News from Ohio: Demonstrates need for a power of attorney

I stumbled across this news article from Ohio.com, The Akron Beacon Journal Online (read the whole story here) via one of my favorite blogs, Thaddeus Pope’s Medical Futility Blog.

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It’s quite a compelling story surrounding a common scenario I see in my daily work in the ICU.  An 80 year old woman is fighting for more time to make end of life decisions for her brother, who is 78 and is currently terminally ill and unresponsive on a ventilator.  Some quotes from the article:

Eugenia Basheotis, 80, obtained the restraining order last week, just hours before Summa Health System’s deadline to remove her brother from life support.

A hearing on whether to continue life support for William Basheotis, 78, is now set for later this week in Summit County Probate Court.

He was taken to Summa on Sept. 8 and his terminal condition was revealed to his sister on Sept. 11.

Really????

Her attorney, Kevin Breen, of Fairlawn, said Eugenia Basheotis was unprepared for the sudden life-support decision and she simply wants to further contemplate her brother’s future medical care.

It certainly will be interesting to hear more details and how this story pans out…

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Storytelling at it’s finest: Katy Butler

We all have stories to share.  When it comes to end of life care and advanced illness, personal stories and narratives provide support and guidance unrivaled in power.  Perhaps a doctor’s words or a nurse’s reassurance may help families struggling with chronic illness or the impending death of a loved one. Yet, as a physician I find it hard to rival the guidance and depth of understanding that patients and families experience when someone– anyone–shares their own story.

Katy Butler, is a master of narrative writing.   An acclaimed writer with a list of honors that would make any writer drool, Ms. Butler’s writing is not only skillful, but personal.  She has two stories to tell:  that of her father, and that of her mother. The first story she tells is of her quest to have her father’s pacemaker disabled so that he could experience a natural death as he suffered with dementia. The second is that of her mother’s choice to forgo a serious heart surgery, despite the ‘promise’ of living well into her 90’s.

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With each piece of hers that I read, I can’t help but feel that the world of “end of life advocacy” is fortunate to have a voice like Katy’s. Not only is she an amazing writer, but she writes from personal experience that leaps off the page.  She also happens to be a lovely person, who I had the privilege of sharing a meal with a few years ago as she was performing research for her book “Knocking on Heaven’s Door”.

Although I haven’t yet read her book (it is on the top of my list), but if these two pieces by Ms. Butler are any indication, then it is surely a masterpiece.

This is  storytelling at its finest.

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#Death Club! End of life care in the ICU: How varied is it?

Welcome to #DeathClub– an online end-of-life and palliative care journal club for casual readers

DISCLAIMER: For the purposes of this blog, this is not meant to be a highly academic critique or analysis of this paper.  Most of my readers are not research driven nor principle investigators, but rather, people on the front lines: advocates, patients, family members and bedside clinicians.  For this reason, this blog is NOT meant to be a comprehensive review of the articles, but instead a quick summary of the findings and implications, with a side dish of personal narrative.  Find the introduction to #DeathClub here.

Hospital Variation and Temporal Trends in Palliative and End-of-Life Care in the ICU

Thomas W. DeCato, MD; Ruth A. Engelberg, PhD; Lois Downey, MA; Elizabeth L. Nielsen, MPH; Patsy D. Treece, RN, MN; Anthony L. Back, MD; Sarah E. Shannon, RN, PhD; Erin K. Kross, MD; J. Randall Curtis, MD, MPH

Crit Care Med. 2013 Jun;41(6):1405-11.

Click here for abstract

Why I Picked This Article:

I’m starting a new job as a pulmonary and critical care attending in an ICU that I’ve never worked in before.  It’s my first venture out into the world outside of where I trained. I know the in’s and out’s of my home institution like the back of my hand and I have a pretty good concept of how we exceled and how we needed to improve.  But here, in this new ICU, when it comes to my end-of-life care research endeavors, I don’t even know where to begin.  Quite Simply: I need to find out.  This article is the first step on my trek down the “yellow brick road’.

Dr. DeCato’s team asks the question:  Is there significant variability across individual hospitals in the quality of end-of-life care in the ICU?

Put simply, they want to know if certain hospitals perform end of life care delivery well, and others, perhaps, ‘not so well’.  It’s an interesting question to me, because I can take what they learned in this study to ask myself: where is MY hospital on this spectrum?

What did they do?

13 hospitals in the Seattle/Tacoma area were studied. Some were university teaching, some were private and non-teaching and so forth.  The researchers made efforts to obtain a good mix of different types of hospitals.  First, they examined medical records looking for patients who died after being in the ICU for at least 6 hours.  They chose the 6 hours to ensure that the physicians had enough time to deliver quality end of life care. 4-6 weeks after the patients died, surveys were sent out to the family as well as the patients’ nurses, although the nurses completed the surveys soon after the death.  There were two surveys used. The first measures family satisfaction with ICU care (called the FS-ICU).  The second is a shortened version of the Quality of Death and Dying survey, which essentially measures the overall quality of, well, death and dying.  The patients’ medical charts themselves were reviewed for the following factors, which were recorded as being either present or absent: life-sustaining therapies in the last 24 hours such as CPR, whether life support was withdrawn in the last 24 hours, symptom assessment in the last 24 hours of life, a family conference in the first 72 hours of the ICU stay, a discussion about prognosis in the first 72 hours of the ICU stay, use of support services, and so forth.  In addition the length of stay and days spent on the ventilator were recorded.  The researchers then used statistical analysis of these factors to identify if there was variability in these measures amongst the different hospitals in the study, and whether or not these measures changed (ie. improved) over time.

What this Article Shows

Over 3000 patients were studied and a little less than half of the families responded to the surveys (a pretty good response rate for a survey!)  The baseline statistics are pretty interesting. 81% of patients had a DNR (do-not resuscitate) order. 73% underwent withdraw of life support. Surprisingly, only 38% of the patients had documentation of prognosis in their medical record and only 82% had their pain assessed in last 24 hrs.  The authors didn’t include any measure of disease severity, so it’s not clear to me just how sick this patient population was, but based on the high percentage of patients who had life support withdrawn, I’d guess they were a sick population.

So, how did the hospitals score?  I think the main finding here is: differently.  Each hospital had significantly different scores across the different areas the researchers surveyed and measured.  What’s more interesting from a quality improvement viewpoint is that not all hospitals did well across the board.  In other words, some hospitals scored well in one area, but less well in another area.  This was true of the Family satisfaction surveys, the quality of death and dying survey and the measures the researchers abstracted from the charts.  Furthermore, in this study, they did not see an improvement in quality of end of life care over time.

How this Article is Helpful

So, it’s pretty obvious that before you can go about studying or improving end of life care in an ICU, you need to take some measurement of where the ‘problem areas’ are.  This article is helpful to me personally in that it shows that there isn’t a ‘one size fits all’ measure.  Getting a broad picture of my unit is going to be important moving forward.  For all hospitals and clinicians, it’s very important to acknowledge that there is tremendous variability in end of life care delivery, and that hospitals need to monitor care delivery via different quality indicators.

The Next Question…

Are the quality indicators used in this study (the FS-ICU, QODD and chart abstraction measures) the RIGHT ones?  Do these measurements truly represent high quality care?

Stay tuned.  There are many studies that look at this very issue….

-Lauren Van Scoy, MD

If you’re interested in writing a quick and casual #DeathClub review of an article (one you select or we can suggest one!), email ljvanscoy@knowyourwishes.com.  

Introducing…#DeathClub!!!

Death Cafes seem to be quite the rage, so I figured now is as good a time as any to start a little idea I’ve had in the back of my mind…#DeathClub!

Whoa, let me explain.

There is a very large online community of clinicians, patients, advocates and folks who are  interested in, believe it or not, talking about end of life issues, death and dying.  Twitter and Facebook have surprisingly robust communities devoted to these issues. In the academic arena, there is a huge community of ‘hard core’ end of life researchers who are churning out amazing studies and new data every day.

Why not bridge the two?

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I’m going to be starting a section on my blog devoted to bridging this gap. I’m calling it: #DeathClub.  The intention of #DeathClub is simple: to discuss and share interesting academic and research related articles pertaining to death, dying, end of life, advance directives, and so forth.

Each post will feature a single article, and will be written CASUALLY.  No heavy duty statistical analysis.  Just a quick, to the point, light hearted discussion about the latest and greatest news coming from the research world.

So…who’s in???

If you’re interested in summarizing a research article and having it posted in #DeathClub, please email me at ljvanscoy@knowyourwishes.com.  You can pick your own article, or I can suggest one for you.  

In the meantime, the first post is coming SOON!

Confronting Mortality: Martin Manley’s blogged suicide

Martin Manley’s suicide is, to say the least, unusual.  To be frank, I’m not quite sure how I feel about it.  Here is a man, who, according to CNN, planned his own suicide to the most minute detail, including leaving detailed instructions for family, an intricate website which he named “martinmanleylifeanddeath.com”.  At the time of this blog, the site has been taken down by Yahoo, although Mr. Manley’s sister, Barbara Flick is petitioning to have it reinstated.  CNN’s coverage included a quote from the currently unavailable website:

“Let me ask you a question,” Manley wrote on his website, which he divided into 34 categories and 44 subcategories. “After you die, you can be remembered by a few-line obituary for one day in a newspaper when you’re too old to matter to anyone anyway … OR you can be remembered for years by a site such as this. That was my choice and I chose the obvious.”

A quick Google search pulls up this presumed image of his blog:Image

You can read the article from CNN.com here.

In a time when there is a national urgency to talk about death, plan ahead for medical illness, share one’s wishes and reform end-of-life care, perhaps Mr. Manley’s blog serves as, dare I say it, an example.  I’m definitely NOT saying that the suicide itself sets an example, but perhaps instead that Mr. Manley’s plan and apparent willingness to confront mortality is something that is, well, inspiring.

A man named Doug Gosling, who sadly passed away on May 30, 2012, blogged his battle with prostate cancer quite nobly through his website “Dying Digitally”.  By choosing to confront his mortality, Doug found peace at the end of life.  His final blog post, called “Goodbye From Doug” was posted by his wife, Dianne, the morning after he died.  It eloquently speaks to his loved ones, his blog followers and certainly to himself, as well.  Dying Digitally is a beautiful tribute to Doug Gosling’s life.

There are others, too, who are, right this very moment, blogging their battles, both victories and losses with terminal disease.  While some may not understand the need to share these incredibly personal experiences, others are inspired and, importantly, informed.

The news of Mr. Manley’s suicide is a terrible tragedy that will likely be fleeting in the media, yet the blog he left behind, I hope, will remain. I look forward to reading it, and perhaps it will inspire others to think about mortality and consider planning for unexpected tragedy or advanced illness.

The Last Wish Compass is a discussion guide I created to help people navigate the difficult discussion about end-of-life care.  Although Mr. Manley wasn’t terminally ill, he provided his family with a Compass of sorts, via his blog, and I hope that they are more at peace with his choice as a result.

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What facts are we missing in the Barbara Mancini case?

Here’s another article from my new hometime newspaper, PennLive (I just moved from Philadelphia to Central PA). PennLive.com has been reporting on the Barbara Mancini case.  Feel free to join the conversation in the comment sections.  I’ve pasted my comments below.

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KnowYourWishes

I’m pleased that this article recognizes that there may be information about this case that we (the public) do not yet know as a result of the gag order.

I am critical care doctor and end-of-life care advocate and writer (who just moved to central PA), and something about this case bothers me. My questions is this: why would the hospice nurse report Ms. Mancini to authorities? What was done that the hospice nurse felt inclined to report? I would be shocked if the hospice nurse didn’t understand the principle of double effect (that administering morphine to control symptoms is totally acceptable as a right to relieve suffering, even if life is shortened as a result. As long as the INTENTION was to relieve symptoms). Did the nurse feel that there was another intention and that is why she called police? Politics aside, I can’t help but wonder if there are some facts missing to the public as a result of the gag order.

Nevertheless, ALL patients have the right to pain and symptom control.

Lauren Van Scoy, MD

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More than just an animal

Puppy 6-2-09

My home is affectionately nicknamed “The Van Scoy Zoo”.  At one time, I had, under one roof, two cats, a dog, two turtles, thirteen fish, a newborn baby and a husband.  What can I say?  I’m an animal lover, although with constant litter changes and late night dog walks I sometimes have to remind myself of this fact.

I am also an end-of-life advocate and practicing ICU doctor.  I’ve told my husband that if I become ill and my life nears an end, that I would want an animal, preferably my own pet, with me when I die.  In the hospital, out of the hospital, it doesn’t matter.  I want an animal. Anyone who loves their pet can probably understand this.

I learned of a group called Pet Peace of Mind, whose mission is to keep hospice patients and their pets together as long as possible, even through death.  The group also helps find placement for the pets after a patient passes away.  For an animal lover, this work is profoundly important.

Similarly, I recently read this article from the Health AGEnda blog, a story written by Chandelle Martel called “Man’s Best Friend”.  The essay won 3rd place in the John A Hartford Foundation’s Heroes of Geriatric Care Story Contest.  It details the relationship between Ms. Martel’s patient, Arthur and his 9 lb Yorkie, and the effect their separation had upon his illness, and the joy of their reunion.

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