I recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”
She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.
If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.
But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.
First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.
The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.
Continue reading “Whose Cancer Is It, Anyway?”
Filed Under: THCB
Tagged: Cancer, culture of health, doctor/ patient relationship, Oncology, provider bullying, shared decision making, Telling Knots
Apr 16, 2014
What do Louis Pasteur, Jonas Salk, Sigmund Freud and Barack Obama have in common? They all championed controversial medical revolutions and if not for their bravery in the face of conflict, billions would have died.
Sterilize instruments to kill invisible bugs? Inject disease particles to build immunity? Look into our subconscious to explain everyday behavior? Give basic healthcare to everyone? Ludicrous. That is why we named these advances after these men.
As an oncologist who has seen the fatal cost of our patchy, imbalanced and unfair healthcare system, I have to be at very least hopeful about ObamaCare; AKA the Affordable Care Act (ACA). The list of benefits is so vast that whatever glitches happen along the way, I know that cancer patients will be helped:
-No pre-existing condition exclusion: So the 31-year-old programmer with Stage 1 breast cancer can change jobs without losing insurance.
-Healthcare coverage by parents until their child is 26: So families will not lose their homes paying for Hodgkin’ s disease in a 22-year-old.
-Guaranteed payment by insurers for patients entering experimental trials: So patients with any insurance can be involved in research, and everyone benefits from the latest advances.
-Free healthcare screening: So that my 58-year-old neighbor with a family history of colon cancer gets routine exams and life saving colonoscopies.
-Uniform healthcare insurance standards: So that the 45-year-old man with stomach lymphoma I saw last week, does not have to suffer and die because his employer brought a health policy, which excluded chemotherapy.
Continue reading “The Next Great Cure? A Cancer Doctor Explains Why He Supports the Affordable Care Act”
Filed Under: OP-ED, THCB
Tagged: Cancer, James Salwitz, Oncology, Patients, Physicians, The ACA
Oct 4, 2013
The general practice of oncology seems to come in waves of disease. One week every breast cancer patient is in trouble, another sees multiple new cases of lymphoma or leukemia, the next it as if someone is giving away lung cancer (or perhaps cigarettes) and then three patients with pancreatic cancer end up in the ICU. This week a portion of the 240,000 yearly USA cases of prostate cancer walked in our door. The rush of cases served as a reminder that when it comes to this illness, we have a long way to go.
First, Allen. He is 73 years old and has prostate cancer in one out of twelve biopsies. The cancer has a Gleason’s Score of 6 (a measure of aggressiveness of the cancer tissue: more then 7 is particularly bad), which means it is not fast growing. We recommended that given the small amount of slow growing cancer, Allen should be watched without treatment (“Active Surveillance”). What Allen found so difficult about this recommendation is that his son was diagnosed with prostate cancer just one month ago and his son, who is 49, has a Gleason’s 8 Prostate Cancer on both sides of the prostate, and is scheduled for robotic surgery. More than having cancer, Allen is hurt by the feeling it should have been him.
Then there was Robert and Mike. Robert was in the office at 10:00am for evaluation of his newly diagnosed prostate cancer, PSA blood test 32 (high), Gleason’s 7, with evidence of invasion through the capsule of the prostate gland. Fortunately, because prostate cancer likes to spread to bone, his bone scan is normal. Despite Robert’s relatively young age (66), the surgeon recommends external beam radiation therapy (RT) instead of operating. What is bizarre and makes my head spin, was that at1:00pm, in the same exam room, in the same chair, I saw Mike. He has recurrence of prostate cancer, previously treated with surgery. Now Mike needs RT. Although Robert and Mike do not know that the other has cancer, they have worked together in the same small company for 28 years, and consider each other friends.
Continue reading “Prostate Cancer: Not a Good Week”
Filed Under: OP-ED
Tagged: Cancer, Cancer Screening, James Salwitz, Oncology, prevention, Prostate Cancer
Aug 30, 2013
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.
Continue reading “From the Case Files of the Robert Wood Johnson University Hospital, Dec 2015″
Filed Under: Physicians, THCB
Tagged: EHR, James Salwitz, Oncology, Patients
Jun 7, 2013
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.
Continue reading “Why Is the Doctor Angry?”
Filed Under: Physicians, THCB
Tagged: Cancer, doctor/ patient relationship, James Salwitz, noncompliance, Oncology, patient engagement, practice of medicine
Jun 1, 2013
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.
Continue reading “Replacing Lance”
Filed Under: THCB
Tagged: Cancer, Desperately Needed Heros, Lance Armstrong, Livestrong foundation, Oncology
Jan 26, 2013
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.
Continue reading “Advances In Cancer 2012″
Filed Under: Uncategorized
Tagged: ASCO, Cancer, Drug shortages, Oncology, Personalized Medicine
Dec 28, 2012
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?
Continue reading “Can Big Data Save My Dad From Cancer?”
Filed Under: THCB
Tagged: Big Data, Cancer, Colin Hill, Foundation Medicine, GNS Healthcare, Lupron therapy, Oncology, Personalized Medicine, Prostate Cancer
Dec 21, 2012
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.
Continue reading “To DNR or Not to DNR”
Filed Under: Uncategorized
Tagged: Cancer, Chemotherapy, CPR, DNR, End of life decisions, James Salwitz, Oncology
Dec 14, 2012
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.
Filed Under: THCB
Tagged: Bleomycin, Chemotherapy, Oncology, Regina Holliday
Nov 10, 2012