May 30-8:12pm: 27 yo teacher, Pam S., is out for her evening run. The delicious evening air fills her nose and lungs. She feels strong, healthy, and alive.
May 30-8:13pm: Pam pushes up a gentle hill. She feels sudden and severe pain, as if stabbed deep by a flaming splinter. Pam stops, almost falling. She struggles the mile home. The searing throb begins to fade. A long hot shower gives some relief.
June 3-5:45am: The torment progressed through the weekend and curled around pillows, drenched in sweat, she has not slept all night. As traces of sunrise light frame her bedroom window, she decides to get medical care.
June 3-9:22am: Pam tells her story to her Primary Medical Doctor (PMD) and is examined. Her pain is intense with any movement and he is worried. He orders blood work, pain medication and calls an orthopedic surgeon. The PMD completes his history and physical report, as well as his differential, in his Electronic Medical Record (EMR). The note is transmitted instantly to the surgeon.
June 3-9:59am: STAT blood work is drawn at a lab down the street.
June 3-10:37am: Pam picks up the pain medication.
June 3-11:25am: The orthopedic surgeon reads the PMD’s note, listens to Pam’s story and examines her. He orders an emergency MRI.
I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy. Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out. Day-by-day he lay in bed, as he grew weaker and multiple systems failed. No one contacted me. Finally, he sent an email to a doctor 3000 miles away, in California. That doc forwarded the email to me. I sent the patient to the hospital.
Did we rush to the emergency room, to salvage his life? Of course. Were there innumerable tests, complex treatments, multiple consults and an ICU admission? You bet. Did I patiently explain to him what was happening? Yes. Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor? Did I remind him what I expect from him and what he can expect from me? You better believe it, I was really pissed!
The practice of medicine for most doctors is fueled by a passion to help our fellowman. This is not a vague, misty, group hug sort of passion. This is a tear-down-the-walls and go-to-war passion. We do not do this for money, fame, power or babes; we do this because we care. Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning. Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.
We need heroes. Heroes show us light in the darkness, the way to the miraculous and ignite a fire in our soul to survive. They prove what is truly possible, through the fog of the impossible. We mourn the disgrace of Lance Armstrong because he seems to have achieved Pyrrhic victory. Let us not doubt; whatever his frailty as a man, Armstrong vanquished a terrible foe; moreover the path blazed is not bare, for everywhere are cancer heroes.
– The 45 year old RN raising her children while she works full time in a pediatric intensive care unit, celebrates her eighth year in remission from pancreatic cancer, treated with surgery, chemotherapy and radiation.
– The grandmother who ignored a breast mass for two years so she could care for four disabled grandchildren, and when the tumor grew to be massive, continues to take care of the children while receiving chemotherapy.
– The hospital chaplain who has suffered from cancer, sits at the bedside holding a hand, sharing a smile, saying a prayer that is heard deep in the heart and to the heavens above.
– The 71 year old with four different cancers, treated with a bewildering mix of surgery, radiation and chemotherapy, whose primary worry is the cardiac care of her husband.
– The 64 year old rescue squad volunteer while receiving chemotherapy and radiation for extensive lung cancer, assists 150 people to flee from their homes and escape the wrath of Sandy.
– The national lymphoma expert, who could be wealthy in his own clinic, instead devotes his life to teaching and research, believing he can save more lives by consulting and advising oncologists in communities around the country.
The 30,000 member American Society of Clinical Oncology is the world’s leading group of cancer physicians. ASCO is dedicated to curing cancer, supporting research, quality care, reducing treatment disparities and a heightened national focus on value. This month they released their annual Report on Progress Against Cancer, which highlights research, drug development and cancer care innovations. This hundred-page document is important reading for anyone who wants to be up-to-date regarding cancer care.
Cancer related deaths in the United States are dropping, but still totaled 577,000 in 2012. While world cancer research funding is rising, in the USA it continues to decrease, with the purchasing power of the largest funding source, the National Cancer Institute, having fallen 20% in the last decade, and a further 8% cut slated for January 1, 2013. Development is dependent on government and private funding, as well as the willingness of more than 25,000 patients a year who volunteer to be involved in cancer trials. All these critical supports are threatened. The Federal Clinical Trials Cooperative of the National Cancer Institute (FCLC, NCI) supports research at 3100 institutions in the USA.
The report discusses the many types of cancer which continue to be naturally resistant to cancer treatment, particularly chemotherapy. In some cases, drugs do not penetrate a part of the body, such as the brain, in other cases even when they reach the tumor, they are not effective. In such cancers the genetic code of the cancer cells has mutated (changed) such that the particular drug does not kill the cancer. In 2012, there was increased interest in attacking each cancer cell at multiple targets either by using a single drug, which attacks in several different ways, or multiple drugs at the same time. This concept improved cancer killing in GIST, colon cancer, certain lymphomas (ALCL) and medullary thyroid cancer. In addition, unique targeted compounds, such as “tyrosine kinase inhibitors,” show increasing benefit in leukemia, sarcoma and breast cancer.
My father, Foster Hill, has stage III prostate cancer.
At 69 years old, he is a quiet man who was often told in his younger days that he resembled Muhammad Ali. He immigrated in his twenties to Canada from the small Caribbean nation of Antigua to look for opportunities beyond sugar cane and the tourism trade.
My father became a chemical technician for well-known oil refineries, while staying true to his real passion in life – playing organ music. Every Sunday, as he has since I can first remember, he plays the largest church organ in Sarnia, near Lake Huron, where he lives with my mother.
Like many men of his generation, he has always been wary for the medical system. For decades he avoided the test, known as PSA, that screens for prostate cancer. In September of this year, driven by pain he could no longer ignore, he went to his doctor who discovered a rock-hard prostate gland. The diagnosis, stage III prostate cancer, means that the cancer has already begun to spread, but is still potentially treatable.
Now retired, his long hours practicing the organ are punctuated with doctor visits to receive Lupron hormone therapy. The good news? The therapy is working. For now.
We don’t know what lies ahead. The first round of Lupron therapy is often effective, but a significant number of patients later develop a resistance to the drug.
The battle against my father’s cancer has only just begun.
This is where Big Data in healthcare can become a true lifesaver. Typically, in medicine, we know only what works for the majority of patients, not what will work for an individual. However, with enough data from enough people – we are talking hundreds of thousands, and sometimes, even millions of patients – we can apply analytics to build predictive models to discover which interventions will work. For the last twelve years, it has been my job to make that happen.
As CEO and founder of GNS Healthcare, I oversee a team of mathematicians, biologists, and data scientists as they crunch and decode healthcare data to unlock the mysteries of what treatment will work for specific patients.
My father’s cancer has given these efforts a new urgency and has raised a new question: Can I use Big Data to save my father’s life?
Here is a little appreciated fact: Patients cannot order medical care; they can only accept or refuse it.
Only a doctor can order medical treatment. In an extreme medical situation, the doctor can offer CPR, but it is the patient’s job to accept or reject.
Any patient can refuse CPR. This refusal is known as Do Not Resuscitate or DNR, and for obvious reasons needs to be made ahead of time. The question is, when is making the decision to be DNR appropriate?
A further definition is needed. DNR (and its colleague, Do Not Intubate, DNI) is not the same as DNT, or Do Not Treat. A patient, at their discretion, may receive maximal medical care, including drugs, dialysis and surgery, and still be DNR. The DNR order in that situation is simply a line that the patient will not allow the doctors to cross. “Do everything you can to help me, but if it fails I do not want to end my life on a machine or with some gorilla pounding on my chest.”
On the other hand, a DNR can be a part of a hospice or palliative care program, so that all care is focused on comfort and not treatment. It is even possible, in very unusual circumstances, to receive hospice care without being DNR. A DNR order is like any medical decision, it can be changed if appropriate. DNR is not the same as “pulling the plug.”
How aggressive to be in receiving medical care is a personal decision. In order to make certain that our individual desires are followed it is critical that, as much as possible, these decisions be made ahead of time. This avoids panic, confusion, and guilt. In that spirit, let us review a few cases.
Ben is a 54-year-old gentleman with lung cancer, which has spread to bones and liver and is growing despite the third chemotherapy. His doctors inform him that a fourth chemotherapy has a 5% chance of helping him and a 20% chance of killing him. He wants to try the chemo. His physician says, “OK Ben, we will order the chemo but if things fall apart and your body starts to fail and we cannot fix it, do you want to be put on a machine?” Do you think Ben should make himself DNR?
Ben made himself DNR. He survived the chemo, but the cancer progressed and he died one month later.
I have a close friend who is looking for treatment for a “bleomycin lung injury” to a close family member. Bleomycin is one of the chemicals included in chemotherapy treatment for Hodgkins Lymphoma. The patient had 9 of 12 chemotherapy treatments for Hodgkins Lymphoma and the cancer was responding very well. It became evident about two months ago that the patient was suffering from lung damage, so his oncologist took him off the bleomycin component of his chemotherapy regimen in September.
Then a couple of weeks ago his lungs suddenly gave out and he was gasping for breath and had to be rushed to the hospital. He was placed on supplemental oxygen and has been taking steroids to counteract the effects of the bleomycin. His lungs seemed initially to be improving, but his body was under such extreme strain that they chose to intubate and put him on a ventilator to avoid a collapse of the heart or lungs from the sheer exhaustion of breathing. He’s been on the ventilator since then, but improvement of the lungs appears to have plateaued. There have been various other complications but they appear surmountable if the lungs improve. The core problem is bleomycin injury or bleomycin toxicity.
The patient is receiving care south of Boston. The primary MD on the case is a critical care doctor and pulmonary specialist. Moving to another facility is not an option (he’s too fragile) but current doctor is open to input from other providers.
Regina Holliday is a Washington, D.C., art teacher, artist, muralist, patient rights arts advocate, founder of the Walking Gallery and the Medical Advocacy Mural Project. She is a blogger at her Medical Advocacy Blog.
Diagnosed with metastatic esophageal cancer on June 8, 2011 Christopher Hitchens found that he had been transported to a foreign place. Until his death 18 months later the award winning author picked up pen and wrote about his travels in a “new land” where everyone “smiles encouragingly,” “where the cuisine is the worst of any destination” and where a language is spoken that “manages to be both dull and difficult.” The recently published book “Mortality” is his voyage into “sick country,” a place we will call CancerLand.
The idea of moving far away is also described in Chet Skibinski’s 2012 diary-like book, “Cancer Country. “ “On May 15, 2008, I stepped into a foreign country” with freakish rules and disturbing customs. Skibinski takes the reader along on his journey though several years of complex care and metamorphosis, not only medical, but also social, spiritual and personal.
CancerLand is a place not only of a body which visits hospitals, clinics, subjected to knives, drugs, x-rays and deconstruction by machine, but it is a destination of mind, where confusion, isolation, and fear transform knowing, growing and comfort in a bizarre, painful, spinning world which tries to break down the soul to yield suffering. As both patient authors note, it is a transit from which it is difficult to return.
Cancer patients are cast out from safety, stability and control to a state of danger, chaos and subjugation. Understanding the disease process as a distinct place, with strange language, customs and goals provides clues to the survival of body and mind. Seeing CancerLand as an unwelcome Kafkaesque journey may help us fight the disease and adjust to the changes that occur.
Facing advanced cancer, who among us wouldn’t look to our oncologist for expert advice on whether another round of chemotherapy makes sense? But do you know what your oncologist cares about, and can you be sure her recommendations map onto your own treatment preferences?
A recent study lead by Michael Kozminski (I was senior author) shows that American oncologists downplay the value of treatments that improve quality of life, compared to the value they place on life prolonging treatments.
In our study, we surveyed oncologists across the United States and presented them with hypothetical treatment scenarios, to see what value they placed on potential treatments for patients with advanced cancer.
In one scenario, we estimated how cost-effective a new life prolonging chemotherapy would need to be before oncologists prescribed it. We described the chemotherapy as prolonging patients’ lives, but also explained that we had no other data on how it impacted quality of life. On average, we found that oncologists would be willing to spend as much as $200,000 for every year of life gained by this new treatment.
There was a night when I was in training that all the decisions, disasters and chaos, which are the practice of medicine, caught up to me. In those dark hours, I felt practically despondent. What I had seen left me in tears and overwhelmed by the tasks in front of me.
At that moment a wise attending physician took a moment to sit with me. Rather than tell me how wonderful a doctor I might someday become or brush away my errors, he validated my feelings. He said the best doctors cared, worked hard and sacrificed. However, that the basic driving force is fear and guilt. Fear for the mistakes you might make. Guilt for the mistakes you already had. How I handled those feelings would determine how good a doctor I became.
I have reflected on those words over the years and tried to use that sage advice to learn and grow. Focused properly, guilt gives one the incentive to re-evaluate patient care that has not been ideal. It drives the study and the dissection of past decisions. Nonetheless, excessive guilt can cause a doctor to avoid completely certain types of cases and refuse even the discussion of those medical issues.
Fear of error drives compulsive and exact care. It helps doctors study and constantly improve. Taken too far it can result in over testing, avoidance and over treatment. The art of medicine requires the practitioner to open his heart to criticism and be strong enough to build from failure.
Some years ago, I saw a patient who had leukemia. I concluded that the patient’s low blood count was because of this blood cancer. This was correct. I missed that in addition to the leukemia she was bleeding from a stomach ulcer. By the time another doctor spotted the ulcer, the patient was sicker than she might have been, had I made that diagnosis earlier.