Thursday, November 19, 2015

A Precious Gift: Conversation Ahead of the Crisis

Linda Doolin Ward and Sandra Doolin Aust
Our mother lived through the experience of our grandmother dying from complications of Alzheimer’s Disease. When she received her own Alzheimer’s diagnosis, she sat down with us and had the “talk.” She knew the course of this disease and the decisions we would face as it progressed: increasing need for assistance with daily activities, appropriate precautions to keep her safe, treatment options that she wanted to avoid including feeding tubes and ventilators that she knew from experience would not be helpful. She was very clear about what she did and did not want. Over the next eight years, we were guided by her clear and early direction, even as she lost the ability to speak in the last two years of her life. It was heartbreaking to lose her, especially in this cruel way, but she had given us a precious gift—confidence that we were doing what she would want us to do.  

Medicare on Board

We are heartened, finally, that policymakers are recognizing the value of this gift and the need to make it easier for patients, families and clinicians to have “the talk,” also known as “advance care planning.” 

In September 2014, the National Academy of Medicine (formerly the IOM) released its report, Dying in America. As the NAM website states, “no care decisions are more profound than those made near the end of life” and we have a “responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.”  

Starting in January 2016, the Centers for Medicare and Medicaid (CMS) will activate two payment codes for advance care planning services provided to Medicare beneficiaries by “qualified health professionals.” In paying for these services, CMS takes an important step in enabling seniors and other Medicare beneficiaries to make important decisions that give them control over the type of care they receive and when they receive it. 

As 2,200 people in our region turn 65 each month, the National Academy of Medicine report and Medicare’s new reimbursement policy are both important and timely. Diverse as we are, all of us will share the experience of dying. In our society, we try to push this fact of life away, and we would rather talk about almost anything else. Attention from the NAM gives us a reason to talk about it. We are honored in Kansas City that Dr. Christian Sinclair was on the NAM committee and Myra Christopher of the Center for Practical Bioethics was a reviewer.  

The Center Can Help

From our personal experience both in our respective roles at the Center for Practical Bioethics and Shepherd’s Center Central, as well as our role as daughters, we suggest that “having the conversation” ahead of the health crisis may be the most important conversation you and your family will ever have. All of us need to name someone to speak for us when we cannot speak for ourselves. Data show that 85% of us will die without the ability to make our own decisions for any number of reasons. 

The Center for Practical Bioethics has developed several tools available at, as well as a program called Caring Conversations® in the Workplace, to provide a process to help with this difficult “talk.” Anyone can download the Caring Conversations® workbook at no cost and employees from the companies and organizations who currently participate have the chance, with the help of a Center staff member, to understand the difference that initiating this talk can have in families. It requires us to be brave. And it’s worth it.  

It literally can be the difference between not having Thanksgiving together anymore because the family fought over what Mom would have wanted, and “Mom’s death brought us even closer together as a family because she made sure we all knew her wishes, and she would have been proud of how we came together to honor her.” It is never easy, but at the Center for Practical Bioethics, it’s called “the greatest peace of mind possible.”

Linda Doolin Ward is the Executive Vice President and Chief Operating Officer of the Center for Practical Bioethics, Kansas City, Mo. Sandra Doolin Aust is the Director of Coming of Age Kansas City, Shepherd’s Center of KC Central, Kansas City, Mo. Both sisters reside in Kansas City, Mo.

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Wednesday, October 14, 2015

Staying Put

Elizabeth Berkshire, PhD
During a patient-centered collaborative on pain treatment, a clinician I’ll call “Lear,” blurted out that the patient is the problem. He later apologized, but the burden brought by the patient had been exposed. As part of his apology, Lear said that “they” (patients) needed to get out of their own way. I’m not customarily one for reliance on the notion of a Freudian slip, but this struck me as the kind of truth not easily introduced into speech. It is easy to suffer greatly in the company of a patient in refractory pain, and especially one who lacks the sort of organ-based evidence that can be relied upon to maintain interpersonal (or professional) boundaries. 

Contriving Social Boundaries

Why not welcome unbounded (or collective) suffering? In short, for blogs are meant to be brief, we must contrive social boundaries to stave off the dread that comes from realizing that we actually exist among bodies—not in them. So we’ve adapted ways of thinking about our being.  For example, we can exist in a faulty body. We can also exist in a faulty brain. Take your pick. As Judy Foreman reports in A Nation in Pain (2015), doctors are trained to refer patients on to a “shrink” when the medical model offers no progress (p. 5). Foreman also shares an anecdote from a University of Washington informal survey of graduating medical students who, when asked what would they do when faced with a real pain patient, netted the response: “Run!” (p.9) 

As for the patient, it is easy to suffer alienation in the company of anyone especially trained to keep important parts of you (and themselves) out of the way. We don’t customarily talk about the ways we contrive relations among bodies to keep from spilling the beans about our existence. How could we? We’ve effectively made such talk taboo. Run! How convenient for us all. I say this with compassion.

Beyond Patient Centering

Speaking of convenience, it occurs to me that patient centering (or the pretense that entitlements can be shifted in a long-standing system of institutionally sanctioned power differentials) is counterintuitive to the development of healing communities. It should worry us that the very notion of patient centering, while perhaps born out of advocacy within and outside of institutional systems of care, is not practical. Nor does it substantively alter the status quo. For example, Lear and a select group of his “collaborative” colleagues spoke from behind a podium. Revolutionary dialogue (including the listening part) is easily disregarded if a podium stands only to position folks into roles. 

What to do? We could better lament what the patient and clinician are mutually up against. We’d have to move that pesky podium first. Then we could simultaneously embrace Lear and his insufferable patients. We need not condone professional nearsightedness as we do this. Instead, we might recognize the existential crisis in Lear’s own desperate appeal for care from the patient (please get out of your own way). In fact, Lear’s request bears all the more truth when tethered to a patient who tearfully shared with me that he had failed, time and again, to convey (so as to better heal) his chronic pain. We must stitch them both back into the fabric of life. We must tell them that their alienation from one another is not a mental defect. It is a practical disaster. It is a relational mishap. It is all too familiar. I know this, in part, because I wanted to bolt just seconds after meeting this patient. I had to reach my hands up to his face to stay put. Why? Because I knew exactly what he meant. In that moment we were together (bound) and exposed in ways we have evolved not to trust. We don’t prepare physicians to manage this in the clinic. We also no longer prepare psychologists for this (but that is another blog, for another day).

To Be Another

It is not easy to dismantle the interconnecting and yet disparately empowered statuses (or contrivances) built into how we learn to talk to one another so that we might stay safely tucked in a body. This is why Shakespeare’s Lear implored his daughter Cordelia to “speak again.” He needed her to flatter him back into a titled position (and the safe distance it obliged from all). It is important to know that these rules of speech, and the social taxonomies they maintain, help to keep us all pinched off from the burden of knowing what it is like to be another. In another world, collective suffering might not have been such a burden for a physician, who cannot help but to find herself in terribly close proximity to human frailty. In another world, insufferable pain might not have been such a hazard for a patient to carry. But another world is not what we have.

Elizabeth Berkshire, PhD, is adjunct assistant professor of bioethics at Kansas City University of Medicine and Biosciences.


Friday, September 25, 2015

Goals of Care: Driver of Shared Decision Making

When the Harvard Business Review (HBR) and the Journal of the American Medical Association (JAMA) both publish articles in the same week on virtually the same topic by two distinctive and veteran experts in the country, it becomes a must-read opportunity – for those within and outside healthcare. 

Missing Metrics

The importance of focusing on the PATIENT’s goals of care directs provider attention to one of the most critical but overlooked challenges faced by families dealing with advanced illness. Both authors speak to our need to integrate personal “Goals of Care” as defined, experienced and articulated by the patient and family into the care planning process – not just as a component of shared decision making – but the driver of it. For those dealing with advanced chronic and progressive disease, patients’ values and preferences regarding independence, functional status and quality of life should be PRIMARY considerations in establishing the care plan. Sadly though, both experts shared how sorely lacking adequate resources, tools and metrics are to professionals in helping measure outcomes for this oft-over-medicalized legion of vulnerable patients.

Diane Meier, MD, director of the Center for the Advancement of Palliative Care, writing in HBR put it this way: that we should “start by asking patients and their families what matters to them, not focusing on the disease alone. We recognize that for patients with serious, progressive (usually chronic) conditions, as their illness evolves, what matters to them and their families also changes.”

In her HBR piece, entitled “Measuring Quality Care for the Sickest Patients,” she laments that we are not invested in the “the science of quality measurement...enough to measure what matters most to these patients,…because we don’t yet know how to allocate resources to achieve patients’ care-related goals.” Mind you now, the U.S. spends multiple times over what other developed counties do on health care, but it seems our investments are directed at highly technical and invasive therapies rather than those that are more palliative in nature and socially responsive – for a group of folks who can gain little from attempts at rescue medicine and aggressive measures.

Dr. Joanne Lynn’s Viewpoint piece in JAMA, entitled “Value-based Payments Require Valuing What Matters Most to Patients” describes her position as follows: Paying for value “requires measuring what actually matters to patients.” She continued, stating that almost all current quality metrics reflect professional standards, which is a good thing, but called out the shortcomings of professional standards for those living with “serious, life-altering, and ultimately life-ending chronic conditions because traditional professional standards may not effectively address what an individual most wants.”

Call to Action for Consumers and Families

Both Lynn and Meier propose a series of “shoulds” that clinicians, researchers, systems and payers ought to be considering to address the structural deficiencies and quality measures our most fragile patients need. I applaud them both for their insightful prescriptions and tactical  recommendations. Professionals of all disciplines should heed their wise counsel. 

My focus, however, remains a bit more patient directed. It is time for us as consumers and family members to take our “shared decision making” obligations more seriously and begin engaging in the kinds of conversations that will assist those clinicians in clearly understanding what kinds of goals they should be matching with those “patient preferences.” 

Get hold of a Caring Conversations® workbook, flip through our Conversations starter booklet®. We, as patients and families, have to do our part in reducing the burden of providers in feeling their way about what we want most. This is our job as much as it is theirs, and we owe it our loved ones to clearly articulate the values that point to the right set of goals that should be adopted, measured and achieved.

John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.


Tuesday, September 1, 2015

Legalizing Medical Marijuana

Virtually everyone is familiar with Mitch Albom’s book, Tuesdays With Morrie. Myra Christopher (Foley Chair at the Center and former Center CEO) and Rosemary Flanigan (Retired Center Program Staff) have decided to regularly contribute to the Center for Practical Bioethics’ blog and call it “Tuesdays with Rosemary and Myra” (even though it won’t necessarily be published on a Tuesday). Read more about Rosemary and Myra at the bottom of this post. 

Note:  Today, Myra and Rosemary are discussing an article about the legalization of marijuana that appeared in National Geographic.

M:  Rosemary, I’m sorry, but I did not get my homework done. So, you are going to have to tell me about the National Geographic article that we agreed to read. Good ethics start with good facts; so, give me the facts, Mam.

R: Okay, basically the article says that marijuana has been found to be helpful in cases of childhood epilepsy and other seizure disorders, and its use in relieving or ameliorating these tremors or whatever the child goes through has led many people to project its use for other medical purposes.  

As you know, across the nation, states are legalizing marijuana for medicinal purposes. However, I believe that the argument for it has got to include further research about its use and side effects. My argument is that we need the research for the justification of its use for purposes other than those for which we have evidence that it works. 

M:  That’s a good argument, but we actually have very little evidence for most of what is done in medicine, and let’s talk about the fact that some states are also legalizing the use of marijuana for “recreational purposes”; so, what’s the distinction? It’s okay to smoke it for fun but not if it helps your back pain? Many people with other illnesses such a migraine claim to benefit from its use.  

Rosemary, a dear friend of yours and mine who died of cancer a few years ago called me shortly before her death and said that her doctor had encouraged her to use marijuana to stimulate her appetite. She asked me if I thought that was ethically OK. I said for, “God’s sake, you are dying of cancer. If it helps you to eat a bite or two, what harm will be done?” And she said, “But it’s illegal!” I think that sometimes we confuse what is legal with what is ethical.

R: So, her doctor wanted her to eat it.

M:  I don’t know if he wanted her to eat it or smoke it. Probably smoke it because I know that when people smoke marijuana they get “the munchies”, and I don’t know what difference it would make if someone smoked it or ate it. Do you think there is a difference?

R:  No, no! I was just asking out of curiosity.

M:  I assume that, like other drugs, marijuana affects different people in different ways. Rosemary, I am assuming that you have NOT smoked or eaten marijuana, but I have. When I was in my late 30s or early 40s, I smoked a marijuana cigarette. 

I had not been part of the “drug culture” in my youth, and I wanted to know what it would be like. Actually, my experience was awful. I felt completely out of control, and anyone who knows me knows how important control is to me. I did not get hungry – just paranoid.

R:   So like Bill Clinton, you didn’t inhale.

M:  Oh no, I inhaled! I can’t imagine why people want to do it, but clearly many, many people like it, and many, many people think it helps them with health problems.
I struggle with why we are so twisted up about the use and abuse of marijuana, when our society literally runs on alcohol. I want you to tell me what the difference is in smoking marijuana and having a Manhattan.

R: Society has made alcohol acceptable. It is interesting how often a societal response to something can move the consideration of something from “right” to “wrong.”

M.  Society may think alcohol consumption is morally acceptable, but there are more than 80,000 alcohol related deaths in the United States each year. I don’t want to sound like Carrie Nation, but given what you just said, is the issue about the legalization of marijuana really a moral issue rather than an ethical issue? And if so, why and what is the distinction?

R.   Let me try an analogy. I have always justified the states’ use of capital punishment, but from a global view, capital punishment has come to seen as immoral and, therefore, ethically unjustifiable. Couldn’t the same be said of the use of marijuana, which has been seen as illegal because it is immoral, but with its legalization, has come a shift in the perception of its moral evaluation?

M.  That could be true, but I’m not sure I accept that argument. In bioethics we often use the terms moral and ethical as though they are synonyms, but I want to be able to make a distinction between them because it is important to me that what is “ethical” is not determined by a public opinion poll. Nor do I want something to ethical because it is legal or illegal (slavery was legal). I want that determination made through an analysis of facts, values, motivations, consequences, etc.

R.  True, true, true!  But there are practices in our society that we allow when we do not know whether the effect of something will benefit or harm human nature -- such as the use of marijuana.  hat’s why I’m arguing for further research within a society where it has been made legal. 

M.  So, are you saying that its use is ethical “for now” -- until proven to be harmful?

R. Yes, until we have more evidence.

M.  I sort of hate to agree with you because this has been fun, but I do agree. The value we place on autonomy and personal freedom has to trump (I’ve come not to like using that word in the last few week but…) ambiguity about whether something is right or wrong. I wonder what our readers think. 

About Rosemary and Myra

For several years before her retirement, Rosemary facilitated an online discussion group, primarily for ethics committee members, which had a faithful following. We hope some who participated and others will read our blog posts and respond with their thoughts on whatever subject we are writing about. We would also be grateful if you would provide suggestions for future blog topics. With your help, the two of us are moving into the 21st century, but for Pete’s sake, don’t expect us to tweet!

We have decided to write a regular blog for several reasons. First, there has never been a greater need for ethical reflection than there is today. We both agree about that, but we are very different people, and often disagree on issues. We hope it will be helpful for us to model respectful disagreement. In addition, we just finished writing a history of the Center which took us three years, and we enjoyed doing that so much that we need an excuse to continue writing together on a weekly basis. So, we don’t mind bothering you with our ideas.

I call myself a “philosophical Christian agnostic” and Rosemary is a member of the Sisters of St. Joseph of Carondolet. Rosemary taught high school English and philosophy at Rockhurst University. She is a stickler for the “King’s English” and proper grammar. I grew up in Texas and just like to talk. We are both old; I turned 68 in July; Rosemary is older. We both have had training and education in ethics, but Rosemary has a PhD. We have both worked in bioethics for many years, and we both LOVE to argue. As Rosemary says, “Doing ethics is all about argument.” But ethics is not about mean-spirited disrespectful exchanges that are so prevalent today in a “red-state/blue-state culture.” Through blogging, we hope that our agreements and disagreements will demonstrate that we can argue respectfully and still love and care about one another.

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