Category Archives: News Media

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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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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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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Why the Bipartison Care Planning Act 2013 is Exciting

In January 2013, I was fortunate enough to not only to attend C-TAC (the Coalition to Transform Advanced Care)‘s National Summit, but to also present my video piece, A Biker’s Heart, featuring the incredible true story (from Last Wish) of Bill and his wife and caregiver Nancy, as they fought against all odds to combat Bill’s devastating heart disease.  When I originally told Bill his story was going to be displayed and honored at a National Summit in Washington, DC, his response was simply “Maybe it will do some good”.DSC_5086

During the Summit, I listened to a bipartisan panel of three senators, Senator Isakson, Senator Warner and Senator Whitehouse, discuss the urgent need for awareness, reform and legislation surrounding the realm of advanced care planning and end of life care in the US.

Just six months later, Senators Isakson and Warner have reintroduced the Care Planning Act which is designed to help Americans make informed choices about their health care.

The term “patient centered care” is ubiquitous in end-of-life, advanced care planning and palliative care circles.  It is a highly sought after healthcare model that is highly lauded in social media and by many clinicians and advocates.

However, in my experience, patient center care is something clinicians and patients yearn for, yet seldom achieve, for various reasons, including lack of time and resources.  To truly achieve patient centered care, physicians need to do more than just ‘talk about it’ as a gold standard.  Yet, it seems many, if not most, physicians are unable to practice what they preach due to the unfortunate limitations that plague implementation of most good ideas: time and money.  One of its many important facets is that the Care Planning Act establishes reimbursement for physicians who practice the gold standard of patient centered care with interdisciplinary health care teams.

Even more exciting from my viewpoint as a practicing intensive care physician and end of life researcher, is that the Act charges HHS to develop quality metrics that will actually measure and hopefully assure congruence with a patients’ stated preference.  For me, this idea is of monumental importance.

Let’s backtrack for a moment to the Patient Self Determination Act of 1990 which mandated that hospitals receiving Medicare reimbursement document a patients’ advance directives upon admission, give the patient information regarding advance directives or allow them to decline.  This manifested as checkboxes that admission clerks complete as patients are being wheeled into emergency rooms- or as one page in a stack of admission paperwork completed by patients as they are admitted to the hospital.  Seldom does this paperwork result in a candid discussion between patients, families and/or their physicians.  Simply put, the PSDA did not improve the quality of end of life care in this regard. If true quality metrics were to be developed, then the Care Planning Act of 2013 has a hope of making a difference.

-Lauren Van Scoy, MD Colorheadshot

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Paula Span’s A Novel Way to Document End-of-Life Preferences

Although I haven’t yet had a chance to read Dr. Lakin’s research study from JAMA referenced in this article (but I certainly plan to!), this summary from Paula Span provides food for thought.paulaspan

Here is a comment I posted, but is still waiting for approval from NYTimes.com.  But here it is in the meantime:

Thank you Ms. Span for another article on the extremely important topic of advance care planning. I work in the ICU and in my experience, very few patients have documented end of life preferences when they arrive in the ICU despite having chronic or even end stage diseases for many many years. This has to change!

Paula Span, NYTimes.com, The New Old Age

Although I haven’t yet read Dr. Lakin’s research study, it strikes me that it’s not important not only to encourage doctors to document an end of life care plan, but also to make sure that it is accurate and not simply a default, which is often “do everything”.

There are some great resources out there for patients and families to use to embark on these difficult conversations. Personal stories are a wonderful way to get information, and the work that the Conversation Project does is excellent. Also, the Last Wish Compass (www.knowyourwishes.com/Compass.html) is a brief discussion guide that helps patients consider important issues to communicate with their families and doctors. Dr. Lakin’s work is exciting in that it suggests increased awareness does make a difference.

-Lauren VanScoy, MD

 

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“Everyone on Medicare should have their end-of-life preferences clearly spelled out…”

Here is a nice piece from Ezra Klein in the Washington Post called “Can we please talk about death like adults?” with a great ending statement:

“And so seniors living out their final days get tortured by the medical system because everyone involved was too afraid to talk about death — and the occasional ugly realities of end-of-life “care” — before it was near.”

Read the full article here:

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