About New Hampshire Patient Voices

In January of 2004, our mother Dorothy Etheridge underwent lung surgery in a NH hospital. The surgery began an 8 month odyssey of preventable hospital acquired infections, lapses in care, delays in treatment, complications, and in the end, her eventual death from errors that were never disclosed to us until we read her medical record.

• After removal, her tumor was found to be very early stage cancer (Stage IB with no lymph node involvement); and by all accounts we were told that because it was caught early, removal was the cure. In the end, her death was not related to her diagnosis at all, but instead the result of the care she received including:

• Septic shock and respiratory failure from a hospital acquired MRSA (Methicillin -Resistant Staphylococcus aureus) infection on day 4 after surgery.

• Failure To Rescue: She showed clear signs of sepsis; our family’s pleas for help were dismissed for over 20 hours as she displayed dangerously low oxygen levels, low blood pressure, weakness and confusion. She was eventually rushed to the ICU, unable to speak coherently and unable to breathe. Her blood gases (oxygen & carbon dioxide levels) showed that she was near death.

• Discovery of an early morning lung X-ray that showed she had pneumonia 7 hours before she was rushed to the ICU. The results of the X-ray were never relayed by her doctor to the nursing staff or her family until after she went into respiratory failure and was rushed to the intensive care unit.

• Her body went into septic shock that evening & we were told we would likely lose her.

• Another pneumonia 2 weeks later from the ventilator she now needed.

• A serious bedsore within 3 weeks of surgery. We had to ask for a family meeting to discuss her need for an air mattress, better skin care and a bath.

• At a physical rehabilitation facility during her recovery, she sustained 2 broken ribs from being dropped during a chair-to-bed transfer, and many more infections (lung, urinary, IV-associated). These delayed her recovery, prolonged her rehab and cost several hundred thousands in additional care.

After an 8 month hospitalization & rehab to recover from the complications of MRSA, she finally made it home and was enjoying time with her grandchildren, her garden, and even began a knitting project. But after a readmission for a fever, she died 10 days later in a New Hampshire ICU from a massive brain hemorrhage. We were simply told that she had suffered a serious stroke.

Dotty's four daughters after a Chicago ARDS Walk in her memory.

We had witnessed her right sided weakness that morning and expressed our concern to her nurse---but we were repeatedly reassured that her doctor had been notified and felt her symptoms were from "the strong sleep medication she had been given the night before."

After obtaining her records, we were shocked to learn that she had been given heparin, aspirin, and Lovenox-----all blood thinners while she sat in her chair bleeding that day. At 4pm a full 7 hours after she began displaying symptoms that morning, she began vomiting inside the CT scan machine and lapsed into a coma. At 5pm, she was given the antidote for an anticoagulant overdose (Protamine Sulfate) and Vitamin K in a belated attempt to rescue her. None of this was disclosed to us. We also learned that one week before this massive hemorrhage, she had needed and was given a blood transfusion.

What the record also revealed was that during the two hour window before they notified us and the CT scan had revealed the hemorrhage, there was a flurry of activity and attempts to reverse the damage that had been done, but it was too late.

Early that evening, we were met at the elevator by her physician who declared that she had suffered a stroke and that "everything had been done for your mother". He then offered a statement that implied that this was somehow her fault: "imagine if everyone used the resources that your mom had did----society couldn't shoulder that." (this care cost her insurance company & Medicare combined well over one million dollars)

After reading her records and realizing what had actually transpired that day, we could only assume that his comments to us must have served to relieve him of his guilt for misdiagnosing her, not rescuing her in time, and then not telling us what really happened.

When we contacted this hospital and asked for a meeting, the physician refused to meet with us. After filing a complaint with The NH State Board of Medicine, they found 'no cause for action' against the physician. Our mother's death certificate says she died of "a brain hemorrhage." There is nothing about the anticoagulants, her misdiagnosis, or their failure to rescue her. There is nothing about being given the antidote for an anticoagulant overdose (Protamine). Instead, "years of hypertension" was listed as the cause/contributing factor, when in fact our mother never had a diagnosis of hypertension and had never been treated for it before her hospitalization.

To this day, the hospital has refused to release the results of their investigation into what caused her massive brain hemorrhage, why she was put on three different blood thinners, why there was bloodwork missing from her record, and why serious medical errors were never disclosed to us before we were asked if we wanted an autopsy done. In the end, we declined an autopsy, and this continues to be an area of great regret.

What we have come to learn is that covering up the circumstances of a patients' death is perfectly legal and is common practice in hospitals across the country. Medical journals even debate whether these errors that harm or lead to death 'should' or 'shouldn't be disclosed.

As families of loved ones who have been the victim of these errors can testify, not disclosing leads to years of unresolved grief, guilt, anger, and fear of the system for their own future care. Within the healthcare system, non-disclosure perpetuates the cycle of secrecy, puts more patients' lives in danger, and violates a patient's/family's right to receive ethical and compassionate care.

As tragic as this ordeal was, it's important to know that along the way, there were also successes in our mother's care. It was these successes and the excellent care in the out-of-state hospital that we had her transferred to three weeks after her surgery that made us realize that the hospital you choose for treatment can make the difference between life and death.

We realized that there were key similarities on the hospital units where our mother's status improved dramatically and she received excellent care; adequate RN staffing, well-trained staff at all times (even on weekend and nights), a healthcare team that valued family input during daily multi-disciplinary team rounds, physician hospitalists or intensivists who provided 24 hour unit coverage, regular family meetings, limited touching & scrupulous hygiene to prevent infections, high staff morale, physicians who were up on the latest evidence-based care, were down-to-earth, avoided medical jargon, listened carefully, and were as respectful to patients/their families as they were to coworkers.

By researching, reading, and attending patient safety conferences, we also came to realize that what happened to our mom is happening to hundreds of thousands of other patients every year; loved ones who are dying of preventable causes in the very place we entrust to make them well again. How could this be happening in a country that spends more on healthcare than any other country in the world?

If we hadn't been with our mother every day to witness her demise, we could never believe this could happen. The national statistics and landmark studies about medical errors and infections serve as tragic validation that this is happening at an alarming rate. You are more likely to die from the treatment you receive in a hospital than you are to be killed in an automobile accident.

The hard lessons learned from our mother's tragedy have served to motivate us to do everything we can to shed light on this issue and to push for laws that ensure transparency, accountability and access to not only quality healthcare, but compassionate healthcare. Providing honest, compassionate care to grieving families shouldn’t end when a patient dies of a medical error, infection, or other hospital-acquired cause. On the contrary, this is when it's needed most.

We want to help bring the 'caring' back into healthcare by initiating changes that result in care that is safe, high quality, patient-centered, ethical, humane, and family-friendly. We strive to convince all healthcare stakeholders that patient care should and can be designed around the simple question: "Does this care first and foremost meet the physical, emotional, moral, ethical & cultural needs of this patient & their family?"

Through our work with patients, their families, healthcare leaders, and state legislators, our goal is to bring an important voice to healthcare decision-making in New Hampshire: The Patients' Voice.