“DEFINING HOPE”

We follow the journey of hospice patients who are “Defining Hope,” in a film that investigates the choices patients with life-threatening illnesses make in their final months and days, from how much medical technology they accept, what they hope for, and how that hope evolves when life is threatened. Filmmaker Carolyn Jones, and a hospice nurse featured in the documentary, Diane Ryan, join us for a candid conversation.

Aired on April 4, 2018.

TRANSCRIPT

> DEFINING HOPE IS A POWERFUL DOCUMENTARY WHICH FOLLOWS EIGHT PATIENTS WITH LIFE THREATENING ILLNESSES AND SOME OF THE EXTRAORDINARY NURSES WHO CARE FOR THEM.

IT SHINES A LIGHT ON NURSES AND PALLIATIVE CARE, TAKING CARE OF PATIENTS WHO ARE FAR FROM GIVING UP ON LIFE EMPOWER PATIENTS.

IF SOMEONE SAID YOU'RE GOING TO GO NOW OR FOUR MONTHS, I WOULD TAKE THE FOUR MONTHS.

THIS IS MY MOM'S BIRTHDAY.

THAT'S ME.

I JUST KEEP MOVING.

TOMORROW I GET CHEMO AND TODAY I GET TO TEST DRIVE.

I THINK YOU CAN APPRECIATE LIFE BEFORE YOU CAN APPRECIATE DEATH.

YOU'RE NOT AFRAID.

WE'RE ALL AFRAID OF DYING.

FIVE MONTHS, SIX MONTHS, I DON'T CARE.

I'M HERE NOW.

AND JOINING US NOW ARE CAROLYN JONES THE PRODUCER AND EXECUTIVE PRODUCER OF DEFINING HOPE AND DIANE RYAN WHO FEATURES PROMINENTLY IN THE DOCUMENTARY.

THANK YOU BOTH FOR BEING HERE.

WHAT MADE YOU WANT TO MAKE A FILM DEALING WITH THE SUBJECT THAT MOST OF US DON'T EVEN WANT TO THINK ABOUT, DEATH AND DYING.

IT WAS A JOURNEY.

IT STARTED WITH A PROJECT I DID CALLED THE AMERICAN NURSE, AND I INTERVIEWED NURSES ALL OVER THE COUNTRY AND I DID A BOORKK AND FILM CALLED THE AMERICAN NURSE.

NURSES WERE TELLING ME THAT WE WEREN'T DYING VERY WELL.

ONE NURSE SAID TO ME, AMERICANS THINK THAT DEATH IS OPTIONAL.

AND I STARTED TO THINK ABOUT IT, AND I THINK IT'S TRUE.

I THINK THAT WE KIND OF THINK WE CAN BUY OURSELVES OUT OF THIS PIECE OF BUSINESS.

AND WE CAN'T.

SO I DECIDED I WANTED TO DO A FILM THAT REALLY ADDRESSED END OF LIFE ISSUES AND HOW PEOPLE WERE DEALING WITH IT.

DID YOUR OWN IDEAS ABOUT DEATH AND DYING CHANGE IN THE COURSE OF MAKING THE FILM?

OH, MY GOODNESS.

I HAVE DO SAY YES.

I STARTED OFF THINKING THAT WE HAD KIND OF A SOCIAL RESPONSIBILITY AS MEMBERS OF SOCIETY TO KIND OF KNOW WHEN OUR CARD WAS UP, TO KNOW WHEN IT WAS TIME TO STOP THE NEXT TREATMENT OR THE NEXT PROCEDURE.

AND YOU KNOW, I DISCOVERED OVER AND OVER, THAT MOMENT DOESN'T COME, THE WILL TO LIVE IS AN AMAZING THING.

SO I STARTED TO REALIZE THAT WE HAVE TO RESPECT EACH AND EVERY PERSON'S CHOICE ALONG THE WAY.

YOU KNOW, DIANE, ONE REVIEWER OF THE DOCUMENTARY COMMENTED THAT YOUR COMMITMENT TO YOUR WORK AND THE SENSE OF FULFILLN'T IT OBVIOUSLY GIVES YOU COMES THROUGH POWERFULLY IN YOUR INTERVIEWS AND YOUR INTERACTIONS WITH YOUR PATIENTS.

WHAT IS IT ABOUT THIS WORK THAT MOTIVATES YOU IN SUCH A WONDERFUL AND POWERFUL WAY?

BECAUSE IT'S SO REAL.

WHAT I LIKE ABOUT IT IS BECAUSE YOU'RE SEEING PEOPLE IN THEIR OWN REAL STATE ABOUT MAKING DECISIONS.

I THINK I ENJOY BEING THERE AS AN ADVOCATE AND LISTENING TO THEM AND SHARING, THEY DON'T KNOW I'M SICK, THEY NEVER KNEW I WAS SICK.

BUT I LOVE THE FACT THAT I WAS ABLE TO BE THERE FOR THEM AND I LOVE THAT SUPPORT THAT I COULD GIVE THEM.

IN THE COURSE OF THE FILM OF OVARIAN CANCER THAT CAME BACK WHILE YOU WERE WORKING ON THE FILM, HOW DID THAT AFFECT YOUR RELATIONSHIP WITH YOUR PATIENTS?

HAVING CANCER CHANGED MY WHOLE VIEW AND THE WAY I TREAT CANCER AND ONE I THINK IS PAIN, AND THE PAIN IS WHAT I WANTED TO HIDE.

AND THAT BECAME SUCH A REALLY WAY OF CARING FOR THEM, THE WAY I WANTED TO BE CARE FOR, BECAUSE I KNOW HOW SICK I WAS.

WHEN I CAME BACK AFTER BEING SICK I WAS VERY DIFFERENT.

HOW ARE YOU DOING AGAIN?

I'M ACTUALLY DOING WELL.

CAROLYN, THE THING THAT REALLY COMES THROUGH IN THE FILM, IS THAT THERE'S A POWER WHEN A PATIENT HAS CONTROL OVER THE PROCESS OF DEATH AND DYING, IT'S A LITTLBERATION.

BUT WHAT ABOUT NOT WANTING TO BE A BURDEN TO THEIR FAMILY?

THE WILL TO LIVE TRUMPS EVERY OTHER DECISION.

AT THE END OF LIFE, PEOPLE ARE THINKING OF SO MANY DIFFERENT THINGS, BUT WHAT MAKES LIFE WORTH LIVING IS WHAT DRIVES THEM IN THE END.

AND I DON'T THINK PEOPLE, YOU SHOULD SPEAK TO THIS MORNE THAN YOU OR I.

IF THERE WAS A WILLIN TO LIVE, KICKED IN.

BUT THE QUESTION IS ARE WE LISTENING TO OUR PATIENTS AND ARE WE DOING THE RIGHT THING FOR OUR LOVED ONES.

OUR LOVED ONES OR FOR THE MEDICAL PROFESSION?

BOTH.

FAMILY MEMBERS FIRST AND FOREMOST, BECAUSE VERY OFTEN THE FAMILY WILL HAVE A DESIRE THAT THE PATIENT REALLY DOESN'T HAVE.

YOUR EXPERIENCE, DIANE, THAT THE PATIENTS AND THEIR FAMILIES ARE MAKING THE DECISIONS RIGHTLY?

I MEAN ON THE RIGHT BASIS?

I ACTUALLY THINK THAT THERE'S ALWAYS A CONTROVERSY WITH THE FAMILIES.

THE FAMILIES ARE STILL AFRAID WHEN THEY SEE THEIR LOVED ONES DYING, THEY DON'T WANT TO SEE THEM DIE, SO THEY'RE TRYING EVERY MEANS POSSIBLE.

AND THAT'S THE UNFORTUNATE PART.

BECAUSE WE HAVE ALREADY TRIED EVERY MEANS AND NOW THE PATIENT IS SAYING WHAT THEY WANT, AND THE FAMILY IS SAYING -- AND THERE'S ALWAYS A BIT OF TENSION THERE AND THEY'RE NOT QUITE UNDERSTANDING THAT THIS IS WHAT THE PATIENT WANTS.

IT'S REALLY NOT UP TO THEM ANYMORE.

AND I THINK IT'S THE CHILDREN OR THE FAMILY, IT'S VERY HARD FOR THEM TO LET GO.

THANK YOU SO MUCH, AND DIANE, THANK YOU SO MUCH, GOOD LUCK TO BOTH OF YOU, IT'S A WONDERFUL FILM.

DEFINING HOPE PREMIERS APRIL 5 AT WNET AND YOU CAN CATCH IT AGAIN ON APRIL 7 AT 5:00 P.M.

Funders

MetroFocus is made possible by Sue and Edgar Wachenheim III, the Sylvia A. and Simon B. Poyta Programming Endowment to Fight Anti-Semitism, Bernard and Denise Schwartz, Barbara Hope Zuckerberg, Janet Prindle Seidler, Jody and John Arnhold, the Cheryl and Philip Milstein Family, Judy and Josh Weston and the Dr. Robert C. and Tina Sohn Foundation.

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