When Nurses Speak, the DMCB Listens. This Time the Topic is Hospice & Palliative Chemotherapy: Why Can't They Co-Exist?

The Disease Management Care Blog has always appreciated the special insights that nurses have, whether it be how to treat a sick patient at 3 AM or how to tackle a particularly thorny health policy issue. When a close colleague offered to describe her travails with hospice for her dying father, the DMCB could not say no.

I am a nurse with experience in direct hands-on patient care, Medicaid, commercial health insurance and medical informatics. I also have a father that is dying from advanced cancer. The good news is that he is a Medicare enrollee and has access to hospice. That bad news is that he and probably thousands of other patients like him are being economically shut out of an important treatment option called “palliative chemotherapy.”

Hospice is generally interpreted to mean that persons have given up on futile medical treatments that are life-saving or life-prolonging. For most persons with cancer in who are in hospice, therefore, additional chemo or radiation therapy would be inappropriate. Some individuals, however, are candidates for chemotherapy that can provide immediate symptom relief, such as decreased shortness of breath or less pain. This is known as palliative chemotherapy. Medicare does allow for coverage of palliative chemo as part of hospice (you can look it up in hospice manual 40.2.4) but it has to be provided within the $150.00 day hospice per diem. My brief research found ten hospice providers in my home state of Pennsylvania that refuse to include palliative chemotherapy in any treatment plan. Most Medicare Advantage plans also won't cover palliative chemotherapy beyond the hospice payment once hospice is chosen. Last but not least, most Medigap policies don't cover it either. I made a quick call to my own insurer found that they won't cover chemo once hospice is elected.

The research is plentiful on the medical necessity of palliative chemo to reduce the burden of tumors without a goal of curing the patient. So those who elect hospice coverage are essentially being forced into foregoing this comfort option in the name of economic benefit limits of $150 per day.

How do families and patients cope with this? Although this can difficult for the patient, frustrating for family and burdensome for physicians, there appears to a unintended administrative work-around. Medicare allows individuals to elect to discontinue hospice for any reason at any time and then re-enter hospice coverage at any point in time. My read of the rules indicates it is unclear on how often someone can do this. It appears it's theoretically possible for someone to elect to discontinue the hospice benefit the day before chemo is scheduled and to elect it again the day after.

I've spoken to hospice staff about the Medicare option of dropping in and out of hospice. They stuttered and stammered, telling me I couldn't do that. They muttered about how they'd have to keep redoing the service/treatment plan, a new/updated intake assessment, and a rewrite of the physician orders each time. I suspect they and many other hospice providers don't have a written policy and procedure to follow for patients who would elect to do this. The means the staff would need to make the situation fit existing polices, which means starting all over again with each re-enrollment. The system doesn't encourage much out-of-the-box thinking.

My sister (who is also a nurse) and I know my father's prognosis is terminal and know the chemotherapy that we’ve arranged is not going to save him; however, he's had 2 sessions 3 weeks apart. Since starting this treatment, he is visibly breathing easier, has enough energy to remain awake and engaged for most of the day, his appetite picked up and he's gained some weight, is steadier on his feet, and other than some minor nausea hasn't had any significant side effects. If he wasn't doing well, we wouldn't consider continuing this. If the symptoms progress beyond being relievable or if he stops doing well we are prepared to stop the treatment.

Of course, this means my father doesn’t have access to the excellent respite care services and end of life counseling/support that are offered under hospice. Fortunately, his family has access to two nurses who can step in. Sadly, most families struggling with end-of-life care don't have this and are therefore being forced to choose between a limited hospice benefit or palliative chemotherapy.

It’s time to change this.

For more information, the DMCB found a good review article (subscription required) in JAMA here.

“Plan B” Has Begun

With word that the House is likely to take up the repeal of the health insurance industry anti-trust exemption it is now clear the Democratic leadership has begun Plan B.It is also clear that this is much more a part of a political Kabuki dance then any substantive effort at even piecemeal health care reform.The House probably has the votes to pass the repeal. The Senate does not. I doubt that

The President Says Politicans Shouldn't Read This Blog

This quote from President Obama today to Democratic Senators on how divine the what voters really want in today's media landscape:

“If we could just — excuse the press — turn off the cameras, turn off your CNN, your Fox, your MSNBC, your blogs, turn off this echo chamber … where the topic is politics. … We’ve got to get out of the echo chamber. That was a mistake I made last year — not getting out of here [Washington].”

Er, 'exsqueeze me,' but the Disease Management Care Blog humbly submits the White House and Congress would have done better with health reform if more of them had regularly checked in with this blog. It also objects to being included with the likes of CNN, Fox and MSNBC.

The DMCB is heartbroken. There is only one thing to do at times like this, and that's break into song.

The lyrics from The Maverick's Oh What A Crying Shame perfectly describe the bloggers' lament:

Mr. President, wasn't (we) good to you, didn't (we) show it....... and if we ever hurt you, we didn't know it.

Enjoy.

The Tea Baggers Just May Have a Point About Health Care.....

Back in the 1960s, the Twilight Zone regaled television viewers with fantastic stories from a place between 'science and superstition,' that lay 'between the pit of man's fears and the summit of his knowledge.' Approximately thirty years later, popular culture was introduced to an even more surreal place in the 1979 film The Black Hole. Disney's state-of-the-art special effects portrayed a space environment dominated by a distant, visually compelling and vaguely sinister hyper-gravitational spinning black hole. As testimony to their commercial success, the terms 'twilight zone' and 'black hole' remain instantaneously recognizable today, describing situations where the usual laws of gravity, time and common sense are unpredictably and variably suspended.

Since thirty years have passed, it may be time to recognize another fantastical environment, described in this Health Affairs web exclusive, titled 'Prices Don’t Drive Regional Medicare Spending Variations,' by Daniel Gottlieb, Weiping Zhou, Yunjie Song, Kathryn Gilman Andrews, Jonathan Skinner and Jason M. Sutherland.

Basically, the authors examined critical three factors in the regional variation of Medicare's per capita health spending: 1) the additional money allocated for teaching hospitals, 2) the additional money allocated for the care of the socioeconomically disadvantaged and 3) local differences in the cost of living, which influences pricing of medical services. The bottom line is that when these elements are mathematically 'backed out,' per capita variation in health care spending is only dampened sightly and is still all over the board.

How can this be?

While it's still up to readers to decide if some of the variation can be explained by local poverty and its effect on hospital quality, the Disease Management Care Blog is still struck by Medicare's surreal distortion of the time-space fabric of the health care market universe and how easily the viewer can be sucked into this logic-defying time-space of contractors, DRGs, RVUs, ineffective cost controls, inefficient mainframe-style central planning, political zg zagging, cumbersome denials, attacking the inevitable outliers, provider gaming and a sprawling $911 billion bureaucracy.

There is plenty of blame to go around for this dysfunction and, let's face it, Medicare and Medicaid have led to unparalleled health benefits for the poor and elderly. Yet, persons looking into the distorted market of two to threefold cost differentials with no discernible impact on quality must be puzzled by how the black hole can bend a line of reasoning toward greater government involvement.

The DMCB not suggesting the CMS be cancelled, any more than it can cancel black holes: both are embedded in our time-space continuum.

But it also cautions against tut-tutting those wacky cranky Tea Baggers and their common sense look at 'government style health care.' The cognitive dissonance of 'getting government out of Medicare' belies a deeper reality: once you step outside the Twilight Zone and away from the Black Hole, it's pretty obvious that government's management of the program is not of this earth.

A Top Ten List of Medical Uses for the iPad: An Alternate Point of View

The Disease Management Care Blog is not surprised by the fawning adulation of the health information technology (HIT) minions over the illusory potential of Apple's iPad to 'transform' clinical practice. For example, this CIO posting examines its potential to 'revolutionize' healthcare, while this one says it can become the 'No. 1 tablet.' Toss in jargon like 'point of care tool' and 'personal health device' and add some lusty excitment over applications both real and imagined, and it's easy to succumb to the seduction of touching screens instead of patients, managing data instead of diagnoses and being digital instead of doctors. Never mind that a consistent link between electronic record use and health care quality remains as elusive as the CFO-like DMCB spouse's willingness to approve the expense of a dinner in the Circular Dining Room. It's still cool! It's still neat!

Of course, the iPad hoopla (including the Moses themed cover of The Economist) has only fueled that favorite of internet-media-bloggy punditry, the 'Top 10' list. For example, the Top 10 What You Need to Know and... well the list goes on, including a Top 10 list of Top 10 lists. Within the healthcare arena, the readers of KevinMD's blog were subjected to a dose of unreferenced and wholly speculative Top 10 healthcare iPadmania.

Not to be outdone, the DMCB - based on past experience with electronic records, their starry-eyed administrative support teams, questionable outcomes and the cold hard reality of actually taking care of patients - is pleased to offer its own Top 10 list of potential iPad uses in typical practice involving busy doctors and sick patients in a place unknown to many of the electronic record nobility. That place is called 'the real world':

1. Hot Beverage Insulator: The DMCB used to perch a prescription pad on top of its coffee cup to help retain heat between seeing patients. The disadvantage is that, as a result, the liquid often tasted from cardboard. The iPad case promises to be far more inert.

2. Instrument Tray: Office assistants can lay out scapels, scissors, swabs and other doo-dads on the screen for easy access. Compared to the price of medical equipment such as trays etc. in general, the DMCB suspects the iPad will be quite cost competitive.

3. Lunch! The DMCB learned from a wise colleague that no matter where you are in the day, lunch is always on the way. The iPad will be a boon to any physician who needs to place a lunch order during the tedium of patient care.

4. Tricorder: Remember Star Trek's Dr. McCoy and his multi-purpose diagnostic tricorder? If physicians are confident nothing is wrong with the otherwise dubious patient, point the iPad (or better yet, hold it up against the patient's body), peer intently at the screen and announce there is 'NOTHING WRONG.' Your patients will thank you!

5. Light Source: Surely the iPad's screen can be made to go white. When it does, aim that puppy at the patient and no mole, no body fold and no body cavity will not be amply and completely illuminated. All that's needed is a way to affix it to the doctor's forehead a.k.a. 'hands free mode.'

6. Timer: Most physicians and their administrators understand down to the second just how much time should be allocated to each patient to maximize practice income. The iPad will calculate current billings, cash flows, visit intensity and room-to-room pace to optimize maximum physician efficiency. When 30 seconds are left for that Level 4 visit, count on your iPad to buzz annoyingly.

7. Meaningful Use Standards: Like you, the DMCB doesn't really grasp CMS' Meaningful Use Standards' that will be linked to physician payment for EHR use either, but it thinks having an iPad will magically make it happen. Turn that baby on and wait for a check from Uncle Sam

8. Door Stop: Nothing annoys patients more than being put into a room ahead of time and being left to languish while the doctor is behind schedule. Not a problem, the iPad can be used to prop the door open so that patients can see out into the hallway.

9. Pass Time: Or, if patients prefer, they can leave the door closed and curl up with the iPad edu-tainment device, accessing functions like soothing music or really gross pictures of patients afflicted with weird medical diseases.

10. Cool and Cheap (relatively at least): OK, let's assume patients think you should use an electronic record, but you don't want to shell out the tens of thousands of dollars. Pretend to use an iPad during your patient encounters and you will give the appearance of being cool, connected and networked, even though what you're really doing is surfing and checking the Disease Management Care Blog.

('’)

More on Worksite Wellness Programs and Health Care Reform

While pundits and bloggers continue to speculate on just how the House and Senate are going to get two competing health care bills passed, the Disease Management Care Blog has continued to grapple with the issue of employer wellness programs. There's this 'snarky' (a quote taken from one of the 43 comments) piece over at The Health Care Blog as well as this posting over at the Health Affairs Blog. The latter prompted a well-written response by Alan Balch, which can be found here.

Basically, the reform bill passed by the Senate would permit employers to increase the value of any worksite incentives for wellness program participation from 20% to 30% of premium. Critics charge that a large financial incentive could be used to underwrite the premium costs of persons that have already attained wellness goals, effectively shutting the door on affordable insurance for persons with chronic illness.

There are a variety of legal, regulatory, policy and real world reasons why that cannot happen, many of which are addressed in the blog postings that are linked above. However, in thinking about this, it all comes down to a paraphrased quote from the opinion page of the Wall Street Journal several weeks back: it's up to society to not only struggle against being ensnared by its vices, but by its virtues also.

If we worship human life, how should we ask our young persons to go to war? If we treasure the rule of law, should it be applied all the time every time? Those off-topic and incendiary issues are best left for other bloggers, but it's an interesting concept when it comes to heath care. If there is a lack of scientific evidence that employee premium differentials are safe all the time every time and that employers could somehow camouflage cherry-picking underwriting as a wellness program, is that reason enough to forbid the practice altogether?

The DMCB doesn't think that's reasonable and that we have the ability to develop reasonable policies and other regulations to adequately address that improbability. It hopes that if a version of health reform passes, that the Senate provision on worksite wellness survives.

soup and the missing muse

I made three soups in January.

Red lentil and carrot from Cooking with Foods That Fight Cancer

Broccoli cheddar from Looneyspoons: Low-fat food made fun!

Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).

If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the The Eat-Clean Diet Cookbook: Great-Tasting Recipes That Keep You Lean!
A friend gave this one to me. I recall it being time consuming but delicious..

I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.

In fact, I can't seem to bring myself to write much these days.

Maybe, later this week, as I recover from chemo.

Tomorrow is Groundhog Day. And the four year anniversary of my mastectomy.