the chances that I would
recover if I received those treatments?
Here are some things the older person
should tell the doctor:
-
What situations am I concerned
about? For example, people often are concerned about
not being able to think clearly, about pain, about being
a burden on their families, about needing others to
take care of them, and about financial costs.
-
What situations would be so bad
that I would not want any medical treatments to prolong
my life? What is it about these situations that makes
me feel this way?
Talking to a lawyer
Lawyers can answer questions about how advance
directives should be worded and how they will be interpreted
by the courts in your state. They can give you forms or
develop forms for your special needs. However, you do not
have to use a lawyer to make an advance directive.
You can also obtain free advance directive
forms from organizations listed at the end of this chapter.
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You should help the older person choose
someone to make medical decisions if he or she is unable
to do so. This person is called a "proxy" which
means someone who has the authority to act for another
person. (Other terms that refer to the same thing include
"health care proxy", "health care agent,"
or "durable power of attorney for health care.")
Most older people select a family member or a close friend
as a proxy. The proxy should be someone the older person
trusts to make the right decision or choices. The proxy
may be limited to health care only or may include financial
matters. One person may be the proxy for health care and
a different person for financial matters. Some states
require a "durable power of attorney" form in
choosing a health care proxy. The state forms will have
instructions that explain what is required in your state,
or a social worker or lawyer can assist you.
The older person
should think about what kind of person he or she wants
to make these decisions. People give many reasons for their choice of proxy. Here
are some examples:
-
My proxy will follow my instructions.
-
My proxy knows me best and knows
what treatments I would want for myself.
-
I trust my proxy to make good
decisions for me.
-
My proxy is level-headed, and
won't let emotions get in the way.
-
My proxy cares about me more than
anyone else does.
The older person can communicate his or
her wishes about who should be a proxy in three ways
by discussing them with you or others, by writing them
down in a living will, and/or by completing a "Durable
Power of Attorney for Heath Care" form that assigns
a proxy.
Be sure that the
person selected by the older person feels comfortable
about serving as a proxy. The person who will be the proxy
should talk with the older person about his or her feelings
about life and death. The doctor could be included in the discussions but, if
this cannot be arranged, the same issues should be discussed
with the doctor separately. The more they talk, the more
the proxy and the doctor will understand what the older
person would want. They should discuss questions such
as would the older person want to receive artificial nutrition,
that is, food and water mechanically pumped into the body?
Would the older person want artificial respiration even
if he or she is in a permanent coma? It is through these
discussions that the patient, the proxy, and the doctor
can be confident that medical care will be based on the
patient's own values.
Here are some issues that should be
included in those discussions.
-
What illness or permanent disability
would be unacceptable to the older person, such as paralysis,
or being kept alive for a prolonged period by a respirator?
Discuss the case of a terminal illness, where the quality
of life would be very poor. Would the older person want
any medical treatments to prolong life, or would he
or she want only medicines to become comfortable? Why
does the older person feel this way?
-
If the older person becomes very
ill and is likely to die, what should be the goal of
medical care: doing everything possible to extend life,
or to keep the person comfortable? Why does the older
person feel this way?
-
What are the things that the proxy
should weigh in decisions about medical treatments?
For example, is comfort very important, or being conscious,
or being in control, or costs?
-
What medical treatments would
not be wanted under any circumstances, even if the treatment
were only used temporarily?
-
What medical treatments are acceptable
on a temporary basis to help recover from an illness,
but would not be acceptable permanently?
Help the person fill
out a living will (also called "advance directive").
A living will states a person's wishes about medical care
if he or she is close to death or too ill to make decisions.
A living will also often allows a person to name a proxy.
A copy of the living will should go to the proxy and the
doctor. It should also be included in the hospital medical
record when the older person is admitted to a hospital to
inform health care staff what the patient's wishes are if
he or she can't speak. Under the Patient Self-Determination
Act, patients or their representatives will be asked if
they have a living will on admission to a health care facility
or upon joining an HMO.
Each state has its own forms for living wills
and rules for filling them out. Free forms are available
from doctors and hospitals, local medical societies, bar
associations, health insurers, and from public service organizations.
Your doctor can give you a standard form or tell you where
to get one. The patient is free to change a living will
at any time.
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-
"My mother
doesn't want to talk about future health care decisions."
Response:
Discussing advance directives is not a pleasant topic
for anyone. Some people find these discussions very upsetting.
Others feel they will never be in a situation where another
person will have to make decisions for them. You may want
start by talking about someone else who has recently died
or has been hospitalized as an example. Talk about what
that person would want done if he or she couldn't
speak and then ask if your mother would want the
same thing or something different. You can also use the
example to show how important it is to have an advance
directive.
-
"I don't
feel comfortable being a proxy."
Response:
Being a proxy is a serious responsibility and so your
feelings are understandable. But someone has to do it
and the older person thinks you would be the best person.
What is it about being a proxy that makes you uncomfortable?
Talk with the older person or someone who can understand
your feelings. They may be able to help you decide if
you can take on this responsibility. If you decide that
you cannot, then help the older person to find someone
who can and then be sure that person is willing
to take on the responsibility.
-
"My husband
did not do any advance planning and now it's too
late since he's in a coma and can't speak for
himself."
Response:
Even if your husband did not write a living will or formally
designate a person to be proxy, his doctor can make medical
decisions in consultation with you and others who knew
him. The doctor needs to know what your husband would
say if he could speak for himself. You know your husband
well and so you can tell the doctor what you think he
would want done and why.
-
"My father
is sick and I'm his proxy. I'm worried that I will
have trouble talking to his doctors."
Response:
Open communication is very important. To make good decisions,
you and his doctor have to work together as team. The
doctor will give you information and make recommendations.
Your job is to say what you think your father would want.
Doctors and hospital staff are there to
help you and the patient. If you feel intimidated by the
doctor, ask a nurse or social worker to speak to the doctor
for you or with you. Or you can go over your questions
with someone from the hospital staff before you talk to
the doctor. If, for some reason, you feel that the doctor
or other staff are not doing what your father would want,
you can speak with a patient advocate to intervene for
you. Most hospitals have a patient advocate, patient representative,
or "ombudsman" who investigates complaints made
by or on behalf of patients and who will work to resolve
the problems.
Think of other obstacles that could interfere
with carrying out your plan
What additional roadblocks could get in
the way of doing the things suggested in this chapter?
For example, will the person cooperate? Will other people
help? How will you explain your needs to other people?
Do you have the time and energy to carry out the plan?
You need to develop plans for getting around
these roadblocks. Use the six problem-solving steps in
the chapter on "
Using the Eldercare
at Home book to solve caregiving problems."
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Unfortunately, it is easy to delay this
task. Most people don't want to think about this
subject, but when the time comes to make difficult medical
decisions, most people wish they had. Having a signed
statement from the older person will make it much easier.
Set a goal of having a signed advance directive
by a certain date not just for the older person,
but for yourself as well. Call one of the resources listed
below or ask a lawyer or social worker for help in getting
the right forms for your state. Talk to the older person
about his or her wishes and encourage filling out the
form. If the older person is unable or unwilling to complete
the form, then try to learn what he or she would want
done so that you can tell this to the doctor if
needed.
If you do need to make medical decisions
for the older person, the more prepared you are ahead
of time, the easier it will be and the more sure you will
be that you are doing the right thing.
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For additional information:
Legal forms at no charge
Choice in Dying
200 Varick Street
New York, NY 10014
800-989-WILL
web site: http://www.choices.org
General information
"Shape Your
Health Care Future with Health Care Advance Directives,"
American Bar Association, American Medical Association,
and American Association of Retired Persons. 1995. Available
from
American
Medical Association, 312-464-5619.
"Who Will Decide
When You Can't?" California Medical Association,
San Francisco.
"Hard Choices for Loving People,"
Chaplain Hank Dunn. Herndon, VA: A&A Publishers, 1994.
"Choosing Wisely:
How Patients and Their Families Can Make the Right Decisions
About Life and Death" by Charles Raday, MD.
New York: Image/Doubleday, 1992.
American Association
of Retired Persons
601 E Street, NW
Washington, DC 20049
202-434-2277
Web sites
http://www.abanet.org/elderly/sources.html
The American Bar Association web site.
http://www.ama-assn.org/insight/spec_con/patient/pat092.pdf
This is an article about advanced directives that
appeared in the Journal of The American Medical Association
[
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