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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. Although it is often
difficult to speak honestly and openly about death and dying,
it can be even more uncomfortable to have to make end-of-life
decisions concerning a loved one without having had such a discussion.
The majority of people who die from an illness, as opposed to
a car accident or some other sudden means of death, will go
through a period of days or weeks when they move in and out
of consciousness and are unable to talk. This is why it is important
to talk, while you still can, about the person’s wishes
for life sustaining treatment.
Most families find that bringing
up the topic is the hardest part. Once everyone gets past the
initial discomfort, many find themselves relieved to have the
issues out into the open. If the time does come when the person
who is being cared for can no longer speak for him/herself,
family members who know their loved one’s wishes are spared
the guilt and anxiety of trying to make difficult life-support
decisions without previous guidance. As a potential decision
maker, you may find it is in your best interest to start the quality of life conversation
and encourage the person you care for to write down his or her
wishes in an advance directive.
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 and very accessible
tool kit to help patients and their families discuss matters
concerning end of life care. The kit’s articles address
topics such as weighing the odds of survival, your personal
priorities and spiritual values, how to select a health care
representative, and how to be a health care representative.
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. 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 all states, 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
an official advance directive form. Our article about quality
of life is also helpful in this regard. For factual
information about commonly
used life-support measures (e.g., the effectiveness
and experience of CPR, tube feeding, the use of antibiotics,
etc.), see our article about health care decisions. (Return
to list)
Common responses
Here are a few of the ways people
often respond when someone brings up the subject of advance
directives and end of life decisions:
"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 when they are needed.
"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 his or 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 he or she would have wanted. You can also acknowledge
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? Our article about planning
for healthcare decisions includes information about
the medical and quality-of-life considerations that typically
must be faced for each of the life-support measures. (Return
to list)
Resistance from other family
members
The person who is ill may have
very clear thoughts 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 the paperwork 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. If the person you care for
is homebound, you may want to keep a copy in a drawer by the
bedside so it is readily available for emergency medical personnel
in case there is a call to 911.
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 spiritual
advisor can help immeasurably. These professionals can help
the patient express his or her feelings about quality
of life 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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