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.

Legalizing Medical Marijuana

TUESDAYS WITH ROSEMARY AND MYRA
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.

Laughing When It’s No Laughing Matter

Tarris Rosell, PhD, DMin, and David Casarett, MD

At our 2015 annual Flanigan Lecture events, I had expected more controversy and less humor. The topics were CPR and medical marijuana, and ethics issues pertaining to both.

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?

Controversy.

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