Behind the wall of silence in health care are the unanswered questions of parents whose children experienced harm at the hands of their caregivers. In an industry where information and communication are crucial to quality, parents’ voices often go unheard. Although that has begun slowly to change, providers could benefit from following the HEART model of service recovery, which includes hearing the concerns of patients and their families, empathizing with them, apologizing when care goes wrong, responding to parents’ concerns with openness, and thanking the patient and family.
Key Points
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Today there is no lack of discussion about health care delivery and quality.
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Quality from the parent’s perspective includes access to care, responsiveness and empathy, good communication and clear information, appropriate treatment, relief of symptoms, improvement in health status, and safety and freedom from medical injury.
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If a medical injury occurs it is important to listen to the parent, acknowledge the damage, give an honest and open explanation and an apology, acknowledge anxieties about future treatment, and provide practical and financial help quickly.
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Nursing shortages, overtime, financial obligations, and insurance company guidelines interfere with the quality of care.
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Work as a team, review all the information, establish a plan, communicate between specialists, remove arrogance and intimidation, and have a common goal to heal.
Authors’ background
Dale, a childhood educator in New York, is mother of Dan, Andrea, and Justin and grandmother to Isabella. When Justin was 11 years old he underwent minor surgery on his ankle. During the procedure, something went terribly wrong and Justin’s heart arrested. Justin was urgently transported from the surgical hospital to a pediatric intensive care unit where Dale and her husband experienced every parent’s worst nightmare: the preventable loss of their loving, healthy child. Error on error killed Dale’s son and her faith in a medical system that was meant to comfort and heal. Determined not to let this unbearable pain happen to another family, Dale has spent more than 10 years working with the health care sector, trying to reduce the fear and secrecy that surrounds adverse events. As part of this endeavor, Dale founded the Justin’s HOPE Project at the Task Force for Global Health. Justin’s HOPE, in partnership with the Institute for Healthcare Improvement, provides yearly scholarships to health caregivers who are committed to patient safety and providing a safe health care environment for patients and their families.
Marie has three children (Finn, 12; Stella, 10; and Zoe, 8) who have experienced the usual spectrum of childhood bumps and illnesses while living in New Zealand, Australia, and the United States. For the last 10 years Marie has worked in the field of patients’ rights and complaints resolution, including 4 years as an advisor to the New Zealand Health and Disability Commissioner and a year as a Harkness Fellow at the Harvard School of Public Health. Marie currently works as a Senior Research Fellow at the University of Melbourne researching the influence of patients’ complaints on quality and safety of health care.
Authors’ background
Dale, a childhood educator in New York, is mother of Dan, Andrea, and Justin and grandmother to Isabella. When Justin was 11 years old he underwent minor surgery on his ankle. During the procedure, something went terribly wrong and Justin’s heart arrested. Justin was urgently transported from the surgical hospital to a pediatric intensive care unit where Dale and her husband experienced every parent’s worst nightmare: the preventable loss of their loving, healthy child. Error on error killed Dale’s son and her faith in a medical system that was meant to comfort and heal. Determined not to let this unbearable pain happen to another family, Dale has spent more than 10 years working with the health care sector, trying to reduce the fear and secrecy that surrounds adverse events. As part of this endeavor, Dale founded the Justin’s HOPE Project at the Task Force for Global Health. Justin’s HOPE, in partnership with the Institute for Healthcare Improvement, provides yearly scholarships to health caregivers who are committed to patient safety and providing a safe health care environment for patients and their families.
Marie has three children (Finn, 12; Stella, 10; and Zoe, 8) who have experienced the usual spectrum of childhood bumps and illnesses while living in New Zealand, Australia, and the United States. For the last 10 years Marie has worked in the field of patients’ rights and complaints resolution, including 4 years as an advisor to the New Zealand Health and Disability Commissioner and a year as a Harkness Fellow at the Harvard School of Public Health. Marie currently works as a Senior Research Fellow at the University of Melbourne researching the influence of patients’ complaints on quality and safety of health care.
Introduction
Health care providers that encourage patients and parents to be “the eyes and ears“ of patient safety gain many insights into opportunities for improvement and risk prevention. Yet, in the world of quality improvement the voices of patients and their families often go unheard. As mothers of children who have benefited from and been harmed by pediatric care we are grateful for this opportunity to share our perspectives on patient safety.
Our views are informed by our personal experiences, and enriched by conversations and written communications with hundreds of families. Many of the parents we have spoken with lost not only a child, but also their trust in medicine as a result of a senseless and preventable medical error.
As they were administering the anesthetic to James he looked at the anaesthetist and said “don’t hurt me.” Those were James’ last words.
Others recall extraordinary care and moments of compassion as doctors partnered with them to provide their child with the best possible care.
It is the memory of one act that still brings tears to my eyes. In the junction between hospital buildings there is a join in the floor. This caring nurse stopped Chloe’s trolley and individually lifted each wheel over the join to prevent her broken neck from being jolted. Compassion is revealed in the smallest acts.
There is no substitute for being present with these families as they recall their experiences of pediatric health care: the good and the bad. To communicate some of their sentiments and suggestions with the reader, we have woven their words within this article wherever possible. Through different yet connecting eyes we offer the parents’ view of patient safety and share our hopes for the future.
This article is arranged in five sections, which correspond to the five parts of the HEART model for service recovery: H ear, E mpathize, A pologize, R esolve, and T hank. Variations of this model are used within and outside health care by front-line staff who seek to resolve problems by putting the needs of the affected person first.
Service recovery and the HEART model
As parents, we do not expect perfection. We understand that people make mistakes and we understand that no part of life is entirely free from error or harm. However, we do expect that systems are designed with safety in mind and that when things go wrong someone steps in quickly to fix the problem. Unfortunately, health care performs poorly on both counts compared with other industries with stronger cultures of safety, service, and learning. Day after day, children are harmed by care that was intended to heal. Frequently, parents seeking to understand what happened and why are faced with a wall of silence. Too often, injured families are treated as adversaries rather than allies in the search for safer care.
Much has been written about the negative impact of medical malpractice litigation on doctors’ reluctance to speak openly and honestly with families in the aftermath of adverse events. Certainly, the punitive, individualistic, adversarial approach of tort law runs counter to the nonpunitive, systems-oriented, cooperative strategies promoted by leaders of the patient-safety movement. Yet it is too simplistic to suggest that the fear of legal action is the only obstacle standing in the way of true partnership with patients and families who have been injured by the very care that was intended to heal. Medicine has a long tradition of exercising paternalistic sovereignty over patients’ information and “circling the wagons” in defense against accusations of patient harm. Even within such countries as New Zealand, where malpractice litigation is effectively barred and compensation is provided on a no-fault basis, fears of reputational damage, professional discomfort with uncertainty and failure, medicolegal myths regarding the risks of disclosure, and an entrenched culture of self-protection still impede the willingness of some doctors to talk openly about and learn from adverse events.
However, the news is not all bad. Many industries outside of health care have effectively designed safety features into the workflow (ie, limited hours for taxi drivers, checklists for pilots). In hospitals and clinics around the world, an increasing number of providers are finding the courage to “do the right thing” with or without the support of legislative or policy reform. Examples include the “3R’s program” implemented by COPIC in Colorado and the “seven pillars” process developed by the University of Illinois Medical Center at Chicago.
One simple, yet effective, model of service recovery that goes a long way toward meeting the needs of injured patients and their families is the HEART framework. Variations of the HEART model, including the Cleveland Clinic “Respond with HEART” program, are used by several health care providers in the United States and elsewhere. As explained by Brenda Radford, from Duke University Hospital, HEART has two aims: “The first goal is to prevent patient concerns from occurring … If that fails, service recovery is simply making right what went wrong.”
By using the HEART model, providers can respond with compassion and learn from every mistake. The following sections break down each of the five steps and provide context for providers interested in applying the model to their own practices.
Hear
Parents have a critical role to play in the delivery of safe, high-quality pediatric care. We can assist with diagnosis, management, and administration of treatment. We can provide an extra set of “eyes and ears,” noticing subtle changes in our child’s condition and alerting providers to possible risks and errors in the delivery of care. However, we can only fulfill that role if our voices are heard and respected.
It had been extremely distressing that no one would believe Simone was seriously ill, when I – as her mother – was all too aware of her precarious state. Then, when it was almost too late, I was being treated as if I had not acted soon enough.
Honest information, clear communication, and a participative approach should be the watchwords in promoting safety at all levels of pediatric health care. Some hospitals do this well.
Upon arrival we were shown around, introduced to the nurses, told all about the monitors, and everything was fully explained to us … Nothing was ever too much bother, every question we asked was answered no matter how silly it sounded … Whenever a doctor or nurse did anything to Oliver it was explained fully, what and why they were doing it … Everything was parent and child oriented.
Yet many parents feel unsafe to speak up, worry about being labeled a “difficult parent” if they ask too many questions, or face exclusion from conversations about their child.
When I saw [the doctor] he was always accompanied by other people and seemed to be talking to them and at me as opposed to including me in the conversation and making sure I understood exactly what was going on.
Likewise, many children who are old enough to have a voice in their own care are treated with little respect for their dignity or independence.
No one even told me their name. They just started poking at me and talking amongst themselves like I wasn’t even in the room.
For health care providers the hospital environment is a second home: routines are familiar, everyone’s role is known and understood, and medical jargon is readily interpretable. However, for parents the hospital environment is a frighteningly unfamiliar place and explanations are often inadequate.
No one gave us any ideas on what to look for, to check if there was a change in her condition.
From clothing to meals, from visiting hours to pain relief, choices are repetitively taken away from parents. Little is posted, little is clear.
The worst aspect of her second operation was the “losing control.” There was nothing we could do. We had to rely entirely upon the “experts.”
Even the process of informed consent, which is intended to support choice and understanding, is frequently derailed through the use of vague and legalistic documents and forms. For a patient or family member who is already feeling frightened and vulnerable, quickly signing and pushing the form away may feel safer than struggling to work through language and concepts they are ill-equipped to understand.
From a parents’ perspective, three key elements in being heard are (1) trust, (2) openness, and (3) respect. Trust is present when we feel confident that a provider has our child’s best interests at heart, that he or she has the time to listen, and that he or she will take our concerns seriously. If we feel unable to trust our child’s doctor, we may turn to another member of the team (a nurse, a social worker, a health care assistant, or patient advocate) or we may simply remain silent and uneasy.
My concern at the time was that she was on a general nursing ward with a severe condition and no attempt of barrier nursing to help prevent her contracting further infections. I did not voice my concern at the time. It was difficult to criticize professionals.
Openness requires providers to share the information we need to participate in meaningful dialogue about our child’s care. How can we understand our child’s illness and medical needs when we do not have easy access to his or her test results and medical record? How can we explore our options when medical journals keep important research findings locked behind expensive pay walls? How can we choose the safest care for our child when we do not know how many times the surgeon has performed this procedure or how the local hospital’s infection rate compares with the facility down the road? The health care system’s ongoing failure to provide parents’ with ready and timely access to information relevant to their children’s care is inexcusable.
We were not offered any part in the decision making. We were just told what would happen. The alternatives were not discussed with us … With hindsight we feel that it would have been helpful to have been confronted with the full facts, and to have been given an indication of the implications and the options open to us.
Finally, respect involves recognizing and valuing parents’ knowledge and perspectives. Many parents experience a powerful sense of intuition that something is wrong long before a doctor is able to put a name to the problem : a voice inside our heads warning us to be watchful and wary. Doctors disregard a parent’s inner voice at their peril.
My wife had always felt sure that there was something else wrong with Oliver. But the doctors brushed it aside. It would be another two years before anyone else would take my wife’s fears seriously.
Moms and dads should be reassured that their gut feelings matter and encouraged to speak up if they feel worried about their child’s care or clinical condition. A good clinician will ask: “Do you have anything inside that is bothering you because we would really like to hear it? Your thoughts can change the plan for the better.” For some children, having their parents’ voices heard in time can mean the difference between life and death.
Empathy
When an adverse event does occur, parents have different needs depending on the nature of the injury, relationship with the providers involved, previous health care experience, and cultural values and norms. Regardless of background, parents of an injured child always remember a compassionate moment from a child’s caregiver; a gentle touch or a shoulder to cry on:
Two nurses impressed us with their care in particular. They communicated empathy to us in our distress and demonstrated concern for our child.
Facing the raw emotions of a parent whose child has been injured is not easy. The providers involved often are dealing with their own shame and fear, and they may be ill-prepared and poorly supported in responding to the consequences of an adverse event. Yet, it is at that very moment when the injured patient and family need their care the most.
She seemed uneasy with us and the situation we were in. It was as if she was not sure what to say or was unsure how we would react. She remained detached from us. [It] was a deeply lonely experience.
The death of a child is a time of unparalleled grief and vulnerability. Table 1 illustrates the scope and severity of symptoms reported by a group of 75 parents after the loss of a child. Many of these parents recall that being left alone at their lowest moment of despair was the most painful part of an already devastating experience. Parents need comfort when there is nothing else left to give.
