Shared Decision-Making, Compassion and Choice

Ah_Haa_School_Trees_on_CreekShared decision-making, choice and compassion are three key takeaways from our second day at the Ah Haa school in the Sangre de Cristo mountains. The Michael Skolnik Story has served as the Telluride Patient Safety Summer Camp teaching tool that conveys lasting learning around shared decision-making and the informed consent process by connecting the heart with the head. Michael, like Lewis yesterday, is another senseless casualty of a healthcare culture slow to evolve. While the more overt failures to protect him may have come in the form of a poor informed consent process and lack of shared decision-making with his Mom, Patty, and Dad, David, there were also many poor choices made by those charged to care for him along the way.

Choice has come up a number of times, a number of different ways already this week. One of the residents yesterday mentioned a near miss she experienced with an infant, and how a number of nurses and residents knew long before the baby crashed that something was going wrong. Yet no one chose to challenge the poor treatment choices the attending physician was making. With a shaking voice she shared it was infinitely harder to look at what was only moments ago a healthy child, and know you could have chosen to do something to influence a better course for a patient. In both Michael and Lewis’ cases, others knew something was not going as it should in their care, but failed to speak up before it was too late. Everyone here in Telluride this week–everyone that touches healthcare–has the power to improve the life of a patient by the choices they will make upon returning home.

Paul_Small_GroupsChoice was also at the center of Paul Levy’s (@PaulfLevy) negotiation session. Win-As-Much-As-You can, a game that allowed players to either cooperate and win a modest amount of money, or choose to break bad, and go for it all at the risk of losing the trust of the group, provided immediate consequences to choices made. The experience of negotiating a simulated real estate deal laid the framework for understanding first-hand how choosing to seek, and honor, the interests of the “other” in any deal, made for joint decisions that built relationships. These negotiation skills, Paul shared, would not only serve our attendees well when having to come to agreement on patient care with colleagues, but also in life when negotiating jobs or navigating relationships.

And as Day 2 at the Telluride Patient Safety Resident Summer Camp came to a close, Kim Oates MD (@KimRKO) from Australia encouraged attendees to reflect on what the barriers of showing more compassion in the daily delivery of healthcare might be. The residents shared the following list, and Kim gently guided the group to look at the flip side of their perceived barriers–to see where they might be able to squeeze in just a little more compassion.

  • Self-preservation: Having to deliver bad news on a regular basis
  • Maintaining the right level of professionalism
  • Being exploited, or feeling taken advantage of, when being compassionate
  • One’s own nature: Being more of a thinker than a feeler making expression of emotion more challenging. Kim commented that it’s good to know your own comfort zone, and to find authentic ways within one’s own limits.
  • Lack of confidence, anxiety on how one is viewed by colleagues and patients–The closer to being an attending, the more greatly this resident valued training others to show compassion, as well as expressing it herself
  • Cultural barriers that prevent touching — To show greater compassion in these cases, one resident suggested taking a meaningful pause, offering a tissue, listening, or sharing information. Kim suggested that while this approach may take more time upfront, it can save time overall because it improves relationships, and with it, patient care.
  • Technology creates barriers — i.e. location of EMR requiring back to face the patient, walking in focused on iPad. Kim shared how he would rearrange his office before patients entered to remove physical barriers.

Kim closed the discussion by encouraging everyone to consider where they might add a little more compassion in their interactions with others, reminding the group that professionalism does not have to equal being emotionless.




Storyteller & Journalist Anna Quindlen at #AAMC13: “Do You Know Who I Am?”

Anna Quindlen is someone I have long admired. An aspiring journalism undergrad student, I read Living Out Loud almost twenty years ago, and was inspired by her need to share ‘the story’, as well as her ability to make a successful career out of doing so. Now, a well-known and respected Pulitzer Prize winning journalist and repeat best-selling author, Quindlen recently shared her wisdom and words with healthcare leaders–young and old–at the annual AAMC meeting in Philadelphia. It comes as no surprise that the accolades and tears shared in the Storify snapshot Screen Shot 2013-11-12 at 6.06.54 AMof tweets from her talk show organizers made an excellent choice by inviting her to speak. (Click image to go to Storify page if interested).

For those who missed her talk, Quindlen has given permission to the Arnold P. Gold Foundation to make the full text of her speech available until December 3rd, and it can be found here. Having read the transcript, I wanted to share some of the highlights in the event the tyranny of the daily takes priority and prevents the well-meaning click-through before 12/3.

Per her transcript, Quindlen shared the following:

  • The story of a repeat surgery she recently underwent, along with the differences in the care she received from her anesthesiologists. Do you know who I am? is the takeaway for providers listening in, as the care team who understood her needs, values, preferences and goals knew who she was–someone who did not want a general anesthetic–and that made all the difference.
  • The similarities between healthcare and journalism, and how in this day and age of technological advancement and depersonalization it is still the ability to hold the gaze of a fearful patient that makes the greatest impact.
  • The story of the care her father, the patient, and she, the patient advocate, both received as they navigated and negotiated his stay on a burn unit. This story alone is worth the time for the click-through above, but in short, her father’s care team acknowledged and appreciated the knowledge she brought into the room, and as a result her father’s care plan was developed with the family’s needs, values, preferences and goals as the foundation. And while she says that the care he received was best-in-class, it was the social worker who stopped in to ask how they were doing, the nurse who played music for her father when she could not be present, the doctor who expressed three times his understanding of how hard it was to make the choice for palliative care, and the sympathy card she received from the staff, that stay with her now. But perhaps most important of all, she shares that her father’s care team:

…gave me a sense of power and control in a situation in which I was bound to feel powerless…they put a human face, a series of human faces, on my father’s care.

  • And finally, she shared four “simple” takeaways for the audience: 1) Try to be present and in the moment 2) Acknowledge uncertainty 3) Practice empathy 4) Try to be kind

As news outlets continue to talk about patient harm, pushing for accountability and bantering about frequency, a more subtle form of harm occurs more frequently and is not meaningfully measured. That harm is steeped in the missed opportunity to know the patient. Providers fail patients on a human level because care providers are human, and humans caring for humans is far from a perfect science. Maybe it’s also about patients resetting expectations and not setting themselves up to be disappointed by, as Quindlen refers to, MDietys that are in fact just people like them. The four simple truths or takeaways she mentions are things all of us, patient–provider–caregiver–sister–son–father–boss–administrator, can ascribe to and make any encounter–healthcare or not–a better one.

Thank you, Anna Quindlen, for continuing to inspire others with your words!

Experiencing Both Sides of the Quality and Safety Chasm

For more than 25 years I have had the pleasure of calling Jerod Loeb my friend. We lived down the block from one another as our families “grew up” together. Many who read this blog also know Jerod, or have worked with him at some point during his illustrious career. He has been a leading international expert in healthcare quality and safety for decades, and he has taught me much through his leadership. His wife Sherri is also a good friend of ours. She too has spent her entire professional career in healthcare as a registered nurse.  I wanted to share part of a recent article about the Loeb family’s personal journey through the healthcare system. Many of Jerod’s academic writings can be found in leading healthcare journals, however this piece, was published in their community newspaper.

Ironically, they will now tell you it wasn’t until Jerod was diagnosed with cancer that they both realized how much they did NOT know about healthcare. The Loeb’s personal experience has made them realize that drastic changes need to be made in healthcare administration. To that end, Jerod and Sherri are making it their personal challenge to educate others on how to best navigate the healthcare system as patients. Below Sherri describes some of her thoughts in relation to this dreadful disease:

“How do you ever start to explain the changes in your family’s life when someone is diagnosed with stage IV metastatic cancer? What was a perfectly normal life, changed on a single blood draw two years ago. From a PSA of 1.2 to 535 in one year. The prostate cancer had already spread out of the prostate and throughout the bones. It was too late for surgery. Two highly educated health care individuals were suddenly thrust into the sharp edge of the medical system. Through standard treatment, clinical trials, having to travel 1000 miles for care that looked beyond the “standard of care”, we have done it all. Throughout this journey we have learned many things:

1. Diseases don’t read textbooks – thus what may be appropriate care for some is not for others.

2. Although you may be extremely bright and knowledgeable once you enter the health care system as a patient you tend to become deaf, dumb and blind.

3. The need for patient advocacy and family engagement is crucial for the best care possible

4. Communication is vital. Without it everything else is lost.

5. Epidemiologists who decide that PSA screening is not important need to look at patients individually and not make a generalized statement.

6. Shared decision-making is the only way to appropriately approach care.

7. Stop treating patients like they are simply an icon on the computer and remember they are a person, with hopes, dreams and families.

8. Patient safety is not something to take haphazardly. Without it patients die or are harmed unnecessarily.

Many times, the most important educational messages we need to share in our teachings are not found in the traditional p-valued, statistically significant healthcare research articles we like to reference. The best learnings can be found in a neighborhood journal that incorporates the patient’s perspectives and needs into the educational moment.

Resident Reflections from Telluride 2013 #TPSER9

IMG_7727Having just returned from Telluride, I can share that the future of medicine looks extremely bright. Twenty-eight residents, all extremely passionate about patient safety, patient-centered care, shared decision-making and righting the wrongs they see in healthcare, have all promised to tell 10 colleagues about the empowering cultural messages shared in Telluride. They will then ask those 10 colleagues to share the lessons learned with 10 more, and so on…

As Telluride organizers Dave Mayer and Tim McDonald say, they will pay it forward.

Following are just a few of those messages in excerpts from resident reflections on the Transparent Health blog. All post can be found here.

From Dr. Kerrie Bossard — The opportunity that I see after completing this exercise is that although we can all make small incremental changes in our respective practices, how can we reshape the practice of medicine to make our small individual changes part of a bigger and more permanent cultural change? If all 28 of the scholars would communicate with 10 colleagues about the importance of shared decision-making and informed consent we could make a small change. But if we made our goals for next week bigger and decided to change the entire process for all residents for generations to come, we may succeed in making lasting change and forever changing the practice of medicine related to these issues…(continued here)

From Dr. Shabnam Hafiz — What an incredible week! I have been so fortunate to be surrounded by such a brilliant group of people leading change all over the country. You have all inspired me and energized me to go back and promote the mission that we have all set out for ourselves- create a system that is patient first… (continued here)

From Dr. Michelle Espinoza —today’s experience was life changing…To be here in Telluride is truly a blessing, and to be surrounded by such knowledge, talent, wisdom and passion is AMAZING…Today I learned that I am not alone in thinking our hospitals are one of the most dangerous places for patients. That my internal conflict regarding my concerns for residency training is not isolated to my hospital, and that there are people who not only believe this is wrong, but have dedicated their lives to making a change…(continued here)

From Dr. Lauren Sontag — Shabs recent post, How Can We Teach, regarding her QI project standardizing an appropriate informed consent discussion. She says several times that we need to put “patients first.” It warms me from within to hear this; I was already going to put up a little post about that very idea. I had the great fortune to go to medical school at the Mayo Clinic in Minnesota, and the most important thing I learned there was this philosophy: the needs of the patient come first. When we believe this and act upon it, we have the courage to address problem behaviors among our peers (and even our attendings and consultants!). We find the moment to sit down instead of hovering near the exam room door and we don’t accept the status quo. Consider it as a mantra for yourself and something you teach others!

From Dr. Stephanie Wappel — …It is so easy to become jaded in medicine, especially as a resident, and this is exactly what I needed at this point in my life to reinforce why I went into medicine in the first place: for the patient.  I’m making a personal commitment to myself and to everyone here at TSRC that I am taking this home and will implement more patient safety measures and quality improvement at my home program…I am going to start with resident education because I feel like this is the greatest need at present. We can each make a difference as long as we keep our eye on the common goal which is the health and safety of the patient…(continued here)

Collateral Damage: Take Two

“Doctors love to patronize and dominate. Their arrogance and indifference to the philosophy of informed consent is widely known. Surprisingly, most residents and doctors in teaching public hospitals tacitly endorse such reservations against information sharing. To most of them getting informed consent is a needless nuisance, to be delegated to a raw resident whose sole responsibility is to get the patient’s signature on the dotted line.”
Issues in Medical Ethics Volume 8, Number 4, October-December 2000…and Chapter One, Page 1 of Dan Walter’s book titled Collateral Damage

Walt Kelly, 1970

Walt Kelly, 1970

It has only been a few weeks since reading Dan’s book – yet I felt compelled to go back this weekend and read sections of it again. Since medical school, I rarely read something–even the Sunday paper–without a yellow highlighter in my hand, a side effect of the competitive paranoia instilled in me during medical school. I went back this weekend to the sections I had highlighted in Dan’s book, and found the quote above, right up front – Chapter One, Page One. I understand and appreciate why Dan purposely chose that quote to open his book.  I also knew why I had highlighted it a few weeks ago…long before I had finished reading Pam’s story and all the research Dan so eloquently presents  on the “cardiac ablation business”.

I had highlighted this section because that opening paragraph took me back to last summer, and our Telluride Patient Safety Roundtable and Resident Physician Summer Camp. Resident physician leaders from across the country spend one week immersed in patient safety with a major focus on open and honest communication. Over a three-week period during the summer, almost 100 residents and health science students join us in Telluride, CO to learn about important concepts related to patient safety and transparency. Here is a short video clip about the student summer camp, which has organically grown from a roundtable discussion of patient safety diehards and patient advocates over the last nine years into what is now an Educate the Young patient safety summer school. Patients help teach all sessions at the summer camp.

A three-hour session on informed consent/shared decision-making is part of the week-long curriculum in Telluride. At the end of this session last year, Paul Levy (@PaulFLevy, Not Running a Hospital) asked the residents how much informed consent training they had received during medical school and residency. With a show of hands, every resident acknowledged the three-hour session on informed consent/shared decision-making at the Telluride Summer Camp was more training than they received during their entire medical school and residency combined. We all agreed this was a sad commentary on the current state of medical education as it relates to patient centered care. One of our Telluride residents went even further when he posted this reflection on the day’s educational session:

I don’t think that I’ve ever thought so much about informed consent as I did today. A discussion about informed consent to the level of detail that we had today needs to be part of all residency training in the first days of orientation and as refresher training later on in training. All physicians can, and should, do much better in providing informed consent.

Over the years, I have come to know many patients and families who have been harmed from care. It seems almost every story that was shared had a serious breakdown in informed consent, or more appropriately, shared decision-making.  The families of Lewis Blackman and Michael Skolnik, and many others, might have chosen much different treatment courses if all the risks and procedural outcomes were shared with them.

We need to get this right. It is fundamental to ever achieving high quality, safe care.  If we don’t, we will continue to see unnecessary harm, more books like Collateral Damage and more films like The Faces of Medical Error…From Tears to Transparency. As Pogo says “We have met the Enemy…and he is us.”

John Wooden’s Spirit Alive and Well at MedStar Health

This week I again had the pleasure to hear Paul Levy (Not Running A Hospital) speak at a MedStar Health Quality & Safety retreat. Paul’s gentle reminder–that transparency in healthcare is something all of us have to own, not necessarily because someone is watching, but because we hold ourselves accountable to higher standards–was motivating. He quoted John Wooden–the great UCLA men’s basketball coach, reminding healthcare leaders in the room that, “If they haven’t learned it, you haven’t taught it.” As an athlete and coach myself, Coach Wooden has long been a virtual mentor for me. Wooden’s gentle giant approach and his unwillingness to settle for anything but the best effort everyday is an example of excellence in and of itself, but he was also a committed teacher and knew that if his students/players didn’t “get it”, his job was far from done.

Paul’s talk this week also reminded me that leading culture change in healthcare isn’t easy, and requires all of us to recommit to the principles we value–like transparency–even when it’s not necessarily the popular or easy choice. Wooden is a wonderfully invoked example of a leader whose commitment to his own foundational values of hard work, friendship, loyalty, cooperation and enthusiasm, led to unmatched success on the collegiate basketball hardwood.

What is our pyramid of success for healthcare, and can we stand firm–gently, calmly, confidently–because we know it’s the best way to achieve the safest, most cost-effective care for our patients?

And finally, here is a link to a previous Transparent Health blog invoking John Wooden’s spirit–this time around a Telluride Educational Roundtable discussion on the lack of training in informed consent and shared decision-making for resident physicians.

Transparency Begins With Informed Consent and Shared Decision-Making

In the trailer for The Story of Michael Skolnik, Rick Boothman, Chief Risk Officer for the University of Michigan Health System, introduces the film by saying:

I think it’s absolutely critical to understand that transparency begins with the informed consent concept…with a committment to reach a patient on every level and that disclosure…is simply nothing more than a committment to be honest with patients from the beginning and throughout that therapeutic relationship.

Harlan Krumholz, MD, Harold Hines Jr. Professor of Medicine (Cardiology) at Yale University continues the conversation in the trailer by sharing:

We have many patients who are having prescriptions or procedures or large surgeries that they would not necessarily choose if they understood all the facts. And that’s what we’ve got to fix in medicine. We’ve got to make sure that the choices that are being made are completely aligned with the patient’s needs, values, preferences and goals, and they are making the choice. So it’s not a matter of someone coming in and giving them a choice, which wouldn’t be what they would choose if they knew all the facts. We’ve got to give them the facts, and make sure we’re making the choices together that are right for them.

Both Rick and Harlan touch on two key components of Transparency, a foundational concept for high reliability organizations. Issues related to informed consent and shared decision-making are fundamental to any efforts focused on open and honest communication in healthcare. Is there any strength or quality to a therapeutic relationship if it lacks an informed consent process built upon transparency–one that reveals all risks, benefits and alternatives to the proposed procedure or treatment–or fails to have the patient share in the final decision?

True informed consent is a process that begins with a transparent sharing of information – an effective and honest communication between patient and caregiver. Patients should know how many similar procedures their surgeon or proceduralist has performed as well as information on outcomes like infection rates and other complications that have occurred. They should understand what risks are inherent to the procedure and are augmented or reduced by the patient’s current comorbidities and overall health. The provider should understand what risks the patient is willing to take versus attributing his or her own risk tolerance to the patient. But this does not occur as often as it should in the current healthcare system, and it would be interesting to prospectively evaluate how improving the informed consent process would affect outcomes. For example, in Harlan’s JAMA commentary from March 2010 on Informed Consent and Patient Centered Care, he suggests a new and improved informed consent which provides the patient with:

  1. An explanation of the procedure or test
  2. Potential Benefits
  3. Potential Risks
  4. Other Available Treatment
  5. Experience of Your Health Care Team
  6. Cost

What would you hypothesize the results of a prospective study to look like if greater care was taken upfront to ensure the patient understood all of the above, and shared in the decision-making? How would a stronger partnership between provider and patient affect outcomes? Patient satisfaction? Patient engagement? Readmissions?

The lack of training in informed consent and shared decision-making was made apparent during this year’s Telluride Patient Safety Student Summer Camps. Both skills need to be taught to medical students early on in their training and incorporated into the new culture of medicine. More on the state of medical education around this skill set later, but until then, a number of tools and resources are being made available to help patients and providers better understand how they can increase their knowledge in both areas. Dartmouth-Hitchcock is one such resource, and has a Center for Shared Decision-Making which provides information for providers and patients alike. Take a look, share additional resources–we’re in this together after all.