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Healthstyles Today: Ebola and Breastfeeding

wbaiThe World Health Organization (WHO) has estimated that 20,000 people will be infected with the Ebola virus before the current crisis in West Africa is contained. Earlier in the week, it reported that 120 health care workers have died from the disease, leaving unafflicted doctors, nurses, and other health care workers with fewer human resources to care for those who become ill from Ebola. In some cases, remaining health care workers have refused to work and whole hospitals have closed because of insufficient staff. The WHO has issued a roadmap to contain the spread of the virus but some believe that the international response to the spread of Ebola has been woefully insufficient.

Today on Healthstyles, producer and host Diana J. Mason, PhD, RN, interviews Kate Mort, Director of Human Resources for Medecin Sans Frontieres (MSF) or Doctors Without Borders, about the challenges this NGO faces in West Africa, particularly Monrovia, Liberia, as well as the response of the international community and need for volunteers to help to contain the spread of this deadly disease in which only 47% of those infected with the virus are surviving.

The program opens with HealthCetera, an update on health news, and ends with an interview with Nancy Manister, PhD, RN, FNP, Assistant Professor of nursing at Fairfield University in Connecticut about breastfeeding as part of a national conversation this month to raise awareness of the importance of breastfeeding to mother, baby, family, and society. You can listen to the interview here:

So tune in at 1:00 today on WBAI, 99.5 FM (www.wbai.org) in New York City.

Healthstyles is sponsored by the Center for Health, Media & Policy at Hunter College, City University of New York.

OPEN LETTER TO ANNA

Joy Jacobson:

This is a repost by Lacy M. Johnson. Her new memoir is “The Other Side,” which asks, Kelle Groom writes, “How is it possible to reclaim the body after devastating violence?” This letter seems to me to emphasize something undeniably important: the power of one person’s story to affect the lives of others. I’ll be reading her book soon.—Joy Jacobson, CHMP senior fellow

Originally posted on Lacy M. Johnson:

Dearest Anna,

It’s been almost a month since the New York Times’ published its investigation of the many ways in which Hobart and William Smith Colleges mishandled your sexual assault, and in that time Congress has introduced a new bill that relies primarily on stiff fines and strict reporting guidelines to shame institutions of higher education into better accountability. It’s progress, maybe, but that’s not why I’m writing. I’m writing because there’s a picture of you in the newest Times article — in which Senator Kirsten Gillibrand is announcing the new bill into a rack of microphones, and you’re standing beside her, papers in hand, mascara running.

I am writing to you because I know how it feels to stand in front of a room of powerful people and describe all the ways you’ve been made to feel weak. How the tears are not weakness but rage, though no one would believe you if you tried to explain…

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Chronic Illness: Nobody’s Talking. What Do Patients Actually Know?

 

Nobody's talking: New data shows just 12% of providers talk to their heart patients about end of life, while a recent CDC study suggest only 50% of patients receive education on chronic illnesses. Photo @shelserkin.

Nobody’s talking: New data shows that just 12% of providers talk to their heart patients about end of life, and a recent CDC study suggests only 50% of patients recall receiving education on their chronic illnesses. Photo @shelserkin.

A tweet caught my eye somewhere in the middle of Wednesday’s endless Twitter spin. NPR’s Health Blog, Shots headlined: “Doctors Hesitate To Ask Heart Patients About End-Of-Life Plans.” Huh. I was on my lunch break from working with cardiac patients, so I clicked in.

The blog post started with the familiar intro to congestive heart failure (CHF): a grim long-term prognosis, high incidence of hospital admissions, decreased quality of life, and likely death within five years of diagnosis. It ended with new research that suggests clinicians aren’t talking about these things with their CHF patients.

CHF is tricky. For a long time, patients feel fine; but as the disease progresses, their balance between thriving at home and succumbing to its complications in the hospital can come down to a packet of salt or a cup of water. It is the condition with the highest readmission rate, and requires exhaustive patient education about strict compliance with multiple medications and diet restrictions to keep complications at bay. Then, one day, all of the therapies stop working because the heart is just too worn out. That’s the day, the day that happens for all CHF patients, that doctors aren’t talking about, apparently.

The showcased data, yet to be published, was gathered from interviews with 100 MDs and NPs. Of the total, only a third said they were confident in even bringing up end-of-life care with their patients; 21% faulted patients’ readiness to chat, 11% of providers felt uncomfortable, and a very interesting 9% said they didn’t want to dash their patients’ sense of hope. In total, only 12% of the clinicians taking care of long-term CHF patients actually talked to them about end of life.

To be fair, practitioners aren’t reimbursed for these chats. They have to cram them into their pro-bono-goodwill budget. Maybe this is why a fraction of those in this study said they just didn’t have the time. But CHF is a disease so intimately tied to teaching patients to observe the progression of their symptoms – one pound of weight gained can mean a leap towards exacerbation – that it’s hard for me to understand how talks about prognosis and management can be separated.

It’s maleficent, really. When clinicians don’t discuss options and prognosis, patients are actually harmed by omission. Not talking fosters an unrealistic sense of cure, and patients miss out on amazing alternative options, like palliative care and hospice services. Yes, hospice is intended for patients with a six month prognosis, but the CMS-reimbursed program focuses on the management of comfort, not cure, and many patients actually improve and are discharged. Palliative care centers on maximizing symptom relief for chronic patients, like CHFers, in tandem with medical therapies. In a disease where the only real cure – heart transplant – isn’t offered to the majority of patients, therapies with the goal of maximizing quality of life are worth bringing up sooner rather than later.

One of the authors of this study, which hails from the Mayo Clinic, said that when providers were asked if they were talking about end of life issues with their patients, many of them said they wait until things get bad or until they have to do something new, like start a medication or talk about more aggressive therapy. Instead of cutting to the chase at the get-go, giving patients the true information about their prognosis right away, patients are faced with it when things look grim, and when it’s likely to be an awful surprise.

This is the point where I step in: the bedside, ICU nurse. I see CHF patients when their heart is so tired that it can’t pump blood to the body any longer, and it backs up into their lungs. Fluid-filled lungs don’t function very well, so the patients end up having to decided if they want the support of a ventilator while they gulp for air and foam at the mouth in a vicious attempt to stay alive. How is this best-case scenario? I don’t know about you, but I’d prefer a quiet, calm doctor’s office for the setting of this chat, not the point where my life is hanging in the balance with a bunch of strangers and fear.

I sent out a tweet to the ‘sphere after reading this write up. I asked the question: “I wonder how many nurses are starting these conversations?” Almost in an eerie response to my query, the Robert Wood Johnson Foundation’s Human Capital Blog tweeted out a blog post about a recent CDC study saying that nurses and PA’s are more frequently giving patients chronic disease management education than physicians. It’s true; I often talk to my patients about their illnesses in honest ways, bringing up options different from their aggressive – and often futile – hospital care.

While CHF wasn’t one of the chronic conditions noted, the CDC study’s results were pretty jarring: less than 50% of patients receive education on their chronic condition. The reality of all chronic conditions, especially CHF, is that they eventually become acute. If we’re not talking about end of life in the beginning, and only half of us are educating in the duration, what, exactly, do patients know about their diagnoses?

Thanks to Hollywood and the silver screen, the public has been long familiar with the stereotypical oncologist prognosis scene: “Mr. Jones, you’ve got six months left to live,” are now common words in our vernacular. But rarely, if ever, do I hear people telling me about diagnoses with other chronic conditions (yes, cancer is a chronic condition) like CHF, tied to time-left-to-live quantifications.

Why not? Recognizing the possibility for death, starting at diagnosis, seems to bring motivation and acceptance in patients. CHF patients should be traveling the globe, checking off their bucket lists, planning for a proactive and comfortable death just as much as cancer patients seem to be. Until we stop cowering behind our fears of introducing end of life care as a part of chronic disease management, patients will continue to be cheated of a fair chance to live the life they have left to its attainable maximum.

Maybe all of us conversation-starters should remember: Hope is only helpful when directed at reality. Get chatting.

Other Wait Times: The Senate’s Responsibility for the VA Crisis

Linda Schwarz

Linda Schwarz

While the media ramps up coverage of Congressional calls for Secretary for Veterans Affairs Eric Shinseki’s resignation, the Senate ought to examine its own role in this crisis.

Two of three assistant secretary positions that have gone unfilled in the Veterans Administration, because they are awaiting Senate confirmation. Linda Schwartz was appointed last summer by President Obama to be Assistant Secretary for Policy and Planning.  A veteran and nurse, Dr. Schwartz is the Commissioner for Veterans Affairs in Connecticut. She served as a nurse in the Air Force during the Vietnam War before becoming disabled from a freak accident while on a cargo plane that left her disabled. She is unwavering in her commitment to serving the nation’s veterans.  To learn more about her story, watch this video that was produce by a student at Yale University.

On November 19, 2013, the Senate Committee on Veterans Affairs voted unanimously to support Schwartz’s appointment and she was expected to quickly be approved by the full Senate. Six months later, the full Senate has not even considered her nomination.

While Congress wants to hold Shinseki accountable for the excessive and unacceptable wait times for veterans using the VA health system, who will hold the Senate accountable for its delays in ensuring that the VA has the leadership it needs to fix this problem and prevent others from occurring?

 

Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing, Hunter College

 

 

 

 

Healthstyles Returns to Daytime

Healthstyles will return to an hour program on WBAI, 99.5 FM (wbai.org) on Thursdays from 1:00 to 2:00 beginning today. (The station is in fundraising mode for the month, so we will only be on today and May 22nd, resuming weekly in June.) Today’s program will focus on the health challenges facing women veterans, including homelessness, and how some communities are building support services to help them to heal.
My guests will be Staff Sargent Juliet Taylor and University of Fairfield Professor Dee Lipmann,  a nurse veteran of the Vietnam War.

I hope you will tune in and make a donation to support nurse – produced radio and WBAI by calling in a donation between 1:00 & 2:00 at 212.209.2950. Or go online and make a donation in support of Healthstyles at http://www.give2wbai.org/category_s/1856.htm

See you on the air!

Diana Mason, RN, PHD, FAAN, Rudin Professor of Nursing

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