Returning to the hospital for her postpartum checkup was painful
for Beth Seyda. Her baby, Dylan, had lived only two weeks. He
succumbed to infection after surgery to correct a congenital diaphragmatic
hernia.
Seyda felt
uneasy in the waiting room with expectant mothers and babies when
she returned for her first postpartum appointment.
She finally
felt safe in the examining room, until a nurse walked in and routinely
asked whether Seyda was breast-feeding.
"It was
very upsetting. And she felt terrible, too. She just saw it as
a postpartum visit and didn't know there was anything different
about it. I thought, 'Why isn't there something set up to keep
this from happening? A different place to go.' For me, it boils
down to how critical communication is, especially in an intensive
medical situation," Seyda said.
Good communication
"Obviously, we can't know everything. But we can sure ask,"
said D.J. Pappas, who is a licensed professional counselor and
administrative manager for bereavement services at Duke University
Hospital in Durham, N.C.
Pappas, who
was at the University of North Carolina Hospital when Dylan died,
now facilitates a support group for bereaved parents there.
"People need to be able to communicate what they need,"
Pappas said.
One member
of the group said she wanted people to stop avoiding her, to come
up and say, "I'm sorry." But another participant said
she was sick and tired of people saying they were sorry.
Mechanisms
for communication among physicians on a care team are in place.
Nurses may have to create their own mechanisms and include themselves
in
the loop. They also may have to propose changes in the system.
Making
decisions
When there is open communication, it is possible for nurses to
offer patients and families choices and the ability to participate
in decision making.
"There
are a lot of decisions, and it would be helpful for people to
know what those are," Seyda said.
For example,
Pappas said, when a child is stillborn, one family may find staying
on the maternity floor incredibly painful, but another may want
to be there, to validate that they had a child.
Or, when faced
with a terminal prognosis, one family may seek aggressive treatment
right up to the end, while another will prefer only palliative
care, said University of San Francisco School of Nursing Professor
Betty Carmack, Ed.D., RN.
In other words,
every situation is unique, and nurses can intervene more successfully
if they understand what a given situation means to the individuals
who experience it.
Nurses also
need to speak up with physicians, said Martha Henderson, MSN,
NP, RN, who works in a program on aging at University of North
Carolina Hospital. When Henderson surveyed nurses, she found that
the pain of an ethical dilemma led 20 percent of them to consider
leaving their jobs, but she believes that this statistic will
fall if nurses become more skilled in communication.
In difficult
situations, nurses also should seek help from experts or consult
ethics committees. They can request training in communication.
After her
experience, Seyda, a market research consultant in Chapel Hill,
N.C., who is now on the hospital's ethics committee, is helping
produce a video about the experience of losing a child, "Creating
Community: Supporting Families When a Child is Dying."
Grief experiences
Pappas invites people in to talk about their grief experiences.
Projects such as these, part of a growing national interest in
improved care for the dying, provide new methods and skills that
can be transferred to any area.
Nurses also
need to be aware of how their personal experiences will affect
their sensitivity toward the needs of patients and families.
Psychotherapist
Erica Rothman, who serves on the hospital's ethics committee,
said that those experiences can get in the way, but can really
add to it, too.
Rothman produced
a video for families, "Those Who Stay Behind: When a Family
Member is Dying."
In instances
when Rothman has shown the video to health care professionals
and let them talk about their own experiences, it has helped promote
understanding of how those experiences affect them professionally.
"Until
you understand your own attitudes, feelings and beliefs,"
Carmack said, "it is hard to be responsive to a client."
Cultural beliefs and values, those of the nurse and the family,
can play a significant part, too.
The nursing
shortage means that new nurses are dealing with situations they
wouldn't have had to handle in the past. Seasoned nurses often
are overwhelmed and frustrated.
There will
be times when a nurse says or does the wrong thing or situations
and people are simply too complex, and nurses are expected to
take on so much.
"Don't
beat yourself up about it," Carmack said. "Learn from
your mistakes and go on, because you'll be presented with another
situation that you can handle differently."
After her
heartbreaking office visit, Seyda sat down and penned 30 pages
about her experience with Dylan.
She sent it
to the physicians and nurses at University of North Carolina Hospital.
About five of those pages were recommendations.
"There
were situations that could have been better, and I suggested ways
to make them better. But a lot of it was reinforcing the good
things that were done. Nurses may not know how great a lot of
these things are, things that in the grand scheme are minor, but
that were so helpful," she explained.
She added,
"Overall, the nurses were wonderful. They were with our son
24 hours a day. They were great at explaining all the medical
and technical stuff at a level we could understand. Nurses have
so much interaction with the family, so the opportunity is there
for good communication," she said.