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August 2, 2000
Knowing what to expect and being prepared for the death
of a loved one can make this difficult end-of-life transition
a little less traumatic.
INTELIHEALTH FEATURE -
Until the 1940s, most people died at home, surrounded by
friends and family. But with the dramatic advances in medical
technology that occurred in the mid-1900s, death and dying
became increasingly removed from the lives of Americans. The
primary location for death changed to hospitals and nursing
homes, often out of sight of families and loved ones.
In recent years, however, more and more people are dying at
home again — primarily because they choose to — and their
families aren't always sure how to act or what to say. Knowing
what to expect and being prepared can make this difficult
end-of-life transition a little less traumatic.
Giving Comfort, Giving Care
"Probably the most important thing is advance planning,"
says Michael Harper, M.D., instructor of medicine and medical
director for Beacham Ambulatory Care Center at Johns Hopkins.
"Before it's too late, the person who's dying should make
plans for what will happen as his life comes to an end — the
things he wants done, as well as those he doesn’t want done."
It is also important to remember that despite this advice,
many people simply choose not to make such plans.
For example, does the dying person want lots of company, or
would he rather be left alone? Should family members share
sensitive information, or should they withhold it? Will there
be aggressive medical care, or will death be allowed to come
naturally? These are all things that are best decided in
advance.
"I often recommend that people who are dying name a health
care agent, maybe someone in the family who will make
decisions for them if and when the time comes that they can no
longer decide for themselves," says Dr. Harper. "It certainly
can help families cope when there are some plans laid out and
they know what their loved ones have chosen."
Everyone has different needs, of course, but some emotions
are nearly universal among the dying. To make those last weeks
or months as comfortable and stress-free as possible, here are
a few points to keep in mind:
- Your presence is everything. "One of the things
dying people are afraid of is abandonment," says Dr. Harper.
Having people around — talking, watching movies or simply
reading together — can give tremendous comfort. Of course,
Dr. Harper adds, some people would just as soon be left
alone. The only way you’ll know for sure is to ask.
- Be prepared to listen. Those who are dying may
want to share their fears, discuss their uncertainty about
the future and talk about their concerns for those they’re
leaving behind. Keep in mind, however, that men and women,
whether they’re the caregivers or those receiving care,
often express themselves in different ways. Men, for
example, have a tendency to give advice when someone really
just wants them to listen. Women, on the other hand, may
push people to "let it all out." "You need to ask yourself
what your spouse or your father or your mother would want,
not what you want," says Dr. Harper.
- Be honest and share information. Family members
naturally want to protect their loved ones, and sometimes
they do this by withholding difficult information — news
about lab test results, for example, or practical details
about real estate or finances. It’s usually better to be
forthright. People who are dying need to retain a sense of
control, and this means being included in family
discussions.
- Give a lot of reassurance. "In surveys, when you
ask people what they fear most later in life, death is
rarely number one," Dr. Harper says. "What people usually
say is, 'I don’t want to be a burden on my family.'" Take
the time to let the dying person know how much you value him
and how grateful you are for the opportunity to spend this
last time together.
- Settle unfinished business. Everyone has regrets
— things they wish they'd done, old rifts they wish they'd
healed, places they wish they'd seen. It's not always
possible to fulfill last wishes for a dying person, but
sometimes you can. So it's worth asking if there's anything
you can do.
- Respect the need for privacy. "People often say,
'I don't want anyone to see me like this,'" says Dr. Harper.
"You just have to be attuned to what the individual needs."
Care For The Living
Dying takes a toll on everyone, not the least on those who
are left behind. It doesn't make sense to run yourself ragged
during the last weeks or months, says Dr. Harper. Get some
help, and do it early.
"There's a great underutilization of hospice care," Dr.
Harper says. "Most people who are enrolled in hospice programs
stay only a few weeks because they came so late. This is
unfortunate because hospice care provides grief counseling
along with lots of additional benefits." In addition, hospice
programs are paid for by Medicare, and they include both
inpatient and at-home care, as well as care for the living.
Your doctor can recommend a program in your area.
The process of dying is generally much longer than it used
to be because of improved medical care. So it's worth looking
for ways to gets through this period with your emotions and
even your health intact. You can do several things to keep
your peace of mind:
- Realize that no matter how hard you try, you can’t do
everything. Make sure other family members know what
you’re going through. Get them involved in the daily care —
changing the linens, shopping for groceries or keeping the
dying person company.
- Be direct about conflicts. Sometimes you just
can't do what the dying person wants. It's important to be
forthright about your limitations. Otherwise, resentment and
anger are sure to simmer — and the dying person will
perceive them, whether they’re spoken or not.
- Prepare yourself for feelings of guilt. Nearly
everyone who cares for the dying goes through phases of
guilt and anger. You may feel guilty because of things you
wish you hadn't done, because of old wounds or because you
found yourself wishing it all would end. It's normal to feel
this way. So don't be hard on yourself. Understand that
feelings of guilt are simply part of the process.
- Get ready for the end. Even when people have
prepared for the death of a loved one who has been
chronically ill for months or even years, the end nearly
always comes as a shock to the survivors. You may want to
ask your doctor to explain how to recognize when death is
near. It will give you time to prepare yourself — and your
family — for this last, sad stage of life.
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