Deadly Delay: A Story of the Consequences of a Broken Healthcare Process

I think this is an important story. Too often, discussions on business, change, process, leadership or any number of topics is abstract and theoretical.

The story of how a young woman and her family hit brick wall after brick wall in seeking help for her mental health issues is a reminder, yet again, of the enormous cost, loss and waste of broken process.

The failure of leaders to grasp the need for the end-to-end flow of activities, and the consequences when process does not flow, is starkly illustrated in an article by Carol Cowan-Levine in Walrus: “Death by a Thousand Cuts: How an army of mental health professionals let my daughter down.”

Carol Cowan-Levine writes about how her daughter Tamara took her own life:

At 4 a.m. on the morning of November 18, 2016—following 27 months in and out of Ontario’s medical system—Tamara jumped off the 29th floor balcony of her Toronto apartment building. In her suicide note, Tamara said she wanted her death to help provoke an “honest open dialogue about her life and mental health.”

I’ve read the article and also listened to Carol this morning on the radio (CBC Metro Morning) tell the story of her daughter and her experiences trying to get help. Throughout her conversation with the CBC’s Matt Galloway and in her article, words such as “fragmented” process and “silo” occurs again and again. Cowan-Levine:

…one of the worst defects of our mental-health system—something that cannot be measured in dollars, or manpower, or waiting periods—is its astonishingly fragmented nature. To understand this, you have to experience it from the inside. Those of us unfortunate enough to have done so might describe it as death by a thousand cuts.

Of course, fragmentation is a common complaint in all sectors of our health system. A Canadian suffering from diabetes or cancer might be required to see a primary-care physician in one facility, be tested a week later somewhere else, and then receive treatment by specialists in yet another location—all the while having to record and recite one’s medical history to each new doctor like a broken record.

But this ordeal is especially difficult for the mentally ill, who, when in crisis, often are not capable of describing their condition in any objective way. In many cases, people suffering from a mental health illness find it difficult even to leave their homes, let alone make themselves vulnerable to a succession of strangers.

There was no flow to the healthcare interactions her daughter experienced, but rather the endless repeating of information and activities as each actor in the process started from square one in their own patch of territory. Digitization, when it existed, was also of little help as even digitized information often sat in silos.

The incredible, wasteful repetition led to, and was compounded by, lengthy and deadly lead times.

My daughter spent 12 hours in her first ER visit. Doctors correctly identified her as delusional, and asked if she had ever thought about killing herself. Of course she had: Tamara was consumed by guilt, and felt an irrational sense of responsibility for every tragedy that occurred to anyone she knew. The doctors concluded, however, that there was “not enough evidence of threat to self” to justify her admission. She was released, and referred for an appointment at a mental-health clinic fourteen days later. That may not sound like a long time. But for someone in crisis, it is.

At the clinic, a doctor began the assessment all over again, authorized a brain scan—booked for several weeks out. Following that, Tamara met with another doctor, then had to wait seven more weeks for a complete diagnosis. At that point, she was told to return in two more weeks, this time to discuss meds, and then was told to return in yet another fortnight after she had tried the medication.

Whilst this catalogue of medical appointments is tedious to recite, such details are important—because it was this repetitive cycling through new doctors, each one providing his or her own fragmentary take on Tamara’s condition, that explains why Tamara’s experience with our health system was so Kafkaesque.

At each new encounter, she had to tell her tale from the beginning, build up trust with a new authority figure. At one point, she sought help through a family doctor to secure a referral to the foremost mental institution in Toronto; yet, once there, she encountered a doctor who simply did not have the information necessary to understand her, and suggested instead that she return to the same emergency department where she had started her odyssey two years previous, in 2014.

Another downward spiral set in. Two months later, Tamara herself called 911. And it was back to the ER, but at a different hospital, with different doctors. As before, I switched into my role as on-site advocate—filling out forms, pushing for reports to be transmitted from other hospitals, filling in the gaps, advocating, insisting, encouraging, pleading, frustrated and fatigued. I am hardly alone. There are legions of Canadians like me: It is not just the patient who gets worn down by our fragmented mental-health system, but also the family members and friends who are on call 24/7. Sometimes, it feels like a full-time job.

Lean flow, the state when a chain of valuable activities — a process — flows without interruption and delay from the beginning to the end of a customer, client or patient’s journey is not just a technical issue of “efficiency,” but is a fundamental difference between a good and poor quality of life, between effective action and frustrating, and in some cases deadly, delay.

Carol Cowan-Levine’s article is in Walrus magazine: “Death by a Thousand Cuts: How an army of mental health professionals let my daughter down.”