Background
As you may know, my father has failing kidneys, caused by a long life filled with antipsychotic medication, which was preceded by the excesses that come with being a satellite engineer during the 1960s and 1970s. In short, he did a lot of coke, and even some PCP, in his day. Hell, he gave me two pages, double-column, of all the drugs he’s taken.
We signed him up recently with Caremore, a health management company that gets paid $600 a year by the Feds to more cost-effectively manage Medicare costs. They’re privately held and so their operations are pretty opaque – even ol’ Google fails me here, save some positive reviews in a couple business journals. (From the consumer perspective, maybe this should make me nervous.)
So everything starts off or less fine. He gets more care, additional coverage above and beyond straight-up Medicare for a couple services, and it’s not means-tested. And it’s free! Vhat a country!
So, what’s the problem?
The problem is a phone conversation I had with the nurse practitioner on Thursday. See, she’d mentioned that she would be visiting my father with the medical director, who seems to sub for the doctors who are actually more experienced and familiar with diagnostics and patient interaction when they have golf, a conference in an exotic location, or divorce hearings.
It seems like they’d talked Dad out of dialysis and convinced him to stay where he was, transitioning to hospice care.
Now it’s less ass-y than it initially seems. His sister and I spoke with my dad about his options, which included hospice care. At the time, we seemed to agree that he would try dialysis, if only to stay alive for his girlfriend, a delightful schizophrenic who weighs 300 lbs and I last saw wearing pink tights with the word “Sexy” on the butt in gangsta script. Yes, she actually brought class to the Wienerschnitzel where we had lunch.
So I’m willing to give a pass on the actual recommendation. I’m even willing to give a pass on the fact that they appear to have changed his mind – after all, they’re professionals who might rightly think that he’s underestimated the hardship of dialysis. (Having a damn tube surgically implanted into you that will help them suck your blood from you to be refined three times a week sounds a lot like my experiences with certain banks. Do you honestly expect a “thank you” after painfully sucking us dry, recycling our shit, and returning most of it?)
So what’s the problem? The Caremore nurse is an IDIOT.
Let me say, here, that I know and respect a lot of nurses. The nurses that helped remove my grenade of an appendix were wonderful and knowledgeable. While gossiping about the deficiencies of the anesthesiologist while I was waiting for him did not inspire confidence, they were right in observing that he is always late and kind of a douche. So I’m not picking on all nurses. Just the dumb ones.
On the phone, she sounds like she’s on weed and Prozac. I envision someone who has a perpetually wide-eyed look, a big smile, and probably an easy lay, though the inane pillow talk afterward would make you wish syphilis wasn’t such a slow killer.
But there are a few things you should NEVER say to someone to whom you’re supposed to sell hospice care. Here are three I got treated to in one conversation.
1. “He has so many problems that he won’t get better.”
I actually agree with her. He does! I’ve been amazed at all the shit that he’s put his body and mind through, and how well he’s held up. Maybe meth does a body good, even if it fucks up your skin. I’m willing to overlook the obvious rudeness.
But if you’re dealing with someone halfway intelligent, they’ll figure out that the Feds aren’t giving you $600 a year for nothing. And you’re not giving away coverage, on paper, above and beyond what ordinary Medicare A and B would provide, out of the goodness of your hearts. You’re there to cut costs. And the internal incentive structure might even reward our nurse by having a significantly lower expense rate than average. (Upon further reflection, based on my experience, it’s possible that she hasn’t figured this out, and her bosses are pocketing this.)
If possible, frame it as a choice – our choice – guided by a recommendation based on medical experience. I might buy that crap!
2. “You need to consider quality of life and not just quantity of life.”
NO SHIT!
We had a conversation about that with my dad. But you didn’t know that. And you didn’t get to know that, because WE weren’t invited to your little shindig.
One of the challenges older, more vulnerable people with various memory issues face is that they (we?) are more susceptible to pressure and what I’ll call “dynamic instability of preferences”. I probably stole that from a behavioral econ class. I guess that makes us even, because Cornell stole my will to live. Anyway, it means that people, like my father, can be easily convinced one way or another.
We’ve got experience with this. Some insurance agents entered the group home and gave him a $25 gift card to switch insurance plans. This is very illegal, and, coupled with more incompetence on the part of a lot of people, led to him being disenrolled in Medi-Cal. So yeah, I’m probably a teensy suspicious and resentful of health insurance representatives.
I understand that quality of life is important. That’s why we’re not going to make him completely stop smoking, or stop eating steak.
But by phrasing it this way, you make two bad assumptions: (1) his life would be extended by kidney dialysis; and (2) you know what quality of life means for him.
The first is plain bad marketing. I’m willing to believe that his life won’t be extended by dialysis – it could, especially in the case of peritoneal dialysis, shorten it. Note that I agreed that he’s got lots medically wrong. Hell, I’m even willing to entertain my ghoulish Austrian school economic side and state that it is simply not cost-effective for him to be on dialysis. I’m already sold – don’t undercut your goal through pithy, hackneyed one-liners.
The second is somewhat more subtle. How well do you know what makes him happy? You repeatedly emphasized that hospice care is all about making someone comfortable. Does that mean sponge baths by attractive nurses? Or maybe all the orange juice you want? Like human happiness in general, there’s no one-size-fits-all approach to end-of-life quality of life. From a conversation with my dad, it seems like he wants to make his girlfriend happy, and she wants to have him around for as long as possible. Therefore, a case could be made for extending his life by any means necessary. (I’m keeping my kidneys though – I might need to sell one to buy an iPad.)
And finally,
3. “It won’t cost you a dime.”
To quote Lewis Black, whom I’ve obviously tried to channel: ARE YOU FUCKING KIDDING ME?
Right in the middle of some half-assed arguments about quality of life, you want to pull the cost card? Is this the quality of the average nurse practitioner when it comes to discussing hospice care? I can only describe the effect as what I imagine it would be like to open up Playgirl and see Michael Moore centerfolding. What the fuck did I buy? And who the fuck thought that it would be a good idea to put a guy who would finish third in a swimsuit competition with Rush Limbaugh and Karl Rove?
In conclusion, let me, Dear Reader, humbly suggest that if you are a nurse, or know a nurse, you remind them that bedside manner is required even if you are communicating by phone, and especially when said bed may be a deathbed. Be kind, dump the script, and steel yourself. It’s a tough job, and you got off easy with someone who will explicitly communicate acknowledgment of the difficulty and challenge you face in your position.
And maybe, just maybe, if I get you on a call, I won’t be tempted to take a very loud and messy shit while discussing our philosophical differences on patient care.
2 comments:
During the last weeks before she passed, my mom switched to hospice care. I noticed an immediate shift in how they dealt with things. They avoided any treatments or options that would prolong a patient's life. It makes sense for most hospice patients because it is end of life care. The point is make passing on as comfortable and easy as possible. I was also upset when they denied our request for more nutritive IV fluids but years later, I feel a bit differently. It would've only prolonged her suffering. My mom repeated requested euthanasia in her last weeks and at that point, I wished it had been a choice. I know it's little comfort for you who is going through this situation right now.
The lady you spoke to sounds insensitive. Nobody cares about how much it costs. If it had been 500k, I would've still paid for it. I don't how much pain your father is going through. Perhaps he does want to live for as long as possible. In which case, you should escalate higher up or switch companies to get what your father needs.
My thoughts are with you and your family.
Nancy,
Thanks for your thoughts and sharing your experiences. My condolences for your loss, though I am glad you found comfort in the choice of hospice care for your mother, even if it came years later.
I feel a bit better about the whole thing after writing about it. Both my dad and I are pretty pragmatic and philosophical about his situation. I resent the manner in which this was done, and not the actual medical judgment. It's a continuing discussion, one I was able to continue this afternoon, and one which will probably extend into the next few weeks.
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