Disregard of the patient voice contributed to critical errors in treatment

October 25, 2016

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Cathy Litwin looks back on her mother's final days as a dizzying slide towards an untimely death that might have been avoided if not for a series of missed health care cues and shoddy communication. 

Cathy's mother, Barbara, died while in palliative care at a London, Ontario hospital on March 10, 2008. She'd been transferred to the hospital from her long term care facility about two weeks earlier, suffering from a ghastly, gangrenous foot infection. 

Cathy recalls the grim day she first saw that wound. Her sister had been in to see her mom at the seniors' centre and thought she'd seemed strangely lethargic. When Cathy, a registered nurse, and her husband dropped in on her mom later that day, they also were alarmed by her condition. She had no appetite and didn't feel like getting up. 

Then one of her mother's personal support workers, a young woman whom Cathy did not know, quietly called the couple closer to the bed. 

She needed to show us something, but before she did that, she closed the door and she looked very frightened, but she looked like there was some urgency to what she had to share with us," Cathy recalls. 

"She asked us if we had strong stomachs and my husband spoke up right away and said, 'I don't.' He immediately left the room. I wasn't sure what I was in for. She lifted the blankets and I'll never forget the smell. 

"She lifted the heel posey off mom's foot and mom had a very dark black spot about 5 cm in diameter on one of her heels. Having a health background, I knew that it wasn't a good place for her to be. It was necrotic. She needed some help." 

Her mother, then 85, had only recently made the transition from independent living into long term care. Her health had taken a turn for the worse after a treatment stay in hospital had cleared up one condition but left her with another — hospital-acquired pneumonia. She rallied from that ailment, but afterwards was too weak to return to her apartment, and so made the move to a long term care home. The facility she went to hadn't been her mother's first choice, Cathy said, but it seemed likely the desired centre would soon have a vacancy for her. 

But now here she was, bed-ridden, with a sickening foot infection. Cathy knew her mother needed immediate attention. After some difficulty she found the duty nurse and reported what she'd found. The response she received stopped her cold. 

"When I asked the nurse to call an ambulance because my mom need to go to the hospital and get treated with IV antibiotics and I believed that she was going septic, the nurse responded, 'Your mom is a DNR.' I turned to her and said my mom is a DNR, do not resuscitate if her heart stops, but she still wants to be treated and needs to be treated." In that moment, Cathy remembers feeling both shock and anger. 

"The nurse was making no distinction between do not resuscitate, and the need to treat the infection. We need to begin to have conversations with patients and families about end of life requests. We need to make sure that health care providers understand what the end of life requests are of those they care for. We need to have it done early and it needs to be updated on an ongoing basis." 

An ambulance was called that day, and her mother was taken to hospital, but again not before the duty nurse had difficulty relating Barbara's medical history and what medications she had been taking. 

For the two weeks that followed, Cathy and her sister looked on in dismay as their mother underwent excruciating treatments to debride or scrub clean the infection -- so deep that it had spread into the bone. Those treatments were to no avail. Her mother was finally told her only recourse was surgery to amputate her leg below the knee. Her chances of surviving the operation were not good, and if doctors discovered the infection had spread even further than they feared, they would have to amputate up to the hip. 

"It was at that time that mom decided that no, this is the time that I would like to end my life. So that decision was made. Mom went to the palliative unit where she would spend her final days," Cathy recalls. 

"Mom was of a very strong faith and she always believed that there's a much better place to be." 

It wasn't hard for her family to come to terms with the palliative decision but it was incredibly difficult to dispel their suspicions that more could, and should have been done to save her from having to make such a mortal choice. 

"Both my sister and I are nurses. We put the trust in those that were providing the care. We didn't want to ever come across as being forceful or nosy or not trusting how she was being treated. We wanted to put the trust and it was a lot for us not to feel guilty about how we could have actually prevented a little bit earlier, but we can't look at it that way. We're beyond that now, but those were initial emotions we had as healthcare providers. What could we have done? But I think that patients and families need to be brought in a lot sooner when things aren't going right." 

After Barbara's death, Cathy contacted the provincial health ministry and pressed for a review of the care home and the treatment her mother had received there. An investigation found that she'd been on the wrong antibiotics, that some of her blood readings were not managed appropriately, that there seemed to be a knowledge gap in how to care for such a complex wound. To this day, the family has never received a phone call, acknowledgement of regret or apology from the centre. 

Cathy suspects poor communication played a big role in her mother's rapidly deteriorating health as well. She also wonders about that brave support worker, whom she never saw again, and what trepidation she must have felt in coming forward to alert the family. 

"If I was to see the personal support worker again, I would wrap my arms around her and give her a big hug and say thank you and you did the best that you could." 

Cathy's mother had lived a very full and active life. As a young girl growing up on Vancouver Island, she loved both the water and the hard courts, playing plenty of basketball through her school years. During the summers she would care for her grandparents. For her, family always came first. Being raised in a military family, mom in the air force, dad in the armed forces, the daughters had the opportunity to travel a lot. For four years the family lived in Europe. 

"Mom enjoyed her Blue Jays. My parents had a place in Florida, and they would always spend their winters down in Florida, hanging out with the Blue Jays in Dunedin in their training camp. Sunday dinners were always around the Blue Jay game. That was lots of fun. That's how we remember mom." 

It was memories of her mother that prompted Cathy to shift into a patient safety specialist role at her hospital in 2011. It is also about then that she became involved with Patients for Patient Safety Canada. 

Says Litwin, "I see huge improvements. I see the patient's voice being brought to the many tables. I see boards being more vocal about engaging the patients. Yes, we still have a lot of work to do but we have come a long way and there are a lot of organizations who have patient experience at the forefront of everything that they do and the patient's voice at the forefront of everything they do." 

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