How it feels to withdraw feeding from newborn babies

An anonymous British physician challenged the sensitivity of the readers of the British Medical Journal (BMJ) with his recent letter published in the November 1, 2012, issue of the prestigious UK publication (see http://www.bmj.com/content/345/bmj.e7319 ).  The physician describes his feelings as he applies the Liverpool Care Pathway (LPC) to pediatric patients in his hospital.  (Those who read this blog regularly may remember the post on the LPC last month; see https://blogs.baylor.edu/jimhenderson/2012/11/02/the-liverpool-care-pathway. )

The emotional burden of working with parents who must witness the slow demise of a severely ill child takes a toll.  The situation as described in the letter is more than merely dealing with a dying child.  It is the ethical challenge of issuing the order to withdraw nutrition and hydration to speed up the process.   

The doctor wrote that parents “wish for their child to die quickly once the feeding and fluids are stopped.  They wish for pneumonia.  They wish for no suffering.  They wish for no visible changes to their precious baby.   Their wishes, however, are not consistent with my experience.  Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was ten days.”

When I first wrote about the Liverpool Care Pathway, my thoughts were focused on end-of-life care for the critically-ill elderly.  Deciding not to prolong the life of someone who has lived a “complete life” is one thing.  Refusing nourishment and hydration to a new-born child for 10 days borders on cruel and unusual treatment; not compassionate care by any definition of the term. 

Once again the media in the UK is blowing up as these stories are making their way into the press.  Palliative care is supposed to ease a person’s way into the final stage of life, not hasten death to save money. 

Read more: http://www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html#ixzz2E0iPYfvW

The opinions expressed in this blog post are mine alone, and do not reflect the opinions of Baylor University.   Baylor is not responsible for the accuracy of any of the information provided in this post.

The Liverpool Care Pathway

I admit that I’m the kind of person who pays careful attention to events that occur around me.  Some of my friends think that I’m overly suspicious.  My mother called me a “skeptic.”  Some might even say “conspiracy theorist.”  Well, I’ll admit to the first two, but I’m far from the latter.   OK, you be the judge. 

I’ve been doing some preliminary research on the use of “clinical pathways.”  A decade-long interest in comparative effectiveness research coupled with the federal funding of the Patient Centered Outcomes Research Institute (PCORI) has led me to the conclusion that the medical care delivery system of the future will be dominated by “evidence-based” clinical pathways.   To tell you the truth (at least my version of the truth) all government dominated medical care systems emphasize clinical pathways as a resource allocation tool.  If you don’t allocate resources using some sort of pricing mechanism, you’ve got to use something else.  Enter clinical pathways based on evidence based medicine. 

A clinical pathway is a structured medical intervention plan that translates clinical guidelines into a step-by-step course of treatment intending to standardize care for a specific medical problem.  On the surface clinical pathways make a lot of sense as long as the treatment objectives are aligned with patient interests.  At this point the skeptic in me rears its ugly head and I begin questioning motives. 

Are we more interested in providing quality care or are we simply trying to reduce medical spending?  The focus of this post is not to open a discussion of the role of comparative effectiveness research in this country.  Remember I said that I was an observer and in my recent study I have observed a growing debate over a particular clinical pathway that is in use in the United Kingdom, the Liverpool Care Pathway for the Dying Patient (LCP).  The name alone raises red flags for me. 

Recognized in 2001 as a “best practice” model, the LCP was adopted for nationwide use in 2008 as the recommended end-of-life strategy for the UK’s National Health Service (NHS).  The stated aim of the program is to ensure that dying patients receive the highest standard of care as they near death.  As an alternative we might also note that it’s much cheaper for patients to die within 33 hours (the average for patients submitted to LCP) than to linger for weeks and even months using valuable medical resources that could be spent elsewhere. 

Even with the increased emphasis on using the LCP, hospitals were slow to implement.  A study found that only 16% of terminal cancer patients and 5% of non-cancer patients would receive this care.  Hospitals needed an added incentive to implement the LCP.  There is no better motivator than cash money.  So the NHS established targets for hospitals and provided bonuses for those hospitals that met or exceeded their targets. 

As more and more dying patients are assigned to the LCP, more and more hospitals are receiving bonus payments and the British press is beginning to uncover alleged abuses.  The Daily Mail has latched onto the story like a pit bull, running stories almost daily about the abuses found in the LCP.  But the Mail is notorious for uncovering “abuses.”  My frequent visits to England provide a rich source of anecdotal evidence on the problems with the NHS.  But it’s not just the Mail that has taken up the crusade.  I’ve read articles in the Observer, the Standard, the Telegraph, and the BBC News.  Even the Huffington Post has latched onto the story saying “the UK’s ‘death pathway’ may be a little too deadly.” 

Is this a preview of what ObamaCare has in store for us?  Remember that I am the one who wrote recently called the IPAB our potential “death panel” as applied to Medicare.  When the government dominates a health care system, health care spending becomes another budget item.  As a line on the budget, it becomes a target for cuts when spending exceeds targeted levels.  Budget cutters look for the low-hanging fruit first.  In medical care the low-hanging fruit is end-of-life care.

 I remember the time when all that Liverpool meant to me was the hometown of the Beatles.  If only I could return to those innocent days when all I wanted to do was “hold your hand.”