Dottie's Story

 

Dottie Grad

In January, 2004, our mother, Dorothy Fortune Etheridge, underwent lung surgery in a NH hospital. We will never forget the drive to the hospital that morning, reassuring her she’d be home soon with her surgery behind her.  She was calmed to know her children and grandchildren could visit, and that she would be back home in only 5 days.

Things did not go as planned by any measure, or as we were assured they would.  Her surgery began a nine month odyssey of hospital and physical rehabilitation stays from post-surgical sepsis, dismissed family concerns resulting in failure to rescue, multiple infections, delays in treatment, a missed diagnosis of broken ribs from being dropped during a chair-to-bed transfer, and in the end, her eventual death from an 'adverse event' (anticoagulant overdose) that was not disclosed to us (we learned from reading her medical records).  She died of a massive brain hemorrhage on October 6, 2004, after being readmitted for pneumonia.

Two weeks after her initial surgery and development of post-surgical sepsis in January, 2004, we had her transferred to a hospital in Massachusetts.  Why? Because we felt strongly that some of the staff had given up and were resigned that she was doing to die.  We also came to understand they were not equipped to deal with the severity of her post-surgical complications. After a family meeting, we decided we had no other choice but to move her.

We will forever be grateful to her pulmonary doctor who agreed with us and took charge of her transfer.

After transfer to this new hospital, she had no serious complications and made daily progress for six weeks. The care and communication with us was nothing short of amazing. On arrival, she was given her very first full bed bath, complete oral care and hair shampoo (daily hygiene helps prevent infections).  She was put in the prone (face-down) position with sandbag weights on her back to move the lungs forward and allow for better expansion and breathing. Immediately, her ventilator was adjusted to lower levels to allow her to do some breathing on her own. These are just a few of the immediate adjustments made in the overhaul of her treatment plan.  She progressed daily, and we, her family and round-the-clock advocates, were treated with respect and as valued members of the healthcare team.  If we had the foresight to insist that she have her surgery at this hospital, or if she could have fully recovered there, we believe she’d be still be with us.

Instead, she became one of the shocking statistics of a large study done in 2010, revealing that 15,000 Medicare beneficiaries die every month from largely preventable complications. 180,000 death per year.

Our mother was a kind, hard working, and compassionate person to anyone she met. During her long recovery, she peristed and remained stoic with quiet grace and determination.  She never complained.  But at one point, she asked us to write letters to healthcare administrators and do what we could "to be sure this doesn't happen to someone else".  

Little did we know, that those letters and one step inside of a legislative testimony room would lead to the realization that patients' voices were not represented or heard. This has led to impassioned advocacy work to improve patient safety, raise the voice of patients, and help empower healthcare consumers and patients to be engaged and prepared.                                                                                                

 Dottie's four daughters in 2005
after attending The ARDS Foundation fundraising event
in their mom's memory. 

Lessons Learned

1. The hospital you choose for high risk surgery truly matters. Do your homework.  Our mom wanted to have her operation close to home so her family could easily visit.  In hindsight, we should have insisted she have it at a high-volume pulmonary surgery center, with a specialized surgical intensive care unit (SICU) only an hour away.

2.  The longer you are in a hospital or health care facility, the higher your risk for infections, more complications or medical harm.

3. A major contributor to harmful or deadly patient outcomes is something called Failure To Rescue.  This is when healthcare staff miss the signs of a patient who is getting much sicker or they don't act on the concerns of family members or caregivers.

If your concerns in a hospital or healthcare facility are falling on deaf ears, or you are feeling worried about your condition (or a loved one's), then escalate your concerns immediately. Hospitals now have systems in place to address urgent, quality of care issues.  Go to our Filing Complaints page to learn more. 

3.  When serious or deadly medical errors happen, and then are not disclosed to patients and families, it feels like a ‘hit and run’, and long-term, complex grieving and/or emotional harm can result.  The ‘maybes’ resurface over and over as families grieve: ‘Maybe if I spoke up louder, or insisted sooner, or didn’t ever leave her alone, or.....

Although we asked, and received a meeting with hospital leaders after our mom's untimely death, and our review of her medical records, they would not explain what their investigation revealed. They waited until the 3-year statute of limitations for filing a lawsuit had long passed.  In 2009, we received a letter of apology and a long list of all the improvements they made as a result of our mom’s preventable death from a medication overdose and failure to rescue. It was too little, too late.

4. Poor quality care is very expensive. Together, Medicare and the State of New Hampshire’s retirement health insurance plan paid out approximately $1 million dollars for care that should have been a fraction of that. A five-day hospital stay turned into nearly nine months of very expensive care. 

5. Providing honest, compassionate communication and emotional support to grieving families shouldn’t end when a patient dies of a medical mistake (an 'adverse event'.)  On the contrary, this is when it's needed most.  We were not able to make an informed decision about an autopsy, because we didn't have the truth or facts when we declined one at the time of her death. 

6. Between the time our mother died in 2004 and 2019, three more family members have experienced serious medical errors. Recently, a diagnosis of cancer that was not cancer.  It took going to a 'Center of Excellence' to get to an accurate diagnosis (which we are so grateful for).   In 2018, another family member received an overdose of pain medication after orthopedic surgery, requiring that Narcan be given to rescue her.  In 2010, a delayed cancer diagnosis occurred because a primary care doctor labeled a family member's pain symptoms as 'drug seeking behavior'. Instead, it was cancer that had spread. 

This is just one family. Estimates are that over 250,000 people die of medical errors every year, and over a million are harmed in some way. 

We want to help bring caring, compassion, trust and accountability to healthcare by advocating for changes that result in care that is safe, high quality, patient-centered, ethical, and humane.

First and foremost, we want to engage patients and healthcare consumers to be active, knowlegable participants in their care, especially before they engage in high risk treatments.  Our goal is to bring the patient-family voice to healthcare decision-making and ensure those voices are valued and acted on. 

As you navigate your way around this site, we hope you will find the information you need to help you become a more prepared and engaged patient.

 News

Choosing The Right Hospital
From the Leapfrog Group

Condition H ('HELP') Brochure for Patients and Families
From The Institute for Healthcare Improvement (IHI)

Healing After Harm Is Launched, Addressing the Emotional Impact of Medical Errors
The Betsy Lehman Center, October 20, 2016

 



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