We want very much for patients in health care settings to speak up for
themselves and get their needs met in situations where staff members are
less than helpful.  I commend Kathy and Jon for being able to do so.  But
after years of working in acute care settings with seriously ill children
and their families, I can understand how difficult it is for many people to
do this, especially at a time when they feel very vulnerable, frightened
and often in pain.  I was struck by the fact that sometimes families of
children in for a one-day "minor" surgery or procedure (like having tubes
put in ears, a hernia repair, or eye muscle surgery) seemed far more
overtly frightened than families of children facing major illnesses like
cystic fibrosis, cancer, or repeated surgery for congenital defects. Part
of this, I believe, is that those with major illnesses had had a chance to
become familiar with the hospital system and the way things worked over
time.  They knew the staff, who would be most helpful, what things had
worked to their benefit in the past, what (and who) to avoid.  They could
build on past experiences and had developed trusting relationships.
Newcomers to the system haven't had a chance to do this, and may easily be
too tense and overwhelmed to try.  This certainly applies to couples coming
in for childbirth.  All the learning from childbirth education class may be
tested when they encounter something unexpected or when they experience the
intensity of real labor for the first time.  They may agree to anything
just to get out of there alive.  This is where a birth attendant or doula
who is a familiar person can make a real difference.  As a nurse, I always
felt defensive when the subject of patients' advocates came up, because I
want nurses and doctors to be able to truly be the advocate for patients
and families.  But the reality is that families have to deal with multiple
caregivers, each with slightly (or sometimes drastically) different
messages and approaches.  It is very confusing and distressing, and it
takes a long time for people who are vulnerable and scared to learn how to
work the system to meet their own needs.  My father used to joke that
hospitals would be great places if it weren't for the patients coming in
and messing up "The System."  I guess we all need to continue to do our
best on all fronts: to have all staff work to be caring, sensitive to
individual needs, and consistent (we need to communicate with each other,
too); to help patients and families be as clear as they can in letting
staff know what they need, and what is helpful and what is not; to make
"The System" work for meeting the needs of real people rather than just
smooth operating; to continue to get as much preparation and skills as we
can ahead of time (breastfeeding education as well as childbirth
preparation); and to really listen to people afterwards so that we can
continue to improve the way we provide care. And of course, all along the
way, to encourage people to support families staying together.  (Than
goodness we are no longer in the era when parents were restricted from
visiting their hospitalized children!)
Anne Altshuler, RN, MS, IBCLC and LLL Leader in Madison, WI