Discussing What We Don’t Talk About and Why We Need To

Because we age we will all face the possibility of serious illness. The single most critical and important aspect of this process is to identify how we want to live our lives and how we can give the gift of life to our family and ourselves. What do we need to do to make every day a good one, as we define it, and have a plan to achieve that for as long as possible. 

In 2011 Center to Advance Palliative Care with the American Cancer Society completed a Public Opinion Research on Palliative Care. The data shows that biggest concerns for patients with serious illness:Doctors might not provide all of the treat options or choices available

  • Doctors might not provide all of the treat options or choices available 58%
  • Doctors might not choose the best treatment option for a seriously ill patient’s medical condition: 54%
  • Doctors do not spend enough time talking with and listening to patients and their families: 50%

Discussion of this topic is critical because I believe it can improve how patients and family receive timely and accurate information regarding palliation and hospice care and what it means for quality of life. This discussion will change patient concerns and questions about end of life care and benefits of palliation. It will open a dialogue and offer touch points to examine our beliefs. It will turn back the fear. Without this film we cannot begin to change how we want to live our life during serious illness the associated benefits for patients and family.

Simple the goal of an open and far ranging discussion is to create a platform that improves decision making during serious illness between:

  • ·      Patients and family
  • ·      Healthcare professional
  • ·      Patients and healthcare professionals

We should strive to make it easy and productive to discuss palliative care, end of life, and hospice. I want to improve care, time, and quality of life.

Expanding the Market for and Use of Social Media

The past five years has seen a huge growth in healthcare interest and knowledge seeking behavior at the consumer level. This has been driven in part by the vitriolic discussion and debate over the Affordable Care Act (i.e. Obamacare), online, and digital availability of healthcare information, social media, and a very active healthcare professionals using online as ways to communicate and improve care.

I want to  look at two issues. As more consumers and healthcare professionals step into a more active role in their healthcare through social media, online, communities, etc. are we expanding this audience? And are we seeing improvement in outcomes?

A recent article titled “Mind Blowing Digital Health Statistics and Trends” the data they are sharing is quite frankly mind blowing. Here are some statistics:

  • According to recent study, the number of adults in the US (ages 18+) using mobile phones for health information grew from 61 million to 75 million this year, while tablet adoption nearly doubled from 15 million to 29 million.
  • 64% of healthcare extenders believe that technology has impacted the quality of interaction with patients
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  • 80% of Internet Users look online for health information
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  • 32. 20% search for health related content on mobile devices
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  • 33. 23% use social media to follow health experiences of friends
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  • 34. Health related Google searches are up 47% from last year
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  • 35. 81% of consumers click on a sponsored link when looking for health information
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  • 88% of physicians would like patients to be able to track or monitor their health at home
  • 1 in 5 internet users have gone on line to find someone who shares their health concerns and 1 in 4 with chronic conditions

    We can add to these trends the proliferation of branded Web site such as Pfizer’s Hemophilia Village. Which are creating patient centric communities of practice. Places where patients sharing similar illnesses or needs for knowledge can share and learn from like-minded seekers of information.

    I would characterize these trends as decentralized with many small segments identifying with specific issues and problem solving. If you follow me or have seen my Tweets you know I advocate that adults learn when they are seeking solutions to problems they are having. This can include family members as well.

    Are we seeing?

    • Greater illness associated with aging Americans: Need to solve problems
    • Easier access to healthcare knowledge and information: Easier to solve problems
    • Greater interest in improving our collective healthcare ‘footprint’ starting at a younger non ill state of health: Wanting to avoid problems

    I would present that it is a combination of all three but, the most important consideration is are we seeing a change in behavior and outcomes? Are we turning a corner on self-management of healthcare? Are we driving down the cost curve? Do we have a more knowledgeable public? How can we expand this segment to do two tasks, add more consumers to self-driven learners and help those seeking knowledge to dive deeper and change behavior?

    Our next task should be to wrap SM around smart outcome driven strategies while measuring outcomes to see which strategies work the best with which goals.

    Drilling Down with a Digital Strategy

    Last week Digital Tonto has a very timely post ‘4 Essential Question to Ask About Your Digital Strategy’ since the #hcsm chat on Sunday’s generally addresses digital issues within social media without speaking directly to strategy issues I thought I would briefly review Greg’s post and bridge to healthcare SM. You can read it here

     The first question Greg presents is ‘What is my Business Problem?’ The question here is how can the needs of consumers be done ‘better, cheaper or made more accessible or more enjoyable.’ Those who know me know that my primary tenant regarding marketing and communications is applying the principles of adult learning to the consumer and understanding what problems they want to solve. If we know the problems the consumer (patient) wants to solve we can better speak to them directly at a higher order of interest. ‘You talking to me?’ Greg also makes a point that I have been hocking; any digital solution needs to work with other factors as in value, convenience, culture, and market constraints. In short the strategy.   

    The second question Greg asks is: ‘How Can Digital Technology Help Me Solve That Problem?’  Key to the answer is to look at banking in person as in depositing checks; it’s a pain in the ass. Chase solves that by allowing customers to deposit via Mobile Phone picture. But as Greg rightly states it is not stand alone, it involves the entire organization. I agree SM (digital technology) is not stand-alone it must function within the organization and within an identified strategy.

    The third questions asked is: ‘How Can Digital Technology Open Up A New Opportunity?’ Digital technologies are not just used to create efficiencies they need to create value and transform how business is done. Or how health is delivered.

    Greg’s final question: ‘Has Your Business Gone Digital Without You?’ Leave us not forget that we are finding it harder and harder ‘to see where analog begins and digital ends’. And all of this is moving from the keyboard and mouse to the phone. Bottom line your business strategy needs a digital strategy and for me the key word here is strategy and I would add that that digital strategy should work with analog, face to face interaction, etc.

    What I believe we are seeing is a split screen in healthcare and social media. On one side are SM strategies that are integrated and working with clearly identified strategies as with Mayo Clinic and other large institutions. These institutions are working daily to make SM solve HC problems patients and institutions are having. On the other screen there are individuals and institutions just throwing SM on the wall to see what sticks without a strategy or clearly defined set of goals. In either case there is a growing and deliberate movement toward integrating HC, SM, with marketing strategies that grow the business. And to be clear when I say grow the business I am not only referring to size and revenue but to outcomes and changes in behavior for both patients and HCP.

    It is my opinion that larger organizations are integrating SM well with their marketing strategies. What I would add is that we need to move SM from the institutional level to the physician, patient, office, and home level. But each needs to identify a set of goals and simple strategy that can be executed and measured. Plan, execute, and measure.

    Think of this as P&G would. P&G has a national and in some cases a regional strategy. That strategy differentiates the brand, establishes a position, and communicates a message. But when you go into the store, shelf facings, packaging, pricing, etc. are all local pointed to tactics within the larger strategy. They promote, expand, extend, execute, and bring brand to life at point of sale with the consumer in a personal way. Healthcare and digital should work toward that face to face personal integration.

    In healthcare the need is there to create a value connection between the parties involved and to leverage that value over the entire life of all parties. It should be done at both the macro level and the micro level. One patient one HCP www.MyMD. The strongest long-term value relationship is the patient and the HCP

    Why Some People Should Never Have a Pet

    A dear friend and IT nerd who has bailed my ass out 101 times put this post up on FB. This just speaks to why idiots should not have dogs EVER. 

    So my wife says as she walked the dogs last nite she saw some guy hitting his pit bull dog with the leather part of the leash. She yelled at him to stop and besides the usual profanities of ‘mind your own business’ he said he was punishing the dog for eating garbage. She said the dog just stood there and took the punishment, poor thing. As she moved on, he started following her and even said “I’m

    not even hitting hard!” and this time DEMONSTRATED on the dog again, while it was just standing there doing nothing. THIS PIECE OF SHIT doesn’t even get what “REINFORCEMENT” means… now this dog sees “High Energy/Stress” + “Just Standing Around Next To Master” = “Wack on the head with leather belt.” Yah, the poor dog might not be a *bit* more on edge the next time these ingredients mix together. Tell me these pit bull owners aren’t just damn asking for it when their dogs go off the deep end? OMG what a scumbag.

    Are We Not Men? We Are Devo! Or Customer Driven Healthcare not Product Driven

    NEJM August 29, 2012 published a perspective by Asch and Voipp titled: What Business Are we In? The Emergence of Health as the Business of Health. They present a cogent argument that healthcare today is similar to Eastman Kodak who after 131 years in business filed for Chapter 11 protection in the US. Kodak had an opportunity to create digital images and meet what customers wanted. Well they didn’t. Our healthcare system is in the similar throws of failing to read the handwriting on the wall. Are elements of our healthcare system behaving similar to Kodak, ignoring consumer wants and needs?

    Our healthcare system largely focuses on producing healthcare, not health. Consumers want health and healthcare is a means to that end. It is the system we have in place, it is the fact of life and death in the US. Our system is designed around writing prescriptions, performing surgeries, and imaging. The authors rightly state this is how we get the health we want, through this system. They also go on to present the fact that our current system looks at health and disease as if it were entirely biologic and not in reality driven by social determinants, economics, personal behavior, social disparities, environmental influences, geography, etc.

    Add to that the simple fact we are now in an age of outcomes. Never before have we had the ability to identify, measure, and report outcomes from entire systems and populations down to a single physician. We know what is working for whom and are making healthcare decisions based on that knowledge.

    Finally the authors point to the fact our healthcare system is now testing costs and non-payment for preventable readmission or payment for bundled care. Outcomes and payments will be linked going forward.

    In summary the authors state that unlike Kodak who were clueless about what their customer wanted successful physicians, hospitals, and provider systems will ‘shift their activities from delivering health services within their walls toward a broader range of approaches that deliver health’ They will in effect answer this question, ‘What do we need to do to move from a product-oriented industry to a customer-oriented one?’

    Currently healthcare is about selling a product based on a response to a need, an illness an accident. It is a reactive model built less on customer’s needs and more on a situation. The system orders more tests, lowers costs, and drives utilization. It is like a broker churning your account. This strategy is inherently going to fail because of the changes listed above. The system is not looking at what customers want and where the puck is going to be but what is an immediate point of purchase behavior. The system is built on more use greater the revenue and ultimately profit.

    The authors speak to the need for organizations and providers to look at wellness programs and other offerings that move the hospital away from being a provider of products to meeting customer needs.

    In my opinion there are two additional factors that point to a direction that becomes a solution to the need to become customer oriented. We know the numbers. A larger portion of the adult population uses the Internet to search for health topics. To solve a health problem a greater number of patients and people are searching, chatting, joining, sharing, etc. online health questions, knowledge, information, etc. They are integrating this new knowledge into their healthcare corpus compendium. Some may be using it with their HCP but it is more likely their efforts are thwarted or fall on deaf ear. But they remain steadfast in their access of healthcare knowledge, data, and information.

    Healthcare can get into a simple customer oriented business: information and knowledge transfer. Each hospital, each physicians office, each clinical department, etc. can become resources for knowledge, information, and data. Each and every one of these parts within healthcare can become a resource that customers (aka patients) can turn to, rely on, and trust.

    Knowledge is power and that is not limited to who has the knowledge but, where that knowledge resides, how it is transferred, what its context, and how the receiver of that knowledge uses it and where. This model becomes the single most important connection driving exchange of knowledge and changing the dynamic from providing a product to providing a service based not on need but a relationship.

    PS: A great analysis of content and publishing to support this idea from Digital Tonto. 

    What If We Gave Ribbons for EOL and HPM?

    Wednesday night during the hospice and palliative medicine (#hpm) chat there was a great deal of discussion on how to improve the HPM message to achieve wider acceptance. The question was; why aren’t more people supporting/using/talking HPM? It was a veritable Mumbi traffic jam of brain cells crashing into one another and tweeting ideas. There were the headlines, tag lines, messages, data, and a slew of tactical other recommendations. Some were good, some were not, overall the earnestness of those wanting to fix this demonstrated how critical it is that we once and for all get a handle on HPM and bring its benefits to more.

    The literature is filled with references, data, studies, support, and more for the value of HPM. There is no shortage of organizations and groups promoting and advocating for HPM. We know the data. But we also know the other data, neither HCPs nor patients want to talk about it or learn it. Once they do understand it they are more likely to discuss it.

    We have Death Cafe’s  and Death with Dignity The CAPC is an amazing resource for HCPs. With all this and more in place and the brave new digital world we live it should be a slam-dunk to change how we view, use, and accept HPM. The reality, it’s moving at a glacial pace. What can be done to change that?

    It’s time to role out P&G, MickeyD’s, Big Pharma, etc. marketing departments and attack this problem as if we are selling soap on a rope. I will lean heavily on Greg Satell at Digitaltonto. His keen marketing and digital insight will help guide this discussion.

    Last October Greg posted ‘The Post-Promotional Paradigm‘ which looked at how consumers and brands interact in the digital era. He presents three pillars of the brand (HPM for this discussion) awareness, advocacy, and sales.

    Yes I said sales meaning physicians speaking about HPM and patients understanding it and adopting it. Have we been converting awareness to uptake? How efficiently are we converting awareness to use to avocation? I am not sure I’ve seen the data that shows growth in both understanding and use of HPM between both HPC and patients. We need to measure change to know if what we are doing is working and how to adjust it.  

    Awareness is clearly critical for HPM. To create awareness you can spend money or you can be clever. People are aware but the accuracy of that awareness is sorely lacking and misguided. Greg states rightly so that consumers are likely to buy your brand if they are familiar with it. With HPM they need to be comfortable with it but most patients are aware of the wrong message. You need to convert misinformation to good information and that effort is harder than simply raising awareness. You need to replace misinformation with accurate information.

    Advocacy is not simply someone speaking well about HPM. It is a complex interrelated process. We have advocacy galore with all the chats etc. but it is our echo chamber. Advocacy as Greg sees it is part of awareness. Those who come to understand and accept HPM need to advocate for it and means a sea change in peoples attitudes. It means they must accept it for themselves and then speak up for it, which currently has a degree of discomfort.

    Greg further presents a framework that fits with HPM. It is seed, convert, and share. Seeding is the action of non-paid media. We seed messages on FB, G+, Twitter, Blogs, etc. It and of itself is only part of the an overall strategy it needs the addition of paid media to succeed. For our discussion of HPM paid media can be as minor as local hospices placing small space ads.

    Share is where brands or those of us advocating HPM share our messages with others who advocate similar messages or messages within the same ballpark. I would agree with Greg here sharing as we currently do it does not have the consistency of message we had all hoped for. It is not reaching who we need to reach. We talk to ourselves and share with those who already have similar views. That may be changing.

    Greg ends his article by addressing the fact consumers (i.e. learners) haven’t changed how they talk to each other. We are assuming that we should stop promoting in favor of conversations. We assume the Internet and social media will help change awareness and understanding of HPM. In reality we need to build a more traditional approach to promoting and marketing the benefits of HPM.

    Okay I’ve given you marketing 101 according to Digital Tonto. This is as helpful as tossing URLs on Tweets. Here is how I would apply Greg’s views to HPM. And one caveat this is marketing and communications, there is not one yellow brick road but a super highway to sell HPM.

    Humans are little tiny hope machines. They exist for hope, for belief in the future and life. That is at the core of why HPM is not selling like the strawberry pancakes at IHOP. Hope trumps EOL. We have an infinite loop of ribbons and survivor stories. People are donating to find cures and data shows improved survival rates. Our war against cancer is working. People are no longer shunning the word cancer. HPM and EOL pales next to this. Both have huge benefits. I won’t go into that since I’ve posted it before here and other place. HereHere

    Most people consider HPM as the Darth Vader of medicine. It needs to become Luke Skywalker. So we have to change perception, gain awareness of a new HPM, position it as a benefit to patients, family, and HCP. We need to create awareness, advocates, and measure change. We need a SM message consistent with a paid message. This is a tall order for groups that are budgeted poorly, if at all.

    The steps I would take would be: shock/awe, convert awareness, educate, create knowledge base, reinforce understanding, and measure uptake. I will speak to the first two and perhaps address the others later.

    Shock/awe is my way of saying we need to dramatically move HPM EOL out of the musty dank dark trunk in the attic. It needs to burst into the sunlight. So to that end I propose we create a ribbon for HPM or EOL a black ribbon with a smile face. How dramatic would that be? The uproar in the media, the net, and among groups who have ribbons galore would create a natural platform to speak from and if enough media runs with this awareness of HPM would grow. Yes it could backfire and just reinforce the HPM EOL bad press or no press. But as Neil Young says, “It’s better to burn out than fade away” I double dog dare any group out there to have a HPM EOL fun run with ribbons. Money donated goes to supporting palliative care and education. Make your local media sit up and take notice. I’m a bit glib here and I recognize messaging of this is critical but the concept is big and bold. I’m open to other ideas within this context.

    Following shock/awe is converting that awareness into useful knowledge by consumers. Once you create the drama you need to provide knowledge base for people. Here is where you apply traditional marketing with digital. Continue the discussion.

    So do we politely talk and advocate for HPM and EOL? Or do we step up and tackle it head on with aggressive and smart marketing? HPM and EOL is not something you are left with it is a decision, a choice as critical and evidence based as any treatment option with well defined outcomes for everyone.

    What To Do With 5000 Hours

    July 5 NEJM published an article titled ‘Automated Hovering in Health Care- Watching Over the 5000 Hours’. 

    The primary premise presented is that the US is ‘a reactive, visit-based model’ where patients are seen when they become ill, are hospitalized, and as outpatients. Besides being expensive and not driving proactive improvements in health it fails to address the 5000 hours per year that all of us spend outside of those healthcare encounters. It is during those 5000 hours where we engage in healthy or not behavior.

    The importance of those 5000 hours is being addressed with various initiatives focused on employers and employee wellness programs, medication adherence, transitional care, and identifying the highest needs patients. These programs engage personal hovering, which make them expensive and difficult to scale up. A multi-center telemonitoring trial with heart failure patients showed no effect on outcomes of rehospitalization and death.

    The authors presented three developments where automated hovering offered promise. The first is payments for outcomes as well as non-reimbursement for preventable readmissions. The second is the application of behavioral economics and the human desire to want better health and know what needs to be done to achieve it by applying motivation and financial incentives. And finally new technologies such as cell phones, wireless, and the Internet offer new ways to hover during those 5000 hours at a lower cost.

    A study using a home-based pill dispenser connected to a lottery system offering a chance to win prize money reduced the rate of incorrect doses from 22% to about 3% in patients taking warfarin. Another study randomly assigned difficult to control patients with diabetes to receive standard care or mentorship from another patient who was successful in managing their glucose levels. After 6 months glycated hemoglobin levels were greater than a full percentage point lower then those in the control group.

    The authors conclude by identifying targets fro automated hovering. Those include conditions whose management is dependent on individual patient’s behavior, medication adherence in hearth failure patients, management of diet, exercise or weight. Key to this success is how to make hovering heard over the din of social media, TV, and those things competing for out attention.

    The ground work has been laid: behavioral economists, clinicians, educators, and patient groups will be gathered and studies initiated. These are complex studies. Any outcomes from these studies may not be anything that can be easily executed at the bedside or following an office visit.  There may be one or two small things the HCP and the patient can do while waiting for these studies to be completed and initiatives to become part of our healthcare landscape.

    Perhaps the HCP and the patient can establish something like shared decision making but in the realm of shared knowledge exchange where both the HCP and the patient agree to exchange information about health related topics specific to the patient. These can be as simple as short text messages regarding glucose monitoring or exercise or articles on a topic specific to the patient. This can all be established prior to the office visit via a tablet and confirmed during the visit. The principle is that at the visit the patient is more aware and interested in health and healthcare: leverage it. No point in loosing an opportunity to establish a conduit for communications, a way for both parties to open up those 5000 hours to each other in simple non annoying nanny state fashion. You can’t change behavior without having both parties sharing the need and desire to listen and learn. Engagement is a small simple step in communications between patient and HCP that begins perhaps a long term relationship.

    July 18, 2011

    On  July 14, 2011 the oncologist and the team spoke with us to introduce the concept of palliation. It was a hard and difficult conversation to hear and with 20/20 hindsight it was the moment that Donna began to give up.

    They recommended home hospice. So that weekend I pulled it together and ordered the bed, etc. I guess after the weekend and taking one look at how emotionally fucked I was they recommended Donna be moved to Karpus 4 the in unit hospice. For the next month the bed remained in the apartment reminding me of what was not happening. What was lost. What will be forever. She will not be back. Of course I can always go to her.

    If I’m Not A Survivor Am I a Loser?

    Based on an article in the NYT ‘Life, Interrupted: Am I a Cancer Survivor?‘  I posted the a Tweet and received the following responses which is spurring this post. 

    These response made me stop to consider who are the losers and winners in terminal and serious illness? 

    In the NYTime article Suleika Jaouad asks the following question ‘What does it mean to be a survivor?’ She further states that, and rightly so, the term “survivor” is as ubiquitous as it is hard to define. Cancer, its diagnosis, treatment, and outcome is as complex as Higgs boson. Cancer is not a binary zero or one, on or off, yes or no. It is a gradient of the disease, the patient, the family, the HCP, the insurance plan, and a dozen other variables. To look at someone with cancer as winner or loser I believe harms those with cancer who choose palliation or hospice. The reality is that there may not have been a choice to go into palliative or hospice care but, to position that decision in relation to being a survivor a winner harms the entire spectrum of terminal illness and especially cancer. 

    Let me make a point right now. I am not advocating that those diagnosed with cancer don’t fight like hell. They should do anything and everything to not lose that fight. (You can’t help but use that win lose analogy.) At the same time the American Cancer Society states there will be 1,529,560 new cancer cases and 569,490 deaths from cancer in 2010. The ACS further reports Cancer death rates fell 21.0% among men and 12.3% among women during 1991 to 2006. This could not happen if there were not winners and if people were not committed to survive. Those half million Americans who died fought their disease. Are they losers? And as they were losing their fight did they suffer unnecessarily? Did their loved one witness something that will forever remain etched in their memories? Those of us who have benefited from palliative and hospice care I hope feel as I do, even in my loss, my wife’s ultimate loss, there was a small sense of victory, it was dignity for both of us. As I’ve said and still don’t know where I Bogarted it from ‘Hospice saved my life.’

    Robert Wood Johnson Foundation had a post ‘The Path to Palliative Care‘ which documents the December 1995 issue of Time magazine publishing the findings of SUPPORT the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Knowing When to Stop which to quote ‘American physicians often ignored the last wishes of dying patients and caused unnecessary anguish and stress’. The post points to the development of a robust palliative care movement in the US. As I’ve posted here before we have come a long way and many of us have benefited from palliative care and hospice but the data is clear there is more to be done. This movement and those who deliver it know how it makes a huge difference to both patient and family. Would they be investing so much and serving so selfishly if was not a winning proposition? 

    Further in the Jaouad NYT article she says a friend Tweeted the following ‘I loath the term. It’s either exclusionary or overly broad. So I don’t define it, I avoid it’ The author ends the article by saying she will continue to figure out what surviving is. And that is a great conundrum to face.

    Those who know and have experienced palliative or hospice care know it is a hard choice to make and accept. It is hard to travel that path but compared to the alternative it makes everyone a winner. Perhaps those of us who some feel are losers need to let them know we are not.

    July 10, 2011

    On July 10, 2011 Donna and I had dinner at the Odeon.

    The previous week of was a rough one. For much of the year Donna was fighting with HPO (hypertrophic pulmonary osteoarthopathy) a depilating condition of the joints especially in her knees. We spent months trying to resolve it but the bottom line was we had to achieve tumor regression again. So for June Donna was on her third line of chemo, Gemzar. We had a CT earlier in the week and were scheduled to see the oncologist on Friday July 8. He said the chemo wasn’t working and Donna has pleural effusion that should be treated. He scheduled a pleurodesis for Monday July 11. Told us the last place we wanted to be was in the hospital over the first weekend in July. (New residents, interns, and fellow. Think Homer Simpson with a degree)

    Dinner on Sunday was low key. The walk home, only two blocks, was difficult. Each step Donna took was painful and slow. She walked like one of Jerry’s kids on a telethon with braces. Stilted halting steps. Each step counted out to avoid getting to where we were going. I wonder how she remained so dignified.

    We finally made it home. I believe ‘True Blood’ was on. We watched it and went to sleep. The next day with Donna in even more pain we headed to Beth Isreal. I had to carry her to a wheel chair. Little did either of us realize Sunday July 10, 2011 dinner at the Odeon was our last meal together. The last time we slept together. The the last time she would be home.