Tuesday, March 7, 2017

Secretary Kathleen Sebelius Presents Big Ideas in End-of-Life Care

By Kathy Greenlee, JD
What are the “big ideas” in end of life care? The Aspen Institute Health Strategy Group (AHSG) is helping to answer this question.

In 2016, AHSG selected end-of-life care as the subject of their year-long research. The effort was co-chaired by former Health and Human Services Secretaries Kathleen Sebelius and Tommy G. Thompson. Aspen worked with leaders in the field, sought public input and documented their findings in a recently released report titled, “Improving Care at the End of Life.” The Center for Practical Bioethics offered ideas as part of the public input process, a fact noted in the Preface to the report.

We are excited that former Secretary Sebelius will provide a keynote address at our Annual Dinner, April 5, where she will discuss these ideas and her role as co-chair of the project. Additional information about the Annual Dinner can be found on our website.

Practitioners will be encouraged to see the scope and depth of the AHSG five recommendation. They are:

Build the development and updating of an advance care plan into the fabric of life.

Redefine Medicare coverage in a way that meets the complex needs of people with serious illnesses.

Develop a set of quality metrics related to end-of-life care that can be used for accountability, transparency, improvements and payment.

Increase the number and types of health professionals who can meet the growing needs of an aging population.

Support model communities embracing fundamental change in the design and delivery of care for people with advanced illness.

Four background papers are included as the second part of the report:

Overview of the End-of-Life Experience in the United States, by Laura C. Hanson, M.D., M.P.H.

Care at the End of Life, by Diane E. Meier, M.D.

Financing Care at the End of Life: Ensuring Access and Quality in an Era of Value-Based Reforms, by Haiden Huskamp, Ph.D. and David Stevenson, Ph.D.

Doing Right by the Seriously Ill: Ethical Norms for Care Near the End of Life, by Mildred Z. Solomon, Ed.D.

You can find this report online at https://assets.aspeninstitute.org/content/uploads/2017/02/AHSG-Report-Improving-Care-at-the-End-of-Life.pdf

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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Tuesday, February 28, 2017

Home Birth, Hospital Birth, and the Myth of the Good Mother - Reflections from a Bad Mother

Written by Leslie McNolty

In the eyes of many, I started out in motherhood as a bad mother. I decided to birth my first child in a free-standing birth center with a midwife instead of at a hospital with a “Level 3 NICU” (as I’ve often seen advertised to pregnant women).

Things only got worse from there.

I chose to birth my next two children at home. My daughters were born in our dining room in the presence of their siblings, grandparents, and great-grandparents.

I did a lot of research about place of birth before choosing to have my babies outside of a hospital. Ultimately, I decided that I was more likely to emerge from the transformative experience of birth physically and emotionally intact if I avoided modern obstetrics practice.

But I think it’s fair to say that the popular consensus is that my choices were irresponsible at best and selfish at worst.  Irresponsible because the place of birth study that has gotten the most popular press attention is the Wax Study which purports to demonstrate a statistically significant increased risk of neonatal death in home births. And selfish because the dominant cultural narrative around motherhood is one of sacrifice. Mothers are expected to sacrifice their own interests for their children. In choosing home birth, in part to protect my own health and in pursuit of the birth experience I wanted, I flouted this sacrificial requirement of mothers.

My lecture on March 8th will explore some of the pressing ethical question that arise when women exercise autonomy in ways that resist the professional medicalization of pregnancy and birth and defy traditional gender stereotypes about maternal sacrifice:

What makes a good mother?

How are women’s choices shaped by cultural understandings of who makes a good mother and what good mothers do?

How are these cultural narratives reinforced in obstetric practice?

How should decisions about birth be made? Who should make them?

I’ll discuss how bioethics can help sort through questions like these and provide clarity in matters of life and death.

Leslie McNolty is a Program Associate at the Center for Practical Bioethics. She received B.A. degrees in Philosophy and Political Science with a Secondary Degree in Women's Studies at Kansas State University before taking her M.A. in philosophy from Rice University in Houston, TX. Currently, she is completing a doctorate in bioethics from Albany Medical College. She teaches in the philosophy department at the University of Missouri-Kansas City and in the bioethics department at the Kansas City University of Medicine and Biosciences.

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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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