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Death can be hardest on the people
left behind. An Advance Directive or Health Care Proxy
can ensure that a person's wishes are respected and
ease the stress on family members and friends. Hospice
and palliative care can provide dignity and comfort
in the final days, even when death comes suddenly.
Many
religious leaders, philosophers, and writers have shared
their beliefs on death and dying, but a keen observation
comes from an unusual source, the late rock guitarist
Jimi Hendrix. “Life is pleasant. Death is peaceful.
It’s the transition that’s troublesome,”
he said.
The
end of a person’s life is difficult for family
members and friends. For healthcare professionals, meeting
the needs of a dying patient and his or her loved ones
can be challenging, especially when the death is sudden.
Although
the end of life is not pleasant for anyone, there’s
a piece of paper that can ease some of the uncertainty
and provide answers to tough questions for family members.
An advance directive, also known as a living will, is
a document that states a person’s healthcare wishes
in the event that he or she cannot communicate them.
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Patricia
Murphy, R.N., Ph.D. |
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“The
best gift that parents can give to their children is
completing an advance directive,” says Patricia
Murphy, R.N., Ph.D., an advanced practice nurse for
ethics and bereavement at University Hospital. “It
lifts a tremendous burden off of family members, who
otherwise may have to make some very difficult decisions.
For example, say a mother of six grown children is comatose
and has a poor prognosis. Each of the children might
think he or she knows what’s best for Mom, but
with an advance directive, even though she can’t
speak, the document becomes her voice.”
Another
document, a healthcare proxy, authorizes a specific
person to act as a “healthcare representative”
and make medical decisions for a patient if he or she
is unable to do so. With this approach, any confusion
among family or friends as to who should be making important
decisions is eliminated.
An
advance directive form can be obtained from many places,
including a doctor’s office or a hospital; it’s
even a Federal law that hospital patients must be asked
if they have a living will, and if not, if they would
like more information. Although it’s recommended
that a person complete an advance directive, doing so
is completely voluntary. (To download an advance directive
form in English or Spanish, go to:
http://www.theuniversityhospital.com/advancedirective/)
In
New Jersey, it’s easy to complete an advance directive.
Simply fill out the form, sign it, and have two other
witnesses over age 18 sign it. There’s no need
for an attorney or to have the document notarized. After
the advance directive is completed and signed, suggests
Dr. Murphy, it is helpful for both a person’s
doctor and a family member to receive a copy.
The
Humaneness of Hospice
Until
about 30 years ago, most terminally ill patients spent
their waning weeks or months in hospitals. Few people
died in the familiar surroundings of their homes. But
then the hospice movement began, embracing the concept
that these patients should be able to receive excellent
palliative care, such as pain management and emotional
support, in a home setting. A specially trained hospice
team, which includes nurses, social workers, home health
aides, and clergy, work to address the patient’s
physical, emotional, social, and religious needs.
“Hospice
gives people with life-limiting illnesses the opportunity
to live until they die,” says Dr. Murphy. “It
really makes perfect, rational sense.”
Hospice
services provide support to the patient’s family,
too. Many programs offer physical and emotional breaks
from the daily care of their loved one. Volunteers stay
with the patients for a few hours each week, enabling
the primary caregivers a chance to have some time for
themselves. During the patient’s illness and afterward,
in the bereavement period, hospice is a sounding board
for family members.
Today,
says Dr. Murphy, most hospice programs are home based,
although some also have a nursing home option. Recognizing
that home care simply isn't an option for some patients,
University Hospital offers hospice care through a partnership
with Compassionate Care Hospice.
End-of-Life
Care for Trauma Patients
Hospice
programs earn high accolades for their compassionate
and comprehensive care of terminally ill patients and
their families. For patients at the other end of the
spectrum - those who die suddenly - there’s not
a widespread, equivalent counterpart. That’s only
for the time being, however. Dr. Murphy and Anne
Mosenthal, MD, director of the Surgical Intensive
Care Unit (SICU) at University Hospital and an associate
professor of surgery at New Jersey Medical School, are
at the forefront of a movement that could dramatically
change the way doctors, nurses, and other staff approach
dying and critically injured trauma patients and their
families.
“Trauma
is a disease of the young. One minute, a person can
be perfectly healthy, but because of a catastrophic
event, twenty minutes later, he has died. There’s
no time for loved ones to prepare for the loss the way
cancer patients’ families can,” says Dr.
Murphy. “Palliative care in a trauma or surgical
ICU setting has to be the most aggressive, systematic
comfort care we can provide.”
“Many
patients die in the trauma unit regardless of the wonderful
medical care they receive, and that’s especially
difficult for trauma surgeons to accept,” adds
Dr. Mosenthal. “Pat helped me realize that there
should be a better process for dying trauma patients
and their families, both in terms of quality care and
compassionate care.”
A
palliative care team has been on call 24/7 for trauma
patients at University Hospital for three years, but
Dr. Murphy and Dr. Mosenthal wanted to enhance the services
and staff training and develop a model program that
could be used at other urban trauma centers. In 2002,
they received a $150,000 grant from the George Soros
Foundation’s Project on Death in America, and
this year, they were awarded a $375,000 grant from the
Robert Wood Johnson Foundation program, Promoting Excellence
in End-of-Life Care. Both projects focus on developing
a palliative care program in the trauma/surgical ICU
setting.
“Three
or four years ago, I didn’t really think of palliative
care as something we could do better,” says Dr.
Mosenthal. “Now, we’re working on a holistic
approach that includes not only the physical needs of
the patient, such as being suctioned or receiving regular
mouth care, but involving the family and improving communication
between staff and the family. Increasingly, doctors
have less time to talk to the patients and family; more
time is devoted to procedures. Palliative care brings
the focus back on the patient.”
The
University Hospital program developed through the Robert
Wood Johnson grant establishes a model to be followed
for all trauma and surgical ICU patients. For example,
within 24 hours of admission to the SICU, patients and
their families will receive psychosocial or bereavement
support from Dr. Murphy or her team, including specially
trained counselors and clergy. Within 72 hours, the
family has a special meeting with a doctor and a nurse.
On the personal care side, there are plans to develop
a mobile comfort care cart for the SICU that includes
such items as a lamp, a CD player, massage oil, and
blankets. And when a trauma patient dies, each death
will be reviewed through a palliative care filter: Did
the patient and the family receive the best of palliative
services? Afterward, families can contact the University
Hospital bereavement team as needed, at no cost.
“When
a person dies, it’s one of the most important
times in the lives of the family he or she leaves behind.
It stays with them forever,” says Dr. Murphy.
“For doctors and nurses, the challenge is to help
the patient and the family through the dying process
with sensitivity. For the family, it’s a sad time.
We don’t want to do anything to make it worse.”
For more
information about end-of-life palliative
care, call Pat Murphy, PhD, RN Clinical Ethicist at
(973) 972-7251.
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