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Getting past the barriers
You can help the person you care
for, and yourself, by initiating a conversation about his or
her wishes regarding end-of-life care. It is often difficult
to speak honestly and
openly about death and dying. However, it can be even
more uncomfortable to have to make end-of-life decisions concerning
a loved one without having had such a conversation. Most families
find that bringing up the topic is the hardest part. Once everyone
gets past the initial discomfort, many find themselves relieved
to bring the issues out into the open. If the time does come
when the person they are caring for can no longer speak for
him/herself, those family members who know their loved one’s
wishes are spared the guilt and anxiety of trying to make difficult
life-support decisions without any guidance. As a potential
decision maker, you may find it is in your best interest to
bring the subject out in the open.
Although 75% of Americans say
they are in favor of advance directives, only 30–35% of
them actually write one. The biggest barrier is procrastination—not
getting around to it. In an ideal world, every adult would have
an advance directive, no matter his or her age. Sudden accidents
or illnesses occur all too frequently and often take us off
guard. Within the context of a serious illness, there may be
no time to put this decision off. (Return
to list)
Conversation starters
The American
Bar Association has an excellent, very accessible
tool kit to help patients and their families discuss issues
concerning end-of-life care. The kit’s articles include
topics such as weighing the odds of survival, your personal
priorities and spiritual values, how to select a healthcare
representative, and how to be a health care representative.
The article about conversation
starters acknowledges that there probably is no right time
or right way to start a discussion about dying. Unless there
is a story in the news that provides a good opening, you may
want to begin with an indirect reference. For instance, you
can talk about a friend of a friend who had problems when
her parent died because the parent had not spoken with family
members or written an advance directive. By expressing the
personal distress you would feel if you were in that situation,
you then can shift to asking the person you care for what
he or she would like to have done "just in case."
Many people who are sick care very deeply about not causing
their family members pain or anguish. Once they realize that
not talking about the situation will make it harder on the
ones they love, they often can get past their resistance to
talking about the situation. Some are even relieved because
they had wanted to talk about it but didn’t know how
to bring up the subject!
Sometimes it helps to open the
conversation by acknowledging how awkward you feel: "I
have something on my mind that is really uncomfortable to
talk about, but I feel we need to. I wouldn’t be a good
[son/daughter/wife] if I didn’t find out about your wishes
for care if you get to the point at which you can’t express
them yourself."
Alternatively, if you know that
the person you care for is very particular about how things
are done, you might want to start the conversation by emphasizing
his or her ability to remain in control, even at the end,
through an advance directive. People with a serious illness
often feel powerless about their disease and their situation.
By planning ahead for their care, they will at least be able
to direct those things that are still within their power to
control.
Some people say their attorney
advised them to have the conversation: "My attorney was
talking to me about my need for an advance directive, and
I realized I don’t know much about you and your wishes."
Others might start it by noting something about famous people.
For instance, "Neither Richard Nixon nor Jackie Kennedy
was on life support when they died. I wonder if they had an
advance directive."
You may want to look at a document
called The
Five Wishes. Although it is not a legally binding
advance directive in Oregon, it outlines five basic concepts
you may want to cover in your discussion. In addition, this
document can be used to help the person you care for identify
what it is he or she wants and values before going on to complete
the official Oregon
advance directive form. Our article about planning
healthcare decisions covers the specifics of what’s
required on the form and offers facts concerning the consequences
of various life-support decisions from a quality of
life perspective (e.g., the effectiveness and experience of
CPR, tube feeding, the use of antibiotics, etc.). (Return
to list)
Common responses
Here are a few of the ways people
often respond when the subject of advance directives and end
of life decisions is brought up:
"It’ll be okay. I’ll beat this thing.
We don’t need to discuss life support."
Denial is one of many ways we
cope with problems that seem overwhelming. Although it is
frustrating for family members, it can be a very important
strategy for the person who is confronting mortality. However,
it doesn’t relieve you of the need to have the conversation.
Rather than force the person you care about to accept the
terminal nature of the disease, you can frame your need for
a conversation in the context of "just in case."
In a gesture of unity, you could also decide to make an advance
directive yourself and suggest that the two of you do it together.
This helps prevent the person who is ill from feeling marginalized
and set apart. As a side benefit, it can provide you with
an advance directive. People with terminal illnesses are not
the only ones who need such a document. Accidents happen all
the time, and those who may have to care for you would likely
appreciate having a directive to help them make decisions
on your behalf.
"It’s all in God’s hands."
Those who are religious or have
strong life philosophies believe the moment of death is out
of our control. Whether or not you agree with these beliefs,
you can affirm your loved one’s conviction and still
point out that "a Higher Power has given us the responsibility
to determine how we live up until death." You can communicate
your need to know more about the person’s wishes in case
he or she is unable to describe them near death.
"It’s too painful to talk about. Besides, talking
about it is bad luck. It will only make it happen."
Rather than challenge your care
receiver’s beliefs about a premature demise, focus instead
on the pain it will cause you if you don’t have the discussion.
You can first acknowledge her pain and discomfort with the
subject. You can then share that you too are in anguish at
the prospect of making tough decisions and living with the
guilt of making a decision that is different than what she
would have wanted. You can also acknowledge her discomfort
by not insisting on an immediate conversation. Instead you
can ask to set up a specific time in the next few days when
the two of you can get together and talk. Sometimes spending
a little time with the idea can make it easier to address
later.
"There’s no need to talk. You know me. I don’t
want any heroics."
Although this is a simple, straightforward
response, unfortunately end-of-life decisions are not always
about heroic measures. For instance, from what this person
has said, one could reasonably assume that he or she would
not want cardiopulmonary resuscitation (CPR), but what about
antibiotics in the case of an infection with pneumonia? Or
what about tube feeding if he was no longer taking in food
or water? You may wish to look at our article about the
POLST form to get a brief synopsis
of the range of decisions that might require action. In addition,
our article about planning for
healthcare decisions includes information about the
medical and quality of life considerations for each of the
life-support measures
that typically must be faced. (Return to
list)
Resistance from other family
members
The person who is ill may have
very clear goals about what he or she wants in terms of care
at the end of life, but family members may not agree. This
situation can make things very difficult for the professionals
involved. They are legally and ethically bound to follow the
patient’s wishes. If all of the paperwork (an advance
directive and the POLST form)
is complete and available, then there is no question about
what will be done. Professionals recommend that you keep several
copies and distribute them liberally so they are not difficult
to find when they are needed. For instance, a safe deposit
box is OK, but your doctor and lawyer should have copies,
as should your health representative and your local hospital.
Some even suggest keeping a copy in the glove compartment
of your car and at home in your desk. To facilitate access
to the advance directive, you may also wish to have it registered
with the U.S.
Living Will Registry. This organization stores advance
directives electronically, enabling hospitals and health providers
from around the country to have the paperwork faxed to them
24 hours a day, 7 days a week.)
With all the paperwork in place,
your care receiver will have his or her wishes honored. However,
that does not mean the situation will be a comfortable one
if there is disagreement within the family. If a relative
has strong feelings that are contrary to the wishes of the
patient (whichever direction they lean), you would do well
to resolve the conflict as soon as possible. Bringing in a
professional such as a counselor, social worker, chaplain,
or other clergy member can help immeasurably. These professionals
can help the patient express his or her wishes in a safe environment.
They can also provide opportunities for the dissenting family
members to not only be heard, but also be guided to an understanding
and acceptance of the patient’s decision. Time and resources
spent gaining family consensus before the death will be a
good investment for helping everyone constructively process
events after their loved one has died. (Return
to list)
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