First a disclaimer. I am not against end of life counseling. In fact, as a hospitalist I often find myself wishing PCPs had spent more time discussing end of life issues with their patients.
On the other hand the political maneuvering and obfuscation by participants on both sides of the debate have long perplexed and concerned me. Boosters of the provision never adequately explained in plain language why it was necessary or exactly what it would add to what was already in place. Medicare payment for counseling was already embedded in the system of CPT codes. More than that, Medicare has for years allowed higher coding, exempt from the “key components” criteria for levels of service, if counseling was the principal reason (took more than 50% of the time) for the visit. That fact was never acknowledged in any of the debates or news reports I encountered. It raised the obvious question of why a new provision was necessary, and the question was never answered.
For me that was the key question and it was the one thing that made me just a little uneasy about the provision. Since we already had regulations in the CPT codes making it easy to get higher reimbursement for counseling, just what did the new provision add? Was it even better reimbursement? How much better? Did it elevate the topic of advance directives to some singular status above other types of counseling? After reading the provision in the original bill several times I was left with more questions than answers. No, there was no direct provision for death panels, nor was there any mention of pulling the plug on grandma. What was clear was that the mechanics would have to be worked out by policy makers with considerable discretionary authority.
This was supposed to be the administration of transparency. Transparency would have been helpful here. Unanswered questions, obvious questions, often lead to unhealthy speculation. Though not a death panel alarmist myself it's not hard for me to understand death panel alarmism in the public debate. It might have been averted had the proponents better articulated their position, and done so in plain and specific language.
The provision for end of life counseling was dropped from the original draft before final passage of the health care reform bill. So why is it resurfacing now? The New York Times article explains that the Obama administration has decided to implement the policy through what is known as the the regulation-writing process. It's a way to circumvent Congress---to enact the provision without legislative approval. The process isn't anything new. It's been used by Presidential administrations for decades. What's concerning is the effort to suppress debate. Again, from the Times article, referring to an e-mail from Democratic Representative Earl Blumenauer, one of the lead supporters of the provision (my bold):
Moreover, the e-mail said: “We would ask that you not broadcast this accomplishment out to any of your lists, even if they are ‘supporters’ — e-mails can too easily be forwarded.”
The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.”
That's what rubs people the wrong way. It's the transparency thing. This is an issue that needs clarity. Proponents didn't provide it the first time around. They owe that to the American public. An additional round of debate would offer them another chance to demonstrate clearly that this provision is nothing more than what they say it is: a means to facilitate informed treatment choices for patients.
Let me end with the perspective that, with or without the new provision, end of life counseling can (and always has) cut both ways. Depending on how honestly and skillfully the conversation is carried out (and it does take a great deal of skill) the outcome might be a better educated patient equipped to make an informed and rational choice, or, perhaps all too often, a poorly informed patient who is maneuvered into inappropriate exclusion of potentially effective care. The New York Times piece, quoting an academic palliative care specialist, gives these examples:
For example, Dr. Silveira said, she might ask a person with heart disease, “If you have another heart attack and your heart stops beating, would you want us to try to restart it?” A patient dying of emphysema might be asked, “Do you want to go on a breathing machine for the rest of your life?” And, she said, a patient with incurable cancer might be asked, “When the time comes, do you want us to use technology to try and delay your death?”
I'll give Dr. Silveira the benefit of the doubt and acknowledge that the Times may have misrepresented her statements, but these are examples of misinformation, inappropriately leading the patient away from beneficial care. If this is how an academic palliative care specialist, arguably the best among the experts in such counseling, informs patients about their options, how is it done in the real world? This is where the law of unintended consequences kicks in.
So what about the heart attack followed by heart stoppage (usually VF)? It would be inappropriate to expect most patients to give an informed answer to that question without explaining the very high success rate for defibrillation when VF is witnessed in a hospitalized patient experiencing MI. As for emphysema, mechanical ventilation does not mean going “on a breathing machine for the rest of your life.” A course of mechanical ventilation for COPD and respiratory failure is a valid option for many patients, is often of short duration and carries a reasonable prognosis.