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Posts Tagged ‘palliative care’

Has Palliative Care’s Media Moment Arrived?

Media momentAs someone interested in public perceptions of the end of life, I’ve been encouraged by the recent increased media coverage of this topic.

In just the past few weeks, TIME magazine did a story about how the baby boomers may change end-of-life care (http://ti.me/16PbmL1 ), NPR host Scott Simon tweeted from the ICU bedside of his dying mother (http://n.pr/18PV8Vx ), various news outlets have discussed palliative care in regard to Nelson Mandela’s medical condition (http://abcn.ws/18iy3XL, http://bit.ly/17lCH6j, http://ind.pn/1bGdPGP ), and death cafes are springing up in various cities (http://nyti.ms/13Wzh93).

Now, this may be wishful thinking, but could we be on the cusp of a change in how the public views the end of life? This is the premise Lawrence Brown provides in his “Stealing on insensibly: End-of-life politics in the U.S” published in the October 2012 Health Economics, Policy, and Law. There he states that “the nation appears to be… making incremental progress toward the replacement of clinical and other types of dogma with end-of-life options that honor the preferences of the dying” (http://www.ncbi.nlm.nih.gov/pubmed/?term=stealing+on+insensibly).

If so, palliative care’s time may have come.

The Name Debate: “Palliative” vs. “Supportive” Care

On this issue I’d long been a believer in “palliative”. After all, most Americans don’t know what palliative care is http://bit.ly/jIChMM and so it seemed an opportunity to build awareness behind the concept. (This is the ideal marketing situation where you get to define what your product or service stands for.) Read the rest of this entry »

Death and Dying in the Magic Kingdom

I just came back from teaching a palliative nursing course at the Disneyland Hotel in California. That might seem an odd juxtaposition but, from a self-care standpoint, it was great. First, the hotel is consistently, and occasionally relentlessly, cheerful with perky “cast members” greeting you brightly at all hours of the day. Guests walk around wearing Mickey Mouse ears, princess dresses and tiaras, and other aspects of various Disney characters. The weather was gloriously sunny, and warm. The course was the End-of-Life-Nursing- Education Consortium’s (ELNEC) Summit. This is the concurrent offering of its Core, Critical Care, and Pediatric Train-the-Trainer curricula. Read the rest of this entry »

Happy Birthday thanks, in part, to palliative care (but not what you think!)

I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.

She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.

The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!

Aversion to Planning for Serious Illness

We all know that a majority of Americans, 70-80% depending on the study, do not have advance directives or do Advance Care Planning (ACP). There’s a lot in the literature that shows people are reluctant to plan for an unknown or hypothetical future, or think about their own disability and eventual death. One hope I cherished was that the caregivers of those experiencing serious illness would be the group to take leadership in planning for their own futures. Read the rest of this entry »

Push and Pull Opportunities for Palliative Care

The good news is that it’s the same baby boomer generation who changed the medical system for childbirth who might now the one to advocate for changing the medical system for serious illness. After all, baby boomers are all about choices and are used to getting their way given their numbers. So, using the new polling information to develop communication that can start a “pull” for palliative care, combined with our efforts to “push” its benefits through our clinical, research, and policy efforts, could synergistically result in increased palliative care access. Let’s get going! Read the rest of this entry »

Palliative Care in LA Times

LA Times columnist Steve Lopez profiles a gentleman with end-stage cancer who, along with his family, is receiving palliative care support at home–”Not Ready To Die, But Prepared”. In this December 4th piece, Mr. Lopez also references some palliative care research, health care policy implications and questions why palliative care and hospice are often not positively represented in political discourse on these subjects.

While at the LA times site, its also worth reading Mr. Lopez’s other, more personal piece, “When Death is Certain, but Dignity is Not.”  In response to his story, many readers have responded with their own.

Life’s Best Invention?

Mr Jobs was an intensely private person, something I fully respect. Some hope that his upcoming biography will reveal more. One can only suspect, based on his approach to everything else in life, that in his dealing with cancer he was equally meticulous, innovative, and unorthodox.This article in NYT, says that he spent his last days at home, surrounded by family. He carefully chose those that wanted to visit him, and everyone else was either ignored or told to stop calling. He met with his biographer, he went to work when possible. He had dinners with his family. With all of his uniqueness, he was not unlike “everyone else”. Read the rest of this entry »

Palliative Care State-by-State report

CAPC has just released a “report card”reflecting on the state of palliative care across the nation. THe report was created for the first time in 2008, and apparently as a nation since then we went from a C to a B. What it means in reality? I guess more quality palliative care programs across the nation.

Seven states and DC and got an A, more than half of the states are ranked B, and there are two that got an F. One can download the full report here or just look at specific state statistics.

 

Decision Fatigue

An article in the August 17th New York Times Sunday Magazine by John Tierney Do You Suffer From Decision Fatigue? seems pertinent to palliative care patients and families. The article reviews recent data that confirm that the complexity of making choices or decisions can be very fatiguing. This can result in Read the rest of this entry »
Can We Talk?
Watch and share this five minute video about the need for prophylactic end-of-life conversations. Laura Heldebrand, an ICU nurse tells her mother's story.
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