The British press has been hurling around various accusations about the use and misuse of the Liverpool Care Pathway for the Dying Patient ("LCP") for a couple of years now. The LCP is a UK care pathway covering palliative care and nursing options for patients at the end of life. It includes prompts for management of a wide range of end-of-life symptoms; crucially for the debate, it provides for cessation of artificial nutrition and hydration for some patients. The latest round of adverse coverage is largely based on findings of an audit undertaken by the LCP's developer; the audit found that in 44% percent of cases in which a decision was made to place a patient on the LCP, there was no record of a discussion with the patient about that decision; and that one-third of patients' families were never given an informational leaflet describing the LCP. Additionally, there are accusations that hospitals are putting people on the LCP who shouldn't be, perhaps in order to secure financial rewards that flow to facilities that reach targets for LCP use. These allegations, combined with earlier alarmist claims that the LCP was being used to "euthanize" scores of thousands of patients who weren't dying, resulted last month in the government's announcing the launch of an independent investigation into the use of the LCP.
Since that announcement, though, an additional accusation has been leveled in the Daily Mail (which has been pressing the LCP issue all along). Citing this anonymous article from BMJ about withdrawing feeding from newborns, the Daily Mail claimed that babies were being put on the LCP. The trouble is, the BMJ article was written by a physician not based in the UK, and not using the LCP. Of course, that didn't prevent the Daily Mail piece from being picked up here in the states by, for example, Wesley Smith, whose sensitive treatment of the subject, entitled "Dehydrating Disabled Babies in UK Hospitals" ran in the National Review Online. "This is what happens when a country allows bureaucrats to control healthcare," he intoned--and then drew the "parallel" to Obamacare. Similar discussion could be found on numerous right-wing websites. Will any of those sites revise their comments now that their foundation in the Daily Mail piece has been exposed as fact-free? I'm not holding my breath.
At this point, I hope the independent investigation is thorough and that it makes serious recommendations for addressing all of these concerns. A tough review with real suggestions for training and reform might well save the LCP, and the LCP is well worth saving. The protocol has won plaudits in palliative care journals, was well reviewed in the Royal College of Physicians original National Care of the Dying audit, has garnered the support of palliative care nurses, and undoubtedly eases the deaths of many tens of thousands annually. But there seems also to be little doubt that it has sometimes been carelessly implemented, or implemented with insufficient discussion and explanation.
One suggestion--indeed, a plea--for anyone who wants to comment on the issue, though: Read the actual pathway. That will have the salutary effect of enabling you to distinguish problems that result from following it from those that result from not following it.
Wednesday, December 12, 2012
Sunday, November 4, 2012
Medicare coverage litigation--Jimmo v. Sebelius
I'm a few days late covering this vitally important settlement of litigation between patient groups and Medicare, but I thought I'd give a small taste of what it's really about.
My mother-in-law passed away in January of ALS (Lou Gherig's disease). That disease, among other things, gradually eliminates your ability to control your limbs, while leaving you with full sensation. In other words (to take an easily understood example), you can be lying in your bed, wishing you could roll over because your arm is in an uncomfortable position, but not be able to roll yourself over. All night.
Physical therapy, you can easily imagine, was a great relief to my mother-in-law. It's a huge benefit to have your body moved around by someone else, in the ways you'd like to move it yourself, if you could: stretching, twisting, opening up. Even just 20 minutes of externally-supplied mobility each day goes a long way toward making up for the immobility the ALS patient faces the other 23 hours and 40 minutes of each day.
But the Massachusetts entity that holds the contract to administer Medicare (along with very many other state contract-holders) decided that Medicare should not pay for my mother-in-law's physical therapy, because it did not stand any chance of curing her.
At some level, of course, one can understand a cost-controlling rule that says, "We're not paying for things that don't work." It was such a rule that Massachusetts's and other states's intermediaries were attempting to follow. But it's simply false to think that anything that doesn't cure you doesn't "work." Think of physical therapy, or nursing attention, for example: many who are chronically or terminally ill can benefit from those kinds of interventions, even if they hold out no prospect for cure.
And that's what the government agreed to in its settlement of Jimmo v. Sebelius. Manuals that guide the decision-making of contractors who administer Medicare at the state level will no longer permit denials of payment to therapies simply on grounds that they don't cure. They'll now explicitly permit payments for treatments that help maintain the patient's current condition or that prevent further deterioration. Mind you, the holding isn't as generous as a rule that might permit payment for every treatment that keeps a patient comfortable, or that reduces a patient's suffering; but it's a big improvement over the "we only pay for cures" position that a number of Medicare intermediaries had been taking.
My mother-in-law offered testimony in this case. Luckily, during the pendency of the case, my father-in-law had sufficient private funds to pay for the therapy she needed to keep herself comfortable during the months of her ALS decline. But she always knew that the Massachusetts Medicare intermediary's position just wasn't right; that it couldn't be the case that national health insurance wouldn't pay for care that met people's basic human needs, even if it wouldn't cure them.
So now, after this settlement, Medicare will pay for those needs. That will certainly drive up the cost of Medicare. But I don't mind. I don't mind paying the extra taxes necessary to ensure that patients, like my mother-in-law, who are paralyzed with ALS, will be able to get their legs manipulated, or their arms massaged, if that's what will bring them comfort.
Mary would be very pleased that her lawsuit was settled favorably to patients. She and her husband didn't need the money; to them, it was a question of principle. But this settlement brings real relief to thousands of people who have no other means of paying for the care they need.
It's a big deal. I offer now a toast, to our now-departed litigant, Mary: You won. You're gone, and can't enjoy the victory, but that doesn't matter. You weren't fundamentally fighting this battle for yourself. And many thousands will benefit from the lawsuit you supported.
My mother-in-law passed away in January of ALS (Lou Gherig's disease). That disease, among other things, gradually eliminates your ability to control your limbs, while leaving you with full sensation. In other words (to take an easily understood example), you can be lying in your bed, wishing you could roll over because your arm is in an uncomfortable position, but not be able to roll yourself over. All night.
Physical therapy, you can easily imagine, was a great relief to my mother-in-law. It's a huge benefit to have your body moved around by someone else, in the ways you'd like to move it yourself, if you could: stretching, twisting, opening up. Even just 20 minutes of externally-supplied mobility each day goes a long way toward making up for the immobility the ALS patient faces the other 23 hours and 40 minutes of each day.
But the Massachusetts entity that holds the contract to administer Medicare (along with very many other state contract-holders) decided that Medicare should not pay for my mother-in-law's physical therapy, because it did not stand any chance of curing her.
At some level, of course, one can understand a cost-controlling rule that says, "We're not paying for things that don't work." It was such a rule that Massachusetts's and other states's intermediaries were attempting to follow. But it's simply false to think that anything that doesn't cure you doesn't "work." Think of physical therapy, or nursing attention, for example: many who are chronically or terminally ill can benefit from those kinds of interventions, even if they hold out no prospect for cure.
And that's what the government agreed to in its settlement of Jimmo v. Sebelius. Manuals that guide the decision-making of contractors who administer Medicare at the state level will no longer permit denials of payment to therapies simply on grounds that they don't cure. They'll now explicitly permit payments for treatments that help maintain the patient's current condition or that prevent further deterioration. Mind you, the holding isn't as generous as a rule that might permit payment for every treatment that keeps a patient comfortable, or that reduces a patient's suffering; but it's a big improvement over the "we only pay for cures" position that a number of Medicare intermediaries had been taking.
My mother-in-law offered testimony in this case. Luckily, during the pendency of the case, my father-in-law had sufficient private funds to pay for the therapy she needed to keep herself comfortable during the months of her ALS decline. But she always knew that the Massachusetts Medicare intermediary's position just wasn't right; that it couldn't be the case that national health insurance wouldn't pay for care that met people's basic human needs, even if it wouldn't cure them.
So now, after this settlement, Medicare will pay for those needs. That will certainly drive up the cost of Medicare. But I don't mind. I don't mind paying the extra taxes necessary to ensure that patients, like my mother-in-law, who are paralyzed with ALS, will be able to get their legs manipulated, or their arms massaged, if that's what will bring them comfort.
Mary would be very pleased that her lawsuit was settled favorably to patients. She and her husband didn't need the money; to them, it was a question of principle. But this settlement brings real relief to thousands of people who have no other means of paying for the care they need.
It's a big deal. I offer now a toast, to our now-departed litigant, Mary: You won. You're gone, and can't enjoy the victory, but that doesn't matter. You weren't fundamentally fighting this battle for yourself. And many thousands will benefit from the lawsuit you supported.
Tuesday, October 16, 2012
The Lyric and the Narrative
If you are interested in medical humanities, please go read Cat Belling's lovely piece in BMJ Medical Humanties. She argues that medical humanities has been too closely equated with narrative, and that medical humanists would do well to attend to the non-narrative elements of literature, and to their value for understanding medicine.
Friday, October 12, 2012
Friday Frivolity: Altruism at the Deathbed Edition
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Note: Viewer discretion advised! This video contains strong language! Or at least, strong language being mouthed very clearly, though silently.
Note: Viewer discretion advised! This video contains strong language! Or at least, strong language being mouthed very clearly, though silently.
Presidential Commission Report on Genomic Privacy
The Presidential Commission for the Study of Bioethical Issues has released its report, "Privacy and Progress in Whole Genome Sequencing." The full text of the report, along with the accompanying press release, is available here. A Google-roundup of news coverage of the release is here.
I looked through the report last night, and am left with the general view that it's a necessary and useful prod to action. The report points out huge gaps in our legal preparedness for the $1000 genome. For example, federal law prohibits health insurers and employers from discriminating against insureds on the basis of genetic information, but life insurers and long-term care insurers aren't covered. Another: only about half of the states have laws in place prohibiting genetic sequencing of persons without their consent.
The report calls for states to adopt "robust" consent standards, though it is skeptical about the workability of rigorous re-consenting of subjects for new research done on their previously-obtained genetic information. It calls for uniform rules governing access to genetic data, and for policies requiring researchers to make clear to subjects whether and in what circumstances incidental findings will be disclosed to them. And it calls for strong standards not only of privacy-protection, but of data-security protection.
It's hard to blame the Commission for remaining at a fairly high level of generality in their recommendations. They were looking at genetic screening by public and private bodies, of persons and of tissue samples, for clinical and research purposes. When you have to talk about everything, it's hard to say much of anything. On the whole, the Commission is to be applauded for bringing policy-makers' attention to, and offering sensible discussions and analysis of, problems associated with genome sequencing for which we are legally unprepared.
More when I've had more time for reading!
I looked through the report last night, and am left with the general view that it's a necessary and useful prod to action. The report points out huge gaps in our legal preparedness for the $1000 genome. For example, federal law prohibits health insurers and employers from discriminating against insureds on the basis of genetic information, but life insurers and long-term care insurers aren't covered. Another: only about half of the states have laws in place prohibiting genetic sequencing of persons without their consent.
The report calls for states to adopt "robust" consent standards, though it is skeptical about the workability of rigorous re-consenting of subjects for new research done on their previously-obtained genetic information. It calls for uniform rules governing access to genetic data, and for policies requiring researchers to make clear to subjects whether and in what circumstances incidental findings will be disclosed to them. And it calls for strong standards not only of privacy-protection, but of data-security protection.
It's hard to blame the Commission for remaining at a fairly high level of generality in their recommendations. They were looking at genetic screening by public and private bodies, of persons and of tissue samples, for clinical and research purposes. When you have to talk about everything, it's hard to say much of anything. On the whole, the Commission is to be applauded for bringing policy-makers' attention to, and offering sensible discussions and analysis of, problems associated with genome sequencing for which we are legally unprepared.
More when I've had more time for reading!
Science Humor, Chocolate-Faced Nobel Winners Edition
This article from New England Journal of Medicine conclusively proves, sorta, that countries that consume more chocolate per capita produce more Nobel Prize winners. Enjoy!
Shaking the Family Tree, Neanderthal Edition
The revelations from genetics about the past of our species continue to amaze me. This study from PLOS Genetics, for example, reveals evidence that supports the hypothesis that the subset of humans who left Africa may have continued to mate with Neanderthals until as recently as 47,000 years ago. There's more detail about related studies in this article from Science News--including mention of the fact that Neanderthal DNA is even more prevalent in Asian and South American populations than in European.
Monday, October 8, 2012
Massachusetts and Physician-Assisted Suicide
Having recently emerged from a multi-month blogging hiatus, I feel guilty for not having addressed the pending Massachusetts physician-assisted suicide initiative.
This November, Massachusetts citizens will vote on an initiative to establish an Oregon-like regime of physician assisted suicide. The full text of the initiative is here; the Oregon Death With Dignity Act, on which the Massachusetts initiative is very closely modeled, is here. The proposed law would permit competent, terminally ill patients to receive from their physicians a prescribed lethal dose of medicine with which to end their own lives.
I was against physician-assisted suicide (PAS) before I was for it. I feared that PAS would be offered to poor people, poorly-educated people, and minorities, in lieu of more difficult- and expensive-to-provide high-quality end-of-life care. Others (not I) worried about a slippery slope from assisted suicide (where the patient kills herself) to euthanasia (where the doctor gives, for example, an injection to a patient who wants it), and thence to involuntary euthanasia (where a doctor gives an injection to a patient who doesn't want it, or whose desire to die is not well-documented). Others worried that the availability of PAS would undermine incentives to improve end-of-life care and palliative medicine. And still others (again not I) worried about an assisted-suicide regime giving rise to a "duty to die;" that is, a sense among elders that they really ought to commit suicide rather than inconvenience their children, or cost them too much money.
What I feared would happen has not happened. If you look at Oregon's annual reports about who uses their assisted suicide program, what you find is that most are white, well-educated urban dwellers, already in home hospice care. Minorities are barely involved with the program, let alone being disproportionately its "victims." As I say to my students, it appears that assisted suicide is for control-freaks. No case of euthanasia, voluntary or involuntary, has been established in either Oregon or Washington, so that slope seems not to be so slippery. And Oregonian hospice care and palliative care has not suffered after the introduction of PAS; indeed, it has prospered. It remains a vexed question, though, whether end-of-life care in Oregon is good because of pressure exerted by the existence of the assisted suicide option, or whether, alternatively, assisted suicide performs well in Oregon because its end-of-life care is so unusually good; or, indeed, or whether both things are true.
Have we slipped down the slope toward a duty to die? I see no evidence.
My own position on physician-assisted suicide is completely open to revision in light of empirical data. Can someone show that people who don't want to die are being pushed into assisted suicide? I'll count that as important evidence against PAS. Can someone show that PAS programs enhance the quality of end-of-life care? That'll count in its favor. Can someone show that medicine is completely able--not just in ideal circumstances, but on the ground in real clinical settings--to control the suffering of patients at the end of life? Then I'd drop my support for physician-assisted suicide altogether.
One thing I won't do, though, is stop calling Physician Assisted Suicide by that name. Many who lobby in favor of PAS want to jettison the negative associations of the word "suicide," and point out that we are, at least for the moment, talking about people who are dying anyway, and who would, in many cases, prefer not to. The word "suicide," they argue, doesn't fit the cases they're talking about. But to my perhaps-overly-legal mind, the word "suicide" simply applies to people who are killing themselves, even if they're killing themselves because they're dying. Other phrases (Aid in Dying, for example) are inexact, in that they cover not only PAS but also voluntary active euthanasia. Words mean what they mean, usually; the battle, in my view, should not be about claiming that the terminally ill aren't really committing suicide, but rather about the deeper point that some suicides are morally, even religiously, permissible. Think about the harm of death: the suffering attending the dying process, the loss of integrity and control, the loss of a future you'd like to live to experience. The person who rationally elects PAS avoids the suffering, maintains and even establishes integrity and control, and has no desirable future to lose.
If I were a Massachusetts resident, I'd vote in favor of the initiative.
This November, Massachusetts citizens will vote on an initiative to establish an Oregon-like regime of physician assisted suicide. The full text of the initiative is here; the Oregon Death With Dignity Act, on which the Massachusetts initiative is very closely modeled, is here. The proposed law would permit competent, terminally ill patients to receive from their physicians a prescribed lethal dose of medicine with which to end their own lives.
I was against physician-assisted suicide (PAS) before I was for it. I feared that PAS would be offered to poor people, poorly-educated people, and minorities, in lieu of more difficult- and expensive-to-provide high-quality end-of-life care. Others (not I) worried about a slippery slope from assisted suicide (where the patient kills herself) to euthanasia (where the doctor gives, for example, an injection to a patient who wants it), and thence to involuntary euthanasia (where a doctor gives an injection to a patient who doesn't want it, or whose desire to die is not well-documented). Others worried that the availability of PAS would undermine incentives to improve end-of-life care and palliative medicine. And still others (again not I) worried about an assisted-suicide regime giving rise to a "duty to die;" that is, a sense among elders that they really ought to commit suicide rather than inconvenience their children, or cost them too much money.
What I feared would happen has not happened. If you look at Oregon's annual reports about who uses their assisted suicide program, what you find is that most are white, well-educated urban dwellers, already in home hospice care. Minorities are barely involved with the program, let alone being disproportionately its "victims." As I say to my students, it appears that assisted suicide is for control-freaks. No case of euthanasia, voluntary or involuntary, has been established in either Oregon or Washington, so that slope seems not to be so slippery. And Oregonian hospice care and palliative care has not suffered after the introduction of PAS; indeed, it has prospered. It remains a vexed question, though, whether end-of-life care in Oregon is good because of pressure exerted by the existence of the assisted suicide option, or whether, alternatively, assisted suicide performs well in Oregon because its end-of-life care is so unusually good; or, indeed, or whether both things are true.
Have we slipped down the slope toward a duty to die? I see no evidence.
My own position on physician-assisted suicide is completely open to revision in light of empirical data. Can someone show that people who don't want to die are being pushed into assisted suicide? I'll count that as important evidence against PAS. Can someone show that PAS programs enhance the quality of end-of-life care? That'll count in its favor. Can someone show that medicine is completely able--not just in ideal circumstances, but on the ground in real clinical settings--to control the suffering of patients at the end of life? Then I'd drop my support for physician-assisted suicide altogether.
One thing I won't do, though, is stop calling Physician Assisted Suicide by that name. Many who lobby in favor of PAS want to jettison the negative associations of the word "suicide," and point out that we are, at least for the moment, talking about people who are dying anyway, and who would, in many cases, prefer not to. The word "suicide," they argue, doesn't fit the cases they're talking about. But to my perhaps-overly-legal mind, the word "suicide" simply applies to people who are killing themselves, even if they're killing themselves because they're dying. Other phrases (Aid in Dying, for example) are inexact, in that they cover not only PAS but also voluntary active euthanasia. Words mean what they mean, usually; the battle, in my view, should not be about claiming that the terminally ill aren't really committing suicide, but rather about the deeper point that some suicides are morally, even religiously, permissible. Think about the harm of death: the suffering attending the dying process, the loss of integrity and control, the loss of a future you'd like to live to experience. The person who rationally elects PAS avoids the suffering, maintains and even establishes integrity and control, and has no desirable future to lose.
If I were a Massachusetts resident, I'd vote in favor of the initiative.
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