by Dr. Iris Kulbaski
Part 1 of a series.
JANUARY 2, 2019
I walk into my parents’ home to pick my mom up for a family gathering. And like most days over the past few weeks, palpable sorrow greets me at the door. Our old dog lies sleeping on the couch, heavy with years, she’s difficult to rouse. She finally welcomes me with a geriatric tail wag and labored breathing. I glance at the pile of mail on the table, eager to catch a glimpse of a new card or letter of condolence, which have been trickling in at a steady pace. A thick envelope addressed to my father lies at the top of the pile, from the network of hospitals that were home to him during his final months, and where I spent years training and working as a researcher. My eyes scan the front of the envelope: “Courage Lives Here.” My face contorts reflexively as I ask my mom what they want. “It’s a survey,” she tells me. “They want to know how they did.” I shake my head in disbelief — I guess they didn’t get the memo. Dad’s gone. Courage died there.
But before he died, Courage burned fiercely. He braced himself in opposition of doubt and defeat, he forgave numerous medical oversights and missed treatment opportunities, he did laps around the nurse’s station, greeting the nurses at each turn. He underwent an endless slew of diagnostic tests- colonoscopy, gastroscopy, CT and MRI scans, liver biopsy, and innumerable X-rays and ultrasounds. He endured weeping leg edema, sleepless night after sleepless night, shortness of breath, dizziness, liters of fluid around his lungs and in his abdomen and repeated needle punctures to drain the fluid. Courage lost his appetite for food but ate anyway, lost his tolerance for liquids, but drank nonetheless. Courage fortified his neighbors, asking about their progress, wishing them good luck and good health. He endured a central intravenous catheter, nasogastric feeding tubes, stomach ulcers, relentless nausea and hiccups, constipation and diarrhea. When he developed urinary blockages, Courage tolerated the surgical insertion of kidney drainage tubes and the multiple tube replacements that followed. When he was denied prophylactic antibiotics at the first tube change, only to develop Staphylococcus aureus kidney and blood infections, Courage persevered. Courage waited patiently, then impatiently, for his doctors to round, accepting feelings of uncertainty and neglect when no doctor visited for a week. He suffered through mixed messages, a racing heart, low blood pressure, a blood clot in his leg, pressure ulcers, a single harrowing round of chemotherapy, agonizing mucositis and mouth sores, debilitating weakness and weight loss, and when things were at their bleakest, another walk to the nurse’s station.
Courage accepted the pain of surrendering his role as nurturer and caregiver, of giving up control over his body and life, of watching his family suffer with him and tend to his every waking need. He navigated the landmines of frustration and disappointment in a medical system that had carefully tracked his progress since removing his diseased prostate seven years earlier, only to miss the elephant in the room because of an over-reliance on inadequate protocol. Courage battled demons of despondency, mood disturbances and hot flashes at the hands of hormonal treatment, clinging to optimism and faith despite ongoing setbacks. When his appetite for food failed him, he sustained himself on an appetite for life, his guiding motivation a hunger for more time with family. He managed the household expenses, wrote birthday greetings to his granddaughter, visited with friends young and old, listened to his favorite music, donated to charity, voiced his fear and anger, dreamed about vacations at the beach, kissed my sister’s very pregnant belly as he felt his unborn grandson move, sat quietly holding hands with his devoted wife of 52 years, and kept up-to-date on family life in general, all from his hospital bed.
Courage stared down a death sentence of weeks, saying, “I cannot accept this.” Courage fought for hours to swallow medications that would no longer go down because of an untreated mouth and throat virus and an overall weakened swallowing reflex. Courage fought to swallow the bitter reality of the final option for treatment — large, uncrushable pills. A new type of hormone therapy that held the promise of shrinking the innumerable tumors that riddled his body, covering at least 30 percent of his liver, and infiltrating his lymph nodes, which were pressing on his various organ systems. Eight pills lost the battle and were swallowed before all food and water were restricted completely. Courage listened as doctors scavenged his last shreds of hope. “There’s nothing more we can offer you. The treatments have done nothing for your cancer.” As an advocate for my father’s health care, I demanded evidence of treatment failure. How much of my father’s deconditioned state was due to cancer progression and how much of it was a result of the panacea of medical oversights and mismanaged complications, including recurrent infection and long-term poor nutritional status? Courage listened in disbelief when the CT results came back showing significant disease regression, particularly in the liver.
To everyone’s surprise, a single hormone-blocking injection from two months ago had finally kicked in and was doing its job. But by then, another systemic infection had taken hold along with the insidious psychological toll of a medical team that had given up, all too eager to point a finger at the ever-looming specter of metastatic prostate cancer that had taken on an identity of its own.
This is the story of a family traumatized twice. Once by witnessing a loved one suffer at the hands of a ruthless, ravaging disease. And a second time by witnessing the medical and psychological mismanagement of a patient whose disease did not fit the typical progression and therefore fell between the cracks of an overburdened medical system designed to treat the statistical norm. As a bystander to my father’s painful journey, I can only approximate the degree to which he suffered. I can only tell the story from my own perspective — that of a daughter who committed herself to running the race alongside her father and to making sure that he crossed the finish line to receive his most revered prize: more time with family. Sadly, we lost this race, the finish line assuming a tragically literal meaning.
Ultimately, my father passed from septic shock. His cancer was responding to therapy, but his body was too weak and decompensated from malnutrition, immune system compromise, delayed treatment of infections and overall disease burden to cope. Unlike many other patients, he was blessed to have his entire family advocating on his behalf, with someone by his side 24/7 to supervise his medical care, including diagnostic and medical procedures, meetings with doctors, review of test results and treatment plans and administration of medications. My father welcomed our support, particularly when he became too ill to remain vigilant, and even for daily routines such as medication administration.
As a result of drug dosage and dispensing errors, he insisted that one of us be present when he took his medications to review the list and doses of drugs with the nurse before administration. Being so intimately involved in my father’s care, we bore witness to an onslaught of preventable errors, a perfect storm of mistaken assumptions, missed opportunities, shortsightedness and overreliance on limited protocol. We were successful at preventing some errors by interceding and advocating in advance. Others we discovered in retrospect after the damage had already been done. Over the course of several months, we encountered mistakes by attending physicians, oncologists, nurses, administrators, and radiologists. In an environment where the cost of errors is so high, does the medical system really understand the agonizing toll that preventable errors have on a single life and family?
Admittedly, we came across countless angels within the health care system, who displayed uncompromising compassion, responsibility, and good judgment during my father’s most difficult moments.
However, their empathy and dedication could not compensate for the lack of adequate protocols for outliers such as my father. Nor could they compensate for overworked physicians who treat symptoms rather than patients and who are spread so thin that they do not have the time to review the files of patients with complicated cases — let alone the scientific literature. Therefore, they miss opportunities for better, timelier care. In an era of patient-centered care, our experience is a sad reminder that the system falls painfully short in addressing the complex needs of patients with multiple comorbidities and complications — precisely those patients who are at greater risk for preventable harm and who require more careful assessment. A 2016 report released by the Canadian Institute for Health Information (CIHI) and the Canadian Patient Safety Institute found that 138,000 Canadian patients admitted to hospital during 2014-2015 experienced a harmful event, ranging from hospital-acquired infection to medication errors. Of these patients, 17,300 died during their hospital stay. Vice-president of research and analysis at CIHI, Kathleen Morris, told The Star in 2016 that “Those most at risk for hospital-related harms are patients with multiple medical conditions, such as cancer and diabetes, who have several specialists involved in their care. The more complex a patient’s health status, the higher the rate of harmful incidents.”
Despite ongoing public campaigns to raise awareness of preventable medical harm, the story from the inside remains very different, at least in our experience. My family’s attentive involvement in my father’s care serves as an important example of how self-advocacy can expose the culture of silence surrounding preventable diagnostic and treatment errors. The conditioning of patients to accept what doctors say as gospel perpetuates an environment in which physicians can easily avoid taking responsibility for oversights. Regardless of their level of expertise or rank within the hospital system, physicians are not infallible. If something doesn’t seem right, there’s a good chance that it isn’t. Asking informed and relevant questions and engaging in ongoing and productive communication with the health care team provides opportunities for ourselves and our loved ones to receive better care and holds health care professionals accountable.
For the majority of men diagnosed with prostate cancer or managed for recurrence, the standard of care and treatment options are good, provided that diagnoses are made early.
For prostate cancer patients with aggressive, atypical forms of the disease, the reality is quite different. In my father’s case, his medical team failed to diagnose recurrence in a timely manner, due to the unusual presentation of his disease, an overreliance on inadequate tests and diagnostic imaging oversights. Cancer patients who fall outside the statistical norm because of uncommon manifestations of the disease are often stigmatized as ill-fated as if somehow their unfortunate biology is responsible for their demise. Assigning a human identity to the outliers who, despite medical intervention do not survive, serves as a reminder of the shortcomings of current standards of care for such patients.
My hope is that my family’s experience raises awareness of preventable errors in the management of prostate cancer and its recurrence, and encourages patients and their families to self-advocate.
My appeal to physicians and other health care professionals is to reexamine practices for patients who require closer follow-up, to identify opportunities for improved, timelier care in patients with complex medical histories, and to honor the concerns of patients and their families. Until we reach a point where no man is left behind, the medical community will not have fulfilled its commitment to do no harm.
A story of missed opportunities and medical missteps
JANUARY 9, 2019
Part 2 of a series.
My own self-appointed role as my father’s health care advocate during his prostate cancer battle was a natural consequence of my training as a medical researcher.
After earning a PhD in medical science, I became the elected family health and wellness guru, offering insight into everything from hangnails to stem cells, with the ongoing disclaimer that “I’m not a doctor, I just play one on TV.” Though not versed in clinical care, my theoretical knowledge of the scientific literature, as well as years of training in critical assessment, evidence-based investigation, and emerging standards of care put me in a position to help my father and family navigate the disorienting and overwhelming experience of being a cancer patient. I had the emotional motivation and the time to meticulously pore over my father’s test results, comb through the medical literature and extend an ever-watchful eye over my father, noticing patterns of symptoms and potential gateways for intervention. After the devastating missed diagnosis of metastatic recurrence and the resulting small window of opportunity for treatment, I made it my mission to be a perpetual thorn in the side of my father’s medical team- an additional line of defense against mistakes. I can only imagine the rolling eyes and sighs that the repeated pleas of the interfering daughter provoked when they were mentioned at Grand Rounds. Despite my attempts to stay one step ahead in the game of chess that was my father’s deteriorating health, the missed opportunities for timely and adequate care accumulated.
Active surveillance: What is being monitored and how closely?
Active surveillance is a term used to describe the regular monitoring of a prostate cancer patient’s disease status in order to delay invasive interventions and their related risks and side effects, thereby maximizing the quality of life. Active surveillance typically involves twice yearly prostate-specific antigen (PSA) bloodwork, a digital rectal exam (DRE) and assessment of new symptoms, as well as regular prostate biopsies and diagnostic imaging as required. In men who have previously had their diseased prostate surgically removed, active surveillance excludes DREs and biopsies, emphasizing PSA blood work as a gauge of cancer recurrence. Since PSA is produced by prostate cells, a man without a prostate is expected to have a PSA blood level close to zero. A PSA rise in such men is presumed to be the result of cancer relapse.
Active surveillance is often recommended in older men who face additional health challenges, whose cancer is expected to grow slowly, based on a low Gleason Score (a clinical measure of aggressiveness), and whose cancer is small and confined to the prostate. At the time of diagnosis in 2011, my father’s PSA level was elevated, though not as high as typically seen in cases of aggressive, non-metastatic prostate cancer. Due to the aggressiveness of the cancer, he was not considered a candidate for active surveillance and was advised that if he “would like to see the sunrise” surgical removal of his prostate was his best chance for survival.
The operation was deemed successful, and although pathology samples of the prostate confirmed the initial biopsy results of aggressive cancer, further treatment with radiation or chemotherapy was not considered necessary. Instead, my father became a candidate for post-operative active surveillance. Between 2011-2017, he attended his doctor’s appointments every six months without fail, each time receiving a clean bill of health after PSA blood work showed unchanged (near zero) levels of PSA. During this time, his urological oncologist did not order any diagnostic imaging, relying on PSA as the primary measure of disease-free status.
In 2016, my father’s medical history was complicated by a diagnosis of indolent lymphoma, a slow-growing cancer of the blood that often remains stable for years, even regressing spontaneously in some cases.
At the time of diagnosis, my father’s hematologist ordered a routine full-body CT scan, the results of which did not show evidence of lymph node enlargement, either from the lymphoma or prostate cancer. His hematologist was confident that as long as my father was not exhibiting symptoms, he did not require treatment. He was now under active surveillance for two types of cancer.
In April 2017, my father received his first worrisome PSA results — the numbers were slightly elevated. Additional blood tests over the next year confirmed the trend, and he was told that his PSA had reached a high enough level that it indicated cancer relapse.
During the multiple visits with his urological oncologist over the course of that year, we discussed additional tests and treatment options. Despite repeated requests for a CT scan or alternative diagnostic imaging to assess the extent of disease recurrence, we were told that there was no imaging available that would pick up the “pinhead cluster” of microscopic cells representative of such a low rise in PSA. We were advised that although my father’s PSA was elevated, it was still so low that there was minimal concern for metastatic spread. Given this, my father was counseled to consider localized pelvic radiation therapy, based on the assumption that the relapse was confined to the area where his prostate once was.
Meanwhile, the new and unexplained constipation, loss of appetite and weight loss that my father was experiencing caught the attention of his family physician, who sent him for an abdominal ultrasound in May 2018. This test showed numerous spots on his liver, suspicious for metastatic disease. My father presented these results to his urological oncologist, and our year-long plea for a CT scan was finally honored. The CT results showed extensive full-body lymph node enlargement in the pelvis, abdomen, chest and neck regions, in addition to innumerable tumors in the liver. A liver biopsy definitively ruled out lymphoma, demonstrating that the liver tumors were most likely prostate cancer. A week after the 2018 CT was taken, an addendum was surreptitiously added to the 2016 CT scan report, stating that upon further review, enlarged lymph nodes were, in fact, present in the abdomen and pelvis. The radiologist reading the CT scan in 2016 neglected to accurately interpret and report the findings. By the time he added this information to the report in 2018, it was too late — the prostate cancer had infiltrated my father’s liver and the lymph nodes throughout his body. Nobody from my father’s medical team informed us of — let alone took responsibility for, this appalling mistake. I discovered it while reviewing my father’s reports during the writing of this article, shocked to discover that he had at least a two-year window during which to receive timely and effective treatment.
Based on my father’s liver biopsy results, the malignant cells did not express much PSA receptor, which in retrospect was not surprising given that his cancer was a low PSA secretor, as some aggressive types of prostate cancer are.
My father’s PSA levels were relatively low at the time of initial diagnosis and at the time of cancer recurrence, never accurately reflecting the extent of disease burden.
The assumption that his rising (yet low) PSA during 2017-2018 represented a highly treatable, localized relapse was yet another tragic mistake. As my father’s case demonstrates, tracking PSA is not a reliable diagnostic tool on its own, particularly in patients who are being monitored for relapse following treatment of aggressive disease. For those rare patients who present outside of the statistical norm, the current protocols for active surveillance are insufficient. The limitations of the PSA test should be acknowledged and alternative practices for adequate and close monitoring, such as early and routine scans, should be implemented, particularly if there are signs of recurrence and regardless of the extent to which PSA values rise.
Had my father undergone routine diagnostic imaging during the years following his surgery, his urological oncologist may have discovered much earlier that the cancer had spread to the lymph nodes and that there was a conspicuous mass adjacent to the surgical clips in the area where surgeons had removed his prostate, which in retrospect was presumed to be the likely source of metastatic spread. Had my father’s repeated requests for diagnostic imaging been honored when his PSA first began to rise in April 2017, his urological oncologist would have discovered that his PSA level did not represent localized recurrence, but rather extensive metastatic spread.
Had hormonal therapy been initiated at this point, before my father developed symptoms and his functional status began to decline, it may have made a significant difference to his short- and long-term prognosis, particularly since the final CT scan before he passed showed that the hormonal therapy he received two months earlier was working.
Instead, my father’s family physician discovered metastatic disease on a simple abdominal ultrasound, while his urological oncologist, who was responsible for his ongoing care, glibly conceded “I guess I’m going to have to eat my hat.” Three months elapsed from the time we heard those words to the time my father passed.
The small window of opportunity for treatment narrowed with each additional oversight during the multiple outpatient procedures and hospital admissions that followed.
Why did it take over a week for doctors to initiate treatment?
JANUARY 22, 2019
Part 3 of a series.
Patients with advanced cancer are particularly vulnerable to infection due to a compromised immune system. Moreover, the typical symptoms of serious infection, such as fever and chills, may be absent in cancer patients. If not identified and treated early, infection can lead to sepsis, a life-threatening reaction of the immune system that causes organ failure, shock, and death, as was the case with my father. It is common practice for cancer patients, particularly those with advanced disease, to receive prophylactic antibiotics before undergoing an invasive procedure, to mitigate the risk of serious infection. Prostate cancer patients with metastatic disease often require an invasive procedure to alleviate the blockage of urine flow into the bladder caused by enlarged lymph nodes pressing on the ureters, the tubes that normally carry urine from the kidneys to the bladder.
In such cases, the blockages are bypassed by surgically inserting thin, flexible plastic tubes (nephrostomy tubes) into the kidneys.
The tubes are either connected to external urine collection bags or can act as stents within the ureters, re-establishing the flow of urine into the bladder and enabling normal drainage. Although nephrostomy tubes are a valuable solution in such cases, they are considered a common source of infection.
When my father first required nephrostomy tubes during one of his initial hospital admissions, he was given broad-spectrum prophylactic antibiotics by the ward physician in charge of his case. He tolerated the procedure very well and was discharged shortly thereafter. In the weeks that followed, he developed issues with the tubes and his urological oncologist recommended that they are replaced, as they were likely blocked. He was scheduled for an outpatient tube replacement procedure. When I realized that my father had not been prescribed prophylactic antibiotics before the procedure, I requested a prescription from his urological oncologist’s team.
Despite the fact that he had a weakened immune system, I was told that antibiotics were not part of the protocol for a nephrostomy tube change and were unnecessary. Less than a week later, my father was admitted to the emergency department with a Staphylococcus aureus infection that had spread to his blood. He had been feeling unwell for several days, complaining of malaise, drowsiness, and nausea. His family doctor ordered urinalysis and bloodwork, which showed evidence of infection. We rushed him to the ER, where he was admitted and began an intensive six-week course of intravenous antibiotics, the first two weeks during his hospital admission and the rest to be completed as an outpatient.
During these two weeks, the nephrostomy tubes were replaced twice — once to remove any potential source of infection, and a second time before his release, after one of the tubes was accidentally dislodged. We were told that he did not require broad-spectrum prophylactic antibiotics for these tube changes because he was already on a course of antibiotics for the Staph aureus infection, albeit a narrow spectrum one.
The infectious disease specialist did, however, advise that leaving the tubes attached to external drainage bags was safer than capping the tubes and using them as stents, given my father’s history of infection and tube blockages. Before the procedure, I consulted with the interventional radiologists who would be replacing the tubes and relayed this information.
I was told that as long as there was no identifiable blockage in the new tubes, they would follow their protocol to cap the tubes and leave them unattached to external drainage bags. I insisted, they resisted, and my father was discharged following the procedure.
Less than a week later, we brought him back to the ER, after recognizing his usual symptoms of infection: malaise, drowsiness, and nausea. The new team assigned to his case paid little attention to these symptoms, accepting fatigue and nausea as normal in a patient with metastatic cancer. We knew better. My father’s symptoms were extreme for him, and we recognized the pattern. Diagnostic imaging finally confirmed an infection in his left kidney. It took over a week for doctors to diagnose him and replace his antibiotic with a broad spectrum one. During this painful, frustrating time, I pleaded with his health care team for appropriate antibiotic treatment and infection management. My father was suffering from ongoing, inadequately treated infection, which began the first time his nephrostomy tubes were replaced without prophylactic antibiotics and continued with the subsequent mismanagement of additional tube changes and kidney infection.
Within 48 hours of starting the broad spectrum antibiotic, my father’s overall condition improved significantly and his previously elevated white blood cell count decreased, as it did each time antibiotic therapy was initiated over the past month.
Why did it take over a week for doctors to initiate treatment? Occult (hidden) infections are difficult to identify in immunocompromised patients who do not display the classic signs of infection, such as fever or chills. According to his attending physician, they could not identify the source of infection — urine and blood cultures were coming back negative — and my father’s symptoms were vague. Moreover, they argued that his high white blood cell count was due to the cancer itself, not the infection. I insisted that cultures, particularly those from a patient on long-term antibiotics, may not be positive even with an active infection and that regardless of the negative cultures he had a compromised immune system and was exhibiting symptoms that for him were indicative of infection. While it’s true that advanced cancer can cause an elevation in white blood cells, there was a distinct trend in the rise and fall of my father’s white blood cell counts over that month, each fall corresponding to initiation of antibiotic therapy. Yes, he had metastatic cancer, but his blood work, the pattern of his symptoms and his response to antibiotic therapy suggested that the burden of infection, rather than rapidly progressing metastatic disease was the primary cause of his multiple hospital admissions since his first nephrostomy tube change. The late recognition and treatment of serious infection caused a significant decline in his functional status, weakening his already immunocompromised body as the weeks went by.
A story of treatment failure and end-of-life decisions
JANUARY 30, 2019
Part 4 of a series.
By the time my father’s metastatic prostate cancer was diagnosed, he was already experiencing symptoms of poor appetite and weight loss, which grew progressively worse following his first hospital admission. As his nutritional status continued to decline, the protein level in his blood decreased, causing significant fluid buildup in his legs and abdomen.
During his hospital stays, we consulted with dietitians who created individualized meal plans of nutrient dense foods to help my father maximize the nutritional value of every bite. However, this did little to help the months of cumulative malnutrition, because he was barely able to eat, the enlarged lymph nodes and worsening fluid buildup in his belly were putting pressure on his digestive organs, causing nausea and early satiety. Eventually, doctors recommended a temporary nasogastric feeding tube to deliver a nutritional formula directly into his stomach. Unfortunately, the feeding tube caused ulcers in his stomach and esophagus. It was removed, but an alternative solution was not provided.
Weeks passed, and my father ate progressively less. He grew weaker, and his edema became increasingly debilitating. Our requests for alternative nutritional support, such as intravenous nutrient delivery, were denied on the basis that the risks were too high. In cancer patients with uncontrolled disease, intravenous nutrient delivery is thought to “feed the cancer” and hasten death. Doctors who were advising us against such intervention were basing their opinion on my father’s apparent uncontrolled disease status. They saw his rapid deterioration and concluded that there were no treatment options left and that, ironically, nutritional support would shorten whatever little time he had left.
It was only after I demanded proof of treatment failure that a new CT scan showed, to everyone’s surprise, that his cancer had begun to regress — his lymph nodes were stable, and there was significant tumor shrinkage in his liver, in response to an earlier injection of a hormone-blocking drug.
His medical team had underestimated the effect of ongoing malnutrition and mismanaged infection on my father’s physical deterioration and overestimated, without proof, the degree to which my father’s cancer was progressing. Because they had already classified him as palliative, their philosophy was that there was little hope of treating him and that all they could provide at this stage was end-of-life care. They were no longer providing the same type of active care that was afforded to patients who they considered treatable and the decisions they made from this viewpoint shortened my father’s life.
To make matters worse, he was battling severe inflammation and sores in his mouth and throat, which developed after his first and only round of chemotherapy, making eating and swallowing extremely painful. For over a week, the only treatment he received was mouth rinses and pain relievers, which did little to heal the sores or alleviate his pain. I insisted that his mouth and throat be swabbed for bacterial and viral testing. The results came back positive for herpes (cold sore) virus, which is often reactivated in immunocompromised patients, particularly those undergoing chemotherapy. Doctors prescribed intravenous antiviral medication, which at that point held little hope for clearing the infection because of the delay in starting treatment: Another missed opportunity. Shortly afterward, doctors restricted all food and water intake because my father’s swallowing reflex had become so weak from underused throat muscles and generalized weakness that he was choking on whatever little he tried to get down. Doctors gave my father several weeks to live. He continued to fight for a brief time after the prognosis, before accepting that he had lost the battle. “They brought me to my knees,” he told me.
Ten days after my father’s passing his new grandson, his namesake, arrived. Broken and bittersweet, we gathered as a family to celebrate Life, our shattered pieces coming together like a kaleidoscope — never again in the same way but beautiful nonetheless. Between the mirrors of our grief, we each reflected pieces of one another’s suffering, pieces of our own personal suffering, pieces of my father’s suffering, and pieces of the resolve to move on with the earth-shattering strength that he inspired in each of us. As we raise a toast to my father, I look around, breathe in the moment and think: Courage. Lives. Here.
This article 1st appeared in: https://www.kevinmd.com/blog