Friday, February 10, 2017

The Affordable Care Act: It will not depart the same way it entered.

By Kathy Greenlee, JD
I recently learned the Irish superstition that you should exit by the same door through which you entered. The Affordable Care Act will most likely not have that option. The door it entered is closed.
I also recently revisited the unusual circumstances that allowed the ACA to become law. In early 2010, the Democrats held a 60-vote majority in the United States Senate. Then, in August, Massachusetts Senator Ted Kennedy died. In the election for his successor, Massachusetts elected Scott Brown, a Republican. Between the November election and Scott Brown’s swearing in, the Senate approved the ACA. When Senator Brown took office, the Democrats lost their super majority. The House had already passed the law, so they quickly moved to pass the Senate bill.
Having 60 votes in the United States Senate is a big deal. The Senate rules are such that the chamber requires a supermajority – 60 votes – to cut off debate and take a bill to the floor for vote.

Law, Regulations and Money
The ACA is anchored by three things: the law, regulations and money. Currently, the Republicans have a majority but not a supermajority. They don’t have 60 votes to pull the law off the books. They do, however, have enough votes to control the money. The ACA will be made ineffective and inoperable because the funds needed to make the law work will be removed. Money supports the subsidies for qualified people who purchase insurance through the exchanges. Federal money is used to match state money for Medicaid expansion and long term care rebalancing incentives (incentives for states to purchase community rather than institutional services for long term care). It takes money to close the Medicare prescription drug plan donut hole.
The first and most active battles in Congress will focus on money. And that battle has begun. The current 2017 federal fiscal year began on October 1, 2016. But, Congress has not passed a budget for this current year. Congress intends to use the current budget to gut the provisions of the ACA that are budget related. Then, immediately thereafter, the Trump administration will present Congress with a proposed 2018 budget and Congress will begin to work that budget this summer. The ACA will likely remain on the books, but won’t be operable as a comprehensive law. The non-budgetary sections will remain but will be largely inert.
While Congress assures the money dries up, the Trump Administration can begin the process of rolling back the thousands of pages of regulations that support the implementation of the law. Repealing regulations is time and labor intensive. ACA regulation repeal will be a steady slog likely to drag on through most of 2017 and into 2018. Regulations are behemoths.

Democratic Allies Needed
As you watch events unfold, keep in mind the three anchors I mentioned earlier: the money, the regulations and the law. The Republicans in Congress and in the White House will drive the budget and the regulations. They won’t need Democratic support to do so. But, to pull the remnants of the law and to pass a new law, Senate Republicans will need to find Democratic allies to help them get the 60 votes they need to cut off debate and pass legislation. The Democrats had 60 votes when the ACA passed; the Republicans currently do not. The 60-vote door will have to be unlocked in order to make new law.
Next up: Let’s talk in more detail about an ACA budget hot topic: Medicaid.

Kathy Greenlee joined the Center’s staff as Vice President for Health Policy and Aging in November 2016 after serving the past seven years as Assistant Secretary for Aging in the U.S. Department of Health and Human Services.


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Monday, January 23, 2017

Chronic Pain and the Opioid Epidemic: Wicked Issues Have No Simple Solutions

Written By Myra Christopher
My mom was a steel magnolia (i.e., southern and perfectly charming), but she had a steel rod up her back. After her first surgery for stomach cancer at age 53, she refused pain medication because she said that she “could take it.” She was young and strong and committed to “beating cancer.” After nearly two years of chemotherapy, radiation and two more surgeries, the cancer won. Eventually, I watched her beg nurses to give her “a shot” minutes before another was scheduled and be told they were sorry but she would have to wait. I could tell by the expressions on their faces they truly were sorry.

Calls of Desperation

When the Center for Practical Bioethics began more than 30 years ago, I frequently had calls and letters from other family members telling me that an elderly loved one was dying in terrible pain and that the care team refused to give pain medication more often than scheduled or to increase the dose because they were told their loved one might become addicted and/or because a higher dose of morphine might affect the patient’s respiration and hasten death.
·      ICU nurses regularly reported calling physicians and pleading for orders to increase pain medication only to be told, “Absolutely no and do not call again!”
·      Physicians told me about patients who refused medication and suffered unnecessarily because they believed their pain was punishment from God and that their pain was “redemptive.”
·      A case I will never forget involved a father who coaxed his son dying of bone cancer to “be a man” and refuse the pain meds his doctor had prescribed. The father, who adored his child and was deeply grieving his impending death, told me, “At least he will never be a junkie.”
·      In one study of nursing home residents with cancer pain, nearly a third reported receiving nothing for their pain – not even Tylenol.

Progress and Problems

Efforts to address the under-treatment of pain in the United States led to more abundant prescribing of opioids and reduced suffering. At the same time, the rate of addiction rose dramatically, particularly addiction to pain medications, specifically opioids. Thousands of unintended deaths associated with these powerful drugs led to a well-organized national campaign to reduce their being prescribed. 
Let me be clear, in some cases opioids have been prescribed too freely and physicians need much more training about when and how to prescribe them. I cringe when I hear about the dentist who prescribed a 30-day supply of OxyContin for a teenager who had her wisdom teeth extracted. My heart breaks when I hear about the young man who died of an opioid overdose a year after being given a prescription for pain meds after spraining his ankle in a football game and the young mother who was given Percocet after a caesarian birth, used them to help with the stress of a new baby and became addicted to them. These are tragic situations. 

Unintended Consequences

The opioid epidemic is a wicked problem, and it must be addressed. However, I believe that current efforts that focus almost exclusively on reducing opioid prescribing do not address the complexity of this problem and will have serious unintended consequences for those who struggle to live with chronic pain and even, possibly, those who are dying. Those were the concerns that caused me to speak out against the CDC Guideline for Opioid Prescribing for Chronic Pain published last year, which is, in my opinion, primarily an attempt to contain the opioid epidemic – NOT an effort to improve chronic pain care. 
In recent months, stories have begun to emerge from people who live with chronic pain being told that their physician will no longer prescribe opioids or that their pharmacy didn’t have an adequate supply of opioids to fill their prescription. Last week, two things happened that caused me to write this blog.
First, Judith Paice, PhD, RN, and Director of the Cancer Pain Program at the Feinberg School of Medicine at Northwestern University, wrote the following email to me which I share with her permission:
This has been a horrible month for trying to manage pain. January is always “prior authorization” month, meaning I have to call and fight the insurance companies to get medications approved – working in oncology has always provided a slight advantage in that with some extra documentation, peer-to-peer review and conversations with medical directors, I could usually get the medication approved. Not this year. I could not get a patient with mouth sores and metastatic breast cancer a fentanyl patch. And an HIV+ hemophiliac who has been on OxyContin for 8 or 9 years was denied access despite receiving good relief without any aberrant behavior. Even long-acting morphine is being denied. And I have PCPs calling me to prescribe opioids for their patients “because the CDC guidelines prohibit them from doing so” (not true, but they are frightened).
Thank you and all on this email for all you do. We simply cannot return to our previous practice of withholding opioids except for the dying.
Second, I received a call from Jonathan, one of our PAINS Project Citizen/Leaders, a group of 50 people who live with or care for a family member who lives with chronic pain. Jonathan called to tell me that his insurance provider had refused payment for his pain meds which cost $3,500 per month.   
Jonathan is one among many in his family who was born with HbS beta thalassemia, a rare form of Sickle Cell Disease (SCD). He is in his mid-to late forties and very close to his family, which owns and operates a home remodeling business. Currently, there are four generations in his family living with SCD, and Jonathan appears to me to be the patriarch of his clan. He is a tall, thin, handsome young man who is readily memorable for his boyish smile, the mischief in his big brown eyes, and his commitment to helping others. He limps; most often he wears a boot on his right foot, and sometimes he needs to walk with a cane. The cold weather exacerbates his pain, and his limp is worse in the winter months. He describes the pain in his joints like a “giant toothache” in whichever joint (or joints) is affected by platelets taking their revenge.
Access to and reimbursement for Jonathan’s pain medications will NOT solve his problems associated with Sickle Cell Disease. That requires a comprehensive chronic disease management program, including integrative pain care that includes opioids. Like most chronic pain sufferers, Jonathan’s situation is complex. It cannot be resolved with just an opioid prescription, but the meds help him to function.

A Wicked Problem

Simple solutions will not solve the opioid epidemic or the under-treatment of pain – two critically important public health issues confronting our country. Both are wicked issues.
In 2007, the Australian Public Service (APS) published a report on addressing “wicked” social policy issues. In a letter at the beginning of the report, then APS Commissioner Lynelle Briggs wrote,
“The Australian Public Service (APS) is increasingly being tasked with solving very complex policy problems. Some of these policy issues are so complex they have been called ‘wicked’ problems. The term ‘wicked’ in this context is used, not in the sense of evil, but rather as an issue highly resistant to resolution. Successfully solving or at least managing these wicked policy problems requires a reassessment of some of the traditional ways of working and solving problems in the APS. They challenge our governance structures, our skills-base and our organizational capacity. It is important, as a first step, that wicked problems be recognized as such. Successfully tackling wicked problems requires a broad recognition and understanding, including from governments and Ministers, that there are no quick fixes and simple solutions.”

We simply cannot allow people like Jonathan and the nearly 30 million Americans living with “high impact chronic pain” – pain that is disabling or those who are seriously ill and dying – to become collateral damage from policy efforts to contain the opioid epidemic. We need access to comprehensive pain care for all those who live with chronic pain and addiction.  

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Wednesday, January 11, 2017

Bishop Tutu’s Plea Prompts Personal Meditation on Assisted Suicide

By Myra Christopher
I worked late Tuesday night and was listening to NPR as I always do during my short commute home when I heard that, in celebration of his 85th birthday, Bishop Desmond Tutu announced that he supports physician-assisted suicide and “prays that politicians, lawmakers and religious leaders have the courage to support the choices that terminally ill citizens make in departing Mother Earth with dignity and love.” I was stunned.
At age 30, I decided to spend my life working to improve end-of-life care and that the way that I would do that would be by “doing ethics.” I would spend my life arguing that the seriously ill and dying have an inherent right to a “dignified death.” This year I will be 70, and I have had a long and interesting career. Over the past 40 years, the issues of euthanasia and physician-assisted suicide have been what I considered as recurring distractions from what I have thought to be really important, i.e., advancing palliative care. Bishop Tutu’s comments, however, cannot and should not be considered by any one as simply a “distraction.” I believe they are a “game-changer.”
In the late 1990s, I directed Community-State Partnerships to Improve End-of-Life Care, an $11.25m Robert Wood Johnson (RWJ) Foundation grant award program. At about the same time, Jack Kevorkian – or Dr. Death as he came to be known – came on to the public scene. At a national conference, I was asked what I thought of Dr. Kevorkian, and I said without hesitating that I thought he was a murderer and should be imprisoned.

Envisioning Other Options
After the conference, a communication officer from the RWJ Foundation asked me if I knew the data regarding public views on physician-assisted suicide. I said that, of course, I did – 50% of Americans were for it and 50% were against it. She said, “You realize that when you made the statement you did that half the audience turned you off,” and then asked me if I could imagine saying something like, “Physician-assisted suicide is something good people disagree about, but what we can all agree upon is that we must do a better job of caring for those who are seriously ill and dying so that they don’t see suicide as their only option.”
That statement made good sense to me and has served me well over the years. To clarify my personal view, I always add that I am against the “legalization” of assisted suicide but would NEVER pass moral judgment on a caring committed physician or loving family member who assisted a patient or loved one to die. Furthermore, I know that it happens all over the United States every day. Years ago, an article titled “It’s Over Debbie” was published in JAMA (Journal of the American Medical Society) in which a resident anonymously reported having euthanized a young woman in agonal pain dying of a terminal gynecological cancer. I got four calls, two of them from healthcare professionals in Kansas City, telling me that the caller was sure the event had occurred in their own hospital. 
Personal Choice and the Slippery Slope
I have shared in private conversations, however, that in certain situations, I would personally choose to end my own life and expect others to help me to do so if I were incapable of acting on my own behalf. I recognize the logical inconsistency of my thoughts and have felt hypocritical from time to time. But because so many people in the U.S. are not insured and do not have access to healthcare, especially good end-of-life care, and because we know without question that certain populations, e.g., people of color and those in lower socio-economic situations, receive less care, worse care and have poorer outcomes, I have felt that legalizing physician-assisted suicide could potentially make these people even more vulnerable…that it was just too risky. Even though the data from Oregon, the first state in the U.S. to legalize physician-assisted suicide, has not proven that to be true, my fear has been the “slippery slope,” i.e., if we allow competent people to make this choice, are we then far from deciding the same should be true for those who cannot make decisions for themselves. I still do not believe that concern is unfounded.
The Netherlands, the first country to legalize euthanasia, now allows others to make decisions about ending the lives of those who are unable to be self-determining. Furthermore, years ago, I debated this issue with Derek Humphry, Founder of the Hemlock Society, and when I asked him if he would support euthanizing people who had never been able to express their wishes, he said something like “not now.”

No Safe Harbor
Bishop Tutu
Ironically, in the early 2000s, two nurses in upstate New York who published an online newspaper called The North Country Gazette, decided that I was the leader of the euthanasia movement in the U.S. For several months, they published a “front-page” article about euthanasia and included my name in the headline. I wasn’t aware of it until I began to receive letters from children asking me why I wanted to kill their grandmother and got a couple of calls from national organizations with whom the Center was working asking me to clarify our position on euthanasia. (I should point out that the Center does not now nor has it ever had an official position on euthanasia. Members of the Center’s board and staff are not of one mind about this issue, and I suspect never will be.)
After hand-printing a few letters to children saying that I was not sure why they thought I would ever want to harm their grandmother, we learned the source of the perception. I honestly will never know why I became the target of this series. I do know, however, that it was heart-breaking to me that for nearly two years, if you Googled “euthanasia,” my name was the first thing to pop-up. 
Neither my ambivalence (or lack of intellectual clarity) nor my efforts to claim the moral high ground – or even what I thought to be clever communication strategies – had provided me a safe harbor or a pass from this debate.

A Moral Right
Now on Tuesday night, Bishop Desmond Tutu, a person who for years I have considered a global moral leader and personal hero, spoke with conviction and confidence about euthanasia as a moral right, an entitlement. 

Ethics is not about black and white. In my experience, it is clearly about trying to deal with “shades of gray.” But, from a philosophical perspective, respect for human life is not negotiable and that has been a sticking point for me. Tuesday night Bishop Tutu said, “As a Christian, I believe in the sanctity of life and that death is a part of life. I hope that when the time comes I am treated with compassion and allowed to pass on to the next phase of life’s journey in the manner of my choice.” I do too. 



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Wednesday, January 4, 2017

The High Costs of Chasing Immortality

John G. Carney, MEd
John G. Carney, MEd, President and CEO of the Center, will present a free lecture on “The High Costs of Chasing Immortality” at the Center’s 2017 Bioethics Lecture Series on January 19, 2017, 4:30 to 5:30 pm CST, in person at the Kauffman Conference Center in Kansas City and on Facebook Live. To attend in person, please RSVP to cleyland@practicalbioethics.org.

Americans undoubtedly cherish the science of medicine, whether it be “moonshots” to cure fatal diseases, research to augment our genetic code, or the development of new “breakthrough” drugs for debilitating conditions.

But how good are we at separating the financial considerations and “return on investment” from the human factors involved in living with incurable diseases and chronic conditions? What is the actual cost – in terms of patients’ lives? What is the value of a day, a week, a month of additional life? Who gets to decide? Who pays? Does every life get valued the same? Should it?

This brief but thoughtful inquiry into the personal and societal questions that we face will attempt to narrow the lens of focus to the human considerations involved in prolonging life for those with life-limiting conditions.

-       How should individual responsibilities in managing care be measured?
-       If we are going to shift from a world that pays for services based on their availability to one that measures “success” in terms of outcomes – whose outcomes are we adopting? 

Patient-centered care is designed to give patients a voice – not only in deciding how important it is to pursue a critical path but in deciding what even the goals of care and treatment ought to be. In doing so, we open ourselves up to a whole new set of questions and a shift from the traditional paternalistic approach where “doctor knows best.”

The whys and wherefores of patient and proxy choices at the edge of life may just give us a peek into how valuing patients decisions could change the dialogue about outcomes and goals of care more generally.


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What we may find in exploring our mortal natures is a different kind of answer - or certainly a different set of questions that need to be answered rather than the elusive and costly pursuit of immortality.


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