Shared Decision Making, Social Media, Adult Learning, Palliative Care, and Hospice a Marriage Made In Heaven

January 3, 2013 Emily Oshima Lee, M.A. and Exekiel J. Emanuel, M.D. Ph.D published a perspective article in the NEJM on “Shared Decision Making to Improve Care and Reduce Costs” Here is the link.

The authors examined the current state of shared decision making (SDM) and how the Affordable Care Act (ACA) positions and expands its benefits. 

Shared decision making (SDM) ensures that medical care aligns with patient’s preferences and values. SDM applies decision aids to inform both patients and family of various treatment outcomes which in turn improves patient knowledge, minimizes anxiety, improves outcomes while helping to manage cost. It is a win win for patient, HCP, and institution. 

But sadly SDM is under used. The authors point out a study of over 1,000 office visits with more than 3,500 medical decisions showed less than 10% of the decisions met the minimum standard for SDM. Another study showed that only 41% of Medicare patients thought their treatment reflected their preference for palliative care over more aggressive treatment. 

Section 3506 in the ACA (found here) offers funding for consensus-based standards and would certify patient decision aids. Health care providers (HCP) would be eligible for grants in this area to test SDM models and approaches that show savings, improved quality of care, etc. 

The authors point to data that demonstrates SDM reduces cost shown by the fact that nearly 20% of patients who participate in SDM choose less invasive surgical options and the conservative treatment than patients who do not use decision aids. Using SDM for just 11 procedures could yield greater than $9 billion in savings across the nation.

It is interesting that the International Patient Decision Aid Standards Collaboration has evidence-based guideline for certification that includes questions in order to aid patient to gain insight on their values and those values that affect their decisions. All of this includes up-to-date data in simple plain language including side effects and complications. 

I would recommend you read the entire piece. It is short but filled with data, information, knowledge, and recommendations. 

For me SDM is part and parcel of adult learning and social media (SM). I am in no way questioning how SDM has worked, is working, and will work. Nor am I second guessing the data. In my view SDM integrates SM and adult learning to potentiate its benefits. 

The primary principle of adult learning tells us adults will learn when they are seeking solutions to problems they want to solve. Patients facing complicated and confusing treatments are seeking solutions to serious problems. SDM steps into to help solve the problem using aids, questionnaires, and electronic media. And by all studies is successful in achieving outcomes. SDM works and is in fact helping patients solve problems while at the same time solving problems for the HCP. There is nothing to change but, can we add a little something something to improve an already good idea?

Perhaps if prior to the first SDM discussion a short inventory is performed to determine what problems the patient wants to solve, what solutions do they know, what do they think about what they know, and based on that what would they do. This exercise is designed to improve the HCP knowledge of the patient prior to the SDM discussion and aids in focusing the patient on treatment decisions. It also aids in improving the decisions. For the HCP this should be considers a needs assessment for a specific patient on a specific topic. What is determined here is information that can be used to improve SDM. 

Palliative care is an ongoing decision making exercise. In a previous post (here) I examined the role of the palliative care physician and hospice care to improve patient care. SDM improves this process and fits so well with the entire continuum of palliative care through to hospice. SDM should be part of all cancer care and should be especially valuable with those patients facing a terminal outcome. SDM is a perfect tool in palliative care but would benefit from doing the type of needs assessment mentioned above and ongoing measurement of change in patient attitude and problems. The trajectory of the disease is one that requires continual learning and discussion. 

Finally, social media can aid this entire process through connecting of patients with each other and with their HCP. These communities of sharing and exchanging knowledge and information focused on a medical need can underpin and become the foundation for understanding those problems the patient wants to solve as well as the the HCP has regarding patients. Social media becomes part of SDM  strategy as a tactic to engage more patients with the process of decision making at a more robust level. 

SM is a tool a tactic whose application is critical to achieving goals through a strategy. SDM offers a very clear set of goals and path to achieve better patient outcomes. SM can be integrated into SDM to improve the process across the board.

Creating A Teachable Moment for Patients In Palliative Care and EOL

Wow is all I can say to a study published in AMA Internal Medicine titled “Early Palliative Care in Advanced Lung Cancer” by Yoong, Park, Greer, Jackson, et al. You can find the abstract here. (Sorry but it’s behind a pay wall.) This article should be free. The data and the recommendations it presents is a crucial component in moving more patients toward a better understanding of palliative care. Limiting distribution to only healthcare professionals (HPC) limits the number of patients and their families from understanding its value and benefit.

This study extends the work of Jennifer S. Temel, MD whose article “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer” in the August 10, 2010 NEJM offered a very clear picture of how ” early palliative care led to significant improvements in both quality of life and mood.”   Yoong stated objectives were: 1. Identify key elements of early palliative care (PC) 2. Explore the timing of key elements, and 3. Compare the content of the PC physician (PCP) and oncologic visit. They were looking for the important elements of the clinical visit with the PCP that improved outcomes. This study found that early PCP visits focused on symptom management, strengthening coping, and prognostic awareness. While later and more crucial visits have a distinct set of features for PCP involvement and enables to oncologist to focus on cancer treatment and management.

My enthusiasm about this article and its data is centered on the fact that communications, relationships, and rapport were early elements established between PCP and patient. These elements I believe drove the results. Communications, relationships, and rapport are the cornerstones of learning and reflection. Learning and reflection are critical to changing behavior. In addition communications, relationships, and rapport establish a baseline for the more difficult discussions such as end of life (EOL), resuscitation preference, hospice, and change in treatment.

The authors noted that the PCP visits centered on psychosocial aspects of worsening disease and how that effects both patient and family while the oncologist focused more on the disease, its treatment, and management. The authors further noted that they observed the content of early to later PCP visits changed to match the disease trajectory and did not follow a checklist. This seems to match the reality that guidelines in generally are not applied to all patients. And I see it as pointing to a path in managing palliative care specific to patient needs. We all face death and dying differently not one guideline will serve all.

One data set that the authors note is that the PC clinicians focused on establishing a relationship, which leads to identifying needs and preferences for information (knowledge transfer) early. Later in the disease trajectory when treatment was failing and the disease progressing and discussion of EOL was initiated that relationship was drawn upon. Further the authors noted there was not a presumed discussion of EOL care or hospice when the PCP was brought into the clinical picture. It does not support the argument that the PCP early on will bring EOL and hospice up.

Early visits to the PCP, patients and family and the establishment of a relationship drives continuity of care and greater familiarity with the issues and needs of patient and family on both sides. This improves the quality and reflection surrounding later and more complex disease issues such as change in treatment, EOL, and hospice.

This study is within my area of interest palliation, hospice, caregiving, and adult learning. This study presents a place and time where the application of adult learning will drive understanding and knowledge transfer. With the reality of the patient status and the knowledge the PCP has there exists a ready-made value exchange; patients are seeking solutions to problems and the PCP can directly address that. But to be the most effective the PCP needs to understand what are the patient and family gaps in knowledge. What can be done to improve that relationship based on knowledge transfer, strengthen it, make it work better to produce more valuable outcomes?

First, patients as all adults will learn only when they are seeking solutions to problems they want to solve. Patients who are entering palliative care are facing the most difficult problems in life but many may be unable to characterize or articulate those problems. What can be done to aid them in such a way that they can better and more quickly identify problems/needs to the PCP or oncologist? In addition what can be done to aid the PCP or oncologist to improve his/her knowledge in order to maximize the benefit of communications and rapport to create a true value exchange between patient and physician? The authors are looking to at an additional study to identify ‘salient elements of clinical encounters and nonverbal communication that occurs between patient and PCP physician. If we understand the problems these patients are seeking to solve earlier and more clearly we can better manage them and match them to the trajectory of the disease. We may in fact be able to circumvent the need to monitor nonverbal communications, as a tool to ferret out knowledge about patient needs.

Creating a simple and short inventory that the patient and the caregivers complete independently at the first visit would serve the long-term needs of both. And this type of learning is bidirectional were both PCP and patient exchange knowledge that creates reflection on action. I would recommend creating inventory questions using the authors Key Elements of Palliative Care Visits: Relationship and rapport building, Addressing symptoms, Addressing coping, Establishing illness understanding, Discussing cancer treatments, EOL planning, and Engaging family members.

This inventory/needs assessment tool first and foremost identifies problems the patient and family are seeking solutions to. Once it is completed the difference between patient and family would be determined first. These differences are gaps that may or may not need to be closed but clearly need to note and managed because of the dissonance it may create. Answers to the questions by patient will be used to focus discussion and what information to bring to the table and how that information changes behavior and attitude. Keep in mind the completion of this inventory goes a long way to opening learning receptors for the patient as well as the PCP. This ‘needs assessment’ serves as mile markers along the disease trajectory and can be easily updated.

Yoong, Park, Greer, Jackson, et al. have served up proof that palliative care works, that creating rapport and a relationship with palliative patients offers benefits and outcomes that improve quality of life, EOL planning, and the ability of patient and family to face decisions. Improving the ability of the both the patient and the PCP physician to determine needs and problems will go a long way to improve palliative care and EOL decisions. We have all the clinical tools in place what we to do now is create those tools that will allow for higher quality communications and rapport during this darkest of times for any human. 

My View and Experience in Caregiving for the Dying

This was originally posted on a discussion group Coping – Caregiving as life passes me by at Virtual Hospice Ca. It is my view of caring giving as I lived it. 

Pudding, Missy 2012 and everyone: I relate very strongly to this discussion the comments as well as the emotions. My wife died 08/07/2011 after two years in treatment and ultimately three weeks in hospice. 

Being a caregiver is hard physically and emotionally but it was a job I closed my business to apply for. How did my counselor at put it, Donna put her disease in my hands, she gave it to me to manage and guide her. And this was the strongest most independent woman I have ever met. I was honored to be there for her and to have the chance to move our relations to new deminisions and places. But the truth be told toward the end I would come home from my part time job and just sit on the stoop afraid to go up and see the disease see the pain. But I did it knowing it was my job my love my goal my place in our lives. Today I still miss her so much especially since her birthday is Thursday Feb 14. But I know she had me and that what I did was love at its purest. 

One final thought on hospice. It was not for her alone it was for me. It gave me the chance to surrender the caregiver burden and bask in the final time together. And also it was the place for me to gain comfort and care from an iamazing staff who saw me as a patient as well. At the same time I could apply my knowledge of medicine and healthcare to ensuring she had the care she needed. 

In the end caregiving is a rip tide of emotions that will drag you out to sea but it is a place to plant a flag and take a stand in the name of love. Hospice is that as well.

Medicine is a Service Profession: Leveraging Patient Knowledge

Drs. Kesselheim and Cassel published a perspective piece in the NEJM “Service: An Essential Component of Graduate Medical Education”. Here is the link to the article abstract. Sorry it’s behind the pay wall. L

In my mind the first sentence ties to social media and current patient behavior to healthcare while defining service, “Medicine is a service profession, and commitment to service is a hallmark of humanistic physicians.”

First, the primary point the authors make is that Accreditation Council for Graduate Medical Education (ACGME), (which provides oversight for residency programs) recently completed a survey that asked about evidence of excessive scut work. ACGME framed the question “How often has your clinical education been comprised by excessive service obligations?” Service is completing a chart, dictating a letter and revising, entering orders in a chart, etc. The authors present a cogent argument that the ACGME question asks residents to give personal interpretations of what service is and what education is when in fact service is part and parcel of education. Service is not counter to education.  Service is key to graduate medical education as witnessed by practicing physicians. They know from their years of practice that service is an important teaching tool because it is more likely that ‘scut work’ is solving problems. Solving those problems creates reflection, which is how humans learn. This optimizes resident and physician education with patients.

In a larger context of what is happening with patients today online, and in social media (SM) behavior service has a direct and valuable connection to what it means to be a “humanistic physician”. As we know, more and more patients and caregivers are using the Internet to learn about health, healthcare, and disease specific knowledge. They are becoming advocates for their health for themselves with their healthcare professional (HCP). They are asking questions, making HC decisions, and are pushing the boundaries of HCP and patient interaction. As that old troupe says “Enquiring minds want to know.”

I can’t think of anything that witness’s the power of service and humanistic behavior more then the HCP helping patients become more knowledgeable in managing their own healthcare. Service is not just tending to the clinical issues of a patient but improving the knowledge of those enquiring minds. What can we do to drive the person seeking information about their healthcare and change information into knowledge? Have the HPC provide it and help to make make it part of improved patient behavior.

The HCP cannot be part of this change without accepting and embracing service on what some consider a horrific level, patients asking annoying questions and making requests. So as the authors argue it is key that we don’t paint physician service ‘scut work’ with a wide tar laden brush as non-education but put knowledge and learning into a bidirectional service driving outcomes beyond the dx and script. We know that patients who are involved in their healthcare with their HCP use less physician time and have better outcomes. it is knowledge and sharing this service I call knowledge transfer that drives this change.

The world is changing and HCP needs to change as well and must accept a new vocabulary where service is not scut work but learning. Where the HCP is driving knowledge and not treating it like dollops of sour cream on a baked potato. We are seeing it work on sites such as Howard Luks, MD, his Twitter timeline and more. Howard and thousands of others are taking service and making it learning driven and this is the brave new digital world.

My final thought on this comes back to my general attitude toward healthcare and learning. Just because you create a web site, have a Twitter account, or post on Google + it does not mean you have a set of goals/objectives or a strategy (see this on strategy) to service your patients and improve their knowledge.