by Olga Pierce
ProPublica, March 21, 2013, 2:30 p.m. (FiDA highlight)
“How is it possible to move past
medical harm when every single aspect of life is impacted by it – when
absolutely everything a person believed about doctors, lawyers, oversight
agencies, insurance companies is turned upside down and inside out?” – Robin
Karr, patient harm survivor
A slip of the scalpel, an invisible microbe, a
minute miscalculation. It's estimated that something goes wrong for more than
one million people per year during a visit to the hospital. Some patients
experience a full physical recovery. Some are never fully healed.
But even if patients are lucky enough to
physically heal, their lives may never be the same. Sleep becomes elusive,
relationships break apart, and a wall of silence appears between patients and
the doctors they trusted.
What follows is a conversation of sorts between
some of the 1,550 members of our ProPublica Patient Harm Facebook
community and Dr. Gerald Monk, a
professor at San Diego State University who specializes in dealing with the
aftermath of patient harm for both patients and providers. We asked
group members to share their questions and thoughts about the aftermath of
patient harm, and then got Monk’s response. What emerges is a portrait of the
long journey that begins after the unthinkable happens.
(Monk’s comments are not a substitute for
treatment by a mental health professional. They have been edited for clarity
and length. Each quote in italics comes from a member of ProPublica’s Patient
Harm Facebook group.)
PP: What symptoms can survivors of patient harm
expect?
“I find I think about what happened day
and night.” – KariAnn Syna
“Survivors have “very real PTSD symptoms,
including avoidance, difficulty sleeping, etc.” – Debra Van Putten
“I experience ‘flashbacks.’” – Georjean
Parrish
Dr. Monk: The
psychological symptoms are similar to those people suffer when exposed to
physical, sexual and psychological violence. What all these things have
in common is that they take place in settings where we reasonably anticipate
that we will be safe and secure. We tend to believe the maxim that the doctor
will do no harm.
The symptoms can be physical, such as headaches
and sleeplessness; or psychological, like depression, anger, guilt and being
vulnerable to drug abuse. Patients can even blame themselves. A survivor
of harm surely knows others that have had the same medical procedure without
suffering harm, and so they can feel they somehow contributed to the error
because they were at the wrong place at the wrong time with the wrong health
care provider.
PP: Many group members expressed feelings of betrayal by the health
professionals and authorities they thought were there to protect them. What
phenomenon are they experiencing?
“A patient who is
denied validation for their medical injury is betrayed by the medical system
they have learned to trust as an official authority. It is a shocking
experience to realize that everyone one has thought about trusting this
authority is suddenly wrong.” – Garrick Sitongia
Dr. Monk: Patients can feel
especially violated in the context of health care. Not only do patients
anticipate being safe and secure, they expect to be healed. Following an
adverse medical event, a patient may experience a lifetime of heartbreaking
anguish and suffering.
PP: Group members describe a related problem. Others are reluctant to hear their new understanding
of the health care system and dismiss them as crazy or tell them “it’s all in
your mind.”
Dr. Monk: Doctors are trained to be
perfectionists. They are expected to answer difficult heath care problems and
to know how to heal. Sometimes doctors are also pressured to gain legitimacy by
exuding a sense of confidence and certainty when they don’t actually know how
to make a patient well.
As we know, the reality is that health care is
far from perfect. Medicine is inexact yet doctors face the expectation that
they will fully understand the human condition and know all of the complexities
about what ails us.
This is an onerous responsibility, and this
territory can be ripe for misunderstanding between health care providers and
the patient and family members. Doctors may feel that patients haven’t
communicated all of their symptoms or followed through on their instructions,
and this can leave patients and their families feeling blamed.
PP: Many patients say they encounter a ‘wall of
silence,’ where providers are unwilling to discuss what happened and which
hinders the healing process.
"There can be a “refusal of anyone
to talk about the emotional impact or an error on both the provider, care team,
patient, and their family ... it feels like a systems error ends up being an
individual problem and no one wins.” – Sherry Reynolds
Dr. Monk: The
health care environment is still dominated by the culture of “deny and defend.” Most
physicians have been trained not to apologize when things go wrong and warned
by their mentors that it can lead to a lawsuit. Actually, the opposite is true.
Harmed patients who do not receive an apology and an open and transparent
investigation about what went wrong are often left with a strong desire for
justice. These feelings of injustice
drive them toward a lawsuit.
But legal action can make things worse for the
patient. It seldom produces any sense of justice and healing and often leads to
even more trauma. In contrast, an open
and heartfelt acknowledgment of an actual or perceived medical error could lead
to psychological healing.
Another distressing part of this “deny and defend”
culture is that many doctors and nurses actually want to apologize when things
have gone wrong. Many providers went into medicine because they want to be
healers and bring good to people’s lives. When things go wrong, it can have
catastrophic consequences for providers. They often suffer what is called
‘second survivor’ syndrome. They are traumatized by causing the patient harm
and they are isolated and trapped with secret knowledge about what really
happened.
Providers are often called the “second victim”
in cases of patient harm, and struggle to handle deep feelings of guilt and
remorse.
Fortunately, a growing trend is changing the
culture of deny and defend. For example, large health care systems within
California, Illinois, Maryland, Missouri, Massachusetts, and Virginia are
trying to overcome the barriers in the health care environment to open, honest
disclosures and encourage apologies when things go wrong. Some doctors are doing the same: disclosing medical
errors and making heartfelt apologies. These conversations can be restorative
for providers, patients and their families.
PP: Survivors of harm also describe themselves as
isolated from their families just when
they need them the most. Sometimes loved ones have trouble coping with the
damage, other times they don’t understand why the victim of harm can’t ‘just
move on.’
“My husband never doubted me, but the
challenges financially, physically and emotionally after suffering irreparable
damage by my former dentist … destroyed our happiness ... He and I separated.”
– Tina Gomes
“I have no family now
due to what was done to me ... This has proven to be too traumatic for my
family to endure so I find myself with no family and no support. It’s as if I’m
dead.” – Robin Karr
Dr. Monk: The harmed patient can
become frozen with unprocessed emotional trauma
following the harm they suffered. They can become stuck in emotional
distress and psychological fragility. Loved ones and friends may become
exhausted by the victim’s ongoing anguish. They may start to recoil from
hearing any more about this ugly situation.
Significant others can feel powerless to do
anything other than encourage the harmed party to go to court or stay with a
legal process. That can take more than five years, cause significant financial
strain, and many cases are decided in favor of the health care professional.
This contributes to the paralysis for the family and the harmed patient. These
powerful stressors often lead to separation, divorce and alienation of family
members.
PP: The feelings of isolation
or abandonment are not necessarily limited to friends and family. Many social
relationships can be strained, and survivors can feel shunned.
“We went from being the perfect family to
being seen as the Addams family. When you have a child die from 100 percent
medical error you become every mother’s worst nightmare ... It is a grief and
pain most people, fortunately, can never understand and are afraid to come
near.” - Lenore Alexander
Dr. Monk: There
are no societal rituals about how to grieve the losses that come from serious
medical error in a socially acceptable way.
While people can be kind and compassionate in
their efforts to help, eventually there may be a growing sense that ‘enough is
enough’ and survivors need to put this behind them and move on with their
lives.
When family and friends tell the survivor of
patient harm to move on, or suggest they are psychologically unwell, this can
add feelings of shame and guilt to the grief they already feel, which may
actually make the healing process longer.
PP: In addition to emotional trauma, there may
also be lasting health effects that drag on for years or even permanently.
“How do you ever move on, when you live
in a damaged body that reminds you every minute of every day what you lived
through?” - Georjean Parrish
“I try to cover up my now ugly body with
nice clothes...my body looks deformed.” - KariAnn Syna
Dr. Monk: For a few people there
is a form of loss and grief caused by a grievous physical injury that seems to
take over a person’s whole being. Physical prowess and attractiveness can be an
important part of how people define themselves. Day-to-day physical injuries
and impairments caused by a medical error remind victims of what they no longer
have in strength, mobility, being pain free and physical appearance.
Some survivors know their body has been harmed
forever but they still can’t believe it. Time is moving along but they are not.
Yearning for the life they had before the trauma, thoughts and images of the
person they once were frequently fill their mind.
PP: Some survivors find the struggle to find
acceptance or forgiveness an impediment to moving on with their lives.
“It took until I was finally diagnosed
and two surgeries later to even begin to be able to ‘let go’ and ‘forgive.’
After I got Medicare and could go to doctors ... who listened and understood, I
could begin to be grateful and that’s when healing starts.” - Anna Gardiner
“A big problem is one of acceptance.” How
do harmed patients separate accepting their damaged selves from feeling like
they are saying that what happened to them was acceptable?” - Jeri Tresler
Dr. Monk: The desire for revenge can be a common reaction among patients who
have survived a terrible medical error or for families who have had a loved one
die because of a medical mistake. This is
compounded when the expected legal punishment falls far short of expectations.
Survivors of serious medical error can feel
shocked and horrified by the intensity of their own vengeful impulses when they
have recovered sufficiently to have those feelings. They may even withdraw from
community support because they feel ashamed of wanting revenge.
In many Western
cultures, the desire for vengeance is taboo, and society instead pressures
victims of harm to ‘turn the other cheek’ and forgive the perpetrator. But
misplaced efforts to encourage forgiveness before the victim is ready can just
cause more shame and distress.
Victims of an error need somebody who can
acknowledge, accept and support them around intense displays of emotion and not
withdraw from them but rather step toward them. Harmed patients at this
time can benefit from working with a counselor who is not frightened by
powerful feelings of rage, and revenge.
Counselors trained in dealing with trauma can
help survivors speak openly about their experiences without being brushed aside
or have the topic changed. This helps a harmed patient begin their own
emotional repair. An overarching desire for many harmed patients is to want to
move beyond the terrible emotional scars that may accompany the physical ones. Physical injuries may never be healed.
Thankfully, with qualified help, emotional injuries can be.
Illustrations by Marina Luz
Exploring Patient Harm: Have
you been affected by patient harm? Join our Patient Harm
Community on Facebook to share your experience with patients, family
members and others affected, or tell our reporters your story by completing our
patient safety survey.
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