“DEFINING HOPE”

April 05, 2018 at 5:15 am

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.

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>> 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.