And now for something completely different

I usually don't post a whole lot about the way I relate and exist in my non-erotic world in this blog. For some reason, I hesitate to blur who I am here with who I am there. Which, the more I think of it, seems completely disingenuous and causes me to reflect on why I allow myself to compartmentalize when compartmentalization is something I fight against in nearly every element of my life.

So, I'm bringing it here today. Combining the elements of what makes me, me. If I alienate a few readers, fuck 'em. This is some of the stuff that I am extremely passionate about. The Erotic Bohemian is nothing, if not multi-dimensional.

Many of you know when I'm not titillating the masses with my somewhat subversive views and meanderings on sexuality, I have another role which means a lot to me. I work in health care, primarily with an aging, disabled, and dying population. I've been in health care longer than I've been an official perv, and sometimes what I see in that world is more subversive and corrupt than the naughty little pictures I paint about what gets me hot and bothered.

Speaking of hot and bothered, the news in the last few weeks has been saturated with talk of President Obama's proposals for health care reform. And almost as if on cue, the virtuosos of political spin have jumped all over some of the recommendations. What is of particular interest to me, are the features of H.R. 3200 (link to the bill is in PDF format) highlighting a new framework in which end-of-life care would be approached. Basically, what is being addressed is a way to involve Medicare in mandatory conversations between health care practitioners and patients 65 years and older which would cover Advance Directives and end-of-life wishes. As persons become eligible for Medicare beginning at around age 65, every five years they would be engaged in an ongoing discourse emphasizing what quality of life means to them. (The section on Advance Care Planning begins on page 424).

I cannot tell you how heart-wrenching it is to take on the cases of those dying patients who have never had a discussion with their loved ones about end-of-life wishes. No one wants to find themselves in a situation where they *have* to make a choice about which treatments to withhold for another person, particularly if that other person is one's parent, spouse, aunt, uncle, sister, brother, etc. In those moments filled with panic and fear of the unknown, having no clear knowledge about what the ailing person would or wouldn't want done to their body, the last thing a loved one wants is to second guess anything.

Sadly, in my line of work, I often see people at their most frail, weakest and physically and cognitively impaired. When the patient is deemed as no longer having the capacity to make their own health care decisions, the health care team looks to the patient's family members for direction. Ideally, we can have these conversations before a medical crisis occurs, but it doesn't always work that way. What's worse is when the family members responsible for the patient's care have no clue whatsoever as to what the person would want. "Do everything," is the phrase that makes me cringe when the patient's loved ones direct the staff to pull out all stops to "save" the 95 year old with multiple, chronic medical issues and no quality of life to return to *if* we in fact, do manage to save him.

A major problem I see in health care today is that there are far too many elderly folks being kept alive with no quality of life because we live in a society that fears aging and death. That, and modern medicine is all about "saving life" with the pharmaceutical companies profiting like mother fuckers by pushing medications to maintain and extend life for sick, frail elderly people while simultaneously creating new health issues for them. It's like juggling plates in mid-air; "Oh, you have hypertension, take this pill" and one plate is set into motion; "Oh, now your legs are swelling and filling with water, let me prescribe this pill" and another plate flies into the air; "Oh, crap, now your potassium level is declining, here, have this pill"; and before long, those plates are spinning out of control and guess what? One or more is going to to fall, break, and crash to the ground into a hundred pieces. (But don't worry, there's a pill for that too.)

Take enough pills and subject yourself to invasive (and probably unnecessary) treatments, and you too can live to be 100 years old. You can beat death! But, what no one will tell you is that if you do live to a ripe old age hopped up on more medication than Liz Taylor, chances are, there will come a time when you will no longer be able to take care of yourself. Your lungs may still be breathing and your heart is beating, but those things you used to do every day? Like, walk? Feed yourself? Take a shower? Take a shit? You very well might need help in order to carry out those daily activities. Now, if you do happen to be Liz Taylor, then you won't have to worry too much, because your money will afford you ample assistance at home or at least, admittance into a resort-like home for the aged and infirm. Oh, you're not all that wealthy? Family too busy with their own lives to help you out at home? I hate to tell you this, but you might just be fucked.

The even greater irony is that most elderly people in the U.S. are already on a fixed income. So when it comes time to look at the dreaded nursing home option, the shock of all shocks awaits. What many, many people fail to realize is that you don't just drop off your grandmother at the door of a long term care facility and say, "Ok, grandma had a great run for 86 years, but we can't take care of her anymore, so here she is". See, grandma is going to need to cough up between eighty to one hundred thousand bucks in order to be admitted to a half way decent nursing home. That means that any assets, savings, or property in her name (provided that grandpa is already deceased) will need to be cashed in first so that the facility has a guaranteed payor source for at least the first year of grandma's stay in the home. Medicare does not, I repeat, does NOT cover the cost of long term/skilled nursing home care. The average cost of room and board in a nursing home in NY state is currently just under $300 per day. By room and board, I mean, a smallish room containing a bed, dresser, chair, bathroom that may or may not be shared with a roommate. Meals, linen, laundry, 24/7 access to nursing care/assistance is also covered in that rate; medications, tv, phone, physician visits, and various treatments are not. Nursing homes like private pay residents, which means, that unless you present with the means to cover that first year's cost of care, you're likely to be put on a very long waiting list. When your private funds are exhausted, you then apply for Medicaid, but only after you have proven to the government that you have no other resources or means of income left. And for the record, for as much as we hear about the disproportionate numbers of elderly Medicaid recipients sucking the funds from the "system", the "system" only reimburses nursing homes about 1/3 of the cost for each resident covered. The facility eats up the rest of the cost. This is exactly why private pay patients will always get first dibs on admission to a long term care facility.

The recent frenzy over "health care reform" and H.R. 3200's proposals on Medicare involvement in end-of-life discussions is now being portrayed by Conservatives as the equivalent of the government "forcing" the elderly to die off . This just makes me want to laugh and cry all at once. Are you fucking kidding me?? Man, you just gotta love the way fear-mongering sets off a slew of twisted interpretations and creates divisiveness. I think its about time people start becoming educated on options and raise awareness on what can be expected in terms of outcomes for treatments as one becomes older. This ridiculousness that has become the norm in Republican/Conservative discourse is nothing more than a scare tactic, and quite frankly, its getting old and iff anything, that mentality is what needs to be "forced to die off".

We're all going to get old and eventually, we all are going to die. That outcome cannot be avoided. What can be avoided is prolonging the inevitable in the form of performing heroic measures and sustaining of life in its physical form when there no longer is a quality of life in any other form. I was talking with a nurse I work with recently and we found ourselves idealizing what long-term care *could* look like if, instead of being regulated under a model that supports the extension of life at all costs, the notion of being kept comfortable became the standard. To be sure, the Hospice model of palliative care is all about comfort measures only, but why can't nursing homes adopt that model of care as well?

Nobody dreams about the day when they give up their home, belongings, independence, and ties to the outside world so they can live in an institution for their final years on this earth. How many residents are just *existing* in nursing homes--such as those in late stages of dementia who have forgotten how to eat, use the bathroom and walk, and who would not be alive if it weren't for the medications that were administered to them? The fear mongers talk about Medicare and the government taking away elderly people's right to live...what about the right to die a dignified, natural death? One free of feeding tubes, wheelchairs, adult-diapers, pureed foods, mechanical respirators, oxygen tanks and strangers performing intimate care on a failing, decrepit body.

Quantity of years means nothing without quality of life. If receiving mandatory counseling every few years offers the elderly an opportunity to consider and determine what they value about life means less people living to an old-old age in an over-medicalized, institutionalized setting, then I'm all for it. Why not have the information sooner rather than later? Why is it so hard to accept that one day, our lives will draw to a close and while we're still able, we *can* make some choices about what we believe makes life worth living? Shouldn't we have some say while we still can as to how those final days will play out? We need to stop avoiding the inevitable and face the reality that aging and sickness will reach us all sooner or later. Modern medicine cannot change that reality; at best it can only postpone it.