Better Care at the End of Life: What Can We Do?

On January 3, 2013 Dr. Ezekiel J. Emanuel published an opinion piece in the New York Times titled “Better, if Not Cheaper, Care”. His article addressed long held beliefs about end of life (EOL) costs and care and what we can do. Dr. Emauel put some holes in my view and attitude toward EOL and those of others. At the same time he supported a film I want to produce on palliative management and hospice care.

First, he pointed out that people do not spend more on healthcare in their last year of life than they do in the entire rest of their lives. Fact, 6% of Medicare patients who die each year do make up the majority of costs in the range of 27 to 30%. This figure has not changed in decades.

Recent studies show hospice may reduce costs in the last year of life for cancer patients by 10 to 20%. But they find no savings from hospice care for patients who die of other causes such as emphysema or heart failure. This may be because patients are entered into hospice care too late or the cost of labor intensive care.

Dr. Emanuel points to the need to change end of life care. Many Americans die in hospitals when the choice is to die at home. The ICU still accounts for 20% of deaths or post discharge with many patients experiencing symptoms such as pain that is controllable with appropriate palliative care.

 Four points are presented that will improve end of life care.

  1.  Train HCP how to talk to patients and families about EOL care.
  2. Pay physicians for a one time talk about EOL care.
  3. Every hospital should be required to have palliative care services. He notes that over 40% hospitals with greater than 50 beds do NOT have palliative care services.
  4. Revise eligibility for hospice care. The decision to enter palliative care is made on 6 months to live basis. It should be changed to need for specialized care such as pain management.

 First, this article opened my eyes to the reality and complexity of end of life care. I need to adjust my thinking about how we approach EOL and what we can achieve.

Secondly, the four points made to improve care can be achieved and will make a difference. These points support a new project I am producing. I want to make a short documentary film about my experience with palliation and hospice care and those who have not received it. My goal simply put, is to create a platform that opens a dialog between the following groups to improve decision-making during serious illness.  

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

I believe a film like this will aid this discussion—without tension—and in a way that evokes a positive response. We want to make it easy and productive to discuss palliative care, end of life, and hospice. We want to improve care and optimize time and quality of life

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.

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.

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.