|Tarris Rosell, PhD, DMin|
Author Archive: Practical Bioethics
Consider the following hypothetical case scenarios:
Jessica, APN, is a member of the Hospital Ethics Committee and serves also on the HEC’s ethics consultation team. Each week, one of eight volunteer consultants takes first call on the dedicated Ethics pager. Two other team members serve as back up to the on-call ethics consultant.
One day, a consult request is forwarded to the Ethics pager, which Jessica is carrying. It involves a patient on the Medical ICU where Jessica is also a nurse manager. She knows the patient and family, and is all too aware of their conflicted situation with hospital staff regarding goals of care. Jessica also supervises the nursing staff, which rotates care duties on Patient Joe so as not to get too burned out, given his dementia-related raging and flailing. As Jessica reads the ethics consult order, she feels conflicted about her multiple roles in this challenging situation. She wants to be of assistance for ethics, but isn’t certain that she can do so without confusion about what “hat” she’s wearing up on the unit.
What ought Jessica to do, and how would she know?
Jonathan, PhD, is taking first call on the Ethics pager this week. One of three consult requests received involves a very messy situation involving a difficult discharge. The 56 -year old female patient, Helen, is homeless and had come to the emergency department weeks earlier in a police cruiser.
At the point when she becomes medically stable, a dilemma is encountered. How could we safely discharge this patient back to the street where she insists on going “if,” as she says, “you won’t let me stay here?” It’s cold outside, and Helen is barely ambulatory, with some signs of dementia. Follow-up self-care would require daily insulin injections and finger sticks for glucose monitoring. While the patient claims ability to do so, the attending isn’t convinced.
Ethics is consulted, and Jonathan convenes a multi-disciplinary care meeting, including the patient. Consensus eventually is reached on a discharge plan. Helen agrees to go to a homeless shelter with a clinic.
However, after leaving the hospital, the cab driver lets her off at a downtown intersection instead, as directed by his rider. It is a blustery and frigid winter day. Helen is wearing the thin autumn coat and sandals she had been wearing upon admission. A newspaper journalist happens to stop at the intersection where Helen stands shivering, and notes her hospital bracelet. He rolls down the window and asks if Helen is okay. She mutters that City Hospital left her off here to die. The journalist calls 911, and then makes a call to the hospital operator asking to speak with someone in Ethics.
When Jonathan receives this page and phone call, what should he say, or not say, to the journalist, and how would he know?
Ethics consultation, like any other professional practice in healthcare, requires professionalism of the consultant. Ethics consultants can either help or hurt those who request assistance. Sometimes even life and death hang in the balance, especially when it is unclear as to which of those two options would be the worse outcome for a critically ill patient. Always there is confidential information to be handled with care and in compliance with HIPAA rules.
Ethics professionalism matters.
Until recently, healthcare ethics consultants familiarized themselves with the codes of ethics pertaining to other professions, but had none of their own. Jessica and Jonathan might have discerned successfully what they ought to do about their professional ethics dilemmas in the scenarios described. Now their decisions may also be guided by a code of ethics and responsibilities drafted specifically for healthcare ethics consultants.
The American Society for Bioethics and Humanities has posted A Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants as a downloadable document at http://asbh.org/publications/books. The document lists seven ethical responsibilities for healthcare ethics consultation (HCEC):
1. Be competent.
2. Preserve integrity.
3. Manage conflicts of interest and obligation.
4. Respect privacy and maintain confidentiality.
5. Contribute to the field.
6. Communicate responsibly.
7. Promote just healthcare within HCEC.
Each of these responsibilities is explained in the ASBH document, with illustrative examples provided.
In Jessica’s case, she might recuse herself from ethics consultation on grounds of #3, the need to manage conflicts of interest and obligation. One of her back-up consultant colleagues can be called upon to respond instead.
Jonathan would be guided in his own ethics dilemma by responsibilities #4 and #6 especially, and possibly #7. The probably well-intended journalist may benefit from clarification of the situation with Helen; but any communications with him must be done responsibly, perhaps by a designated hospital spokesperson, and with HIPAA-protected privacy ensured both for the patient and her healthcare providers.
Center for Practical Bioethics personnel contributed to the development and publishing of the ASBH Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants. It is currently being utilized in hospitals in Kansas City and elsewhere for professional performance improvement toward the goal of excellence in ethics consultation.
Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics. He also serves as Co-Chair of the Hospital Ethics Committee and Director of the Ethics Consultation Team at the University of Kansas Hospital.
Richard Payne, MD
Participating Congregations in Atlanta, Chicago, Dallas, Houston, Kansas City, Philadelphia and West Palm Beach
African Americans die at excessive levels from chronic disease1 yet use only eight percent of hospice services nationally.2 Advance care planning – the process of communicating with a healthcare agent about the care they would want if unable to speak for themselves – and increased use of hospice services could greatly improve quality of life for one of the most vulnerable populations in America, elderly African Americans.
A new project funded by the John and Wauna Harman Foundation and others will enable the Center for Practical Bioethics to implement a two-year program working with African American faith communities and community collaborators (i.e., hospices) in four cities to increase advance care planning and use of hospice services. Cities include Atlanta, Chicago, Dallas, Kansas City, Philadelphia, and West Palm Beach.
The rationale for the program is rooted in American history and culture. Many African Americans distrust our healthcare system – which once practiced segregation, involuntary sterilization and unethical research practices – and are understandably reluctant to engage in a process that they perceive could put them at greater risk of being underserved. African Americans are also markedly more religious than the U.S. population and more reliant on faith leaders to help them make healthcare decisions.
The project, launched on December 1, 2015, includes four phases:
Phase I – Congregations in targeted cities will recruit two-to-three Advance Care Planning (ACP) Ambassadors to commit to a six-month advance care planning program. Project faculty and staff from the Center for Practical Bioethics and partners will hold a four-hour training session for ACP Ambassadors at the Samuel Dewitt Proctor Leadership and Lay Conference in Houston on February 15-18, 2016.
Phase II – ACP Ambassadors will design and implement a project to facilitate and complete advance care planning documents in their congregations. Faculty and staff will provide coaching and advice on how to teach their congregants about advance care planning, encourage them to discuss their end-of-life care with their loved ones, and assist them in completing advance care planning documents.
Phase III – Faculty and staff will work with ACP Ambassadors and their community collaborators to organize a one-day Crossing Over Jordan Conference in November 2016, where the Ambassadors will share their project design and outcomes with the community.
Phase IV – This phase consists primarily of post-project tracking. Faculty and staff will develop and conduct ongoing surveys of participating congregations for one year following the conclusion of local advance care planning projects to track the project’s impact.
For more information about the project, please contact Leslie McNolty, Program Associate, firstname.lastname@example.org or 816-979-1394.
2 National Hospice and Palliative Care Organization’s Facts and Figures: Hospice Care in America, 2014 Edition, p. 5.
Richard Payne, MD, is the John B. Francis Chair at the Center for Practical Bioethics and the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University.
At Least in the Land of Oz for People with Hepatitis C
Death Panels are back in the news, at least in the Land of Oz (i.e., Kansas). This time the target seems to be assigned to a group of conservative legislators from Kansas recommending that patients in need of expensive medications for an infectious disease should be denied them if they don't adhere to their regimens or follow physicians recommendations regarding lifestyle changes.
During the special hearing conducted by the KanCare Oversight Committee on Tuesday, December 29, the Committee approved (by voice vote) a resolution not to cover the cost of the medications for noncompliant patients. Two members of the Committee strongly objected to the Committee’s recommendation, The Wichita Eagle reported.
A week later on Tuesday, January 5, Ron Sylvester of the Hutchinson News assigned the Death Panel” label to the legislators’ effort in publishing this editorial.
Ironic how the tables have turned. The original Death Panel label was assigned to a non-existent provision in the Affordable Care Act. While we can hope this claim to be apocryphal as well, it deserves to be examined as did the one in 2009.
Provider-Patient Relationship Interference
Hepatitis C medications work, but they are expensive. People who have the disease are often subject to stigmatization because of the infectious nature of how the disease is usually transmitted. Often, people harbor the illness in a dormant state for years and are never tested. Many may transmit it unknowingly through a variety of ways, including contaminated needles. In some cases, however lapses in infection-control procedures are at fault, such as those that occur through manicures, pedicures, piercing, tattoos and sports. To learn more click here.
One might raise the ethical question as to why legislators need to weigh in on an issue that seems pretty clear to be part of the relationship between provider and patient. Should we begin denying coverage for oxygen to patients who continue to smoke or deny diabetes meds to patients who don’t follow prescribed diets? All of these patients bear personal responsibility. Some comply, some don’t, some struggle and fail. Alternatives may need to be identified, but why can’t we leave that to practitioner and patient? Withholding life-saving treatment for a patient who hasn’t complied may be a challenge for the healthcare team and the patient, but is it a reason to abandon the patient’s coverage? Could it be the high cost of the medication or the mode of transmission that policy makers find objectionable part?
Alternatives to a Slippery Slope
Personal responsibility and the relationship between physicians and patients should not be turned into a series of ultimatums. Denying proven treatments for a disease by legislative fiat (regulatory or statutory) because of a failure of personal responsibility eventually leads us to the point where a likely failure of “lifestyle” or “behavior” bodes ill for every last one of us
The Panel's recommendation needs to be "put to rest" before it has a chance to hasten a patient's death. We need to bury the whole concept of Death Panels across the political, ideological and healthcare spectrum.
Discussing and exploring ways to engage non-adherent patients is a worthy enterprise, but we’ve got to be more imaginative and innovative in our ways to achieve health outcomes than cutting off a lifeline because the patient can’t behave in an “acceptable” manner.
John G. Carney is the president and CEO of the Center for Practical Bioethics.
Several months ago the Centers for Disease Control (CDC) announced that it was their plan to develop guidelines for opioid prescribing. Since then there has been much speculation and concern about this initiative among those advocating for a comprehensive chronic pain management approach. In mid-September a draft of the guidelines was posted on the Pain News Network’s website. http://www.painnewsnetwork.org/stories/2015/9/16/cdc-opioids-not-preferred-treatment-for-chronic-pain
For more than a decade, the Center for Practical Bioethics has focused significant resources on the under-treatment of chronic pain in the United States. Two of us, Dr. Richard Payne (the John B. Francis Chair) and I had the privilege of serving on the Institute of Medicine’s (IOM) committee that in 2011 published Relieving Pain in America, which reported that 100 million Americans live with chronic pain and approximately a third of them live with “high impact chronic pain,” i.e., pain that is disabling. That same year the Center convened a group of leaders from more than two dozen national organizations for the purpose of advancing the 16 recommendations made in the IOM report. The Pain Action Alliance to Implement a National Strategy (PAINS) emerged from those discussions.
PAINS is focused on driving the “cultural transformation in the way pain is perceived, judged and treated” called for in the IOM report, and over the 4 ½ years that it has existed, we have:
- advocated for a national population health strategy focused on pain,
- encouraged those living with chronic pain and their family members to become engaged and speak out, and
- attempted to provide objective, well-researched information to policy decision makers about chronic pain as a disease.
When the CDC guidelines were published, PAINS quickly reached out to Dr. Deborah Houry, Director of the Injury Prevention Center where they were developed. We indicated that PAINS could be supportive of most of the guideline content but expressed our concern about the process undertaken by the CDC, including what we perceived as lack transparency and input from those living with chronic pain. Rather than pointing out our specific concerns about dosage limits, three-day prescriptions, no mention of abuse-deterrent formulations, co-prescribing naloxone, and understanding regarding those stable and well-managed with opioid therapy, we did two things:
- We expressed our interest in being of help and asked for a meeting, and
- We offered a set of Principles for Evaluating Clinical Guidelines, including Guidelines for Opioid Prescribing.
The following is our statement of principles:
Principles for Evaluating Clinical Guidelines, Including for Opioid Prescribing:
All those in the healing professions are ethically obligated to treat pain to the fullest extent of their capacity and to refer patients to others when their patients’ needs exceed their capacity. This does NOT mean that those in the healing professions are obligated to prescribe opioids to all pain patients.
Complex chronic diseases, e.g., chronic pain, require comprehensive, individualized bio-psychosocial approaches which may or may not include prescription medications, interventions, surgeries, physical therapy, nutrition counseling, complementary therapies, and/or behavioral health.
Treatments that are “meaningful and appropriate” can only be discerned via shared decision making, i.e., by incorporating the patient’s goals and values with clinical knowledge. Therefore, a provider/ patient relationship based on trust and realistic expectations is essential to a positive therapeutic outcome.
In every treatment plan, consideration of adding any medical therapy (pharmacological or otherwise) should always include a risk benefit analysis, and only therapies for which, in the judgment of the physician, potential benefits outweigh risks should be incorporated into a plan of care.
In most instances, treatments with the least potential for harm should precede those with greater risks. Therefore, less invasive procedures should be tried first, and medication dosages should begin small and be titrated under the close supervision of the healthcare provider.
When implementing treatment with known potential risks, the inherent ambiguity of human medicine calls for caution and ongoing monitoring by the healthcare professional who has prescribed or ordered the therapy. When outside entities require screenings and tests, it is essential that financial burdens imposed by those mandates are NOT placed on the provider or the patient.
Although never intended, iatrogenic harm/injuries do occur; in those situations, patients are owed an explanation, apology, assistance in remedying or ameliorating the problem and a new plan of care. Iatrogenic harm does not necessarily imply negligence or maleficence.
# # # # # # # # # #
Last week, six members of the PAINS Steering Committee went to Atlanta to meet with Dr. Houry and her team. The meeting was convivial but frank and straightforward. All those in the meeting agreed that there is significant common ground between those advocating for better pain care and those working to reduce opioid addiction and what the CDC has labeled “unintended deaths” associated with misuse of opioids.
It is PAINS’s view that both addiction and chronic pain are serious illnesses and that both patient populations are deserving of respect, compassion and comprehensive care. Furthermore, we believe that “pitting” these patient groups against one another, for whatever reason, is inherently wrong and that a “harm-reduction approach” is necessary to mitigate both sets of public health problems, i.e., 100 million Americans living with chronic pain and an estimated 16,000 unintended deaths associated with opioid abuse/misuse.
The PAINS team assured leaders at CDC that with broader input into the guidelines, including that of chronic pain patients, and appropriate revisions, PAINS stands ready to assist the CDC in their process. Without that, however, we will not be able to support the guidelines. PAINS is eager to work with CDC on other issues identified as common concerns, e.g., suicidal ideation among those living with chronic pain and the lack of reimbursement for comprehensive care for those who struggle to live with chronic pain and opioid addiction or both. We left Atlanta “cautiously optimistic” that CDC had heard our concerns.
YOUR ATTENTION REQUESTED
CDC’s draft Guideline for Prescribing Opioids for Chronic Pain, 2016 were posted on Monday, December 14, 2015 at www.Regulations.gov for review and comment. The public comment period opened then and closes January 13, 2016. Please submit all comments and feedback at www.Regulations.gov. Enter the docket number (CDC-2015-0112) to access the docket. Here is the link to today’s Federal Register Notice (FRN): https://www.federalregister.gov/articles/2015/12/14/2015-31375/guideline-for-prescribing-opioids-for-chronic-pain.
CDC will also convene the National Center for Injury Prevention and Control’s Board of Scientific Counselors (BSC), a federal advisory committee, to review the draft guideline. At a public conference call on January 7, 2016, CDC will ask the BSC to appoint a workgroup to review the draft guideline and comments received on the guideline, and present recommendations about the guideline to the BSC.
We encourage all those involved with the Center for Practical Bioethics, whether involved in our PAINS initiative or not, to review the revised guidelines and provide feedback to the CDC.
Myra Christopher is the Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics and the Director of PAINS.
|Jan Evans, CPA|
My husband Dave’s parents, Robert and Lydia, are exceptional people. They were born in 1920 and 1921, and grew up in untraditional households in Oklahoma. Both of Dave’s grandfathers were killed at young ages in work-related accidents, and his mother’s mother died young in childbirth. Bob and Lydia were high school and college sweethearts. They married on Bob’s graduation day from the Naval Midshipmen’s School in New York City before he went overseas during World War II.
After returning from his service, they lived in Great Bend, Kansas, before moving to Lawrence in the mid-1970s as his engineering business was expanding. They were very happily married for more than 71 years. I have known them for 33 years, and been their daughter-in-law for 30 of them. They have always been accomplished, strong, resilient and wonderful people: well-read, interested in world and local events, ready for travel and adventure.
Ahead of His Time
They definitely were planners and always had a direction moving forward in life. And their first priority was always love of family. Consideration for their family was so great that, before many people ever heard of advance care planning, they made sure that their children knew what their wishes were regarding medical treatment at the end of their lives. Years ago, they talked to us about their wishes so that we would know what they wanted (and didn’t want) and so they could be confident that we would be able to fulfill those wishes.
Last summer, my father-in-law died peacefully at age 94 surrounded by his beloved family on August 22 at his home in Lawrence, Kansas. He wanted to die at home, not in a hospital. However, his final illness progressed very quickly, and it appeared that he would not be able to return home as he wanted. Once again, even in a much-weakened state, he demonstrated his strength as a person. After a day or so in the hospital, the end was inevitable, but he held on, determined to be strong enough to make the trip back home where he would be comfortable in a hospital bed with family around, listening to the music he loved, the Royals games and the conversations of many visitors. It was truly a remarkable end-of-life journey for a very remarkable man.
But it didn’t end there. Bob’s family always knew the places and people that were most important to him. He was very interested in his family history, and he passed that interest on to his children. A few weeks after his death in mid-October, his wife, children and their spouses took his ashes on a journey to important places in his life as a tribute to him and so we could all say good-bye.
We traveled to Great Bend, Kansas, where he had established his business over 50 years ago, raised his children, participated in civic activities, and was active in his church. We also traveled to Oklahoma – stopping in Oklahoma City at the cemetery where his family is buried. His children offered various tributes to him, like hitting golf balls sprinkled with his ashes into the stream where his family had enjoyed many afternoons of summer picnics. He was moving forward again.
It gave the entire family a sense of calmness and peace to know exactly what he wanted at the end of his life. We were able to spend our time together then and on our trip celebrating his remarkable life.
Jan Evans, CPA joined the Center for Practical Bioethics in 2011 as Fund Accountant.
|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 www.PracticalBioethics.org, 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.
|Elizabeth Berkshire, PhD|
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.
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.
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 MyraFor 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.
|Tarris Rosell, PhD, DMin, and David Casarett, MD|
Off the lecture circuit and in clinical or personal situations, Flanigan lecturer Dr. David Casarett encounters plenty of controversy, and not much to joke about. He is a palliative care and hospice physician. His patients are either suffering or dying, or both. Families are traumatized or grieving. Serious business. In healthcare facilities, controversy erupts daily around treatment decisions and transitions of care, and about what should be done when a patient stops breathing.
Serious Cases, Controversial Outcomes
Some seriously controversial occurrences were impetus for both of Dr. Casarett’s recent book projects.
• A 2 year old, Michelle Funk, drowns in a cold creek, and after 3 hours of protracted CPR attempts, she (miraculously?) comes back to life—with brain cells intact and working.
Does this mean that we should default to CPR for everyone who stops breathing or loses a heartbeat, and that rescuers should almost never stop, on the chance that the victim could be another Michelle Funk?
• A 42 year old with end-stage cancer and associated pain gets some relief from getting stoned, and moves to Colorado hoping for ready access to “medical marijuana.”
Does this mean that permissive marijuana laws such as those in Colorado, and increasingly elsewhere, are right and good, to be emulated everywhere?
Humorous Paths to Thoughtful Conversation
Casarett finds humor in the midst of ongoing debates regarding what ought to be done with “the recently dead” or those who find pain relief from a reefer. Book titles—Shocked and Stoned—reflect a not entirely serious treatment of controversial topics. His next book is on assisted suicide. We brainstormed one-word titles to fit a trilogy. Nothing very funny, or appropriate, came to mind. And that is a challenge one faces when addressing serious topics with humor. Joking around with the suffering of others could be experienced as insensitive and inappropriate.
In person, David Casarett is just the opposite. He comes across as witty but thoughtful, even shy. I expect his patients and colleagues love him, and he them. He also has a penchant for finding issues in palliative and hospice care that pique our curiosity—and tickle the funny bone.
It is hard not to smile at some early attempts to resuscitate newly dead bodies. Casarett writes and speaks about a method once used that involved blowing tobacco smoke up the rectum. Really.
Although medical marijuana is supposedly about getting relief from symptoms and not about getting high, just mention Colorado these days and “stoned” jokes start to fly. Casarett provokes this response, or perhaps anticipates it, by the title of his book on the subject.
Suffering and dying are no laughing matters, and we surely do not all agree on what ought to be done about default CPR standards or legalizing marijuana for medicinal use. Behind each controversy are the incredibly sad stories of persons who died and others who suffer the pain and discomfort of incurable diseases. Our wish to avoid these experiences, or conflict, may lead to avoidance altogether. Scholar-practitioners like David Casarett enable us to engage the serious and controversial with tasteful good humor. Everyone likes a good joke. When the laughter dies, thoughtful conversation might begin—as it did for Flanigan Lecture participants on August 12th.
By Tarris Rosell, PhD, DMin
Rosemary Flanigan Chair at the Center for Practical Bioethics