Monthly Archives: August 2013

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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More than just an animal

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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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A heck of a personal story… “A Handshake” from JAMA

I try to read JAMA’s A Piece of My Mind column whenever I have the time.  The column features narratives about a wide variety of topics, but they’re usually patient stories, ethical issues, or reflections about the practice of medicine.  The August 7, 2013 edition of JAMA has a wonderful narrative by transplant surgeon Dr. Kenneth Woodside entitled “A Handshake” where he evaluates a patient for transplant eligibility.  His eyes widen when he reads in the social history the simple word “Tortured”.  Kudos to Dr. Woodside and his patient for sharing the story.

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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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