Communications and sharing of information between HCP (healthcare providers) and patients is a fundamental building block of good patient care and key to improving our healthcare system. The gold standard for this type of communication is shared decision making (SDM). SDM is defined as a process or interaction with patients who wish to be involved with their HCP in healthcare decisions or patients and HCP making decision based on best available evidence.
If we weigh SDM against the patient empowerment movement and the fact more and more patients are taking on greater and greater responsibility for the management of their own healthcare, we are seeing small but important change in healthcare.
That being said a gap exists between patients needing information about palliative care and receiving information about palliative care. In some cases this gap results in patients never receiving appropriate palliative or hospice care.
Palliation and Hospice is not an easy discussion for a HCP and patient to have individually, let alone together. So to that end I am going to mashup my communications, advertising, marketing, CME, and adult learning to see if I can present a way to close that gap. I believe until we take lessons from pharma and consumer marketing/advertising groups we will always struggle to improve the communications between HCP and patients (and take the current movement to the next level).
Palliative care works; because of its effectiveness, we should be offering at least the discussion of palliative care at diagnosis. The Journal of Clinical Oncology published the following; ‘American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care”
While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, quality of life, survival, healthcare services utilization, and costs) and on society, should be an area of intense research.
The Center for the Advancement of Palliative Care and the American Cancer Society commissioned a study 2011 Public Opinion Research on Palliative Care. The findings are fairly dramatic:
* The public is totally unaware of palliative care, what it is, what it offers, and what it means to both patient and caregivers.
* Physicians may not be referring patients to palliative care early enough because they can’t differentiate end of life care from palliation or they believe they are delivering palliative care.
* Information sharing between patients and physicians is a huge issue. Almost 60% of survey participants felt their physician did not provide all treatment options and/or choices. Once educated about palliative care 92% say they would consider when faced with terminal illness.
Diane Meier, MD in April published Health Affairs Blog “Learning from Amy Berman: Barriers to Palliative Care and How We Might Overcome Them.” In this post, Dr. Meier tells the story of Amy Berman Narrative Matters and her experience faced with inflammatory breast cancer.
Dr. Meier reiterates the data from the 2011 Public Opinion Research and presents recommendations. Her recommendations are excellent:
* Educate the public about palliative care and the benefit it offers
* Make palliative care a key measure of quality and require it as a core for quality care for seriously ill patients
* Retrain physicians and medical training to include palliative care education and replace outdated practices such as requesting support from palliative care teams when the patient is within hours of death.
New York State (NYS) passed the Palliative Care Access Act which requires physicians to to provide access to information and counseling regarding options for palliative care to patients with advanced life limiting conditions. New York physicians are not doing this. We have yet another gap to close. That makes two gaps that need to be closed, knowledge and action.
I approached this problem with an eye toward education and marketing. We need to better understand why this gap exists and what the barriers are. Simply presenting and educating will not close the gap because:
* Physicians do not believe there is a solution to the problem. For example, “why bother to learn about palliative care since it is only appropriate to end of life and so does not address my current problem of how do I deal with my current patient’s serious illness?”
* Resources are not available to learn the solution to the problem. This can mean both generally available resources (e.g., text material) and personal ones (I don’t have time to learn about palliative care).
* Physicians believe learning the solution will not change MY LIFE in desirable ways. For example, “Learning about palliative care will not reduce the number of crises I’ll have to face with patients like the one I’m dealing with.”
The goals I set were:
* Increase the number of generalists (primary care) who are meeting the minimum requirements of the NYS Palliative Care Information Act
* Increase the number of NYS residents with serious illness receiving palliative care.
* Increase the understanding by corporations in NYS of the need for a state wide palliative care education initiative.
To achieve these goals I recommend the following:
Small group learning
When you compare formal didactic CME formats (e.g., lectures or presentations with minimal audience interaction or discussion) with interactive formats (e.g., role-playing, discussion groups, hands-on training or problem-solving) didactic formats fail to achieve success in changing physician performance or healthcare outcomes, while interactive formats are generally more effective in changing those outcomes.
In order to most effectively close this gap we are recommending case-based small-group learning. This type of instructional design reinforces behavioral change through application of new knowledge to current experiences. Ultimately the learner reflects on how new knowledge can be applied to current cases (i.e., problems). Case-based learning in small groups is proven to be motivational. Learners become more actively involved through sharing and comparing experiences with colleagues
Digital Based CME
Since small-group learning will not yield high numbers of learners we are recommending that case materials and guides be assembled for online and mobile learning. The case-book will be available for download and a video of a facilitator will be created to guide the learner.
In the last 2 years, there has been a 100% increase in electronic CME activities, and 42% of all continuing education credits are received from electronic or online sources. Most physicians are connected to the internet and/or use handheld reference devices. The demand for immediate, accessible, relevant, and focused CME activities continues to grow as the demands on physicians’ time increases. Thus, many busy physicians find value in flexible, asynchronous learning activities that can be accessed anytime, anywhere. It should be noted that the future of learning online is through social media and the ability for learners to share and learn with peers. Portals, websites, and blogs remain important as anchors for information and content but social interaction is where the future of the web and learning is going. When you deconstruct learning there are two fundamental elements that drive learning. It must be affective (the learner wants to solve a problem) and it must be social. Social media solves 50% of that. It is up to us to create an affect through understanding the problems that need to be solved and giving the learner the desire and place to learn.
Funding and Public Awareness
Traditional funding sources for CME will not be robust enough to carry this program and meet its goals. In my view any funding initiative should be part of a statewide campaign for palliation awareness and the benefits it offers all residents and employers. Linking the goals of palliation to a statewide corporate call to action would accomplish three goals. First, it would put the awareness of this program and the need for palliative care education in a media spotlight. Second, it would be an opportunity to educate corporations about the value of this professional education for their employees and families. We know that palliative care lowers healthcare costs and reduces loss of work for caregivers. Support of this educational program will have direct economic benefits to NYS corporations. Finally, it would move funding away from the fits and starts of traditional CME.
Let me end this with a quote. I am currently on a couple of support group sites. I posted about Donna’s passing and the excellent care we received in hospice and how though we never received a discussion of palliation prior to hospitalization her treatment was palliative. I asked the question if anyone thought palliation and hospice could have been offered sooner. Well here is a reply which says it all. Albeit I don’t know the details but the emotion is as palpable as the tragedy:
“Mark, dude. HELL YES! I tried so f***** hard to get these services sooner. Three hospices denied him within 1 month before his death. Palliative care was offered three days before he died, this made me laugh at them. His suffering could have been brought down to a bearable level for him and us if they had only put him on hospice or palliative care.”
The greater our effort to improve communication not just in this area but all areas the great the change we will see in healthcare and outcomes.