A Failure to Communicate

ht_lorraine_bayless_nt_130304_wg2The topic of End-of-Life Care took another turn on February 26th with the passing of Mrs. Lorraine Bayless (pictured left) at Glenwood Gardens in Bakersfield, California.  As I write this, there is still a lot of conflicting information circulating on the Internet about what happened that day and why.  And there is certainly no shortage of opinions about what went wrong – or not. There also appears to be a great deal of misunderstanding on what a CCRC is, what services and care are provided – and what care responsibilities a CCRC has to its independent living residents.

There are elements of this story that, if for no other reason than respect for Mrs. Bayless’ family, should remain with this story – i.e., primarily an assessment of Glenwood Gardens’ policies and procedures. But there are also elements of this story that transcend our need to better understand and assess models of care relative to individual rights and end-of-life care. It is in the latter interest I offer this post.

Last August, I wrote a post, CCRCs: Healthcare Providers – Or Not? I wrote then,
for a segment of the senior population, typically over the age of 75, CCRCs are a very attractive retirement housing option. They offer the comfort and security of a community tailored to meet the physical and emotional needs of seniors, the social energy of a community setting and the critically important peace of mind that personal services, assistance and care are available, when and if needed, removing that potential caregiving burden from their adult children raising families of their own.”

Ah, but there’s the rub that I think this story will eventually wind its way towards: what constitutes, “when and if needed?” And who gets to decide when and if its needed? On the afternoon of February 26th at Glenwood Gardens, the 87-year old Mrs. Bayless clearly needed assistance if she were to have a chance to live (it was subsequently determined by her physician that she passed away from a massive stroke, most likely owing to what had been previously diagnosed as disease of the blood vessels supplying the brain).

Many of the news stories I have read characterize Mrs. Bayless’ residence as being independent living – as if it were conceptually unique and separate from the other offerings at Glenwood Gardens; i.e., assisted living, nursing care, Alzheimer’s/dementia care and hospice. While there is physical separation between the facilities providing these services and care, the underlying market positioning of a CCRC is their availability on a single campus.

The overt selling point being that someone does not have to move from the campus when and if they need services and care that extend beyond what is available through independent living. In fact, Glenwood Gardens’ website promotes having 24-hour access to staff. Whether this can be interpreted as having access to emergency medical care provided by nursing staff in other areas of the CCRC I think is going to get a lot of discussion and debate.

I think the more immediate questions here, however, are first, whether Mrs. Bayless would have wanted life-saving efforts performed.  In statements afterwards her family seemed to indicate she would not, though Mrs. Bayless did not have any advance directives in place, and the paramedics that arrived on the scene ultimately provided CPR in any event.  And second, would CPR, if started earlier, have been helpful. Very often, CPR is ineffective in such situations – and when it is effective in reviving a frail elderly person it can often result in terrible injury, leaving the individual incapacitated and facing a prolonged and painful death.

As challenging and difficult as they are, it would be nice to think these were the questions guiding management’s and staff’s decision making of that afternoon. But that doesn’t appear to be the case.  In a statement, Brookdale Senior Living, owner of Glenwood Gardens, said, “this incident resulted from a complete misunderstanding of our practice with regards to emergency medical care for our residents. We are conducting a company-wide review of our policies involving emergency medical care across all of our communities.”

When the dust finally settles I think  what we will find is a failure to communicate on multiple levels and between multiple parties. If Mrs. Bayless’ wishes were clearly understood by her family, why was a DNR order not in place? If management at Glenwood Gardens understood corporate policy and procedure, why is Brookdale Senior Living now leaving them out to dry? If the staff at Glenwood Gardens clearly understood policy, why was the person on the 911 call seeking the input of others to affirm her position?

So the key takeaway I have from this story and all of the opinions surrounding it is that it reinforces the critical importance of effective communication – and how very often its lacking stands in the way of better healthcare. The same core ability that must be a critical element of any strategic planning effort we engage in with leadership teams at healthcare provider clients is just as applicable to any effort that involves human beings for which there are expectations those individuals will work together to achieve desirable results.

As I have written before, it is truly amazing that today we live in a world where communication has never been easier – yet never been more difficult.


Shades of Grey

Charlie Ornstein is a senior reporter at ProPublica and board president of the Association of Health Care Journalists. More importantly, he is the son of Harriet Ornstein, who passed away peacefully on January 18th of this year following a short stay in hospital. Last week, Charlie published an article relating his experience – How Mom’s Death Changed My Thinking About End-of-Life Care.

Reading Charlie’s article reminded me of the insights of Dr. John Henning Schumann, which I shared in my post, The Politics of Dying in America. Charlie’s experience is no different than that of hundreds of thousands of families every year. His perspective, however, is uniquely different because he is now in the unfortunate camp of having looked at end-of-life care from both an objective and deeply subjective vantage.

From a public policy perspective, the vulnerabilities of the American healthcare dragon are so easy to identify that you have to marvel at our inability to effectively exploit them. As Charlie points out in his article, about one-fourth of all Medicare expenditures are made during the last year of a beneficiary’s life. We are paying millions and millions of dollars to buy a few extra days. Doesn’t seem objectively reasonable does it?

What would you pay for one more day? Seeing as the day after one more day the collection agencies wouldn’t be able to reach me, I guess I’d pay whatever my credit would allow. That might get me through Good Morning America. On the other hand, my dad always told me that a noble goal was to leave the world indebted to no one while being the poorest soul in the cemetery. So I got that going for me . . .

Without any intention of being disrespectful to the cherished memory of Mrs. Ornstein, I make light of a scary and depressing topic simply because there isn’t much else to do with it that seems logical. And that’s where very often rational discussions of healthcare public policy breakdown: because one person’s calm, objective logic is another person’s emotional reality. I think this is at least partially what Charlie was getting at in his article.

The elasticity of demand for medical care is one of the most capricious concepts we face in analyzing and assessing healthcare public policy. What I would pay to stay alive another day is necessarily going to be different than what I would pay to keep someone I have never met alive. But the reality is that through public healthcare programs supported by taxation (e.g., Medicare and Medicaid) I do help pay to keep someone alive another hour, day – or hopefully, much longer. Fortunately, I’m not directly involved in that decision making because I cannot imagine what it would be like if I had to choose how my tax contributions should be used – or not – on a case-by-case basis.

The point of all this is while some folks involved in healthcare policy debate would have us believe the world is black and white – with clearly delineated focal points for determining what’s right and what’s wrong – it obviously is not. The real world is a thousand shades of grey between black and white and nowhere is that more evident than when the topic is end-of-life care.



Leadership Opportunity for Hospice

imageIn an article that has received a good amount of advanced press, today’s Journal of the American Medical Association publishes research findings on end of life care, or more particularly, utilization of hospice care.  The article, entitled, Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009, shares the findings of research seeking to determine changes in site of death, place of care and care transitions for Medicare decedents between 2000, 2005, and 2009.

Research results indicated that while more individuals aged 65 and older are dying at home, their utilization of intensive care services (i.e., hospital ICU) during the last month of life increased (29.2% of decedents utilized ICU in 2009).  In addition, 11.5% of decedents in 2009 had three or greater hospitalizations during the last 90 days of their lives.  And while hospice use increased, upwards of 28% used hospice services for three days or less in 2009.

A key finding of the research is that increased use of hospice may not lead to a reduction in resource utilization.  The authors believe their findings could, “raise concerns that hospice is an ‘add-on’ to a growing pattern of more utilization of intensive services at the end of life.” Hospice providers hoping to avoid the sequestration axe take note: while your inherent value proposition of improving the quality of life, while easing the individual pain and family burden associated with end of life care is invaluable, getting paid for your efforts in this environment also requires demonstrable cost savings.

As I have written here before, the Death Panels moniker given to us courtesy of Sarah Palin has been a tremendous disservice to encouraging open and candid discussion on the personal, social and economic challenges of dealing with end of life care.  But I see a huge opportunity here for hospice providers – and the trade associations that represent them – to seize this important initiative back from politicians and elected officials.

They should use this opportunity to take a leadership role in creating a national framework for encouraging candid dialogue, open sharing of concerns, fears and ideas – and for advancing policy initiatives that encourage knowledge and education regarding the alternatives available to individuals and their families facing end of life decisions.

Oscar Wilde wrote that, “life is too important to be taken seriously.”  Well, I posit that death is too scary to run in fear from.


The Politics of Dying in America

Please take a few minutes to read the post, One Example of End-of-Life Care in America, written by Dr. John Henning Schumann on his blog, GlassHospital.  It relates the real life story of a general internist’s experience treating a frail 94-year-old female patient with advanced Alzheimer’s disease and multiple medical issues.  It shares the difficult, non-medical oriented challenges that cut a wide swath across the care continuum when dealing with end-of-life care: the patient, her family, the hospital administration, the attending physician and other clinicians at the hospital.

Several healthcare policy themes are also inherent in this story: the apparent shortcomings of clinical integration and misalignment of incentives that are too often manifested in simply poor communication between clinicians, the challenges with assignment and fulfillment of responsibilities pertaining to an advance directive, the relative effectiveness of evidence-based medicine and how to meaningfully and consistently define transparency in lieu of individual privacy and respect for the patient.

Well over a decade ago I first heard the phrase, “the challenge with our healthcare system is not that we live too long – it is that we die too long.”  I wish I knew (or could remember) to whom that remark should be attributed, as I think it aptly describes the ground zero crossroads of public policy discourse we face in healthcare.  For all of its publicity and ability to bring out the rancor worst in ideologues, the Affordable Care Act is anything but a comprehensive policy solution.

The modest attempt made in the 2009 pre-ACA bill, HR 3200, which would have compensated physicians for providing voluntary counseling to Medicare patients about such demonic concepts as living wills, advance directives and end-of-life care was chastised as being tantamount to Death Panels by the hopefully soon-to-be-forgotten Sarah Palin.  Incidentally, the use of that characterization was given “Lie of the Year” honors by Politifact, considered one of FactCheck’s, “whoppers” and referred to as the most outrageous term of 2009 by the American Dialect Society.

Nonetheless, the characterization continues to resonate in American culture and it highlights the to-be-expected tremendous difficulty in developing a rational policy approach to what for most of us is a very irrational subject: death and dying.  And as Dr. Schumann’s post demonstrates by example, those involved in making such policy are most often not those traversing the ground zero crossroads on a daily basis and having to face the difficult choices with patients and their families.

On the other hand, that I am writing to share with you a blog post expressing the firsthand frustration of a physician in the trenches I think reflects a paradigm shift in our society and culture where the art of medicine is emerging out from under the shadow that has been generations of members-only collegiality and exclusivity.  I found the candor and directness of Dr. Schumann to be both refreshing and constructive.  That it is made available for public consumption is an example of many such blogs now being written on a daily basis by clinicians across the country.

Like many of the healthcare policy issues facing us, end-of-life care holds little hope of ever having a likeable policy solution.  The issues surrounding it are just too emotionally laden with undesirable choices.  But policies that have the best chance of broad support and sustainability will be those developed under the full light and disclosure of the realities that clinicians like Dr. Schumann are willing to share.