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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

Why Nurses Need A Google Doodle

National Nurses Day is less than a month away, and I’m not excited about it. I’ve received one too many “Code Brown Queen” cards in the span of my career. More frequently celebrated with cheesy, tongue-in-cheek gifts than genuine recognition of the achievement, skill and accomplishments of its 3.1 million members, this nurse wonders if it isn’t time to change things up on May 6th.

I don’t know about you, but I’ll pass on the joke-y cards, magnets and sweatshirts. I don’t need the swag or even the extra attention; I’m just doing the job I feel called to, after all. But since the holiday exists, I think we should use it as an opportunity to actually further the visibility of the nursing profession in a proactive and intelligent manner.

So, this year, I’m asking for the Nurses Week gift I actually want: Nurses and their supporters to demand a National Nurses Day Google Doodle. 

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Maybe, if the millions of Americans Googling something on May 6th saw a tribute to modern day nursing, we’d be able to start a conversation about our profession that’s long overdue. 

The Google Doodle team calls for suggestions that “celebrate interesting events and anniversaries that reflect Google’s personality and love for innovation.” Nursing was founded on the laurels of individuals who changed the course of medicine, and continues on the backs of nurses who daily care for and protect millions of lives through creative troubleshooting, critical thinking, and fast-paced decisions. Florence Nightingale practically discovered germ theory, most modern-day hospital procedure is based on nursing research, and any nurse who has worked short-staffed, survived the shift by relying on innovation.

So why hasn’t Google celebrated us since they started doodling 14 years ago? (To be fair, they did a small, somewhat belittling doodle for Nightingale’s birthday in 2008). 

I don’t blame Google for neglecting us every year, exactly. The trouble with us nurses, is we don’t talk about what we do. Our creativity and guile and innovative genius lays locked within the halls of our practice. The tiny work-arounds we find and share with each other at the bedside change lives, but are rarely known by anyone but nurses, much less understood publicly. Nursing research, although utilized in almost every existing medical decision and implemented at the Federal level, is often poo-pooed as a soft science. And for some reason, we can’t manage to break into Hollywood as anything but drug abusers or tyrants. We’re largely missing from policy debates, few of us have paced the floors of Congress, and the pages of our newspapers are void of our heroic stories and focused opinions. It’s time we start sharing what we do in a way that those we serve can understand.

With our foundations and our future in mind, I think nurses – all 3.1 million of us – as American innovators, need a shout out from Google, the portal of the universe, this National Nurses Day. Maybe, when we’re showcased on the most innovative website on the internet, our country will realize how much we deserve to be there, and we will start actively telling them why.   

So, here’s my plan: Starting this Sunday, I’ve e-mailed the Google Doodlers a suggestion for a doodle celebrating modern-day, living American nurses, calling attention to our innate innovative spirit. In each e-mail, I’m showcasing a living nurse innovator. Sunday, I wrote about Cathy Papia, a nurse from my hometown of Buffalo, who started the White Wreath Protocol, a simple way to alleviate the suffering that comes along with dying in an ICU when a hospice unit is unavailable. Monday, I told the doodlers about Mary Wakefield, the Obama-appointed administrator of the HRSA. Yesterday, doodlers got a briefing on the profoundly innovative contribution of UCSF’s Living Legend, Patricia Benner, and today, I reminded them of Carol Gino, whose voice has peppered the profession with innovative narrative for decades.

Tune in, and share: I’m posting the e-mails I send to the Google Doodle team on my blog, This Nurse Wonders, and I’ll re-hash here, on the Facebook page, Why Nurses Need A Google Doodle, and via @12HourRN.

Nurses are amazing, multi-faceted clinicians, inventors, policy makers, artists, problem-solvers and care-givers. Long before Google became a verb, “nurse” entered the language of the globe and changed it forever. We’re still here to tell our tales; perhaps Google will give us a boost.

Nurse Radio in Liberia

 

 

Earlier this week, PBS’s News Hour featured a story about Aaron Debah, a nurse in Liberia who is the only mental health worker for a half million people in Liberia–a country that was engaged in civil war  for 14 years. The story notes that 40% of the population suffers from PTSD, and this includes the child soldiers who were forced into killing and maiming and now suffer the psychological consequences. Debah uses the airwaves to encourage people to talk about their emotional struggles, hoping that their stories and conversations will encourage others to realize that they are not alone.

Two points from the video are striking. First, Sean Mayberry of StrongMinds notes that 90% of the developing world has no access to mental health services. And the need isn’t just in war-torn countries. This week on Frontline, a stunning report on TB in Swaziland showed the emotional devastation that TB has inflicted on whole families. It’s not just the TB, including those who suffer daily with multi-drug-resistant (MDR) TB. It’s the often-toxic medications that must be taken precisely or the person can develop XDR, an even more resistant and deadly form of TB. The story included examples of people with MDR and XDR who are suffering from severe depression that has sometimes led to suicide because of the miserableness and hopelessness of their lives. The need for mental health care is great.

Second, the Carter Center is working to expand Swaziland’s capacity for  mental health care by training nurses to develop their knowledge and skill in providing mental health care. Former First Lady Rosalyn Carter has long been an advocate for improving mental health care worldwide. This program will be an interesting one to watch. It doesn’t seem like enough but it’s a start.

In the U.S., we are struggling with implementing the Affordable Care Act’s requirement for mental health parity–requiring insurers to cover mental health problems to the same extent that they cover physical health problems. Certainly, the primary care workforce in the U.S. struggles to provide frontline mental health care. Mental health nurse practitioners and clinical nurse specialists can help our situation, though barriers remain to these clinicians being able to practice to the full extent of their education and training. In the face of Liberia’s situation, it’s hard to justify our own continuing restrictions on mental health workers in the U.S.  Time to get perspective.

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

 

 

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