Author: Mark

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.

Palliative Care and the Hospice: A Gift for the Living

This is going to be largely an opinion post as a follow-up to the previous one about palliation. Clearly palliation has a place and it works just as hospice and EOL care does. This cannot be disputed. And there are benefits for both patient and caregiver when this care is implemented. 

Yesterday during a group session we were talking about palliation and pain management. We were discussing that at times in either nursing homes, at home, or hospitals patients with terminal illness may not be receiving proper pain management. A person familiar with that commented that there are cases that we’ve all seen, where the patient is in abject agony and they are waiting for their next administration of pain meds, which comes but never gets ahead of the pain. Or the family feels that having the patient overly sedated is not fair to them. And there is always the fact the attending may not be up to speed on pain management etc. These are all problems that can be solved with education learning etc. We have to work toward fixing these issues. 

What struck me was how my experience with Donna and her time in hospice etc. was different from some others that I’ve spoken with. Make no mistake about it hospice is horrific for everyone involved. It is not the Four Seasons but it meets a critical need. It serves a purpose and achieves its goal for the patient and the family/caregiver.

“Psychosocial adjustment that raises patient quality of life is also dependent on the relief of burdens and the strengthening of important relationships prior to death (Singer et al. 1999). Patients often have great concern that they are being a burden to their family and their caregivers (Steinhauser ct al. 2000a). Improving communication between patient and family and patient and healthcare professionals could do much to relieve the burden that terminal illness may bring and strengthen the relationships that arc necessary to raise the level of quality of life at the end of life. Raising quality of 11% and quality of death maximizes the patient’s opportunity to experience a good death.” 

Beyond the patient’s care and comfort we must consider those left behind. Those who carry the burden of watching and caring for a loved one during illness and at end of life. The time following a passing is as important as the time spend in health. It should be spent in positive memories during healthier times. Time following a death should be spent sorting out what was and wasn’t in the relationship and how to create a tapestry of that love that will stay with us for our lifetime. 

I know for me with the positive experience I had with palliation and hospice it still took me months not to have the images in my head of Donna wasting in hospice. But they have been largely replaced by our life together. This begs the question, for those loved ones left behind who may not have benefited from palliative care or hospice, what are their lasting images and impressions? Do they question why they were not offered palliative care or offered it late or choose not to implement it? Do they spend their time post death sorting out what happened in the last few weeks and not what they had during a lifetime? Are those family members and caregivers, who did not benefit from palliation, do they have higher rates of depression? Do they suffer greater incidence of complicated grief when compared to caregivers who were part of a palliative care process?

Palliative care is a gift. It is a gift from the healthcare community and the person who passed away. It is a gift for both the living and the dying.

Best Buy and WebMD: Sharing a Reality

Scott a good and dear friend made an off the cuff comment that was like a song that says it all. 

We were speaking about online health sites and I mentioned WebMD. Without skipping a beat Scott said WebMD is the Best Buy of online healthcare information. I couldn’t agree more. I’ve been hocking for a year or more that it’s not WebMD but MyMD. That is where real healthcare learning should take place, at the intersection of patient and physician, the smallest discreet healthcare environment of learning.
 
Best Buys positions itself as the all knowing customer centric resource for technology. And they can charge more because they are all knowing. Best Buy doesn’t really get that their customers were bright, tech savy, and can smell higher priced products. Best Buy is the place to go to test drive products and buy elsewhere. How tech savy are you when you have a huge inventory of CDs and DVDs. When was the last time you bought a CD? The Best Buy Logo is 20+ years old. Best Buy is fading before our eyes. It is a relic of a different time. Even buying Napster was two years to late. The tech consumer is learning, changing, and adapting as fast as an upload to Dropbox or Sugarsync or iCloud. And this knowledge is being used daily.
 
Are healthcare consumers moving as fast with their knowledge uptake as the technorati? Yes and no. Consumers/patients are doing more research online and using social media to improve their healthcare knowledge. That fact is clear. The HCP may be part of the problem but, that will change because there is a critical mass of smart health savvy consumers happening. As consumers/patients improve their knowledge (remember a medical degree and residency doesn’t happen in a year or two) they will begin to see through WebMD. WebMD will become a resource like Wikipedia but not that source where they uptake knowledge, reflect on it and apply it. WebMD will become a minor visit to underpin learning. And let us not forget the consumer sees that WebMD exists for the single purpose of mass marketing readership on placed press releases and articles to gather ad click throughs. 
 
As Best Buy goes so will WebMD.  Consumers/patients want to be part of a care team, a learning team. They do not want to interact with a thing controlling the distribution of learning. They want share in discovery and change. But the HCP needs to begin to take charge of learning. They are trusted, respected, and have the knowledge. 

 

Fear and Loathing During the Office Visit: An Opportunity

Today the NY Times had a short article in the Well Section “Afraid to Speak Up at the Doctors Office” It was a summary of a longer (behind a paywall–grrrrrr) article in Health Affairs “Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making“
Three points struck me as I read the article in the Times and the abstract. First, shared decision making is key in collaborative medicine where the patient participates in their treatment and care as an HCP partner. One of the best examples of how SDM works and what it can do is The Ottawa Decision Support Network. Using SDM to it fullest potential with all the features and benefits is not a simple task for the busy practice. Second, the fact that patients have these questions and concerns and want to engage demonstrates that adult learning is at work. Patients want to find solutions to problems they have. They want to be active learners but are held back by …”patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian..” And finally there exists a huge opportunity for both HCP and patients to create ‘productive inquiry’ that can improve outcomes and how care delivered and its effect.

From the abstract the authors argue that the HCP may not be aware that patients are holding back or are afraid to engage in learning. This is a perfect opportunity for the HCP to manage patient care from a place of partnership and not top down. I wrote a post  “Changing the Office Visit from a Transaction to a Value Experience“. My failure in that post was to assume the HCP was ready to engage. Based on this study it seems the HCP is clueless to this need and opportunity. Nature hates a vacuum and this one needs to be filled.

From my view I would try to demonstrate that engaging with the patient in productive inquiry has benefits not just of warm fuzzy feelings but of improvements in outcomes. And we all know that outcomes is the new black in healthcare for both institutions and individual practices. The key is to not have the HCP try this with an entire practice but do his own small two arm study. Look at patients sharing a common illness or healthcare need, identify those who are seeking solutions to problems they want to solve, and divide them in half. With one group actively participate in their learning. With the other, treat and manage as usual. In six months do a chart audit to determine their clinical outcomes. But also measure the patients knowledge and understanding of their illness and how they are approaching and self managing. I would present that the clinical outcome should equal the social outcome of the patient as an active participant with the HCP in the management of their health.

Creating a Networked Imagination in Healthcare One Patient at a Time

Web 2.0, social media, and the movement from interpretation to participation can best be witnessed in how blogger/Twitter/G+ is not simply transferring knowledge or information but creating a community with reader’s and their shared experiences. I want to continue my look at the work by Thomas and Brown ‘Learning for a World of Constant Change’ Homo Sapiens, Homo Faber & Homo Ludens’ specifically moving from passive participation to active participation and what it means for healthcare.
 
Today all of us can participate (let’s call this learning) with writers, thinkings, film makers, and more by leaving comments on a blog, posts on our personal digital media (e.g. Twitter links, Gooogle + posts, etc) linked back to the authors posts, Twitter chats, podcasts and more. This is different from traditional media and learning (broadcasts, lectures, reading). Thomas and Brown state ‘learning was a function of absorbing (or interpreting) a transmitted message’. In this new media we find the learner engaging with information, using it more broadly in a social context. Thomas and Brown call this ‘productive inquiry’.
 
Productive inquiry is associated with John Dewey  He associated productive inquiry with the ability to engage the imagination. This new media “has enabled the fusion of network technology, communities of interest, and a shared sense of co-presence…’ Thomas and Brown call this ‘networked imagination’ which is a type of social and collective participation, think #hcsm. Learning is taking place in a social context. It is more effective than passive participation because it speaks to the learners needs. 
 
What does this mean for healthcare? I think we need to look at what it is happening to the average American and how they are using the web. And how this behavior is shaping current healthcare so we may capitalize on it. 

You’ve seen the data on how Americans use the internet for healthcare related data here  Americans are using the internet to find answers to healthcare problems they are seeking solutions to here. Americans are sharing healthcare knowledge with each other. Americans are using mobile devices to search for health information. In short and unsurprisingly Americans are going online, joining social networks, and sharing knowledge to manage their healthcare. These learners are engaging in their healthcare through the creation of networks of healthcare knowledge and information. They are doing it patient to patient, HCP to HCP, and in some cases HCP to patient. Web sites and publishers are focusing on getting health related information to consumers in an easily digestible fashion quickly. 
 
Historically HCP have been trained in traditional learning, absorbing a transmitted message. This works well as witnessed by the skill and expertise of our medical professionals. They leave medical school and residency as well trained as any in the world. And as HCPs continue their training in pretty much the same vain with CME lectures, online, grand rounds, etc. And further, HCP do access networks of other HCP and colleagues to learn. They to are part of this online healthcare revolution ‘networked imagination’.

So we have patients engaging in ‘networked imagination’ in healthcare. We have HCP trained in a traditional fashion, message sent message received and moving toward active participation in social media as they enter into practice. What we don’t see here is the overlap of physician and patients in a way where the HCP is taking the lead in becoming that trusted resource for the patient. Leading this productive inquiry. Becoming a valued network for the patient not just a parental figure. 

HCP need to move away from the idea that patients uniformly want a simple transfer of information or knowledge. ‘You have HTN and you need to take this.’ Because you know a majority of your patients will go do a http://duckduckgo.com/search HTN and the medication and find 20 other patients taking the medication with opinions and ideas. And if they feel welcomed they will call or come into to discuss it with you. Are HCP ready to create participation in order to manage interpretation? 

Let’s look at ‘You have HTN and you need to take this’, as part of a productive inquiry. This is not shocking to the patient, you’ve told your patient they are moving toward HTN. Both of you are prepared. What’s to keep you from handing that patient a single 8″x11″ sheet of paper with some URLs to links and PDFs on the topic of HTN and the medication that you have selected based on good evidence? Nothing. What is to keep you from adding a short paragraph about each URL or PDF as your abstract? Nothing. And you can do it with the following direction: a) Fill the Rx, begin your regimen, and read the information. b) Read the information, fill the Rx, and begin your regimen or c) Read the information don’t fill the Rx. I will see you in two weeks to follow-up with you on the medication, side effects, what you’ve read, and answer your questions. 

You have engaged this patient in a social context on a clinical topic. You are now occupying the learning receptors of patient and managing their expectations. This is not you waiting to react. It is you leading a networked imagination in healthcare one patient at a time. 

 

The Aporia and Epiphany of Learning, Healthcare & Social Media

My one trick pony reprise: social media is just one shinny toy in a box of other equally shinny toys (i.e. tactics). You’re drinking the Kool-Aid if you believe SM in and of itself will solve the healthcare crisis, change outcomes, improve patient care, and save money. Throwing a Twitter hashtag at healthcare without a strategy, goals, and metics is like wearing flip flops in a blizzard. 
In my view social media is a tactic best suited for education and learning. It offers those who apply it a robust tactic for learning about, learning to be, and learning to become active and engaged consumers and providers of healthcare. 
 
I am reading and digesting ‘Learning for a World of Constant Change’ Homo Sapiens, Homo Faber & Homo Ludens’ by Douglas Thomas & John Seely Brown. You can read the PDF here and it is well worth it if for nothing else the rich tapestry of ideas about learning in todays complex ever changing world. (Just consider how many links to new information are tweeted on your timeline in an hour, a day a week)
 

The authors state, rightly so, that we cannot possible keep up or engage with the sheer volume and flux of [healthcare]  knowledge occurring today. 

In the 20th century it was learning about. You accessed and learned skills and knowledge. Think slide lectures, didactic, reading, watching, etc. 
Thomas and Brown further present that later in the 20th Century value was identified as learning to be where learning was put in the context of systems, identity and the transmission of knowledge. Think patient office visit, infusion lab, patient handouts, WebMD, support groups, etc. 
Thomas and Brown further state that in the 21st Century learning is beaming a function of learning to become. We will all need to learn to become over and over. We will need to continuously reinvent ourselves to meet the constant change in information, knowledge, and data. Think changes in treatment, diagnosis, management of diseases and the aging population. Guidelines are changed almost bi-annually. 
In this new world of ever expanding content and data where attention is measured in a fruit flies life span we must embrace the key principle in healthcare–life long learning. This is not solely the purview of the HCP but of the patient because it is abundantly clear that patients expect to be part of the care team. And, to become that member they to must engage in life long learning as well in order maximize the benefits of their healthcare professional and improve their own healthcare footprint. And fr the HCP to surrender that learning opportunity to others is a failure in seeing where the puck is going to be. 
Over the course of the next couple of weeks post additional comments and thoughts from Thomas and Brown’s paper on learning and relating it to healthcare and social media. 

 

NPR and Planet Money: Who Gets a Liver Transplant

NPRs Planet Money has a podcast this week titled ‘How Do You Decide Who Gets Lungs?’ It was an excellent examination of the current system for organ donation and recent changes to that system. An interesting point was made. Pre 2002 liver transplant lists were set by patients in ICU and time in ICU. Those in ICU were at the top and the longer you were in the higher your position on the list. Post 2002 it was changed to a more objective criteria including bilirubin, creatine levels among other clinical data. During the discussion physicians said that once the system changed the number of patients in ICU needing a liver transplant dropped significantly. They admitted that that may indicate gaming of the system. doh? In the new system it is harder to game it since the criteria is clinical and objective. 

Overall this was an excellent podcast on a very critical topic in healthcare. But I feel they missed a point. Transplantation is a huge business for both the institution and the HCP. There is an economic incentive to get the organ in order to do a transplant. I am in no way saying institutions or HCP position economics over patient care. What I am saying is that Planet Money may have missed another point to examine, what are the economics of transplants? But that is not as dramatic as life and death. 

Changing the Office Visit from Transaction to Value Experience

In my estimation a goal beyond the clinical exam of an office visit is to have both the HCP and the patient establish a foundation for better outcomes by managing knowledge and sharing problem solving. In a sense this is a form of shared decision making (SDM) where HCP and patients communicate thus moving the relationship from paternalism to partnership. SDM is labor intensive and best suited to chronic or terminal illnesses. How can the busy PCP change a HC transaction to a learning experience and gain the benefits of SDM?

All practices comprise patients at varying degrees of health status and age. Each segment will reside on a different part of the learning continuum. Say 10 is a highly active involved learner and 1 is a non-learner. The reality is that we can’t expect to move all patients to a 10. The goal is to move patients to be more active in their HC involvement. Say a 2 to a 4 or a 5 to a 6. These small changes can make a difference.

Over the course of six months each patient visit should be accompanied with a short questionnaire to determine where patients reside on the learning continuum.

 1. Do you have a chronic illness or a healthcare problem that you are concerned about? Y/N

2. Are you actively learning about your illness or problem? Y/N

3. If you are active in learning what are your sources? (RankInternet

  1. Social media and groups with similar concerns or illnesses
  2. Friends and family
  3. Medical and scientific journals
  4. Support groups
  5. Healthcare professionals

4. If you have a chronic illness or a healthcare problem but are not actively learning about your illness why?

  1. My HCP is my decision maker
  2. I know a lot about it and am managing it well with my HCP
  3. I don’t have the time or desire to pursue this type of information
  4. I never considered learning more

5. If your health is good and you have no HC problems are you interested in learning more about your health? Y/N

These five simple questions will first open an entry point for discussion. The HCP can identify what problems the patient is seeking to solve, are they active learners, where do they learn, etc. The key for moving the office visit from a drive by transaction to a learning experience is knowing where the learner resides and if they want to learn. 

The data can be put into a database by disease, interest in learning, and other patient demographics. Once this is completed an educational strategy can be identified by segment or group. Outcomes can be as simple as did the patient at the next visit change his or her opinion about learning? Did they add some new knowledge to their knowledge base? Bottom line: the HCP should be the primary resource for patient learning or the most trusted. With a small effort the HCP can control and manage this knowledge channel