November 2009


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The phrase, “death by a thousand cuts” has been running through my mind lately, as I’ve been with Dad to multiple doctors’ appointments over the last couple weeks. Except, I’ve amended it for his situation to “death by a thousand specialists,” as each doctor we’ve seen seems to be delivering their own specific bad news.

Yesterday was a double-header, with a visit to the podiatrist and Dad’s new cardiologist. The podiatrist discovered a rather nasty ulcer on the tip of Dad’s big toe – if that’s not taken care of, infection could get down to the toe bone, which would require a rather large cut, I’m assuming, to remove said toe (see “It’s Ba-a-a-a-aack“). Now, as a result, I’m back to the hated toe-dressing routine on a twice-daily basis.

Then, with a break for lunch, it was onto the new cardiologist, to get his take on the echocardiogram taken a couple of weeks ago, along with a chest x-ray taken last week. On the positive side, congestive heart failure doesn’t seem to be a current concern. On the negative side, though, there’s sign of scarring in his lungs, called pulmonary fibrosis, which is a likely cause of his shortness of breath. Additionally, he has what’s called pulmonary hypertension, which means the side of his heart that pumps blood to the lungs has to work harder because of that scarring, and so has become enlarged. At least, I think that’s what I’ve been able to put together from what the cardiologist told us and what I found on Dr. Internet. So now, Dad’s scheduled for a procedure with the ominous name of “nuclear stress test” or, more commonly, a chemical stress test. I guess this will give the doctors more information about just how crappy Dad’s heart really is.

And, once this test is done, he’s likely to be referred to a lung specialist, which will, in all probability, lead to more tests.

I’ve written about this before (see “Decisions, Decisions“), but I’m just beginning to question the “why” behind all these specialists and tests. He’s 87. He has a hard time breathing. One of the treatments Dr. Internet suggests for pulmonary fibrosis – the scarred lungs – is a lung transplant. Do we really need tests to determine if an 87-year-old man, with compromised kidneys and heart disease, needs a lung transplant? Can’t we just get him one of those little oxygen tanks in a snazzy, nylon carrier and be done with it?

Instead, this system is geared to provide care at a level that seems to suggest an 87-year-old man with scarred lungs, an aging heart and failing kidneys could stay alive forever. Now, yes, we could simply say “no” to the tests and specialists – and, frankly, if the cardiologist suggests a consult with a lung specialist, I’m going to want some more information on the “why” behind that referral before we make the call for an appointment. But, still, there’s an urge to know and treat that is very difficult to resist, and the decision trees that sprout from each new test result often have at least one or two branches that leaf out with hopeful – or, at least, palliative – treatments at their very tips. And it’s only human nature to reach out to those hopeful, if not terribly weight-bearing, branchlets.

But I’m also beginning to see, not the end of the beginning, but, more probably, the beginning of the end. And, more sadly, I’m beginning to feel like Dad is having a similar vision. And it’s very difficult seeing that these tests, which, in a hopeful mind, lead to new opportunities, also, in a more realistic/less-hopeful mind also seem to place Dad in their cross-hairs. This is another reason why I question the need for yet another specialist – 999 cuts may have no less an effect than 1,000 to the outside observer, but, to the victim in question, there still may be a blessing in that one less violation of his mortal flesh.

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I thought I’d been able to put Dad’s big toe behind me, but it appears to be wiggling its ugly, infected self back in my face again. This morning’s doctor’s visit was to the podiatrist, to check on the progress of the wound that accompanied him home from the hospital and the overall fit of the diabetic shoes he got a couple weeks ago. The good news is that the old wound is completely healed. The bad news is he now has a new one, on the very tip of the same toe, and it’s significantly nastier looking than anything I had to deal with before.

I have done my very best to avoid Dad’s feet for the last 3-4 weeks, since the podiatrist said I no longer had to dress the original location – what had been a 3-times-a-day task. Truly, the feet of an 87-year-old could make even the most ardent slasher-movie fan squeamish, so I took my reprieve from toe duty as a blessing and left Dad to manage his 10 little piggies on his own.

This, it appears, has been a mistake. The wound – an ulcer, in medical terms – has become somewhat deep. Maybe it was caused by the toe rubbing against the new shoes, or maybe it’s just one of those things that show up in a weak spot in the skin of a diabetic. But since Dad doesn’t necessarily change his socks every day (in a life filled with caregiving battles, you pick and choose, and sock changing hasn’t been at the top of my list lately) it’s bled a little and deepened. If the situation isn’t reversed, it could get down to the toe bone, which could lead to major problems.

So the dressing-change routine has returned as a part of my life – twice a day, this time.  Pull off the sock, peel off the old dressing, a spritz of wound cleanser, a dab of antibiotic cream and a covering wrap of gauze and tape – then, a deep breath while I wait for the next shoe to drop.

So, have y’all noticed just how many people are getting really old these days? I mean, I’ve read all the demographic trend reports about just how the 80 – 100-year old age group is now the fastest growing. And, heck, I live on spit of land where the median age appears to be somewhere in the mid-70s, and every other car is either a Prius or a Mercury Marquis with an 83-year-old behind the wheel. But it wasn’t until I started talking to others in my age group that I realized just how many others have parents about the same age – and in about the same shape – as my father.

It seems that our parents are among the first and biggest beneficiaries of modern medicine’s major gains. They’ve had Medicare for the last 20 years or so, and half the latest pharmaceutical innovations seem to be aimed toward their needs, improving their sex lives, urinary-tract performance and ability to cast wheel-thrown pottery with a ghost over their shoulder. Most of their parents were lucky to make it long enough to milk a couple years out of Social Security, but now our parents are living so long they’re bankrupting the system. But, these negative actuarial aspects aside, I’m finding it very heartening to learn that I am not alone as a child of this greatest generation.

A college friend and I have been emailing regularly the past few days as her father has gone through a health crisis, involving falls, congestive heart failure and kidney disease. She wonders, just how did we get to be so old. Boy, can I relate. A friend from church has a dad complaining about his meds and his hesitancy to raise any questions with his doctor, out of fear of being a bother. Yep, I’ve got that one down, as well. And then there’s the caregivers’ support group I belong to, through which we all – spouses and children – are trying to figure out just how to remember the humor and humanity that made our loved ones, well, loved.  In fact, it seems like almost any gathering I go to involving other folks my age or older features at least one little conversation circle covering all these issues all at once.

My father and his twin brother, both now 87, are the youngest from their generation of the family tree. And I’m the youngest of my generation on that side of my family – I’ve just turned 50, and I have first cousins pushing 70. So I have many cousins who have tread this path already with their own parents. But a number of my cousins and siblings also came of age during – or before – the Summer of Love. All of us Boomers have thought of life as being eternal and everlasting, in a very physical – not just spiritual – sense. So, now many of us are confronting the physical signs of decay like they are new phenomena

For our parents, such signs of decay were merely another sign of life. This is a generation that can remember wakes held on their dining room tables, and small children dying of illnesses like scarlet fever or the measles. I have one photo passed down to my stepmother, from her mother’s generation, of a flower-laden corpse surrounded by mourners. I guess this was a form of grief-sharing for that generation, perhaps new to photography. Today it seems morbid, but, maybe, then, when a photo was so much cheaper than a carriage or train ride, it was a way to reach out to far-away relatives to say, “You see, we treated Uncle Friederich well. Isn’t it sad. Look at this and you can cry with us.”

Our generation, however, was raised on emotion and emotional processing. For us, it wouldn’t just be about the beauty of the floral arrangement shown in Uncle Friederich’s wake photo, it would be about who Uncle Friederich was – was his father an alcoholic, did he beat his wife or keep a young farmhand on the side. Was he kind to poor people, or weep when his favorite dog died. So it’s fitting, especially now, that the Greatest Generation went on to raise the Largest Generation, for now we all have each other, with whom we can talk about all this family drama.

My fear, though, is that all this sharing is just a prelude. Another 10 years or so, and the parents will be gone, but we’ll have all this built-up medical awareness and a range of conversational habits directed toward aging and dying. Oy. While the children of the next generation – now adults on their own right – got to know me and others of my generation through our memories of seeing Janis at the Filmore West (not me, so much) and our appreciation of irony in art (really, me, so much), they’ll end up remembering us for our ability to endlessly parse the difference between beta blockers and statins. And, given the demographics, there will be a lot more of us than there will be of them. To whom shall they turn for a little bit of levity in life?

So, to my fellow baby boomers, I suggest we work harder on the humor and lighten up on the drama. For example, Consider taking on the weekly ritual of filling your parent’s pillbox during cocktail hour. I did so tonight and cracked myself up at the irony of slotting drugs into daily compartments between gimlet swigs:  Metaprolol for him, Ketel One for me, Diovan for him, Ketel One for me, Proscar for him, Ketel One for me, etc., etc., etc. And when your parent suggests a final trip around the country – as Dad did tonight – to visit family and friends, encourage it as an adventure, even if – in your heart – the mere idea terrifies.  Because, as this generation – for good or ill – has been a role model for us, so we should be a role model for those that follow – do we want to be looked after with pity or awe?

And, just as important, our actions in helping our parents approach such difficult times could help us once we’re lucky enough to reach such advanced age ourselves. If we can model humor and adventure to our own aging parents, then, just perhaps, we can approach the experience with the same upbeat attitude, ourselves. I don’t know about you, but I plan to still be smiling,  behind the wheel of that just-perfect Prius or (God forbid) Mercury Marquis, as I make my own farewell tour visiting those whom I hold dear.

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It’s very interesting being in this caregiving position as the health care debate rages on. One of the big issues in these conversations has been the concept of “rationing” – opponents of reform fear some sort of “death panel” will be making decisions about who does or does not receive treatment, based on some arbitrary criteria of worth to society. Proponents, on the other hand, talk about the irrationality of current treatment protocols, which can end up providing mammograms to 86-year-old female Alzheimer’s patients. Neither side seems to look at the other, instead preferring to stare directly into whatever television camera may be looking their way.
Like most folks I come at the issue with a bias. I’m a self-employed, liberal-leaning Democrat who sees the current health care system as ready for the scrap heap. Anyone who doesn’t think rationing already occurs certainly hasn’t been responsible for their own health care coverage – the current system simply rations care to those who can afford to purchase it. As a healthy 50-year-old, I’m paying more than $400 per month for insurance right now (and I have to have insurance because, like the plans likely to come up for final votes, Massachusetts mandates individual coverage). That gets me a policy with a $2,000 deductible – translation: the first two grand in expenses come out of my pocket, aside from an annual physical – and, once that deductible is met, I still have to pay 20 percent of every bill until my total out-of-pocket expenses hit $4,000. So, add my $4,800-plus annual premium bill to the $2,000 deductible, and I’m out almost $7,000 before the insurance begins to kick in, and almost $11,000 before it’s paying all the bills.
Of course, there are some benefits before I reach the deductible max. A big one is that the doctors and drug stores can only charge me at the rates the insurance company has negotiated with them. Last fall, I came down with Lyme disease (kind of a rite of passage on Cape Cod), and the nearly $700 in tests cost me only $139. But anyone who thinks a freelance writer with an extremely variable income isn’t going to think two or three times before making a doctor’s appointment – even a necessary one – isn’t doing a very good job of looking at life through another’s window. Reform opponents call mine an example of the power of patient choice to limit health care spending. Call it what you want, but I call it rationing.
[/end personal rant]

 

So, what does all this have to do with my father? Well, I’ve been pretty closely involved with his health care since his six-way bypass (yes, even his bypasses had bypasses) in 2004. And, since he moved out here in March 2008, I’ve been with him to pretty much every doctor appointment he’s had. The number of those appointments has snowballed over the last 6 months, as his kidneys have begun going seriously downhill, his congestive heart failure has begun getting worse and his diabetes has turned foot care from vanity into necessity. In the past three months, he’s had x-rays from head to toe – literally. They photographed his head to check for sinus blockages (they also confirmed the existence of a brain – I’ve questioned this from time to time, so the result was reassuring), his chest to check for fluid build-up and pneumonia and his feet to make sure a toe infection hadn’t gotten to the toe bone. He’s also had an ultrasound of his heart (aka, and echocardiogram) and more blood tests than I can count. All of this for less than $200 per month – what Medicare takes out of his Social Security check, along with the $100 he pays for his Advantage HMO program.

I’ve also taken over managing his prescriptions, which have multiplied as his specialist count has grown. I now have a two-page spreadsheet to consult during my weekly exercise of filling his pillbox. Two different blood-pressure medicines, a diuretic, a prostate shrinker, a pee-encourager, a cholesterol-reducer, a sleep enhancer, a blood-sugar reducer and a fistful of vitamin supplements. All this for an 87-year-old man who refuses to cut back on his drinking, orders veal parmigiana and pie a la mode for lunch when he gets the chance, and refuses to recognize the connection between what he puts in his body and how he feels the next day.

Now, believe me, I don’t begrudge my father his pleasures at his age – good Scotch and the Golf Channel, along with a periodic poker success, are among the very few he has left. But one of the biggest contributors to Medicare’s pending financial distress is that something like 80 percent of a person’s lifetime medical bill is often spent in the last couple years of life. I’m seeing this phenomenon play out right in front of my eyes. Tests lead to other tests, which then lead to more prescriptions. Crises lead to hospitalization, and then to weeks of rehab, before the patient returns home, rarely regaining his or her former functionality.

It’s easy to see how this happens, having been in the middle of it all. Yes, the current fee-for-service payment approach can potentially encourage overly aggressive care. But, beyond that, doctors really are human beings – I’ve certainly recognized the humanity in most of the medical pros who’ve treated Dad. They want to see their patients get better, they want their patients’ families to feel hope and, I think maybe just a little bit, they may want to solve a puzzle.

So, an 87-year-old’s cholesterol starts climbing? Throw a statin into the mix. Hearing a little more fluid in his lungs? Send him in for an echocardiogram. Blood sugar’s getting higher, and you know he won’t change his eating or drinking habits – get him diabetes medication. Oh, and if his urine flow is slowing, how about a drug that may help shrink his prostate over several years.

Yes, that’s right, prostate-shrinking medication for an 87-year-old man who shows no signs of prostate cancer.

Now, I’m not arguing for an elders-onto-iceflows approach. If a treatment or medication helps make a person’s current quality of life better, it makes sense to me. Dad’s Flomax means he often gets six straight hours of sleep before he has to hit the bathroom, where he’s lucky to get two hours’ sleep without it – plus, fewer times in and out of bed means fewer opportunities for falling. But medication that may or may not have an impact on a condition that may or may not happen five years from now, in an 87-year-old man with heart disease, kidney disease and diabetes? That raises questions, to me.

So, I have two different views of the current health-care system visible from my own home right now. Neither of these presents a rational picture, with too little care available to some (well, me) and, arguably, too much being given to others (Dad). All of which makes me think, maybe it’s time to take a step back from conversations about the rationing that’s already going on and see if we can talk about rationality, instead.

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