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Carolyn Jones, Sally Welsh CEO HPNA, Barbara Glickstein

On Thursday, November 2, in honor of National Hospice and Palliative Care Month, a Congressional Hearing was held –  Advance Care Planning: Honoring Patient’s Wishes at the Cannon House Office Building. It was co-hosted by Congressman David P. Joyce (R-OH)  and Congresswoman Tulsi Gabbard, (D-HI), co-chairs of the Congressional Nursing Caucus.

Congresswoman Eddie Bernice Johnson (D-TX) attended the hearing and spoke about the importance of nursing’s role in Palliative Care and Hospice.

This hearing was organized by Hospice and Palliative Nurses Association (HPNA)Hospice and Palliative Nurses Foundation and Hospice and Palliative Credentialing Center.
Carolyn Jones, Director of the documentary, Defining Hope, screened select segments of her documentary highlighting nurses’ critical role supporting people at the most fragile junctures in life when facing serious illness.
Barbara Glickstein, RN, MPH, MS, is Nurse Advisor and Consultant to Carolyn Jones Productions, spent the last two years working with the production team on the documentary, Defining Hope and attended the hearing.  She is also Director, Communications, Media Projects, at the George Washington University School of Nursing, Center for Health Policy and Media Engagement.

Congresswoman Gabbard issued this press release about the hearing.

[caption id="attachment_13501" align="aligncenter" width="3000"] Carolyn Jones, Sally

Over the past two years, I was nursing consultant and advisor to the production team of the new film, Defining Hope. As we worked, we spent hours together having difficult, but meaningful conversations about the end-of-life. Most of us came to the project possessing definite ideas about our end-of-life wishes. What we didn’t expect to happen, resulting from filming the lives of the people profiled facing life-threatening illness, was recognizing the real moments of ambiguity people have about treatment and end-of-life choices.

My dream is that this film is a tool used by people in the healthcare field to look at patients through a different lens, and also by the public who can hear the words of family members in the film as they let their loved ones go, or support their wishes. We need to let our loved ones know what we want.

– Carolyn Jones, Filmmaker, Defining Hope

Most people don’t want to talk about death. You might have that conversation silently in your head lying in bed at night planning your next move with a loved one the next time the moment feels right. It’s a hard conversation to kickstart, even with people you love.

Filmmaker Carolyn Jones started interviewing nurses over six years ago for the The American Nurse Project. She reports that she repeatedly heard from nurses across the country that we’re not dying very well in this country. She saw this as a challenge to changing that and made the film, Defining Hope.

Carolyn Jones poured her passion and guts into the making of the documentary, Defining Hope—which will premiere at the Academy on November 1st. This film joins the ranks of the national movement to change the culture around death in America. It will impact the lives of individuals and families and bring much-needed attention on current federal policy on end-of-life care.

The documentary weaves together stories of patients who are confronted with life-threatening illnesses. Through the stories of these patients, families, nurses, and health care professionals, Defining Hope brings the conversation around quality end-of-life care to the forefront of our minds.

It’s hard for people to think about end-of-life and death so the topic demands that the film be entertaining. It may make you cry, but you will also laugh. It’s a film that hopes to normalize conversations about the end-of-life, and help us make better choices for ourselves and our loved ones. It hopes to challenge you to think about what makes life worth living.

Defining Hope follows these three patients, and others, as they face death, embrace hope, and ultimately redefine what makes life worth living: Diane is a nurse caring for end-stage cancer patients who is confronted with her own complex diagnosis; 23-year-old Alena undergoes a risky brain surgery that has the potential to damage her short-term memory and 95-year-old Berthold lives with his elderly wife who struggles to honor his wish of dying peacefully at home.

The deeper we dove into the topic of death, as we made the film the freer we felt to engage our family and friends in conversations about end-of-life. It may be a leap we all have to take.

Upcoming Screenings

The George Washington University School of Nursing’s Center for Health Policy and Media Engagement and Center for Aging, Health and Humanities are proud to host a special screening of Defining Hope on Thursday, November 9 at 7 PM in Washington, DC.

Defining Hope premiered October 17 at the Heartland Film Festival in Indianapolis, Indiana and won “Best Premiere, Documentary Feature” of the festival.

To find more opportunities to view Defining Hope or to learn more, visit Hope.film.

Support

The film’s research and production were generously funded in part by the Jonas Center for Nursing and Veterans Healthcare, a philanthropy dedicated to advancing the nursing profession and improving healthcare through grants and programs. Support also comes from the American Nurses Foundation, dedicated to transforming the nation’s health through the power of nursing.

The film is also made possible through the generous support of Jeannie Patz Blaustein, The E. Rhodes and Leona B. Carpenter Foundation, and The Rita and Alex Hillman Foundation. Defining Hope is distributed by KAOS Connect and Screenvision.

Contact Hours

Nurses will receive 1.25 free contact hours for watching the film and completing the evaluation thanks to the generous support of Walden University. Walden University is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation.


This blog post was originally published on the New York Academy of Medicine’s News & Blog on 10/31/17 and reposted here on HealthCetera with permission.

Over the past two years, I was

What force creates a space in society where many are incredibly quick to speak yet, remarkably slow to listen and understand? When will the race to judge and silence end, and where will we be as a society if it continues? Take for example the debate regarding whether National Football League (NFL) players should be forced to stand during the national anthem or allowed to take a knee. I recently asked a colleague to explain what he meant about players being disrespectful when they knelt. What I heard was that kneeling was wrong because so many died for our country and standing was the right thing to do during the national anthem. I then asked him what he believed kneeling meant to the NFL players. The response that I received was discouraging yet not too surprising. He informed me that the intent of players who knelt didn’t matter. “It didn’t matter?” I asked. He earnestly believed that the players who knelt were wrong, needed to stand, and should be forced to protest differently.

What happens when we toss alternative views into an annihilating abyss? In healthcare, it is the dismissal of information that increases medical errors and harms patients. In the justice system, not considering all the evidence places the innocent behind bars. A single narrative in academia could contribute to stereotypes and result in higher attrition rates for some groups. Precisely what makes a person believe so firmly that their perspective is more significant or superior to someone else’s? I get it, being right tends to feel good. Conversely, having someone oppose your views could unleash a plethora of adrenaline and contribute to emotional turbulence and unrest. It could be problematic for some individuals to step in front of their stereotypes and recognize how their biases could create a cognitive dissonance. Nevertheless, society must move to discuss the stereotypical dynamics that thwart efforts to align behaviors with moral obligations.

When people perceive an opposing view as threatening, taking a moment to determine how to proceed safely could be challenging. Rather than responding in favor of a new idea or attempting to see how both views could be correct, some who feel threatened tend to vehemently refuse to acknowledge or understand an opposing narrative. Recall the case of the NFL players kneeling. Consider taking a brief, yet intentional pause when different perspectives challenge your ideologies or stereotypes. Recognize that suspending judgment takes courage, humility, patience, and discipline. Some practice mindfulness to regain control of a hijacked amygdala.

Having a willingness to listen to an unfamiliar perspective could make the promise of diversity more attainable and sustainable. However, not all individuals possess a level of emotional maturity that enables them to hear, understand or be questioned by people who they perceive as “different.” To achieve greater understanding, one should work to understand the alternative perspective. Mind you; it is a commitment to being empathic instead of being forced to agree. Empathy allows individuals to speak to an alternative point without having to dismiss their beliefs. Indeed, empathy could dampen some of the tensions surrounding difference.

Diversity begets difference. As institutions become more diverse, individuals who have the capacity to listen and accept difference will be of immense value. But where are these qualities practiced and who best demonstrates them? Educational institutions should develop policies that ensure listening and understanding are the norm and create environments that strengthen the capacity of students to exemplify these skills. Governmental agencies and private organizations should follow academia’s lead and select leaders who can model these characteristics. In closing, leaders should not seek to divide or fuel emotional discord. They should possess diplomacy, find common ground, and move institutions towards a place where listening and understanding is an established norm.

 

What force creates a space in society