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The Only Way Out of the Health Care Wilderness

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By William Bestermann, MD

The landmark 2001 document from the Institute of Medicine’s (IOM), Crossing the Quality Chasm, should have guided us out of the healthcare cost-quality crisis. It argued that the root cause of our difficulties has been a failure to meet the needs of patients with chronic disease. We have not solved this crisis because we have almost entirely ignored the recommendations for reform found in that document.

The claim that we have the best healthcare in the world is correct only if you have an acute condition. If you are having an event, such as a heart attack, our system can provide an emergency stent — for as much as $50,000 — that will open the blocked artery, immediately relieving the pain and saving your life. We are really good at rescue medicine-crisis medicine.

But acute conditions generate enormous costs only because we have not addressed the chronic condition earlier, interrupting the disease progression that produces the acute events. Since most healthcare cost growth over the past 2 decades has been related to patients with 4 or more chronic conditions, this should be recognized as the foremost issue in healthcare reform.

In fact, the IOM charged that, despite the central role of chronic disease in most pain, disability, death, and cost, care continues to be designed around the needs of providers and institutions, and most patients with chronic conditions do not receive the care they need. A 17-year lag in implementing new scientific findings results in highly variable care.

That cardiologists favor coronary stenting over optimal medical therapy — that is, managing vascular disease using $4 drugs and recommended lifestyle changes — provides a powerful case in point.

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To DNR or Not to DNR

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By James Salwitz, MD

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.

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Cigarettes Should Cost $25 a Pack

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By Vijay Govindarajan and Srikanth Srinivas

Henry David Thoreau said, “There are a thousand hacking at the branches of evil to one who is striking at the root.”

We have hacked at healthcare costs for what seems like thousands of times, with very limited success. It is time to strike at the root. Rather than focus on reducing costs after preventable diseases have taken hold, it is time to focus attention on eliminating the disease.

Let us look at two specific examples.

1. The CDC (Center for Disease Control and Prevention) has estimated that the cost of smoking(estimated cost of smoking-related medical expenses and loss of productivity) exceeds $167 billion annually. The CDC has also estimated that 326 billion cigarettes (combustible tobacco, to be more precise) went up in smoke in 2011. In other words, every cigarette consumed costs the nation about 50 cents; every pack, $10.

Put another way, while the smoker paid approximately $5 a pack up front, there was also an additional $10 secret surcharge — the cost of which is born by all of us (such as taxpayers, anyone who buys health insurance, even private companies who suffer from lower productivity as a result). It is as if we are telling the smoker, “I know you can’t afford to pay $15 for a pack. So we will give you $10 so you can afford to smoke.” We are not this generous even with people who don’t have one square meal a day. We spent $78 billion on food stamps, with constant pressure to bring that down further even if some people will be left without food as a result.

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End of the Line in the ICU

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By Kristen McConnell

Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”

She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”

Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit.

We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband.

You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.

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The Doctor as Patient

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By James Salwitz, MD

Terry is a particularly difficult patient.  She is not hard because of her cancer, which is in remission, nor is there a problem with pain, of which she has little, and Terry is not particularly demanding for the nursing staff.  No the real problem, the challenge, the thing that makes her so difficult is that Terry is married. Terry is married to Dr. P and he is a particularly difficult man.

Terry’s husband loves Terry very much.  He wants her to have the very best care.  Dr. P makes certain that all the doctors know everything that is going on, all the time; he makes sure the nurses are on top of every detail; he demands the best from the all the hospital staff.  In fact, Dr. P works so hard to control Terry’s care, to stay on top of her case, to monitor every moment, it is nearly impossible to take care of Terry.

There are many challenges for doctors taking care of other doctors or their families, or, in reverse, there are many challenges for doctors when they seek care for themselves and their families.  The result of this conflict is often inferior medical care.  Therefore, wanting to honor and help doctors get good quality treatment let us take a moment to review the doctor verses doctor verses medical system dilemma.

First, it is hard for doctors to decide where to go for medical care.  If you stay in the same community where you practice you lose some privacy and perhaps even respect in the physician community.  Who do you chose and how do you avoid offending the other physicians you do not use?  If you leave your own area, you lose the convenience and familiarity of getting care close to home.

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How to Stop a Future Cancer Epidemic

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By Paul Levy

The theory of preventative care, including inoculations, is that we spend a little money now to offset big expenses later in life.  But sometimes behavioral friction keeps this from happening, even when the technologies and approaches are proven.  We are witnessing such a failure right now with regard to Human Papilloma Virus (HPV).

Here’s the story, from MGH’s James Michaelson, PH.D., arguably one of the most thoughtful, trustworthy, and sensible researchers in the field of analysis of cancer survival.  Jim and his team develop sophisticated mathematical methods for predicting the risk of local, regional, and distant recurrence.  He says:

There are a couple of good papers about Human Papilloma Virus (HPV), and the coming epidemic (yes, an overused term, but truly applicable here) of head and neck cancer. As Chaturvedi et al say in a recent paper: “If recent incidence trends continue, the annual number of HPV-positive oropharyngeal cancers is expected to surpass the annual number of cervical cancers by the year 2020.”

I get to see this problem from two angles: From my work as the the manager of the MGH/MEEI Head and Neck Cancer Database, and  from my experiments in using computer telephone messages to get patients in for preventive health services, such as the fabulous HPV Vaccines: Cervarix (from GlaxoSmithKline) and Gardasil (from Merck). The vaccines are incredibly underutilized. Only about 1% of eligible boys and only 50% of eligible girls get one shot.  Only about 25% of girls get all three shots.

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Stop Cancer Research?

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By James Salwitz, MD

Now here is a novel idea to save lives and stop the cancer plague; stop trying!  Sounds as crazy to me, as it does to you, but this idea actually may have merit.  Some smart people are saying that we have spent too much money for little gain, thus it is time to give up and by retreating win more battles in the war on cancer, than by charging ahead.

The Cancer Prevention and Research Institute of Texas (CPRIT) is the second largest cancer research agency in the United States, after the National Cancer Institute, controlling a pot of $3 billion dollars, most of which funds basic science and clinical research.  At recent hearings, university scientists and leaders in biotech proposed that CPRIT cut back on the money it is pouring into laboratories.  As Professor John Hagan of the University of Texas proclaimed, “If people didn’t get cancer in the first place, CPRIT would accomplish much of its mission.”

This radical idea was echoed in a scary article in the September issue of Lancet Oncology, entitled “First do no harm: counting the cost of chasing drug efficacy.” This editorial reviewed data, which shows that between 2000 and 2010 many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment associated death and side effects. The Lancet authors emphasized the vital need as we develop new therapies to carefully measure both benefit and harm before FDA approval and for careful post-marketing follow up after drugs are released to the general population.

Now in reality no one is saying that we should shut down cancer research labs and simply hope for the best.  Eventually we will completely cure this disease and basic science, as well as the development of new therapies, is key to that future. Perhaps what we should hear from these words is an idea about a different balance in health and healthcare.

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A Time for Boundless Energy and Optimism

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By John Halamka, MD

2012 has been a challenging year for me.

On the personal side, my wife had cancer. Together we moved two households, relocated her studio, and closed her gallery. This week my mother broke her hip in Los Angeles and I’m writing from her hospital room as we finalize her discharge and home care plan before I fly back to Boston.

On the business side, the IT community around me has worked hard on Meaningful Use Stage 2, the Massachusetts State Health Information Exchange, improvements in data security, groundbreaking new applications, and complex projects like ICD10 with enormous scope.

We did all this with boundless energy and optimism, knowing that every day we’re creating a foundation that will improve the future for our country, communities, and families.

My personal life has never been better – Kathy’s cancer is in remission, our farm is thriving, and our daughter is maturing into a fine young woman at Tufts University.

My business life has never been better – Meaningful Use Stage 2 provides new rigorous standards for content/vocabulary/transport at a time when EHR use has doubled since 2008, the State HIE goes live in one week, and BIDMC was voted the number #1 IT organization the country.

It’s clear that many have discounted the amazing accomplishments that we’ve all made, overcoming technology and political barriers with questions such as “how can we?” and “why not?” rather than “why is it taking so long?” They would rather pursue their own goals – be they election year politics, academic recognition, or readership traffic on a website.

As many have seen, this letter from the Ways and Means Committee makes comments about standards that clearly have no other purpose than election year politics. These House members are very smart people and I have great respect for their staff. I’m happy to walk them through the Standards and Certification Regulations (MU stage 1 and stage 2) so they understand that the majority of their letter is simply not true – it ignores the work of hundreds of people over thousands of hours to close the standards gaps via open, transparent, and bipartisan harmonization in both the Bush and Obama administrations.

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CancerLand – The Undiscovered Country

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By James Salwitz, MD

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.

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My Open Source Cure

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By Lia Steakley

[youtube width=”475″ height=”300″]http://www.youtube.com/watch?v=5ESWiBYdiN0[/youtube]

TED Fellow Salvatore Iaconesi released this video along with his digital medical records – everything from CT and MRI scans to lab notes. He posted the health files to invite the online world to participate in the process of treating his brain cancer. As he wrote on his website:

This is my OPEN SOURCE CURE. This is an open invitation to take part in the CURE. CURE, in different cultures, means different things. There are cures for the body, for spirit, for communication.

Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem. Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.

Create your CURE using the content which you find in the DATI/DATA section here on this site… All CURES will be displayed here.

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