“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.