When you wish patients would die

I haven’t blogged in quite a while, and my husband was harassing me to post something new.  I’m currently in my third year of medical school rotating through various specialties in the hospital.  It’s not that I’m too busy to blog (though I’m quite busy between hospital scut work and studying), it’s just that this year feels like such a whirlwind of emotions sometimes that it’s hard to put them out into the blogosphere without feeling a little exposed.  But maybe those are the types of topics that make for the most interesting read.  So I give you a topic that reflects what was going through my mind a few days ago: when you wish patients would die.

Try not to read too much into that – I don’t want to harm or kill my patients.  But sometimes you see people who have been suffering for so long, that you wish for an end to their suffering.  Unfortunately for some people, the only end that would provide this is death.

Read the rest of this entry »

It’s not a tumor!

Or is it? Every time I see Republican Presidential candidate John McCain I can’t help but notice the growth on his left cheek – his parotid gland (a salivary gland) appears to be enlarged, and no one in the media seems to be discussing this. A lot of parotid gland tumors are benign, but given McCain’s previous health woes (melanoma back in 2000) there may be reason to wonder if it’s something more serious.

Now, I understand there are certain health privacy concerns, but it seems to me that if you are running for President of the United States the people voting should have some guarantee that the candidate is healthy enough to survive 4+ grueling years in the White House. Choosing a strong running mate may prove more important for McCain compared to other candidates, because voters will have to decide whether they envision that VP as fit to run the country should McCain’s health deteriorate. He’s already 71 years old – add to that the significant injuries he received as a prisoner of war, the multiple bouts of a very deadly type of skin cancer, and now this possible parotid gland problem – he’s not the healthiest guy. People will be hesitant to vote for someone they see as old and sick (Bob Dole anyone?), which may be part of the reason why McCain’s camp has failed to discuss this facial growth. Still, I think the people have a right to know whether it is a benign, or something more serious.

To see pictures highlighting the changes in McCain’s left cheek, check out the blog “This Man Runs” – he’s an ENT doc who gives his own “television diagnosis” of the situation.

~Lily

God killed my friend

or at the very least stood by doing nothing while she died, while allowing people like this and this to live on.

My friend, we’ll call her Rebecca, died this past weekend at the age of 25. She was diagnosed 3 years ago with a brain tumor, and had every type of surgery, radiation, and chemotherapy possible, but it was not enough to save her. She was sweet, caring, beautiful, and strong; she had recently gotten married and had a lifetime worth of goals and dreams ahead of her. Rebecca had planned on becoming a teacher, and eventually becoming a mother. She volunteered in her community and was kind to everyone she met, regardless of whether she personally liked them. She was active in her church, singing and sharing her many musical talents with anyone who asked.

Let me now add a disclaimer that I don’t believe in a God – there are a lot of things we don’t understand about the universe, and I don’t pretend to have any answers. But when my friend died, I couldn’t help but wonder how someone who believes in a God can justify what happened to her. It’s the classic question – “why do bad things happen to good people?” See, I understand that religious people generally believe in free will, so sometimes when bad things happen to us it’s a result of some action we took. For instance, if I drove my car to the grocery store while it was snowing and got into an accident injuring myself, it’s reasonable to assume that my choice to go for a drive while the roads were slippery played a role in my injuries. It was my choice, and I paid the consequences, despite how inherently good or bad I might be. I also understand that the definition of “good” or “bad” is going to vary between people.

However, I’m not sure of anyone that would consider an early death, like what Rebecca had to endure, a good thing. And I don’t think her brain tumor had anything to do with a choice she made (in contrast to some cancers, like lung, which are often caused by an action like smoking). There was nothing she could have done or put into her body that caused that brain tumor – it was some sort of perverse accident, a deadly combination of genetics and environmental factors beyond her control. So then I ask, if you believe in God, what is your justification for this occurrence? Why did God give Rebecca a brain tumor (or allow her to die of a brain tumor) while letting serial rapists live? Why did God allow a tsunami to kill over 200,000 people in 2004, while doing nothing to stop a repeat child-molester? Is it because “God works in mysterious ways”? That response always seemed like a bit of a cop-out – if you don’t know the answer, say so. Did my friend sin, and this was her punishment? I don’t buy that – she wasn’t perfect (no one is), but there are many people in this world far worse. Did God smite her just for his own amusement? Or it is possible, just maybe, that God had nothing to do with any of this – that sometimes life sucks and good people pay the consequence? If God is loving and all-powerful, then he would have saved my friend. He wouldn’t have let her die before her parents, leaving behind a husband who is now contemplating what goals he has left that didn’t involve a lifetime with her. The world is a worse place today, because Rebecca is no longer here to share her love and talents with the rest of us.

~ Lily

FDA denies drugs to terminally ill – Part IV

In a follow-up to my previous discussion (part I, part II, part III), regarding the August 6th court decision which said that terminally ill patients do NOT have the right to access experimental treatments, I was able to attend a policy seminar at the Cato Institute in which panelists Michael Cannon (of Cato), Scott Ballenger (lawyer for the Abigail Alliance who argued the case for the terminally ill), and Ezekiel Emmanuel (bioethicist at NIH who agreed with the court decision) battled it out in front of a decent sized crowd. Forgive me for my tardiness in posting about this (…the seminar was 2 weeks ago) – life has been a bit hectic lately. Here’s a summary of each panelists’ main points, and the impression they left:

Scott Ballenger -He was very articulate and came across as the “nice guy” in the debate. Ballenger argued that terminally ill patients should be able to take a risk (which I agree with), and pointed out that they were fighting for access to drugs that were already in the clinical trial phase – specifically phase 2 and 3 – meaning that since we already let others access drugs at that point (people who qualify for a clinical trial) it should then be considered ethical to let the terminally ill also access these meds.

He then spent a good deal of time discussing the “rational basis test” versus “strict scrutiny”, which if I’m being honest, was a bit more lawyerly and over my head. His point with this (if I’m getting this correct) was that the Abigail case should be strict scrutiny because it involved the fundamental right of life/death. He pointed out a few cases where courts have upheld decisions supporting patient autonomy, such as end of life issues in which a person has the right to die – that is, they can choose not to take food or water, and it may not be forced upon them by medical staff or family. Ballenger also mentioned the right to fight regardless of the means and end, giving rape as an example. A rape victim can fight with whatever means necessary, regardless of whether those means will have any effect (so even if will make no difference in the brutality of the attack, they can still fight). I found this analogy compelling, because his argument is that terminally ill patients should be able to fight with whatever means necessary, regardless of whether the outcome will be positive or negative. Finally, he pointed out that the FDA allows “off-label” prescribing of drugs by doctors, despite the lack of approval (and sometimes hard evidence) to support this use – as an example, prescribing aspirin to ward off heart-attacks is considered an off-label, yet widely accepted, practice. This is useful to consider when we understand that the reason many of these terminally ill patients don’t have access to experimental drugs is because they fail to meet the criteria for enrollment into the clinical trials. A trial may be testing the drug for breast cancer, and you have head and neck cancer and thus don’t qualify. However, maybe your doctor knows the biochemical mechanism by which the drug works and thinks it might have even a tiny chance of making an impact on your cancer – should he be allowed to get that trial drug to you in an off-label fashion? I would argue that he should, and I think Ballenger would agree.

Ezekiel Emmanuel – I disagreed with him on almost every point, didn’t find his examples strongly supported his arguments, and in general he came off as a bitter and angry man. Allow me to explain – the first thing he does when he gets up to speak is complain that up on stage it is 2 against 1 (Cannon and Ballenger vs. Emmanuel), and that despite the fact that he is arguing for the opposite position he is only given 1/3 of the time to speak. Ballenger talked for a long time, so I’ll give Emmanuel a slight break, but Cannon barely got a chance to speak, so I think Emmanuel did in fact get almost half of the time to make his point. Me thinks he doth protest too much, and that really set the tone in my opinion (ah…the importance of first impressions). First he pointed out that the FDA certifies drugs based on their safety and efficacy, and said that the Abigail Alliance doesn’t care whether the drugs are effective or not. This seemed to amaze him (actually, almost every quasi libertarian viewpoint seemed so astonishing to him). Personally, I don’t think the FDA should restrict drugs based on efficacy. Why should they decide what’s considered effective? To a terminally ill patient, a few extra weeks of life might be effective, but if the government disagrees they’re not getting the drug. Moving on…Emmanuel thought that the Abigail Alliance asking for drug access after Phase 1 trials makes it less a principled argument and more a regulatory issue. I kind of agree with this, but I think the AA had to be realistic about what they could accomplish.

Emmanuel also argued that just because we have a right doesn’t mean we can exercise it by any means. Well…yeah…but I think a lot of rational people say that a fundamental right can be exercised by any means so long as it does not infringe upon the rights of another. I don’t think allowing terminally ill to fight for their life infringes upon the rights of others, but Emmanuel thinks that it is not in the best interests of cancer patients and society. He argued that by extending access to experimental drugs to patients not enrolled in clinical trials, you make it more difficult for researchers to meet their enrollment quota, and may deter patients from seeking drugs that are proven to be effective. His paternalistic view was that “sometimes your job as a doctor is to say ‘no’ to someone”…and I guess to him it doesn’t matter whether that someone is addict who needs an oxycontin prescription versus a dying patient who wants a chance to fight. This is where some of his examples didn’t strongly support the claims in my opinion. For instance, he gave an example of a bone marrow transplant study for patients with metastatic breast cancer that took place in the 1980’s. The randomized-controlled study took 4 years to get 1000 people enrolled, while 40,000 got it off trial. The study later showed that the drug wasn’t effective. Call me cynical, but if I’m dying of metastatic breast cancer, I don’t give a damn how long it takes a researcher to meet their quota. They still got people enrolled! And they had metastatic cancer for crying out loud. They were going to die without an intervention – would you enroll in a clinical trial and risk being given a placebo? I wouldn’t. His arguments would hold more water if researchers couldn’t get people enrolled because of access outside of the trial, but in each example he gave that wasn’t the case. His argument was that it took too long (usually 3-4 years) to get people enrolled. Boo hoo. Has he forgotten that these are people with families, and not statistics? (did I mention he left a bad impression on me?)

Michael Cannon – He didn’t get much time to talk, but still made a few good points. He said that “all laws must be both necessary and proper” and that this court decision fails on both counts. It robs patients of their right to self-determination and dignity at best, and at worst it prevents their lives from being extended. Cannon pointed out research he had done on economists and the FDA, and found that most/all economists that have written about the issue came to the conclusion that the FDA requires too much testing and commits more type II than type I errors – that is, more people are harmed by the failure of the FDA to approve useful drugs than by their approval of harmful drugs.

Follow-up points included discussions on giving patients incentives to enroll in clinical trials. If you’re going to risk being given a placebo, than you should be compensated for that risk. Both Cannon and Emmanuel agreed on this point, but Emmanuel thought there was no data to support that it increases enrollment. In my opinion, all that says is that they aren’t paying enough for the risk to take the drug versus the risk of taking a placebo. (it’s basic economics, no?) Both also agreed that the FDA has a really tough job, and that there is no magic moment at which a drug is definitively safe and effective. I think the difference is that Cannon doesn’t think the FDA will ever be able to do the best job, so the decisions should rest with patients (a libertarian utopia), while Emmanuel probably thinks that the FDA can be constantly tweaked and regulations reworked until a happy point is found (his utopia). In case it hasn’t been clear up to this point, I most definitely agree with Cannon and not Emmanuel. I don’t think the FDA can ever be sufficiently tweaked. As long as they are the sole group that determines whether you or I have access to drugs, they will never be able to meet our individual needs. I think it’s important that drugs be safe so people aren’t unnecessarily harmed, and I think it’s important that drugs be effective so people aren’t taken advantage of, but I don’t think the decision of safety/efficacy can be properly done through an agency like the FDA.

Companies charging unhealthy employees

Private companies are beginning to charge extra for employees who are unhealthy – either through a higher insurance premium or through deductions from their pay (around $5 or $10 per paycheck depending on condition). It’s a bit different than the other side of the issue I’ve talked about before, which is offering discounts for healthy employees, but the outcome is the same – those who are unhealthy end up paying more. Some employees are happy about it, and see it as an incentive to get healthy:

“I knew if I wanted to be healthier and pay less, it was up to me to do something about it,” said Morrison, who has lost 54 pounds and lowered his body mass index enough to earn refunds the past two years.

Though of course not everyone will like the idea:

Some workers and employee advocates say companies are intruding in workers’ private lives.

The National Workrights Institute says employers adopting the charges are trying to control private behavior and amassing huge amounts of personal health information.

“It’s a backdoor approach to weeding out expensive employees,” legal director Jeremy Gruber said.

First off, I wouldn’t exactly call it an intrusion on their private lives. Yes the employers need certain health information, but if you want to keep it private technically you have the choice to pay the penalties or get insurance through a different source – obviously that is not ideal to most people, but it’s a choice nonetheless. As for weeding out expensive employees, I don’t think it will do that. I think the companies are simply getting real about the fact that health care inflation is out of control, and something needs to be done about it. It makes sense for smokers or the obese to pay more in premiums, because they will likely consume more care, and their conditions are preventable. If companies don’t start to make these changes, they won’t be able to offer insurance at all because it will be too expensive.

I really don’t understand the mentality where it’s considered wrong for an unhealthy person to have to pay more. If you fail to quit smoking, you should have to pay for your COPD treatment. If you need to lose 75 pounds because you never exercise and your diet is terrible, you should have to pay for the multitude of health problems that will inevitably result from your obesity (e.g. diabetes, hypertension, etc). It just doesn’t make sense for someone who doesn’t smoke, who exercises fairly regularly, and who eats healthy, to subsidize someone else’s poor choices. I could understand the uproar if the companies were trying to charge more for someone who got cancer – I mean, the whole point of insurance is to protect yourself against certain risks, and obviously the odds of a working age person getting cancer is small (whereas the odds of a smoker getting lung cancer or COPD is really high and thus not much of an “insurable” risk).

There’s an entire article from the AP discussing the issue: “Some Companies Penalize for Health Risks

Miles Levin, 18, has passed away

I wrote about Miles a few weeks ago under the title “Brevity of Life,”after following his personal CarePage for the past few months. Miles had a rare form of pediatric cancer that he had been fighting, and after exhausting all treatment options, gracefully accepted what was to come. So it was with sadness that I read upon the blog today a note from his family, indicating that he passed away. They write:

This is the update you’ve been dreading: Miles’ earthly body has left us….early this morning. This is the day we’ve been dreading since June of ’05, and fearing it would come and now it has. We did everything humanly possible to arrest this disease. Our efforts were not enough. There are no interventions currently available that could have produced a different outcome. Hardly a comfort….Talk about destiny, G-d’s plan, purpose, anything you want, but the fact is that our boy, our beloved son and brother, was snatched from us, and it hurts. We knew it was coming, yet we’re shocked. We knew it was coming, yet we’re unprepared. We knew it was coming, yet it feels unreal. We knew it was coming, but we hate it.

I’ve never met Miles, but he still managed to have an impact on me. It is sad when someone dies of ‘old age’, but to die before that feels much more than sad…it’s tragic – like they were pulled from this earth before their time. My thoughts and condolences go out to the family of Miles, the many friends he made in his short but meaningful life, and the many strangers who, like me, found inspiration in his story that he so graciously shared. The family has requested that any who wish to honor Miles do so by making a contribution to the “UJF Miles Levin Fund,” described as a “newly established tax exempt fund designed to support existing efforts to combat pediatric cancer as well as providing our family a vehicle to create new directions in patient care”:

UJF – Miles Alpern Levin Fund
P.O. Box 2030
Bloomfield Hills, MI 48303
Attn: Susie Feldman

Miles Levin, whose blog inspired thousands, dies” – Detroit News, 8/19/07

Whatever life we get is bonus” – Anderson Cooper 360 blog with Miles Levin as guest columnist, 5/9/07

Court denies drugs to terminally ill – Part III

Ok, I’m trying to find new topics to blog about, but I can’t seem to pull myself away from this recent court decision.  Roger Pilon, of the Cato Institute, has written an op-ed in the Wall Street Journal today that I highly recommend for anyone trying to understand the legal background for where such decisions come from. To briefly sumarize some of his main points, he says that the dissenting judges see the right to life (and preservation) as fundamental, hence:

 “The burden is on the FDA to show why its interference is justified — to show that its regulatory interests are compelling and its means narrowly tailored to serve those interests.”

While the majority sees the issue differently – rather than a fundamental right to life, they focus on is “the right to access experimental and unproven drugs.”  It may not seem like much of a distinction, but according to Pilon it is the difference between a right that existed prior to the FDA, and a ‘right’ that existed once the FDA was established.  I’m going to be honest and say that much of this legal stuff is over my head, but what he says makes sense, in that this changes the burden of proof.  Says Pilon:

No longer would the government need to justify its restrictions; the dying would have to try to overcome those restrictions. But that would be impossible because now the court would no longer strictly scrutinize the government’s rationale. Rather, it would apply a “rational basis” test under which the government would win as long as it had any reason for restricting access. Deference so complete, the dissent noted, amounts to nothing less than “judicial abdication.”

He writes much more, including how the courts have changed, and why it was possible for the majority decision to include both liberal and conservative judges, despite their different approaches to constitutional law.

Additionally – I found this op-ed via the Cato blog, where health policy scholar Michael Cannon announced that they are holding a policy forum on September 25 that includes the Abigail Alliance (Scott Ballenger – lead counsel for the Alliance, Ezekiel Emanuel – chair of Bioethics at the NIH, and Cannon). Given my recent obcession with this topic, it sounds like something I should attend.

The New Right to Life” – Roger Pilon, WSJ

A Snub for the Dying” – Michael Cannon, Cato-at-liberty.org

Edit – doh!  Forgot that the WSJ requires a subscription.  If you don’t have a subscription, you can access Pilon’s article for free here.

Court denies meds to terminally ill – Part II

 I looked at the court documents from the case to see what else the dissenting judges had to say (this is in reference to my previous post here, on the US appeals court denying terminally ill patients access to experimental drugs). Here is a good excerpt:

The court fails to come to grips with the Nation’s history and traditions, which reflect deep respect and protection for the right to preserve life, a corollary to the right to life enshrined in the Constitution.

And 1 page later: 

In the end, it is startling that the oft-limited rights to marry, to fornicate, to have children, to control the education and upbringing of children, to perform varied sexual acts in private, and to control one’s own body even if it results in one’s own death or the death of a fetus have all been deemed fundamental rights covered, although not always protected, by the Due Process Clause, but the right to save one’s life is left out in the cold despite its textual anchor in the right to life.  This alone is reason the court should pause about refusing to put the FDA to its proof when it denies terminal patients with no alternative therapy the only option they have left, regardless of whether that option may be a long-shot with high risks.  The court is on even weaker footing when it relies upon the risks entailed in medical procedures to wrest life-and-death decisions that once were vested in patients and their physicians.  The court commits a logical error of dramatic consequence by concluding that the investigational drugs are somehow not “necessary”…While the potential cures may not prove sufficient to save the life of a terminally ill patient, they are surely necessary if there is to be any possibility of preserving her life.

(emphasis mine)

If you’re interested, you can read the entire document, including the opinions of the majority judges, here.  The majority opinion is 36 pages long, and the dissenting opinion is 29, just to give you an idea of how much both sides had to say.  I’m not sure how long it will be before the case gets taken before the Supreme Court (if the Supreme Court decides to take the case).  I’ll definitely be following this story.

Court denies drugs to terminally ill

Did you know that if you’re terminally ill, you don’t have the right to try whatever drugs are out there in an attempt to save, prolong, or at the least improve the quality of your life?

A US appeals court ruled yesterday saying essentially this exact thing – if there is a drug being developed, but is not yet approved by the FDA (usually it is in limited clinical trials), you may not get access to the drug, despite the fact that you are already dying. Says Judge Thomas Griffith:

“The FDA’s policy of limiting access to investigational drugs is rationally related to the legitimate state interest of protecting patients, including the terminally ill, from potentially unsafe drugs with unknown therapeutic effects.”

Do I really need to point out the obvious? They’re terminally ill! They’re going to die anyway! If they want to take a risk, even if the odds of recovery or therapeutc benefit are small, they should be able to. What right does the government have to tell people what they can or cannot put in their body? Do they really have the right to tell people they can’t try and save their own life?

One of the groups who took the case to court (and will subsequently be filing an appeal to the Supreme Court) is the “Abigail Alliance for Better Access to Developmental Drugs.” Abigail Burroughs was a college student diagnosed with head and neck cancer, who, after exhasting all available therapies, tried to obtain the drugs Iressa and Erbitux in a last ditch effort to save her life. The problem was that those two drugs were being tested in a clinical trial – one that she did not qualify for because her cancer was not the type it was being tested on. She died, and the drugs ended up getting approved 2-3 years later – Erbitux has since been shown to prolong lives of patients with Abigail’s cancer. From the Abigail Alliance website:

“Every drug for cancer and other serious life-threatening illnesses that the Abigail Alliance has pushed for earlier access to in our five and a half year history is now approved by the FDA! Many lives could have been saved or extended, if there had been earlier access to these drugs!”

Obviously we’ll never know whether that drug would have helped Abigail, but she should have been given the option to try it anyway.

2 of the 10 judges disagreed with the ruling, including Judge Judith Rogers who wrote:

“there is no logic to be found … in the conclusion that the right to save one’s life is unprotected” by the Constitution.

Needless to say, I completely agree. I wonder how the 8 majority-judges’ opinions would change if they were terminally ill? For more information on the nonprofit group Abigail’s father founded after her death, go to http://abigail-alliance.org/.

Source

Brevity of Life

Ever since I stumbled across his guest column on Anderson Cooper’s 360 blog a few months ago, I’ve subscribed to Miles Levin’s personal blog on carepages.com and have been following his journey.

Miles is a recent high school graduate who is facing a very deadly form of pediatric cancer, and it seems that, as of last week, he has run out of treatment options. He apparently only has 2-5 weeks left (unless some new treatment option appears, which seems unlikely), yet he faces it with a kind of calm that is both impressive and inspirational. From his July 26 post:

If I am nearing the end, I am trying to relax into it, to accept what is to be. I know that things are happening as they are supposed to happen, if not by divine destiny then by the overpowering forces of nature. I know this because I know that we have given this fight our all. We have left no stone unturned. I have fought my very hardest.

Now its up to the greater powers, whatever they may be. It seems a certainty that my path was not meant to be ordinary, but while everyone wants to feel special, I find myself alternating between feelings of gratitude for all that my life has been, with the feeling that it’s not asking too much to wish for more–to trade it all for a normal, obscure teenage existence in which I craved greater impact.

I’m getting quite a lesson in not getting what I want. Turns out it is one of the hardest we’ll ever have to learn. I’m not a child anymore; I can’t get away with throwing a tantrum. This is hard, and there’s no easy way around that.

It’s very humbling to read his words – every day many of us strive to get rewarded, to feel special, and he would trade it all just to buy back his life. I imagine many of us would share his feelings if we were in his position; and while we are fortunate to have our life and hopefully our health, we will likely continue to take it for granted until faced with a debilitating condition such as cancer. I don’t think there’s anything inherently wrong with this approach, but perhaps every now and then we should stop, breathe, and remind ourselves to enjoy our life, even if only for a brief moment.