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Benefits of End-of-Life Planning

Conversation Continues
Friday, October 7th, 2011

Conversation ContinuesConversation Continues feature ongoing discussions or news on current health topics with links to related materials.  They are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  Written by Monica Kriete, CFAH Communications Associate, and Goldie Pyka, CFAH Communications Manager.

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A new study in the Journal of the American Medical Association finds that when Medicare beneficiaries make their end-of-life preferences clear, it reduces spending, lowers one’s likelihood of dying in a hospital, and increases the use of hospice care.  The study also found that in regions where health care spending was already high, end-of-life care for patients with advance directives cost less than for patients who didn’t have them.  Alex Smith, M.D. offers his commentary on the study at the GeriPal blog, pointing out that advance directives help health care proxies make “in-the-moment decisions.”

A review in the American Journal of Nursing finds that conversations like these especially benefit patients with implanted cardioverter defibrillators (ICDs).  Near the end of life, ICDs, which are meant to correct irregular heart rhythm, “may generate repeated painful shocks during a patient’s final hours, at a time when the natural process of dying often affects the heart’s rhythm.”  And although ICDs are a common form of treatment for people with heart arrhythmias, it is uncommon for clinicians to discuss with patients the likelihood of these painful shocks.  Jim Russo, the study author and a certified cardiac device specialist, suggests that health care systems should “identify ways to promote timely deactivation discussions and thus foster better patient-centered, end-of-life care in people with ICDs.”

In the Prepared Patient feature article Advance Directives: Caring For You and Your Family you can find resources to help you decide what end-of-life plans are right for you, how to complete the appropriate forms, and the best ways to distribute and talk about them.  In Prepared Patient: Hospice Care: What is it, Anyway?, the difference between hospice and palliative care options are explained, along with other helpful information like what hospice nurses do at a home visit.

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Off Pitch: Simple Conversations Go Astray

Patient Perspectives
Thursday, October 6th, 2011

Patient PerspectivesPatient Perspectives round up recent posts from patient blogs and are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  Written by Monica Kriete, CFAH Communications Associate, and Goldie Pyka, CFAH Communications Manager.

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Having a severe or chronic illness can impact everyday conversations and encounters in unexpected and sometimes jarring ways.  From loved ones to cashiers at the supermarket, getting the right level of understanding at the right time and in the right tone is unpredictable and rare.

Lene Andersen of The Seated View uses a wheelchair due to her rheumatoid arthritis, and in Out Among the English she describes various ways in which mobility impairments can hinder social interaction.  For starters, her limited mobility can make it difficult to initiate conversations.  “How many conversations start with a look and a smile?” she asks rhetorically.  “If your smile happens at other people’s crotch level, it can be a bit problematic to catch somebody’s eye,” she points out.

It can be uncomfortable to talk specifically about one’s illness in social situations, especially if your company doesn’t handle it well.  For Ann Silberman, the social situation was a phone call, and her company?  A telemarketer.  On her blog, But Doctor, I Hate Pink, Ann writes about telling a salesman hawking a gym membership that she won’t be renewing due to her stage IV breast cancer diagnosis.  Let’s just say he doesn’t quite get her point.

But sometimes even successful communication can be a mixed blessing.  In Recognition Is Essential for Patients, Pamela Curtis writes about having coffee with friends, including a newcomer to the group who happens to be a neuroscience student.  Since the student fully understands the severity of her pituitary problem, his reaction is one of “genuine alarm and concern.”  But, while it is gratifying to be understood, Pamela says, she wants to “get credit for how well I’m doing, not for how awful I’ve got it.”

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The Emotions Illness Brings

Patient Perspectives
Friday, August 5th, 2011

Patient Perspectives roundup recent post from patient blogs and are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  Written by Monica Kriete, CFAH Communications Associate, and Goldie Pyka, CFAH Communications Manager.

When a reader asks anonymous blogger Rheumatoid Arthritis Guy Do You Ever Feel Like A Burden?, he recognizes the toll his illness takes on those around him – financially, mentally, and emotionally – but his answer is a definitive “no.”  Here he shares his strategies for unburdening friends and family.  “I know firsthand how easy it is to get consumed by the constant needs and demands of my disease…but it’s great to remember to give both myself and especially those around me the moments of attention that we all need.”

Sometimes the feelings associated with illness are more complex than “happy,” “sad,” or “afraid.”  When Kerri Sparling’s young daughter asks, “Whaaas daaat?”, Kerri tries to explain that it’s her insulin pump.  But it’s hard for such a little girl to understand and Kerri feels “at a complete loss.”  She writes, “How do you explain something invisible, yet so pervasive, to a little kid?  How do I show her that diabetes is her mommy’s serious disease, but that it’s going to be okay?  I don’t want her to be scared.  I don’t want her to be stoic.  I want her to achieve a level of informed and comfortable that keeps her feeling safe.”

Summer Michele Plum, author of the blog Painy Days & Mondays, poetically describes her emotional ups and downs in Strange Happiness: “Happy.  Sad.  Peace.  Loss.  Frustration.  Hope.  Anxiety…I feel wildly alone, deeply loved, and truly supported.  If I hold on tight, I might make it through this war, live my life and still find joy.”  This emotional dichotomy comes from the uncertainty of illness that can change a patient’s emotional landscape, so that a normal test result can be cause for dismay and a cancer diagnosis can bring a sense of relief.

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Understanding Your Medical Risk: Nice or Necessary?

Conversation Continues
Tuesday, July 12th, 2011

Conversation Continues features ongoing discussions or news on current health topics with links to related materials.  They are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  Written by  Monica Kriete, CFAH Communications Associate and Goldie Pyka, CFAH Communications Manager.

 

On KevinMD, Sam Wainwright, an analyst for New America’s Health Policy Program, discusses how difficult yet vitally important it is for doctors and patients alike to understand medical risk information.  Citing a New York Times Opinionator piece titled Chances Are, from 2010, Wainwright writes:

“To make sure patients are fully informed means conveying information about a procedure’s risks and benefits in a way they can understand, often when there is neither the time nor presence of mind for SAT-caliber mathematical agility. The lack of accurate and evidence-based guidelines further complicates the situation. For many treatments, we know neither the true probability of success nor how to explain it clearly to a sick and worried patient…[but] patients MUST be fully informed. Only with an understanding of the risks…can a patient make the decision that is right for them.”

Wainwright’s post, Why the human brain seems to struggle with comprehending risk, underscores Jessie Gruman’s message in Should Doctors Protect Us from Data about Medical Risks?.  Her answer, in a word, is no:

“It seems unconscionable to withhold well-presented risk information about treatment in the relatively few instances when it is available…In their most general form, decision tools communicate that we have choices – that multiple treatment options are possible, there are trade-offs to be considered, and no guarantees exist regardless of our choice.  These are sobering but important messages for us to grasp as all of us, regardless of our numeracy skills and cognitive biases, are routinely forced to make critical decisions about our health care.”

The key to understanding medical risk is that the data are well-presented. Do you agree?  Was there ever a time when you would have rather not known the risks?  Or, did knowing the odds sway your decision? 

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