Transcript: Dealing with Death | Nov 22, 2000

The title “More to family” appears inside the shape of a house.

The opening sequence shows a wooden table with a small lit candle as several words fly by: Relationships, education, caregivers, home and family.
Fast clips show different sets of hands performing activities on the table such as pulling petals from a daisy, drawing a big red heart, tuning a violin, flipping through the pages of a book, cooking, and pouring a glass of red wine.
In animation, the title appears inside the shape of a house: “More to life.”

Then, Karen Horsman appears in a studio with yellow walls and a small TV set in the background, which reads “More to life.”

Karen is in her thirties, with short wavy brown. She's wearing a dark burgundy blazer over a black shirt.

She says
Hello, I’m Karen Horsman, sitting in for Maureen Taylor.
Welcome to More to Life.
More than 2 million Canadians care for ailing relatives and friends and that number is going to skyrocket with the aging baby boomers.
Today we’re going to talk about how to give and get care.
What to know, what to get, and where to go to get it.
Later on the show, if you’re a caregiver, we have a unique story for you. An opportunity about a free mini-vacation at a bed and breakfast in Lindy, Ontario.
You wouldn’t want to miss that.
Also Heather Robinson is going to be here.
The AUTHOR OF THE BOOK “MEETING
DEATH”

A picture of the book appears briefly. The cover features a picture of a Renaissance oil painting of angels welcoming a person into heaven.

Karen continues AND FIRST WE WANT TO
TALK ABOUT WHAT IT WOULD BE
LIKE TO RE-LIVE THE
HOLOCAUST OVER AND OVER AGAIN.
THAT HAPPENS TO SOME PEOPLE
WHO SUFFER FROM DEMENTIA.
PAULA DAVID IS HERE TO TALK
ABOUT IT.

Paula sits in the studio. She’s in her late fifties, with short gray hair. She’s wearing glasses, a black cardigan and a white turtleneck.

Karen continues SHE IS A SOCIAL WORKER AT
THE BAY CREST CENTRE FOR
GERIATRIC CARE.
THEY'VE DEVELOPED A GUIDE
FOR CAREGIVERS FOR PEOPLE
WHO HAVE SUFFERED IN THE
HOLOCAUST.
NOW THIS GUIDE CAN ALSO
APPLY TO OTHERS WHO HAVE
SUFFERED FROM SEVERE TRAUMA,
AND PAULA'S HERE TO SHARE
WITH US HOW THIS WORKS.
THANKS SO MUCH FOR COMING IN,
PAULA.

Paula says MY PLEASURE.

Karen says IN TERMS OF THIS
GUIDE, TELL ME WHAT WAS DONE
TO HELP THOSE WHO SUFFER --
MAYBE WE SHOULD BACK UP
FIRST AND FIND OUT HOW IT
MANIFESTS -- MANIFESTS
ITSELF.
WHAT DOES THE VICTIM SUFFER
FROM?

A caption appears on screen. It reads "Paula David. Baycrest Centre for Geriatric Care."

Paula says FIRST OF ALL SURVIVORS OF
TRAUMA, DUE TO WAR, WHICH
THEN IS ALL OF THE SURVIVORS
OF THE HOLOCAUST, AS WELL AS
OTHER SURVIVORS OF TRAUMA,
ALL HAVE VERY INDIVIDUALISTIC
AND UNIQUE REACTIONS.
SOME MAY HAVE UNDULY
SCOMPUFRD BEEN IN A LESS
SEVERE SITUATION THAN THEIR
NEIGHBOUR, WHO HAS OTHER
COPING MECHANISMS OR HAS
JUST MANAGED TO COMPENSATE
AND ADAPT AND ADJUST.
MOSTLY WHAT WE'RE FINDING,
THOUGH, IS ALL OF THE
SURVIVORS PROVE THEMSELVES
AM MAYINGLY RESILIENT AND
STRONGER THAN ANYBODY COULD
EVER HAVE ANTICIPATED, AND
NOW WE'RE SEEING, AS THEY'RE
AGING AND SOME OF THE
RELATED ILLNESSES,
PARTICULARLY COGNITIVE
IMPAIRMENT, IMPACT ON THEM,
PERHAPS THEIR COPING
MECHANISMS ARE AGING AS WELL,
SO IT MAKES IT MORE
COMPLICATED.

Karen says SO FOR INSTANCE,
IF YOU COULD JUST ILLUSTRATE
WHAT WOULD HAPPEN TO A
PERSON SUFFERING FROM THIS?

Paula says WELL, A CLASSIC EXAMPLE
THAT SHOWS BOTH HOW
SOMETHING MAY IMPACT ON AN
OLDER ADULT, AS WELL AS THE
UNIQUE DIFFERENCES WOULD BE
A SHOWER FOR AN OLDER PERSON
THAT THE CAREGIVER WOULD
COME IN AND SAY Mrs. SMITH,
WE'RE GOING TO HAVE A SHOWER
NOW.
THAT COULD TRIGGER A
HORRIBLE MEMORY FOR A
SURVIVOR OF A CONCENTRATION
CAMP WHOSE FAMILY HAD BEEN
GASSED IN WHAT THEY WERE
TOLD WERE SHOWERS AND IN
FACT MURDERED THERE.
ON THE OTHER HAND, IT WOULD
NOT NECESSARILY BE THE
ALTERNATIVE THING TO WALK IN
AND SAY “Mrs. SMITH” WE'LL
HAVE A BATH BECAUSE MANY,
MANY PEOPLE WERE DIPPED IN
TUBS OF CHEMICALS FOR
MEDICAL EXPERIMENTATION.
I MEAN, IF THOSE PEOPLE
SURVIVED AND HAVE
ASSOCIATIONS WITH THAT
MEMORY.
ON THE OTHER HAND THERE WILL
BE PEOPLE WHO MAY HAVE BEEN
IN CAMPS, MAY HAVE SEEN
PEOPLE GASSED, MAY HAVE BEEN
ACTUALLY TORTURED IN TUBS OF
CHEMICAL, BUT THEN THAT
DOESN'T TRIGGER THAT
PARTICULAR MEMORY AND
THEY'RE JUST LOOKING FORWARD
TO GETTING CLEANED UP.

Karen says VERY CHALLENGING
FOR THE CAREGIVER TO KNOW
WHAT THOSE Triggers ARE.
BECAUSE SOME OF THEM SEEM TO
BE MORE, TO MAKE SENSE IN
TERMS OF THE SHOWER, SOMEONE
IN A WHITE COAT THAT
REPRESENTS A DOCTOR, BECAUSE
OF EXPERIMENTATION THAT WAS
DONE, BUT IF IT'S SO
INDIVIDUAL, WHAT'S A
CAREGIVER TO DO WHEN THEY'RE
TRYING THEIR BEST NOT TO HIT
THE TRIGGER?

Paula says YOU'RE RIGHT, IT'S VERY
CHALLENGING, AND I THINK THE
MAIN CHALLENGE IS THAT A
CAREGIVER IS TO KNOW THE
PERSON THEY'RE RESPONSIBLE
FOR, THEY'RE CARING FOR AS
WELL AS THEY CAN.
MOST IMPORTANT THING IS TO
KNOW WHO THIS PERSON IS AND
WHAT THEIR INDIVIDUAL STORY
IS, SO THAT IF THEY WERE IN
A CONCENTRATION CAMP THAT
WAS A DEATH CAMP, AND THE
GAS CHAMBERS WERE THERE, YOU
CAN ASSUME THAT PERHAPS
SHOWERS MAY TRIGGER A
DIFFICULT MEMORY.
IF THEY'RE COGNITIVELY
IMPAIRED AND CAN'T ANSWER
THE QUESTIONS THEN WE LOOK
TO FAMILY AND FRIENDS AND
RELATIVES TO FILL IN AS MANY
DETAILS AS WE POSSIBLY CAN.
AND IN TERMS OF TAKING CARE
OF ANYBODY, THE MORE YOU
KNOW ABOUT THAT INDIVIDUAL
PERSON AND THEIR LIFE
EXPERIENCES, THE BETTER IT
IS FOR EVERYBODY.

Karen says NOW IS THIS SPECIFICALLY
SOMEONE WHO IS SUFFERING
FROM DEMENTIA OR ALZHEIMER'S
OR JUST WITH A FAILING MIND?
AT WHAT POINT DOES IT GET
MORE SEVERE OR JUST THE
BEGINNINGS OF?

Paula says AGAIN, ACCORDING TO THE
INDIVIDUAL I THINK YOU CAN
ASSUME THAT IF YOUR MEMORY
IS FAILING YOU, AND YOU HAVE
YOUR PAST AND YOUR TIMELINES
CONFUSED, THEN IT CAN --
THESE VARIOUS TRIGGERS CAN
COMPLICATE AND EXACERBATE
THE PROBLEMS THAT YOU'LL BE
DEALING WITH.
FOR EXAMPLE, YOU MAY NOT
REMEMBER WHAT YOU HAD FOR
LUNCH, YOU MAY NOT REMEMBER
YOUR FAMILY'S NAMES BUT YOUR
LONG-TERM MEMORY MAY BE
CRYSTAL CLEAR AND THEREFORE
YOU REMEMBER 1945, 1935,
WHEN THE WAR WAS BEGINNING,
AND THE ACTIONS WERE
STARTING, THAT IS VERY TRUE.
THAT'S A VERY BAD TIME FOR
SOMEBODY TO GET STUCK AT.

Karen says AND IN TERMS OF
GETTING STUCK IN, I GUESS WE
ALL IDEALLY HOPE WHEN OUR
MEMORIES FAIL, AND I'M
TALKING ABOUT THOSE WHO
HAVEN'T GONE THROUGH A
CERTAIN TRAUMA, WE HOPE
WE'RE GOING TO REMEMBER OR
GO TO A GOOD PLACE, IS THE
WAY I'VE HEARD IT DESCRIBED,
GO TO A GOOD PLACE IN
CHILDHOOD, MEMORIES WHERE
YOU WANT TO SPEND SOMETIME,
WHEN THE MIND STARTS TO GO.
BUT IF SOMEONE GOES THROUGH
SEVERE TRAUMA LIKE THIS, IS
IT COMPLETELY UNLIKELY THAT
THEY'RE GOING TO GO TO A
HAPPY PLACE?

Paula says WE DON'T REALLY HAVE
CONTROL OVER WHERE THE MIND
TAKES YOU AND WHERE IT GOES
AND WHERE IT STAYS.
AND WE DON'T REALLY HAVE AN
UNDERSTANDING OF HOW LONG IT
WILL BE IN THAT PLACE.
BECAUSE WE DON'T HAVE THAT
UNDERSTANDING, THERE'S A LOT
OF CREATIVE INTERVENTIONS
THAT WE KEEP TRYING.
ALL OF THE SURVIVORS OF ANY
WAR HAD CHILDHOODS PRIOR TO
WAR, UNLESS THEY WERE
CHILDREN DURING THE WAR.
MOST PEOPLE HAVE A HISTORY
OF SOME GOOD MEM MEMORIES.
AGAIN IT'S THE CHALLENGE OF
THE CAREGIVER TO TRY AND FIND
A CONNECTION, TO TRY AND
FIND A TRIGGER THAT MAY
TRIGGER SOMETHING MORE
POSITIVE.
SO IT MAY BE MUSIC, IT MAY
BE A LULLABY THAT BRINGS
BACK A WARM, SOFT, NICE
FEELING AS OPPOSED TO THE
DIFFICULT, CHALLENGING
MEMORIES.
SO WE COLLECT, AS WE LEARN
ABOUT TRIGGERS THAT BRING
BACK DIFFICULT AND HORRID
MEMORIES, WE COLLECT THOSE,
WE LIST THEM, WE SHARE THEM
WITH OTHER ARE STAFF, WE
SHARE THEM WITH FAMILIES AS
PART OF THE LIST OF WHAT TO
TRY AND SAY VOID.

Karen says OKAY, WHAT WAS IF
THEY HIT THAT TRIGGER POINT?
WHAT WAS IF THE CAREGIVER
ACCIDENTALLY OR UNWITTINGLY
HAS TRIGGERED SOMETHING AND
ALL OF A SUDDEN THERE'S
HYSTERIA?

Paula says OKAY, THEN CAREGIVERS ARE
TRAINED IN HOW TO DEAL WITH
DIFFICULT REACTIONS.
AND IT'S NOT ALWAYS EASY,
AND IT'S DEFINITELY NOT EASY
FOR THE PERSON EXPERIENCING
IT.
SO THE FOCUS WOULD BE ON HOW
TO AVOID DIFFICULT
SITUATIONS.
FOR EXAMPLE, IF WE'RE
THINKING ABOUT A SHOWER
MAYBE A TRIGGER, AND GO BACK
TO THAT TIME OF MURDER AND A
TIME OF GREAT LOSS, WE WILL
JUST GO RIGHT BY THE SHOWER
AND SAY WOULD YOU LIKE A
BATH?
WOULD YOU LIKE A SPONGE
BATH?
OR HOW WOULD YOU LIKE TO GET
CLEANED?
THAT WOULD BE THE BEST WAY
TO GO.
AND TRY AND INVOLVE THE
INDIVIDUAL AS MUCH AS
THEY'RE ABLE.

Karen says SO THE CAREGIVER IS ALSO
TRAINED FOR THESE SCENES
THAT CAN HAPPEN.
I MENTIONED HYSTERIA, BUT
COULD IT ALSO MANIFEST
ITSELF INTO SOMEONE GOING
INSIDE AND NOT SAYING
ANYTHING?

Paula says IT COULD BE EXTREME
SILENCE IT COULD BE FEAR IT
COULD BE AGITATION.
SOMETIMES IT COMES OUT AS
VERY DISRUPTIVE BEHAVIOUR.
AND AGAIN, THE PERSON
THEMSELVES KNOWS WHAT
THEY'RE UPSET ABOUT AND WHAT
THEY'RE ANXIOUS ABOUT AND
WHAT THEY'RE REACTING TO BUT
CAN'T ALWAYS COMMUNICATE TO
THE CAREGIVER SO WHAT WE MAY
SEE IS SOMEBODY STARTING TO
THROW THINGS OR BE VERBALLY
ABUSIVE AND SHOUT AND YELL,
AND THAT PARTICULAR
BEHAVIOUR HAS NOTHING TO DO
WITH WHAT THE TRIGGER WAS
AND WHAT THEY'RE REMEMBERING,
BUT THAT IS HOW IT'S
EXPRESSING ITSELF.

Karen says AND WE'RE TALKING ABOUT
HOLOCAUST SURVIVORS HERE.
CAN IT APPLY, THIS GOID
YOU'VE PUT TOGETHER, WORKED
ON AND LECTURED ABOUT, APPLY
TO OTHER FORMS OF SEVERE
TRAUMA OTHER THAN SGHAR.

Paula says GENERALLY WE'RE WORKING
WITH SURVIVORS OF WAR,
TRAUMA AND EXTREME LOSS.
THE LOSS THAT MOST OF US
EXPERIENCE AS WE GO THROUGH
LIFE, WHICH WOULD BE THE
DEATH OF A GRANDPARENT, THE
DEATH OF A LOVED ONE, WHICH
IS DIFFICULT FOR EVERYBODY,
IS NOT QUITE THE KIND OF
EMOTIONAL IMPACT THE DEATH
OF YOUR ENTIRE FAMILY WOULD
HAVE.
SO GENERALLY SPEAKING, WE'RE
TALKING ABOUT EXTREME TRAUMA
AND EXTREME LOST.
THE HOLOCAUST SURVIVORS,
HAVING HAD THE MOST EXTREME
THAT WE KNOW OF IN MODERN
HISTORY, BUT WHAT WE'RE
LEARNING FROM THEM AND WHAT
WE'RE LEARNING IN CARING FOR
THEM IS HOW TO SUPPORT
CAMBODIAN SURVIVORS, HOW TO
SUPPORT RWANDAN SURVIVORS.
PEOPLE WHO ARE EMIGRATING
FROM OTHER COUNTRY, AS WELL
AS OUR OWN CANADIAN VETS WHO
WENT THROUGH TWO WORLD WARS
AT THIS AGE, AND PERHAPS
THEY WITNESSED TRAUMA AND
DIFFICULTIES.

Karen says THIS IS ANOTHER
CHAPTER.
IT'S 55 YEARS LATER WHEN
WE'RE TALKING ABOUT THE
HOLOCAUST, SPECIFICALLY AND
TO THINK THAT WE DO VERY
MUCH HAVE TO REALIZE THAT
THIS IS YET ANOTHER STAGE
FOR THOSE WHO WENT THROUGH
IT, AND THAT CAREGIVERS HAVE
TO BE AWARE OF IT.
DO YOU LECTURE JUST IN NORTH
AMERICA OR IS THIS A
WORLDWIDE PHENOMENA THAT
EVERYBODY IS ON THE SAME
PAGE ABOUT?
THAT THEY'RE TAPPED INTO IT?

Paula says IT'S VERY MUCH A WORLDWIDE PHENOMENA.
VERY SADLY SO.
SURVIVORS OF THE NAZI
HOLOCAUST SPREAD OUT ALL
OVER THE WORLD AT THE END OF
THE WAR.
THOSE WHO DID SURVIVE.
AND AS I SAID, THEY MADE,
THEY CARVED OUT VERY
SUCCESSFUL AND PROGRESSIVE
LIVES FOR THEMSELVES.
NOW, THOUGH, BECAUSE THEY
WERE MOSTLY ALL THE SAME AGE
AT THE END OF THE WAR, NOW
THEY ARE ALL FACING OLD AGE
AT THE SAME TIME.
AS WELL AS, SADLY THE WORLD
DIDN'T LEARN ABOUT ENDING
WAR AND ENDING STRIFE AND
GENOCIDE, SO THAT THERE ARE
YOUNGER GENERATIONS COMING
UP WHO HAVE HAD SIMILAR
EXPERIENCES AND SIMILAR
TRAUMA, AND WHAT WE ARE
LOOKING AT IS HOW TO MAKE
THE LAST CHAPTER, OLD AGE,
AS DIGNIFIED AND AS
UNOBTRUSIVE AS POSSIBLE.

Karen says AND THAT'S WHAT
WE'RE GOING TO BE TALKING
ABOUT THROUGHOUT THE REST OF
THE HOUR BUT THANKS SO MUCH
FOR HELPING US UNDERSTAND
THE WORK YOU'VE BEEN DOING.
THANKS FOR COMING IN.

Paula says MY PLEASURE.

Karen says PAULA DAVID, A SOCIAL
WORKER AT THE BAYCREST
GERIATRIC CENTRE AND FOR
MORE INFORMATION YOU CAN GO
TO THEIR WEBSITE IS
www.baycrest.org
NOW DAVID MacINNISTRY IS A
CAREGIVER AND KNOWS ALL
ABOUT WHAT'S LIKE TO GIVE
SCOMPOCH KNOW CAREGIVERS
NEED PAMPERING, TOO.
THAT'S WHY HE DOES SOMETHING
AMAZING AT HIS LINDSEY AREA
BED AND BREAKFAST.
HE OFFERS A STAY THERE FOR
FREE FOR CAREGIVERS AND HIS
GENEROSITY HAS BEEN RETURNED
IN WAYS HE NEVER EXPECTED.

Now a clip plays on screen.
Music plays as fast clips show a countryside cottage, and an elderly woman relaxing by a fireplace.

In daytime, David opens the door to the cottage and says
WELL HI, WELCOME TO
WOODHAVEN.
COME ON IN.

David is in his forties, clean-shaven, with short blond hair.

Clips show David kneading dough in the kitchen.

Karen narrates says DAVID UNDERSTANDS CAREGIVING.
HE DID IT FOR A LONG TIME.
HIS PARTNER, NICK, HAD AIDS.
THE COMMUNITY RALLIED AROUND
DAVID AND HELPED HIM KEEP
NICK AT HOME WHILE HE WAS
DYING.
DAVID REALIZED HOW IMPORTANT
THAT SUPPORT WAS, AND HE
DEVELOPED THE WOODHAVEN
PHILOSOPHY.
CAREGIVERS STAY FREE SUNDAY
THROUGH THURSDAY.

David sits on a couch and speaks.
A caption reads “David McKinstry. Owner, Woodhaven Lodge.”

David says THEY'VE ALWAYS BEEN A
HUSBAND, A WIFE, A CAREGIVER,
AND THAT'S THE ROLE THEY
ASSUME 24 HOURS A DAY, SEVEN
DAYS A WEEK, 52 WEEKS OF THE
YEAR.
AND THEY ARE EXHAUSTED
SPIRITUALLY AND EMOTIONALLY.
PHYSICALLY.
AND THEY COME HERE, NOT
KNOWING WHAT TO EXPECT.

A clip shows David welcoming a woman in her late forties. He shows her and her dog into a large and cozy room with a wooden wall and a bare brick wall.

He says AND THIS IS WHERE YOU'LL
BE STAYING.
AND YOU HAVE A FIREPLACE AND
A KING SIZED BED, AND YOU
HAVE A TWO PERSON SHOWER IN
THERE, AND YOU CAN SIT AND
RELAX, PUT ON A FIRE, PUT ON
A VIDEO OR JUST SIT AND READ
ALL NIGHT.

The woman says PERFECT.

Karen narrates
SUZIE WORKS AT THE YELLOW
BRICK HOUSE, A HOME FOR
BATTERED WOMEN.

A caption reads “Suzi McGee. Client.”

Suzi says I THINK THE ATTITUDE OF
DAVID AND HIS FAMILY IS JUST
REMARKABLE.
PEOPLE THAT JUST WANT TO
GIVE.
IT'S CERTAINLY JUST FROM
THEIR HEART.
AND TO BE ABLE TO JUST SIT
AND RELAX AND TO ENJOY THE
SURROUNDINGS, THE FRESH AIR
TODAY AND THE POND AND THE
DOGS AND THE GREAT FOOD, AND
JUST BEING ABLE TO TAKE TIME,
AND KNOW THAT THESE PEOPLE
ARE JUST 100 percent IN THEIR HEART
TO WANT HELP OTHER PEOPLE.

Karen narrates DAVID HAD SUCH
AN IMPACT ON ONE CLIENT WHO
WAS DYING OF AIDS HE
RECEIVED THE MOST PRECIOUS
GIFT ANYONE COULD GIVE.

A clip shows children leaving a school bus.

David says SHE SAID TO ME, “I NEED
TO FIND A FAMILY FOR MY SON.
I'M GOING TO BE DEAD IN A
FEW MONTHS, AND I WOULD LOVE
FOR HIM TO SPEND HIS LIFE
HERE WITH YOU.
WOULD YOU ADOPT HIM?”

A boy races up to David and gives him his knapsack.

David says ALL RIGHT, I'LL CARRY IT.

He narrates SHE DIDN'T HAVE TO ASK TWICE.

As he and the child walk, he says YES, THEY DO!

He narrates AND THAT'S HOW WE CAME TO HAVE COLLIN.
AND THEN EIGHT MONTHS LATER,
I LEFT FOR INDIA AND BROUGHT
NICHOLAS HOME.

David leaves the lodge and yells NICHOLAS!

Nicholas says I'M OUTSIDE, DAD!

Karen narrates DAVID AND HIS NEWLY
FORMED FAMILY JUST MOVED TO
THEIR NEW LOCATION NEAR
LINDSEY IN SEPTEMBER.
THEY'RE STILL WORKING ON THE
PLACE, GETTING IT THE WAY
THEY WANT.
BUT DAVID WANTS FULL
CAPACITY AND NOW!

David says I'M ONLY A QUARTER FULL,
AND I SHOULD BE 100 percent FULL.
AND THERE ISN'T A CHARITABLE
OFFICE IN ONTARIO THAT
HASN'T RECEIVED A FLYER FROM
US SAYING THAT WE PROVIDE
FREE RES PIT CARE HOLIDAYS
TO CAREGIVERS.
THERE'S NO GIMMICK.

At night, David shares dinner with the elderly woman, Suzi, and the children.

He says ALL RIGHT, WELL WE HAVE
CHICKEN AND WE HAVE FISH, SO...
HELP YOURSELVES.

He narrates
WITHOUT SOUNDING TOO
RELIGIOUS, THERE'S A REAL
BLESSING IN THE SMILE YOU
RECEIVE BACK FROM SOMEONE
WHEN YOU'VE GIVEN THEM A
HELPING HAND.
IT GOES A LOT FURTHER, IN
MANY CASES, THAN THE BUCK IN
THE HAND.
YOU KNOW, I DON'T WANT TO
SOUND ALTRUISTIC.
I NEED TO MAKE A BUCK.
I NEED TO HAVE MONEY COMING
IN TO PAY OUR TAXES, TO BUY
SHOES FOR MY BOYS.
BUT I DON'T NEED A MILLION
BUCKS.
I NEED THE PEACE AND THE
QUIET, AND THEY NEED TO
RE-GROUP EMOTIONALLY.
AND I THINK THAT'S PROBABLY
WHAT WE PROVIDE MORE THAN
ANYTHING.
IS THAT CHANCE TO RE-GROUP
EMOTIONALLY AND SPIRITUALLY.

David watches the sun set.

Then, the clip ends.

Back in the studio, Karen says IT'S A SCENARIO WE ALL DREAD.
THE DOCTOR AVOIDS OUR EYES
AND THEN HE LOOKS AND SAYS
“THERE'S NOTHING WE CAN DO.”
AND AT THAT POINT WE'RE
LOOKING AT DEATH IN THE FACE.
UNFORTUNATELY FOR BOTH THE
DYING AND THE CAREGIVERS
PEOPLE ARE OFTEN LEFT WITH
NOT SURE WHAT TO DO TO
TURN OR WHERE TO GO NEXT.
HEATHER ROBINSON KNOWS
EXACTLY WHERE THAT FEELS.
SHE'S THE AUTHOR OF THE BOOK
“MEETING DEATH IN HOSPITAL,
HOSPICE AND HOME”

Heather is in her late sixties, with curly gray hair. She’s wearing round glasses and a beige jacket over a black sweater.

Karen continues AND WE'RE
ALSO JOINED BY Dr. LARRY
LEBRACHT, DIRECTOR OF THE
PALLIATIVE CARE CENTRE AT
MT. SINAI HOSPITAL.

Larry is in his fifties, with short gray hair and a moustache. He’s wearing a pale blue shirt and a gray tie.

Karen continues IF YOU'RE AT HOME TAKING
CARE OF SOMEONE WHO'S
TERMINALLY ILL, AS A
CAREGIVER, YOUR QUESTIONS,
AND ALSO IF YOU'RE CONFUSED
ABOUT SOME OF THE
INFORMATION YOUR DOCTOR IS
GIVING YOU, THIS IS YOUR
CHANCE TO ASK HER ON “MORE
TO LIFE.”

A caption reads "416-484-2727. 1-888-411-1234."
Then, it changes to "moretolife@tvo.org"

Karen continues HEATHER AND LARRY, WELCOME.
THANKS SO MUCH FOR COMING.

The guests say THANK YOU.

Karen says TELL ME HOW YOU CAME TO
WRITE THIS BOOK “MEETING DEATH?”

A caption reads “Heather Robertson. ‘Meeting Death.’”

Heather says IT BEGAN IN 1995 WHEN MY
FATHER WAS DIAGNOSED WITH
TERMINAL CANCER AND HE WAS
GIVEN THREE MONTHS TO LIVE
AND BASICALLY SENT HOME.
HE WANTED TO DIE AT HOME.
I WAS THE SOUL CAREGIVER AND
I FLEW IN FROM TORONTO BUT
WE FOUND OURSELVES VEM
ESSENTIALLY ALONE AT HOME.
THERE WAS INSUFFICIENT
MEDICAL SUPPORT, NO HOME
NURSING, AND I REALIZED THAT
I KNEW NOTHING ABOUT DYING.
I DIDN'T KNOW WHAT TO EXPECT,
NOR DID HE.
I DIDN'T KNOW ANYTHING ABOUT
MEDICATION, WHETHER THE
MEDICATION HE WAS GETTING
WAS APPROPRIATE OR NOT.
IT DIDN'T SEEM TO BE VERY
EFFECTIVE.
I HAD NO NURSING SKILLS.
SO WE FELT VERY, VERY LOST,
REALLY, AT SEA.
FORTUNATELY HE WAS ADMITTED
TO A VETERAN'S LONG-TERM
CARE HOSPITAL WHERE HE DIED
IN TWO WEEKS.
HE DIDN'T HAVE THREE MONTHS,
HE HAD TWO WEEKS.
SO AFTER HIS DEATH I THOUGHT,
“YOU KNOW, IF I'M IN THIS
POSITION AND COMPLETELY AT A
LOSS, THOUSANDS OF CANADIANS
MUST BE IN THIS POSITION
ALSO.”
SO I DECIDED I WOULD LIKE TO
EDUCATE MYSELF, FIRST OF ALL.
FIND OUT ABOUT MORPHINE,
AMONG OTHER THINGS, AND THEN
COMMUNICATE WHAT I LERND,
YOU KNOW, TO OTHERS.

Karen says IN TERMS OF WHAT
YOU SAID, IT'S TRUE, THAT
YOU WERE UNPREPARED.
AND LARRY, YOU BEING IN
PALLIATIVE CARE, I'M SURE
THIS IS WHAT YOU DEAL WITH
ALL THE TIME.
RELATIVES AND FRIENDS WHO
ARE UNPREPARED.
IS IT BECAUSE WE JUST -- WE
DON'T WANT TO TALK ABOUT
DEATH.
WE DON'T WANT TO FACE IT FOR
OURSELVES UNTIL IT ENTERS
INTO OUR WORLD.
IT SHOCKS US AND THEN WE
HAVE TO DEAL WITH IT.
DO YOU SUGGEST THAT WE
PREPARE IN SOME WAY BY HOW?
JUST THINKING ABOUT DEATH?
TALKING ABOUT IT?

The caption changes to "Doctor Larry Librach. Palliative Care Specialist."

Larry says I THINK IT'S TALKING
ABOUT IT.
YOU KNOW, WHEN SOMEBODY GETS
A DIAGNOSIS OF CANCER THEY
DON'T THINK OF A LONG LIFE
AHEAD OF THEM.
THE FIRST THING THEY THINK
OF IS THEY'RE GOING TO DIE.
AND SO IT'S REALLY IMPORTANT
TO INITIATE A CONVERSATION
THERE.
BUT I THINK IT'S MORE THAN
JUST THE DENIAL OF DEATH,
YOU KNOW, BY A SOCIETY AND
THE VENEER OF TALKING ABOUT
IT.
IT'S JUST THAT PEOPLE
DON'T -- YOU KNOW, CARING
SEEMS TO STOP OR SEEMS TO
STOP AT A POINT OF SAYING
“WELL, THERE'S NOTHING MORE
I CAN DO FOR YOU.”
AND I THINK WE'RE MOVING
BEYOND THAT SLOWLY, BUT THIS
IS STILL A TYPICAL STORY.
THIS HAPPENS FAR TOO OFTEN.
PEOPLE AREN'T PREPARED OR
THEY GO THROUGH ALL THE
TREATMENTS, BUT NOBODY EVER
WANTS TO TALK ABOUT DYING.
IT'S SORT THIS THING, WELL
IF YOU TALK ABOUT DIE,
YOU'RE GOING TO HAVE A WORSE
PROGNOSIS OR SOMETHING LIKE
THAT AND THAT'S JUST -- IT
DOESN'T HAPPEN.

Karen says AND WE'VE HEARD
FROM HEATHER, HER
PERSPECTIVE AS A RELATIVE.
FROM THE DOCTOR'S
PERSPECTIVE, HOW DO YOU
DELIVER THE NEWS?
DO YOU SAY THERE'S NOTHING
MORE YOU CAN DO?
AND THEN NO RESPONSIBILITY
TO FOLLOW UP WITH SUGGESTION
FOR SUPPORT GROUPS?
THE DOCTOR'S JOB ENDS AT
SAYING I'M SORRY, THERE'S
NOTHING WE CAN DO?

Larry says IT OFTEN ENDS THERE.
IT ENDS WITH “THERE'S
NOTHING MORE WE CAN DO, GO
BACK TO YOUR FAMILY DOCTOR.”
“THERE'S NOTHING MORE WE CAN
DO, GET YOUR AFFAIRS IN
ORDER.”
THINGS LIKE THAT, BUT NOT --
THE MOTTO OF PALLIATIVE CARE
IS THERE'S ALWAYS SOMETHING
MORE THAT CAN BE DONE.
WE'RE NOT CONCENTRATING ON
LIFE SPAN, IT'S COMFORT AND
CARE AND DEALING WITH THE
SPIRITUAL IRV SHOES AND
THINGS LIKE THAT.
SO THERE'S ALWAYS SOMETHING
THAT CAN BE DONE, BUT PEOPLE
ARE OFTEN JUST CAST ADRIFT
AND TO BE HONEST WITH YOU,
THERE MAY NOT BE PALLIATIVE
CARE RESOURCES OUT THERE FOR
THEM EITHER SO THAT'S
ANOTHER ISSUE, EVEN IF THEY
WANTED IT, HOW DO THEY
ACCESS IT?
AND PALLIATIVE CARE SEEMS TO
BE A WELL-KEPT SECRET IN
MANY PLACES.

Karen says LET'S LOOK AT THAT
SPECIFIC DEFINITION OF
PALLIATIVE CARE.
YOU SAID IT'S ABOUT -- WELL
YOU ANSWER THAT.
GO AHEAD.

Larry says WELL IT'S REALLY CARING
FOR PEOPLE WITH AN ADVANCED
PROGRESSIVE ILLNESS, AND IT
SEEKS TO SORT OF ADDRESS THE
ISSUE OF QUALITY OF LIFE AND
QUALITY OF DYING, NOT JUST
THE -- WE'RE NOT FOCUSED ON
THE DURATION OF LIGHT.
IT'S IMPORTANT FOR US THAT
OUR PEOPLE, THAT WE SERVE,
LIVE AS LONG AS POSSIBLE, BE
AS COMFORTABLE AS POSSIBLE
AND LIVE UNTIL THEY DIE.
AND I THINK THAT THEY NEED
TO BE PREPARED FOR THIS.
THEY NEED HELP TO WORK THEIR
WAY THROUGH THIS THE FAMILY
NEEDS HELP.
SO ALL THOSE THINGS HAVE TO
COME INTO IT, SO IT'S VERY
MUCH -- VERY FOCUSED ON
PATIENT AND FAMILY NEEDS.

Karen says WHAT'S MISSING IN THAT, I
THINK, IS THE ELEMENT OF
WANTING TO FIGHT IT.
WE FIND OUT WHEN YOUR DAD
WAS DIAGNOSED THAT HE WAS
GOING TO DIE, WAS THERE
SOMETHING IN YOU THAT SAID
“IT'S WRONG, WE'RE GOING TO
FIGHT THIS, WE'RE GOING TO
BEAT IT AND WHAT THEY'RE
TELLING ME CAN'T BE TRUE?”

Heather says NO, I DIDN'T REACT THAT
WAY BECAUSE HE ACCEPTED HIS
DIAGNOSIS.
HE WAS 86 YEARS OLD.
AND NO, I DIDN'T GO THROUGH
THAT.
BUT I WAS ASTONISHED AT THE
EMOTIONS THAT I DID GO
THROUGH.
BECAUSE I WASN'T PREPARED
FOR THAT.
I'M PRETTY SORT OF RATIONAL,
CALM PERSON.
BUT I FOUND MYSELF
ABSOLUTELY POSSESSED BY
TEMPESTUOUS EMOTIONS.
A LOT OF ANGER.
LIKE WHY IS THIS HAPPENING
TO MY DAD?!
I'M LOSING MY DAD!
I NEED TO SORT OF TRY TO
SAVE HIS LIFE.
A LOT OF GUILT, YOU KNOW,
ABOUT THINGS THAT MAYBE I
COULD HAVE DONE IN THE PAST
I DIDN'T DO.
A LOT OF ANXIETY ABOUT THE
FACT THAT I WASN'T CARING
FOR HIM AS WELL AS I FELT HE
SHOULD BE CARED FOR.
A LOT OF SHOCK.
YOU KNOW, I COULDN'T HEAR
VERY WELL.
AND I KNEW -- I KEPT SAYING
TO MYSELF “LOOK, I'M IN
SHOCK.”
BUT I STILL COULDN'T HEAR
VERY WELL.
AND IT WAS VERY HARD TO
COMMUNICATE WITH PEOPLE WHEN
YOU'RE GOING THROUGH THAT
KIND OF EMOTIONAL TURMOIL.
AND I LEARNED SUBSEQUENTLY
THAT'S CALLED ANTICIPATE
TREE GRIEF.
WHEN SOMEONE VERY DEAR TO US
GETS THAT SORT OF DIAGNOSIS,
WE BEGIN TO GRIEVE EVEN
BEFORE THEY'VE DIED.
WHICH IS NORMAL.
ALL THESE EMOTION, I FELT
“GEE, I'M REALLY CRAZY” ARE
REALLY NORMAL EMOTIONS AND
IF WE UNDERSTOOD THAT, THEN
WHEN IT HAPPENS IT WOULDN'T
BE AS DISTRESSING.

Karen says AND YOU FOUND OUT
ALL OF THAT AFTER THE FACT,
WITH ALL OF YOUR RESEARCH SO
WHAT SHOULD HAVE BEEN IN
PLACE IDEALLY AT THE TIME
FOR YOU.

Heather says WELL, LOOKING BACK, WHAT
I WOULD HAVE APPRECIATED,
AND I THINK FAMILIES CAN
MANAGE VERY, VERY WELL.
AND AS A HOSPICE VOLUNTEER,
I KNOW THAT FAMILIES, GIVEN
SUPPORT, CAN FIND ENORMOUS
STRENGTH.
WHAT I WOULD HAVE
APPRECIATED WOULD BE A KIND
OF WHAT LARRY CALL, I THINK,
A CRADLE OR A PARACHUTE.
SO THAT I HAD A SUPPORT
NETWORK.
I CERTAINLY COULD HAVE USED
A GOOD NURSE TO GIVE ADVICE
ABOUT NURSING CARE.
I COULD HAVE USED A DOCTOR
WHO CAME TO THE HOUSE EVERY
SECOND DAY OR EVERYDAY AND
GOT MY DAD'S MEDICATION
FIXED.
I COULD HAVE USED SOMEBODY
TO TALK TO, WHO'S
KNOWLEDGEABLE, WHO COULD
HAVE SAT ME DOWN AND SAID
“OKAY, HEATHER, THE DISEASE
IS PROGRESSING AT THIS RATE
AND YOU CAN ANTICIPATE” AND
SAID TO MY DAD AS WELL -- MY
DAD WAS PERFECTLY COMPETENT.
MENTALLY COMPETENT --

Karen says THE DOCTOR DIDN'T DO THAT
FOR YOU?

Heather says THE DOCTOR WENT ON VACATION.

Karen says OH!
THERE WASN'T ANY TYPE OF
THIS IS WHAT'S GOING TO
HAPPEN NEXT, THIS IS WHAT
YOU CAN SNEKT.

Heather says NO.

Karen says IS THAT COMMON?

Larry says STILL FAIRLY COMMON.
PATIENTS AND FAMILIES OFTEN
WANT TO KNOW HOW MUCH TIME
IS LEFT, AND REALLY DOCTORS
ARE TERRIBLE AT
PROGNOSTICATING.
WE MIGHT AS WELL HAVE A
CRYSTAL BALL IN FRONT OF US
AND DO ALL SORTS OF THINGS.
BUT THE PROCESS IS REALLY
THAT YOU NEED TO HELP PEOPLE
BECAUSE THERE'S SO MANY
FEARS IN THIS IT'S REALLY
JUST EDUCATIONAL.
A LOT OF THE WORK I DO IN
PALLIATIVE CARE, BASIC
EDUCATING PATIENTS AND
FAMILIES ABOUT WHAT TO
EXPECT, WHAT TO DO,
LISTENING TO THEM, AND YOU
KNOW, IT'S IT'S THE
LISTENING PART THAT'S REALLY
IMPORTANT, TOO.
BECAUSE PEOPLE AT THE END OF
LIFE ARE LOOKING FOR ISSUES
AND MEANING AND PURPOSE IN
THEIR LIFE.
THEY WANT PHYSICAL DISTRESS
TO BE HANDLED, PAIN TO BE
HANDLED, THE ISSUES LIKE
THAT.
AND YOU KNOW IN HEATHER'S
CASE IT WAS JUST A TURNOVER,
SAYING “OKAY, WE'VE STOPPED,
THAT'S IT.
“ AND YOU MENTIONED
SOMETHING BEFORE ABOUT, YOU
KNOW, PEOPLE WANT THE BEST,
AND THAT'S WHAT WE WANT FOR
OUR PEOPLE AS WELL.
SO YOU CAN WORK WITH PEOPLE
GETTING CHEMOTHERAPY,
RADIATION, SURGERY, BUT I
GUESS ONE OF OUR MOTTOS IS,
YOU KNOW, HOPING FOR THE
BEST BUT PREPARING FOR THE
WORST.
SO WE'RE GOING TO DEAL WITH
THIS, BUT JUST IN CASE,
BECAUSE THERE'S A GOOD
CHANCE OF JUST IN CASES
GOING TO HAPPEN, THAT WE
NEED TO DEAL WITH THESE
ISSUES.
AND IF YOU TAKE A GENTLE
APPROACH WITH PEOPLE -- WE
DON'T TALK ABOUT DYING ALL
THE TIME BUT WE DO TALK
ABOUT LIVING UNTIL YOU DIE
AND ALL THESE ISSUES THAT
NEED TO BE ADDRESSED.

The caption changes to "Today’s topic, dealing with death."

The phone numbers and email reappear briefly.

Karen says WHAT ABOUT
DOCTORS' FEARS IN ALL OF THIS?
ARE THERE THE TABOOS ABOUT
SAYING THIS IS HOW LONG YOU
HAVE?
HEATHER YOU WERE TOLD YOUR
DAD HAD THREE MONTHS AND IT
WAS TWO WEEKS.
IS THAT PART OF IT?
NOT WANTING TO HAVE, TO GET
THEM HOPING IT'S GOING TO BE
LONGER?
YOU PERSONALLY HAVE SOME
FEARS AND ISSUES THAT YOU
HAVE TO DEAL WITH.

Larry says WELL I THINK FOR MANY
PHYSICIANS -- MOST
PHYSICIANS OVERESTIMATE HOW
LONG THE PATIENT WILL
SURVIVE.
AND WHEN WE GIVE DATA LIKE
THREE TO SIX MONTHS, IT'S
REALLY AROUND WHAT THE
AVERAGE LIFESPAN BUT WHEN
WE'RE LOOKING AT MEDIAN, 50 percent
OF PEOPLE CAN FALL ON EITHER
SIDE OF THAT.
SO IT'S NOT THE TIME THAT'S
IMPORTANT, IT'S WHAT YOU DO
WITH THE TIME.
AND WITH A GOOD SORT OF
SENSE OF PALLIATIVE CARE
BEING IN THERE, WE CAN HELP
THE FAMILIES MOVE THINGS
ALONG A LITTLE BIT FASTER,
OR SLOW THINGS DOWN OR BE
WITH PEOPLE.
YOU KNOW, WE HAVE PATIENTS
THAT WE'D LOOK AFTER FOR
THREE YEARS.
THE TIME ISN'T AS PORN AS
WHAT YOU CAN DO DURING THAT
TIME.

Karen says BUT YOU'RE NOT
TALKING TO ME ABOUT THE
DOCTOR, THOUGH.
AND WHY I'M HAMMERING THIS,
IS BECAUSE YOU ARE OUR FIRST
CONTACT AND EXPERIENCE WITH
THIS EARTH-MOVING EXPERIENCE
IN OUR LIFE.
AND I THINK WHAT I'VE HEARD
A LOT IS THAT THE DOCTORS
JUST DON'T DO IT VERY WELL.
AND THEY DON'T HANDLE IT
VERY WELL, AND I'M WONDERING
IF IT'S FEAR OR JUST NOT
APPROPRIATE TRAINING OR JUST
THAT DOCTORS WANT TO TURN
AWAY FROM DEATH.

Larry says IT'S A COMBINATION OF BOTH.
I MEAN, THERE'S A DEATH
ANXIETY SCALE, BELIEVE IT OR
NOT, AND PHYSICIANS RANK
RIGHT AT THE TOP OF THAT
DEATH ANXIETY SKATE.
WHEN THEY START OFF AS
STUDENTS, THEY'RE DOWN, SORT
OF FAIRLY AVERAGE.
BUT AS WE TRAIN THEM --
BECAUSE WE'RE TAUGHT THAT
DEATH IS THE ENEMY.
BUT WE DON'T TEACH DOCTORS
ABOUT DYING.
I MEAN, MOST PHYSICIANS CAN
GO THROUGH MEDICAL COOL AND
NEVER HAVE ANY EXPERIENCE IN
PALLIATIVE CARE, NEVER KNOW
HOW TO SIT DOWN AND DELIVER
BAD NEWS EFFECTIVELY, AND
THE ROLE MODELS THEY SEE ARE,
YOU KNOW, VERY BUSY
PHYSICIANS WHO DON'T KNOW
HOW TO DO IT EITHER.
SO YOU CAN'T PRACTICE WHAT
YOU DON'T KNOW.
SO WE NEED TO TEACH PEOPLE
TO DO THAT.
AND SOMETIMES IT'S VERY
DIFFICULT.
YOU KNOW, WHEN I WAS A
FAMILY PHYSICIAN AND LOOKED
AFTER SOMEBODY FOR A LONG
TIME, TO HAVE TO SIT DOWN
WITH THEM AND TELL THEM THAT
THEY WERE GOING TO DIE WAS A
VERY DIFFICULT -- IT'S NOT
AN EASY THING FOR A
PHYSICIAN TO HAVE THAT
CONVERSATION.
SO WE THINK IT SHOULD BE
EASY, BUT THERE IS A WAY OF
DOING IT BUT IT'S STILL A
DIFFICULT PROCESS,
ESPECIALLY IF YOU'RE CLOSE
TO PEOPLE.

Karen says BUT LISTENING TO
HEATHER, YOU TALKED ABOUT
QUITE A FEW PEOPLE BEING
INVOLVED IN THIS PROCESS.
IT STARTS WITH THE DOCTOR,
BUT YOU MENTIONED A NURSE,
SOMEONE TO TALK TO AT THE
HOSPITAL.
INFORMATION THAT PERHAPS
YOUR DAD, THE DISEASE HE WAS
SUFFERING FROM.
IT SHOULD BE A MULTI-PRONGED
APPROACH.

Heather says RIGHT, A TEACH APPROACH.
AND DIFFERENT PEOPLE NEED
DIFFERENT THINGS.
I THINK ONE THING IS VERY
COMMON, IS THAT IT'S VERY
HARD FOR A CAREGIVER TO
WITNESS SUFFERING.
I THINK IT'S INCREDIBLY
IMPORTANT THAT -- AND IT'S
THE PHYSICIAN'S
RESPONSIBILITY, BECAUSE THE
PHYSICIAN WRITES THOSE PRE
SIPGS, THAT MAGIC PIECE OF
PAPER THAT OPENS THE
DRUGSTORE DOOR.
AND THAT'S REALLY IMPORTANT,
BECAUSE TO BE WITH SOMEONE
WHO IS SUFFERING FROM
EXTREME PAIN, FROM NAUSEA,
FROM VOMITING, FROM
INCONTINENCE, I MEAN, FROM
HALLUCINATIONS, FROM
DEMENTIA, IT GOES ON AND ON.
AND WE'RE NOT EDUCATED OR
PREPARED AS FAMILY
CAREGIVERS TO COPE WITH
THAT.
AND IT'S VERY, VERY, VERY
HARD FOR PEOPLE TO WITNESS.
IT'S HARD FOR NURSES TO
WITNESS, DISPOORX TO TRY AND
CARE FOR.
AND THAT GETS THE FAMILY
UPSET AND DISTRESSED.
SO IT BEGINS THERE, BUT I
THINK, YOU KNOW, REALLY I
THINK IF WE HAVE THE TIME --
I MEAN, THE OTHER THING THAT
HAS TO HAPPEN IS THAT FAMILY
CAREGIVERS HAVE TO BE GIVEN
TIME OFF WORK.
I MEAN, IF YOU'RE GOING TO
BE EXPECTED TO BE NUMBER ONE,
NUMBER TWO CAREGIVER FOR
YOUR PARENT OR YOUR SPOUSE
OR YOUR CHILD, YOU CAN'T BE
GOING INTO THE OFFICE EIGHT
HOURS A DAY.

Karen says RIGHT.
JUST LIKE WE SAW WITH
WOODHAVEN, WITH THE BED AND
BREAKFAST, HERE WE HAVE AN
INCREDIBLE MAN, DAVID
McKINSRY OFFERING AN AMAZING
BREAK FOR CAREGIVERS AND HE
says HE'S ONLY A QUARTER FULL.
PEOPLE HAVEN'T EVEN
RESPONDED TO THIS GENEROUS
OFFER, BECAUSE I THINK WHAT
YOU'RE SAYING IS AS A
SOCIETY WE DON'T EITHER
REALIZE THE HELP IS THERE OR
WE MIGHT NOT WANT TO TAKE IT.

Heather says PEOPLE LOSE THEIR JOBS.
I MEAN, PEOPLE WHO SAY “LOOK,
MY MOM'S DYING, GUY GOT TO
HAVE SOMETIME OFF WORK GET
FIRED.”
OR OFTEN THEY QUIT BECAUSE
THEY PUT CARING AHEAD OF
THEIR JOB.
AND THEN THEY SUFFER
FINANCIALLY.

Karen says OR THEY WORRY ABOUT WHAT
THAT BUSINESS OR SOCIETY IS
GOING TO -- HOW THEY'RE
GOING TO JUDGE THEM.
WE'LL TAKE A LITTLE BIT OF
TIME, BUT NOT TOO MUCH TIME,
BECAUSE YOU HAVE
RESPONSIBILITY TO THIS
COMPANY.”

Heather says EXACTLY, EXACTLY.
AND HOW TO FIND A GOOD
COMMUNITY NURSE.
I MEAN, YOU COULD MAYBE FIND
A NURSE, BUT IS THIS NURSE
QUALIFIED AND TRAINED TO
CARE FOR A DYING PERSON?
WE DON'T KNOW, MAYBE SO,
MAYBE NOT.

Karen says WE'RE TALKING
ABOUT MEETING DEATH AND
CAREGIVERS AND WHAT YOU CAN
DO TO HELP YOU COPE.
AND WE'RE TAKING YOUR
QUESTIONS WITH OUR EXPERTS
HERE.
Dr. LARRY LIBRACHT.
HE WORKS WITH PEOPLE WHO ARE
IN PALLIATIVE CARE, AND ALSO
CAREGIVERS, AND HEATHER
ROBERTSON, THE AUTHOR OF
“MEETING DEATH” WHO HAS GONE
THROUGH THIS PERSONALLY.
SO TAKING YOUR QUESTIONS.

The phone numbers and email reappear briefly.

Karen says JANE IS FIRST CALLING IN
FROM LONDON WITH HER
QUESTION.
HI JANE.

The Caller says YEAH, HI.
ACTUALLY I DON'T EVEN HAVE
SO MUCH OF A QUESTION, I
JUST REALLY HAVE A REALLY
WONDERFUL COMMENDATION TO
MAKE TO YOUR GUESTS HERE,
AND FOR YOURSELF FOR HAVING
THE COURAGE TO SPEAK ON
THIS.
BECAUSE I MYSELF EIGHT YEARS
AGO TOOK CARE OF A SENIOR,
AND THEN UPON HIS DIAGNOSIS
WITH HIS NEUROPATHY, AS --
OH I CAN'T REMEMBER HER NAME,
BUT SHE WAS MENTIONING THE
AUTHOR THERE, I COULD NOT
WATCH THE SUFFERING.
TO THE POINT WHERE I HAD TO
DECLINE MY VOLUNTEER
SERVICES.
I DID SPEAK WITH THE
COORDINATOR OF THE VOLUNTEER
PROGRAMME, BUT UNFORTUNATELY,
SEVEN, EIGHT YEARS AGO, THEY
HAVE NOT BEEN ABLE TO MEET,
YOU KNOW, THOSE EMERGING
NEEDS AS THEY SEE VOLUNTEERS,
YOU KNOW, DEALING WITH
SENIOR AT DIFFERENT POINTS.
AND I HAVE SINCE MADE
CONTACT WITH OUR OWN HOSPICE
HERE IN THE CITY, BUT
THAT -- IT WAS INTERESTING,
AS YOU SAY.
IT'S A SHOCK.
AND IT TRIGGERED MY OWN,
“WELL WHAT AM I GOING TO DO
WITH MY OWN PARENTS?”
AND THERE WERE SO MANY
THINGS FOR ME TO SORT
THROUGH AS I WENT THROUGH
THAT, AND I'M ONLY BEGINNING
NOW, AFTER SEVEN OR EIGHT
YEARS, I HAVE ESTABLISHED MY
OWN HEALTH NETWORK TO BE
ABLE TO DO THIS, BUT IT'S
INCREDIBLE, THE AMOUNT OF
TIME THAT I TAKE TO DO THIS.
AND SO I'VE REALLY, I REALLY
AM GLAD TO SEE THAT THIS IS
BEING HIGHLIGHTED.

Karen says JULIE, THANKS SO
MUCH FOR YOUR CALL AND
SHARING THAT WITH US.
JULIE'S ANOTHER EXAMPLE OF
PEOPLE BEING PROACTIVE,
HAVING AN EXPERIENCE WITH
THE SYSTEM AND THEN THINKING
THAT -- AND DECIDING THEY'RE
GOING TO DO SOMETHING TO
HELP OTHERS.
NOT EVERYONE'S CAPABLE OF
THAT.
WHERE DID YOU GET THAT TYPE
OF COMMITMENT TO DIG DEEP
AND THEN GO OUT AND EXPLORE
DEATH?

Heather says WELL I OWE A GREAT DEAL
TO HOSPICE CARE, WHICH IS IN
KING CITY WHERE I MOVED IN
1996, AND AT THAT POINT I
KNEW ABSOLUTELY NOTHING
ABOUT HOSPICE, NOTHING AT
ALL.
SO I WENT AND BANGED ON THE
DOOR AND THEY WELCOMED ME IN,
AND TAUGHT ME HOW A
COMMUNITY -- AND KING
TOWNSHIP IS SMALL, IT'S ONLY
20,000 PEOPLE, AND WE SERVE
SOUTH AURORA, A SMALL
COMMUNITY OF NEIGHBOURS AND
FRIENDS CAN GET TOGETHER AND
CREATE A VOLUNTEER
ORGANIZATION.
AND IT WAS DONE IN 1983, WHO
WILL ASSIST THE DYING IN THE
COMMUNITY AND THEIR FAMILIES.
IT'S REALLY JUST NEIGHBOURS
HELPING OTHER NEIGHBOURS.
AND IT CAN BE VERY, VERY
SIMPLE.
I MEAN, OFTEN, SIMPLY COMING
INTO THE HOME FOR AN HOUR OR
TWO TO BE WITH THE PATIENT,
WELL SAY THE WIFE GOES OUTS
AND SHOPS OR GOES UPSTAIRS
AND HAS A REST.
PEOPLE GET EXHAUSTED.
MINE, THEY'RE COMPLETELY
EXHAUSTED.
AND THE MORE TIRED YOU GET,
THE LESS YOU CAN SLEEP AND
THE MORE PANICKY YOU GET AND
OFTEN JUST HAVING A FRIENDLY
PERSON COMING IN AND
TRAINED -- WE'RE WELL
TRAINED, GIVES YOU THAT KIND
OF BOOST OF CONFIDENCE THAT
YOU CAN'T RELAX AND LET DOWN
FOR A WHILE.
AND WE HELP OUT WITH ALL
KINDS OF -- WITH WHATEVER
THE PATIENT OR THE FAMILY
FEELS THAT THEY NEED HELP
WITH.
SOMETIMES YOU CAN PLAY CARDS
WITH A PATIENT OR READ TO
THEM OR GET BOOKS FROM THE
LIBRARY, WHICH I DO.
AND THIS KIND OF -- HAVING
SOMEONE HELP LIKE THAT WHEN
YOU'RE DYING OR ARE VERY,
VERY SICK, YOU END UP AT
HOME.
UNABLE TO GET OUT OF BED.
UNABLE TO GET OUT OF THE
HOUSE.
AND THAT CAN BE, IF YOU CAN
IMAGINE YOURSELF IN THAT
SITUATION, TERRIBLY
CONSTRAINING AND CONFINING
AND FRUSTRATING.
AND BORING.
AND HAVING JUST SOMEBODY
COME IN FROM THE OUTSIDE
WORLD WITH NEWS AND GOSSIP
AND, YOU KNOW, ALL OF THAT
SORT OF STUFF.
AND SOMEBODY WHO WILL SIT
THERE -- SOMEBODY WHO'S NOT
BEING PAID, TOO.
I THINK TO HAVE SOMEONE COME
OF THEIR OWN VOLITION AND
SPEND TIME, AND YOU DON'T
HAVE TO PAY FOR THERE, IT'S
VERY REWARDING AND
ENCOURAGING TO PEOPLE.

Karen says AND THIS IS A VOLUNTEER
ARRANGEMENT BUT LARRY, IN
TERMS OF A SPECIALIST IN
PALLIATIVE CARE, WE'VE
TALKED ABOUT THE HOLES THAT
ARE THERE.
IS IT THAT THERE ISN'T THE
MONEY FOR THE INFRASTRUCTURE
OR THE WILL FOR THE
INFRASTRUCTURE?

Larry says WELL, I THINK IT'S A
COMBINATION OF BOTH.
WE HAVEN'T SET IT UP.
NOW WITH CANCER CARE ONTARIO
MOVING INTO LOOKING AT
PALLIATIVE CARE BEING A PART
OF CANCER CARE, BEFORE IT
WASN'T.
ALL WE WERE INTERESTED IN --
STILL TO THIS DAY, WE PREFER
TO SPEND MONEY ON CANCER
TREATMENT AND M.R.I.
MACHINES, AND I DON'T SEE
THERE'S ANYTHING WRONG WITH
THAT, BUT WE FORGET THAT WE
ALSO HAVE TO CARE FOR PEOPLE
WHO ARE GOING TO GO ON TO
DIE OF THEIR DISEASE, AND SO
WE NEED BOTH.
THE INFRASTRUCTURE ISN'T
THERE YET.
WE DON'T HAVE A GOOD PAYMENT
SCHEME FOR THIS.
WE DON'T HAVE THE BUDGETARY
SUPPORT, AND PARTLY, YOU
KNOW, WE'RE JUST STARTING TO
TURN OUR ATTENTION TO THAT
BUT YOU NEED THE
PROFESSIONAL CAREGIVERS AS
WELL.
AND WE'RE TALKING ABOUT
SUFFERING.
THE CONCEPT OF UNNECESSARY
SUFFERING AND NECESSARY
SUFFER, THERE'S A CERTAIN.
A SUFFERING THAT ALWAYS
ACCOMPANIES DEATH.
BUT PEOPLE SHOULDN'T DIE IN
PAIN.
I MEAN, IT'S THE ONE THING
WE CAN REALLY DO SOMETHING
ABOUT.
AND YET PEOPLE DIE ALL THE
TIME IN AGONY, AND NOBODY
SEEMS TO CARE.

Karen says HOW COULD A PHYSICIAN
ALLOW THAT?
HOW COULD THERE BE ANYBODY
WHO'S CLOSE TO MONITORING
SOMEONE'S SITUATION AS
THEY'RE DHIG THEY WOULD DIE
IN PAIN?

Larry says WELL BECAUSE -- YOU KNOW,
PHYSICIANS GET WRAPPED UP IN,
YOU KNOW, THE DISEASE.
THEY GET WRAPPED UP IN DOING
THESE THINGS.
THEY'RE AFRAID TO USE THE
DRUGS LIKE MORPHINE.
THEY DON'T KNOW HOW TO USE
THEM.
YOU KNOW, THEY RUN INTO SIDE
EFFECTS SO THEY QUIT USING
THE DRUGS AND THINGS LIKE
THAT.
AND THEY'RE JUST -- YOU KNOW,
IT'S FAIRLY SIMPLE AND YET
WE SEE PEOPLE EVERY WEEK WHO
ARE DYING IN PAIN BECAUSE
PHYSICIANS, NURSES, AND
FAMILY MEMBERS EXPECT THAT.
YOU KNOW, AND THAT'S ALSO --

Karen says THEY EXPECT TO HAVE THEIR
RELATIVES DIE IN PAIN?

Larry says ONE OF THE BIG FEARS THAT
PEOPLE HAVE DYING IS THAT
THEY'RE GOING TO DIE IN
AGONY AND SO WHEN THEY SEE
PEOPLE DYING IN PAIN THEY
SAY “WELL, THIS IS JUST
NATURE.
THIS IS THE WAY CANCER IS,
OR WHATEVER” AND IT JUST
HAPPENS THAT WAY.
SO IT'S A COMMUNITY
RESPONSIBILITY.
IT'S NOT JUST THE PHYSICIANS
ALONE, BUT THE PHYSICIANS
HAVE THE PRESCRIBING
WRITING.
A NURSE CAN'T DO THAT AND
AGAIN, YOU CAN'T PRACTICE
WHAT YOU DON'T KNOW.
SO IT'S THAT ISSUE OF
KNOWING.
SO YOU CAN GET RID OF MANY
OF THE PHYSICAL SYMPTOMS,
BUT THERE'S STILL THE
WEAKNESS THAT HAS TO BE
DEALT WITH AND THAT
SUFFERING CAN BE RELIEVED
JUST BY SITTING DOWN AND
TALKING TO PEOPLE.
AS I SAID BEFORE.
YOU KNOW, JUST LETTING
PEOPLE KNOW SO YOU REDUCE
THE FEARS.

Karen says LET'S BRING JULIE IN ON
THE DISCUSSION.
SHE'S CALLING IN FROM
TORONTO.
HI JULIE.

The Caller says HELLO.
YES, I'M CALLING BECAUSE
I'VE JUST GONE THROUGH A
VERY TRAUMATIC SITUATION IN
THE PAST WEEK.
MY HUSBAND, HE WAS IN AN
ANOCHONIC WARD FOR THE LAST
12 YEARS AND WE KNEW HE
WOULD NOT COME BACK TO US
AND HE WOULD EVENTUALLY DIE
THERE.
NOW I HAVE A LOT OF ANXIETY
AND A LOT OF QUESTIONS
REGARDING ISSUES ON HOW
THINGS WERE DEALT WITH AND
HOW HE ENDED UP DYING IN THE
WAY THAT HE DID, BECAUSE HE
JUST PASSED LAST MONDAY.
AND HIS FUNERAL WAS ON THIS
PAST MONDAY.
SO IT'S BEEN A WEEK.
AND I'M STILL HAVING TROUBLE
UNDERSTANDING THE CAUSE OF
DEATH, UNDERSTANDING HOW --
WHY I WASN'T NOTIFIED OF ANY
KIND OF SIGNS.
WHY THAT WOULD LEAD TO A
DEATH.
WHY -- YOU KNOW, WHY OTHER
PEOPLE SEEM TO HAVE MORE
INFORMATION THAN I DID IN
THE FAMILY.
I FELT LIKE -- I FEEL LIKE
I'M JUST SORT OF NOT GIVING
ALL OF THIS STORY, SO TO
SPEAK, AND I JUST, I NEED
SOME QUESTIONS ANSWERED, AND
I DON'T KNOW, BASICALLY, WHO
TO TURN TO AND WHAT, WHAT MY
RIGHTS ARE AS FAR AS
INVESTIGATING THINGS OR
LOOKING INTO IT TO GET MORE
ANSWERS.
I JUST DON'T KNOW.

Karen says JULY, I'D LIKE
TO -- I'M SORRY FOR YOUR
LOSS, I'D LIKE Dr. LARRY
LIBRACHT TO ANSWER SOME OF
YOUR CONCERNS BECAUSE THIS
IS WHAT YOU DEAL WITH
REGULARLY.

Larry says WELL I THINK IN YOUR
GRIEF NOW IT'S GOING TO BE
HARD TO SORT THROUGH THE
INFORMATION, BUT AT SOME
POINT YOU REALLY NEED TO GET
TO THE INSTITUTION.
MOST INSTITUTIONS HAVE
SOMEBODY WHO CAN HEAVEN YOU
WITH THESE ISSUES AND
EXPLAIN THESE THINGS TO YOU.
YOU WOULD ABSOLUTELY HAVE A
RIGHT TO UNDERSTAND WHAT
GOES ON AND TO HAVE AN IDEA
OF WHAT WENT ON THAT LED --
YOU KNOW WHAT ARE THE
CIRCUMSTANCES THAT LED TO
YOUR HUSBAND'S DEATH.
AS YOU SAID, YOU'VE BEEN
PREPARING YOURSELF FOR SOME
TIME, BUT WHEN IT COMES
AGAIN, IT JUST PORTRAYS A
LACK OF INFORMATION.
IF YOU'D BEEN GIVEN THE
INFORMATION, BEEN ABLE TO
SIT THERE WITH YOUR HUSBAND
AND UNDERSTAND WHAT WAS
GOING ON, YOUR GRIEF,
PROBABLY, WOULD STILL BE
THERE, BUT YOU WOULD BE,
OVERTIME, A LITTLE MORE
SATISFIED AND IT REALLY IS
IMPORTANT FOR YOUR GRIEF
THAT YOU, YOU GET SOME OF
THOSE EANGS BECAUSE
OTHERWISE IT'S GOING TO BE
ALWAYS IN THE BACK OF YOUR
MINE.
AND YOU'RE NOT GOING TO
RECEIVE ABSOLUTES BUT YOU
SHOULD BE ABLE TO GET ENOUGH
INFORMATION.
YOU SHOULD BE ABLE TO ASK
THE PHYSICIAN WHO LOOKED
AFTER YOUR HUSBAND, THE
NURSING TEAM AND THE
INSTITUTION TO BE ABLE TO
ANSWER SOME YOUR NEEDS.
AND THERE SHOULDN'T BE ANY
PROBLEMS WITH THEM ANSWERING
THOSE KWIS.
I MEAN, IT'S -- YOU HAVE
EVERY RIGHT, AND THEY HAVE
EVERY RIGHT TO BE COMMITTED
TO HELPING YOU DURING THIS
PERIOD.

Karen says HEATHER, WOULD YOU
LIKE TO ADD SOMETHING TO THAT?

Heather says YES, I'D LIKE TO SUGGEST,
TOO, THAT IF YOU'RE FEELING
VERY ALONE AND ISOLATED, AND
I THINK WE ALL DO, OFTEN, AT
THESE TIMES, THAT CONTACT
YOUR LOCAL HOSPICE, BECAUSE
MOST HOSPICES HAVE GRIEF AND
BEREAVEMENT COUNSELLING,
SUPPORT GROUPS THAT PEOPLE
FIND VERY, VERY HELPFUL.
CERTAINLY IT'S SOMEBODY TO
TALK TO WHO IS JUST A
CITIZEN, LIKE YOURSELF, AND
IT CAN BE VERY, VERY
HELPFUL.

Karen says HOW WOULD WE FIND
HOSPICES?
GO TO YOUR PHONE BOOK?
IS THAT THE EASIEST WAY TO
DO IT?

Heather says WELL I THINK THERE IS A
PALLIATIVE CARE INFORMATION
OFFICE, CENTRE, PALLIATIVE
INFORMATION CARE CENTRE
BASED IN TORONTO.

Karen says WE'LL HAVE
WEBSITES AND THE NUMBERS --

Heather says YES, AND TORONTO HAS
SEVERAL HOSPICES.
IT DEPENDS WELL WHAT --
REALLY WHAT AREA OF THE CITY
YOU LIVE IN.

Karen says IN TERMS OF PROVINCIALLY
IF SOMEONE'S IN A SMALLER
COMMUNITY, THEY JUST CONTACT
THEIR LOCAL HOSPITAL MIGHT
BEED START?

Heather says WELL, IF YOU CAN FIND A
HOSPICE, TRY TO FIND A
HOSPICE.
BECAUSE HOSPICE KING AURORA
HAS AN ACTIVE BEREAVEMENT
AND GRIEF PROGRAMME, AND
WE'RE A VERY SMALL HOSPICE.

Karen says OKAY, WE'LL HAVE
NUMBER AND WEBSITES AT THE
END OF THE SHOW.

Larry says EVERY AREA HAS A PAIN AND
SYMPTOM MANAGEMENT TEAM
THAT'S INVOLVED IN
PALLIATIVE CARE.
AND ALSO SPEAK TO THE
COMMUNITY CARE ACCESS CENTRE
BECAUSE THEY OFTEN HAVE
INFORMATION ABOUT THOSE
RESOURCES.

Karen says GOOD, ROBERT'S ON NEXT
CALLING FROM SCARBOROUGH FOR
OUR DISCUSSION.
HELLO, SFLONT.

The Caller says HI THERE.

Karen says HI.

The Caller says MY THOUGHTS ARE
CHANGING AS I LISTENED TO A
PREVIOUS PERSON.
MY CONCERN GOES BACK MANY
YEARS.
25 YEARS AGO I LOST A WIFE
TO CANCER, AND I NEVER DID
TELL HER SHE WAS DYING.
SHE KEPT TALKING ABOUT
GETTING BETTER.
EVEN VERY NEAR THE END.
AND MY MINISTER KEPT SAYING,
“NOW YOU SHOULD TALK TO HER
ABOUT DEATH.”
I DIDN'T SEE HOW I COULD
WHILE SHE WAS STILL THINKING,
“NOW WHEN I GET BETTER WE'RE
GOING TO DO THIS,” AND IT
WAS VERY NEAR THE END
BEFORE -- ACTUALLY IT WAS
ABOUT TWO WEEKS BEFORE SHE
DIED, SHE WENT INTO A COMA,
SO I REALLY NEVER DID TALK
TO HER ABOUT THAT AND I'VE
ALWAYS FELT A BIT GUILTY
ABOUT IT.
I THINK I DID THE RIGHT
THING UNDER THE
CIRCUMSTANCES BUT IT WAS
VERY DIFFICULT.
I HAD VERY LITTLE SUPPORT,
THERE WAS NO ONE ELSE AROUND
OTHER THAN MY MINISTER AND A
FRIEND OR TWO THAT VISITED
BUT I WAS THE MAIN CONTACT
WITH MY WIFE AT THAT TIME.
AND THE NIGHT SHE DIED I
WASN'T THERE.
I HAD NO IDEA SHE WAS GOING
TO PASS AWAY THAT NIGHT.
SHE HAD CANCER OVER A PERIOD
OF TWO YEARS, AND ONLY IN
THE LAST FEW WEEKS THAT I
WAS TOLD THAT YOU KNOW, SHE
DIDN'T HAVE MUCH LONGER,
WHICH I EXPECTED ANYWAY.
BUT I STILL, I'M STILL
CONCERNED ABOUT, IF IT'S
ALWAYS TELLING PEOPLE SIMPLY
THEY'RE GOING TO DIE, WHEN
THEY'RE STILL CLINGING TO
HOPE EVEN THOUGH YOU THINK
IT'S FOR LORNE.

Karen says I THINK ROBERT
BRINGS UP AN EXCELLENT POINT
ABOUT THOSE WHO NEED THE
POSITIVE FRAME OF MIND TO
FIGHT, AND THAT THE WORD
DEATH WOULD BRING THEM
CRASHING DOWN AND PERHAPS
SHORTEN THEIR LIFE.

Larry says WELL, I THINK THAT'S A
MYTH, THOUGH.
I THINK PEOPLE HAVE THIS
SORT OF SUSPICION IF YOU
TALK ABOUT DYING YOU'RE
GOING TO DIE QUICKER.
I SUSPECT ROBERT'S WIFE KNEW
THAT SHE WAS DYING.
PEOPLE GO THROUGH THIS AND
THEY SEE THE CANCER AND THE
CHANGES -- EVERYBODY HAS
SOME DENIAL.
AND TO BE HONEST WITH YOU,
IF I WAS DYING OF CANCER, I
WOULDN'T WANT TO THINK OF
DEATH ALL THE TIME, I'D WANT
TO THINK, “IS THERE A CHANCE
FOR ME?
I'VE GOT TO HAVE SOME HOPE.”
AND PALLIATIVE CARE DOESN'T
TAKE AWAY ALL HOPE.
BUT WE HAVE TO ASK -- YOU
KNOW IT DEPENDS ON THE
PERSON AND IT'S NOT RIGHT
FOR EVERYBODY AND IT'S NOT
RIGHT FOR CERTAIN CULTURES,
BUT I THINK OFTEN WHAT
OPENING UP THE DISCUSSION OF
DEATH DOES FOR A FAMILY, IT
REALLY HELPS THEM GROW, IT
HELPS THEM COPE, AND I OFTEN
SAY TO FAMILY MEMBER, YOU
KNOW, IT'S REALLY FOR YOU
THAT WE'RE DOING THIS AND
IT'S FOR THE PATIENT.
AND BE ABLE TO -- PEOPLE
WANT TO BE REMEMBERED.
PEOPLE WANT TO REMEMBER
OTHER PEOPLE.
AND I THINK IT OFTEN, FOR
MOST PEOPLE, IS THE BEST WAY
OF DOING IT BUT YOU CAN DO
IT GENTLY.
YOU DON'T HAVE TO COME UP
AND SAY YOU'RE DYING, YOU'RE
DYING, YOU'RE DYING.
YOU CAN COME UP AND SAY
THERE ARE ISSUES AND MOST
PEEP ARE AWARE OF THAT MOST
PEOPLE WHO HAVE CANCER ARE
AWARE THEY'RE DYING.
WE DON'T TAKE AWAY ALL HOPE.
THAT'S NOT OUR
RESPONSIBILITY.
BUT WE SOMETIMES REFOCUS
HOPE.
YOU KNOW THAT WE'LL BE
COMFORTABLE, YOU'LL BE AT
HOME, YOU'LL BE WITH YOUR
FAMILY, THAT YOUR FAMILY
WILL BE OKAY, STILL IN THE
BACKGROUND THE PATIENTS KNOW
THAT THEY'RE DYING.

Karen says HEATHER, DO YOU
AGREE WITH THAT?

Heather says WELL, THE EMPHASIS AT THE
HOSPICE PLACE IS ON -- IT'S
NOT GEE WHAT I WANT TO DO
WHEN I GET WELL, BUT “WHAT
CAN YOU DO NOW?”
IF YOU DO KNOW THAT YOU'RE
NOT LIKELY TO HAVE LONG TO
LIVE, THERE ARE AMAZING
THINGS THAT PEOPLE CAN DO
WITH THEIR REMAINING
STRENGTH.
OFTEN PEOPLE WANT TO GO TO
THE COTTAGE FOR ONE LAST
TIME.
I MEAN, IF THEY'VE BEEN
PARTICULARLY FOND OF THE
LAKE, THE COTTAGE, I WOULD
WANT TO DO THAT.
THEY MIGHT WANT TO SEEK OUT
SOMEONE WHO LIVES FAR AWAY.
HAVE THIS PERSON COME.
THEY MIGHT WANT TO SAY
THINGS TO PEOPLE.
THEY MIGHT WANT TO JUST GO
OUT FOR A DRIVE.
MAKE A GIFT.
YOU KNOW, OFTEN PEOPLE WILL
MAKE A GIFT TO BE REMEMBERED
BY.
A SCRAPBOOK OR SOMETHING
THAT THEY COULD SEW.
THOSE, THOSE LAST, THOSE
LAST DAYS AND WEEKS WITH THE
FAMILY GATHERING AROUND AND
THEIR FRIENDS CAN BE VERY,
VERY, VERY MOVING.

Karen says THE DENIAL, THOUGH,
SOMETIMES CAN BE THE ONLY
WAY SOME CAN COPE.
SOME CAN GET THROUGH IT.

Heather says THAT'S TRUE.

Karen says HAVE YOU
EXPERIENCED THAT?
I HAVE IN OUR FAMILY, THEY
JUST CAN'T ACCEPT IT, SO
LIVING IN DENIAL IS A WAY OF
KEEPING IT TOGETHER UNTIL
THE PERSON IS GONE.
LARRY?

Larry says WELL YEAH, BUT -- DENIAL
CAN BE VERY HEALTHY, YOU
KNOW?
IT'S NOT -- BUT YOU KNEW IN
THE BACKGROUND IT WAS GOING
TO HAPPEN.
IT'S NOT LIKE THERE WAS A
TOTAL DENIAL OF DYING.
BUT YOU KNOW, WHEN THE
PERSON WANTS TO TALK ABOUT
IT YOU CAN'T PAT THEM ON THE
HEAD AND SAY THERE THERE,
DEAR, DON'T TALK ABOUT IT.
YOU REALLY NEED TO BE ABLE
TO DISCUSS THIS.
AS DIFFICULT AS -- TEARS ARE
FINE.
YOU KNOW, PEOPLE ARE AFRAID
OF CAUSING TEARS.
THERE ISN'T A SINGLE SCH HE
HAD ARE OF EVIDENCE THAT
TALKING ABOUT DYING MAKES
YOU DIE QUICKER AND IN FACT
IF IT RELIEVES STRESS, WE
HAVE SOME IDEA THAT BEING IN
PALLIATIVE CARE, AND BEING
ABLE TO TALK ABOUT THESE
THINGS MAY ACTUALLY PROLONG
YOUR LIFE.
BECAUSE IT'S VERY STRESSFUL
MAINTAINING THAT ISSUE OF
SILENCE ALL THE TIME.

Karen says WE HAVE DAVID ON
THE LINE WHO'S THE OWNER OF
WOODHAVEN WHO WE FEATURED
EARLIER, OFFERING A FREE
MINI VACATION FOR CAREGIVERS
AT HIS B and B IN LINDSEY.
HELLO, DAVID.

The Caller says GOOD AFTERNOON.

Karen says THANKS FOR CALLING IN.
DO YOU HAVE A QUESTION FOR
OUR GUESTS?

The Caller says WELL I DO,
ACTUALLY.
I HAVE A QUESTION FOR THE
DOCTOR ON YOUR PANEL.
BASICALLY WE'RE TALKING
ABOUT THE EDUCATION OF
FUTURE PALLIATIVE CAREGIVER,
AND AT THE SAME TIME TRYING
TO NURTURE SOME SORT OF OPEN
DIALOGUE IN OUR COMMUNITY
FOR THE ISSUES OF CARE
GIVING, BUT WHERE ARE THE
DOLLARS COMING?
WHERE'S THE SOURCE OF MONEY
FROM OUR PROVINCIAL AND
FEDERAL GOVERNMENT FOR
PALLIATIVE CARE TRAINING?
IF THESE PALLIATIVE CARE --
ESPECIALLY THE FUTURE
PALLIATIVE CAREGIVERS AREN'T
TRAINED, AND AREN'T GIVEN
THE SUPPORT NETWORKS
NECESSARY, THESE FOLKS ARE
GOING TO BE SO TOTALLY
BURNED OUT WITHIN WEEKS OF
BECOMING CAREGIVERS THAT IT
WILL BE COSTING THE SYSTEM
MORE TO PUT PATIENTS IN
HOSPITALS THAN KEEPING THEM
AT HOME WITH WELL-INFORMED
CAREGIVERS.
SO MY QUESTION IS, YOU KNOW,
WHY ISN'T THE MEDICAL
COMMUNITY PUSHING THE
GOVERNMENTS, FEDERAL AND
PROVINCIAL, TO PUT MORE
MONEY INTO THE HOMECARE AND
HOMECARE TRAINING PROCESS?

Karen says LARRY WHAT ARE THE
POLITICIANS SAYING TO YOU
WHEN YOU DISCUSSED THIS WITH
THEM?

Larry says THERE ARE A NUMBER OF
ISSUES.
ONE, ONTARIO HAS A VERY
UNIQUE PROGRAMME WHERE WE'RE
EDUCATING PROFESSIONAL,
THERE'S ABOUT 5 MILLION dollars PUT
INTO THAT IN A YEAR AND IT'S
VERY UNIQUE.
THERE'S NO OTHER PROGRAMME
LIKE THAT ANYWHERE IN THE
WORLD, ACTUALLY.
HOWEVER, THE PROGRAMME
TRAINS PEOPLE, BUT THEN THEY
GO BACK TO THEIR
INSTITUTIONS, AND THE
INSTITUTIONS DON'T CARE
ABOUT IT.
YOU KNOW, YOU REALLY NEED
TO -- ONE OF THE PROBLEMS WE
HAVE IS WE DON'T HAVE A
GROUP OF PEOPLE, A GROUP OF
CONSUMER -- A CONSUMER GROUP
THAT IS FIGHTING FOR US.
THE CANCER SOCIETY HAS A
CONSUMER GROUP THAT FIGHTS
FOR CANCER, UNFORTUNATELY
THE PEEP THEY'LL WE SERVE,
THEY DIE AND THEIR FAMILIES
BECOME TIRED AND THEY CAN'T
MAINTAIN THAT.
SO WE NEED A CONSUMER GROUP
THAT'S GOING TO PRESSURE THE
POLITICIANS.
IN NT WE HAVE A NEW
PALLIATIVE MEDICINE
RESIDENCY PROGRAMME, WHICH
TRAINED SPECIALISTS IN
PALLIATIVE CARE.
WE WERE TOLD BY THE
GOVERNMENT THEY DON'T WANT
TO PUT ANY MONEY INTO
SUPPORTING RESIDENTS IN THIS
WAY.
SO WE HAVE ALL THE
CAPABILITY OF TRAINING AT
LEAST 20 PHYSICIANS A YEAR
THIS THIS AND THE PROVINCIAL
GOVERNMENT SAYS NO, WE'RE
NOT INTERESTED.
SO IT'S GOING TO TAKE SOME
PRESSURE.
WE'VE TRIED.
WE'VE TRIED IN THE MEDICAL
SCHOOLS TO GET THEM TO
ACCEPT PALLIATIVE CARE,
TALKING ABOUT DYING, AND YOU
GET A FEW LITTLE BITS OF
TIME WITH THE STUDENTS, BUT
NOT A LOT.
AND SO WE'RE STILL
STRUGGLING WITH THAT.
WE REALLY HAVE TO TRY.
BUT I THINK THE POLITICIANS
WILL LISTEN.
I WAS SPEAKING TO A GROUP OF
POLITICIANS A FEW MONTHS
AGO.
THEY SAID THEY WILL LISTEN
WHEN THE PUBLIC START
DEMANDING BETTER SERVICES.
WHEN YOU DEMANDED MORE
M.R.I.s AND BETTER EMERGENCY
ROOMS AND MORE ACCESS, THE
GOVERNMENT RESPONDED.
BUT NOBODY'S STANDING UP
THERE SAYING, YOU KNOW, WE
NEED MORE SERVICES FOR THOSE
THAT ARE TERMINALLY ILL.
IT JUST ISN'T THERE.

Karen says BECAUSE THE PUBLIC'S
PUTTING THE EMPHASIS ON THE
FIGHT VERSUS THE ACCEPTANCE
OF DYING.

Larry says THAT'S RIGHT, YEAH.
AND WE HAVE TO PUT THAT, BUT
ON THE OTHER HAND IF WE KNOW
THAT 50 percent OF PEOPLE ARE GOING
TO BE DIAGNOSED WITH CANCER,
ARE GOING TO DIE OF THEIR
DISEASE, WHY SHOULD WE
FORGET THOSE 50 percent?
YOU KNOW, WE PUT ALL THE --
AND EVERYBODY EXPECTS
TECHNOLOGY IS GOING TO BE
THE THING THAT'S GOING TO
SAVE THEM.
WE'RE ALL GOING TO DIE
EVENTUALLY.
I MEAN, NO MATTER WHAT
TECHNOLOGY DOES, AND THE
CANCER CURE OF THE WEEK,
WE'RE ALL GOING TO GO ON TO
DIE, AND A THIRD OF US ARE
GOING TO DIE FROM CANCER, A
THIRD ARE GOING TO DIE FROM
HEART DISEASE AND A THIRD
ARE GOING TO DIE FROM A
VARIETY OF OTHER CAUSES BUT
NONE OF US IS IMMORTAL.

Karen says DAVID, THANKS FOR
CALLING IN AND ASKING THAT
QUESTION.
HEATHER, I WANT TO ASK YOU
ABOUT YOUR BOOK YOU WROTE ON
THE UNDERGROUND MEDICAL
SERVICE?
MEAN PALLIATIVE CARE?

Heather says YES.

(LAUGHING)

Heather says RIGHT.
WELL IT'S A MYSTERY.
DOING THIS BOOK HAS BEEN
LIKE BEING ALICE IN
WONDERLAND.
I'VE JUST FALLEN DOWN THE
RABBIT HOLE INTO THIS WHOLE
WORLD THAT IS INVISIBLE TO
THE WELL.
WHAT LARRY HAS BEEN TRYING
TO SAY IS HOW DO WE TELL
PEOPLE THAT THAT WORLD IS
THERE?
IT'S THE WORLD OF CARING FOR
THE DYING AND DOING IT WELL.
AND IT WAS -- I MEAN, PURE
ACCIDENT THAT I HAD A
CONTACT WITH LARRY THAT --
LARRY, THAT OUR SONS WENT TO
HIGH SCHOOL TOGETHER AND WENT
BACK YEARS BEFORE -- YOU
KNOW MY SON HAD COME HOME
FROM SCHOOL AND SAID
“DAVID'S DAD HAS THIS REALLY
INTERESTING JOB!
HE CARES FOR DYING PEOPLE.”
AND I THOUGHT WHOA!
I SORT OF TUCKED THAT AWAY
IN THE BACK OF MY MIND.
SO AFTER MY DAD'S DEATH, AND
I HAD A NAME AND A PHONE
NUMBER.
WHICH WAS Dr. LIBRACH, AND
IF I'D NOT HAD THAT, I'D
STILL BE FLAILING AROUND OUT
THERE SOMEWHERE, TRYING TO
FIND -- I LIVE IN YORK
REGION, AND TRY LOOKING IN
THE YORK REGION TELEPHONE
DIRECTORY TO FIND HOSPICE
PHONE NUMBERS!
OR THE PHONE NUMBER OF THEIR
PAIN AND SYMPTOM MANAGEMENT
CONSULTING TEAM.
THERE.

Karen says IT SHOULDN'T BE
THIS MASSIVE RESEARCH
PROJECT THAT TAIJS UP SO
MUCH TIME TO GET THAT ONE
PHONE NUMBER.

Heather says EXACTLY!

Karen says THAT'S WHAT MOTIVATED --
WHAT YOU SAID, LARRY, IS
THAT A LOT OF PEOPLE, AFTER
THEY'VE GONE THROUGH THE
EXPERIENCE OF DYING, THEY'RE
JUST NOT CAPABLE OF FIGHTING
FOR THAT AND PRESSURING A
GOVERNMENT TO SPEND MORE
MONEY.

Larry says BUT YOU KNOW, PEOPLE
SHOULDN'T BE LEFT ADRIFT!
I MEAN, IF SOMETHING -- IT
SHOULD BE A NATURAL SORT OF
REFERRAL TO PALLIATIVE CARE
FROM THE CANCER CENTRE, FROM
THE SURGEON, FROM THE
PHYSICIAN WHO SAYS LOOK, I
NEED -- YOU KNOW, THESE
PEOPLE ARE LOOKING AFTER
DYING LOVED ONES HARD ENOUGH
WITHOUT HAVING TO TRY TO
SEARCH THE INTERNET AND TRY
AND PHONE PEOPLE.
I MEAN, IT DOESN'T HAPPEN
THAT WAY WITH THE REST OF
THE MEDICAL CARE.
IF YOU HAVE A PROBLEM, YOU
KNOW, YOU KNOW TO GO TO THE
EMERGENCY DEPARTMENT YOU
KNOW IF YOU HAVE CHEST PAIN
YOU'RE GOING TO BE SEEN BY A
CARDIOLOGIST.
WHEN YOU'RE DYING, IT SEEMS
TO BE THIS SECRET.
EVERYBODY SORT OF LEAVES YOU
HANGING.
SO IT SHOULDN'T BE UP TO THE
FAMILIES TO HAVE TO SEARCH
OUT HELP, IT SHOULD BE MADE
AVAILABLE TO THEM.
JUST LIKE ALL THE OTHER CARE
THAT'S AVAILABLE TO THEM.
WHEN SOMEBODY GETS A
DIAGNOSIS OF CANCER, WE MAKE
RADIATION AND CHEMOTHERAPY
AVAILABLE TO THEM IF IT'S
APPROPRIATE.
YOU KNOW, WE SHOULD BE DOING
THAT WITH PALLIATIVE CARE AS
WELL.
AND WE ARE STARTING TO
INTEGRATE INTO THE CANCER
CARE SYSTEM.
I WORK IN A CONDITIONER IS
CENTRE WHERE WE'RE JUST
STARTING TO DO THAT, WHERE,
YOU KNOW -- AND IF YOU
INTEGRATE THAT IN WITH THE
CARE, THEN IT'S A SMOOTH
TRANSITION.
TOO OFTEN WE HAVE THE BUMPY
TRANSITION THAT HEATHER HAD.
YOU KNOW?
JUST THAT'S IT, AND I'M
GOING ON VACATION.
BUT, YOU KNOW, WE CAN
INTEGRATE IN THERE.
IT SHOULDN'T BE UP TO THE
FAMILIES AND PATIENTS TO
HAVE TO SEARCH THIS OUT.

Karen says IN TERMS OF HELP FOR
CAREGIVER, IF YOU COULD JUST
GIVE US JUST A SENSE OF HOW
YOU CAN HELP COPE, WHAT TO
KEEP IN MIND IF YOU'RE
FINDING YOURSELF GOING
THROUGH A REALLY DIFFICULT
TIME AND YOU'RE UNABLE TO
REACH OUT WHAT SHOULD YOU
START WITH?

Heather says AS A CAREGIVER?

Karen says AS A CAREGIVER, YEAH.

Heather says AND YOU NEED HELP?

Karen says YOU NEED HELP BECAUSE YOU
CAN'T COPE.
YOU JUST -- YOU FEEL LIKE
YOUR WORLD IS CAVING IN ON
YOU, BECAUSE YOU HAVE A
DYING HUSBAND OR A DYING
FATHER, AND YOU JUST, YOU
HAVE NOWHERE ELSE TO TURN
FOR HELP, HOW DO YOU START?

Heather says WELL, LARRY'S ADVICE TO ME WAS TO CALL THE V.O.N.
AND I DIDN'T, AND I SHOULD HAVE.
VERY OFTEN THE COMMUNITY
NURSE, AND NOT NECESSARILY
THE V.O.N., IT COULD BE ANY
NURSING SERVICE, IS NOT A
BAD PLACE TO START, BECAUSE
THE NURSE, THE COMMUNITY
NURSE WILL COME TO THE HOME.
AND HOSPICES USUALLY HAVE
NURSES, YOU KNOW, ON STAFF.
COME TO THE HOME AND ASSESS
THE SITUATION.
SPEAK WITH, YOU KNOW, THE
PERSON YOU'RE CARING FOR.
SPEAK WITH YOU.
AND OPEN UP THAT DISCUSSION.
WHAT IS IT THAT YOU NEED?
BECAUSE EVERYBODY'S NEEDS
ARE UNIQUE.
COMPLETELY UNIQUE.
SO -- AND I HAVE A LOT OF
RESPECT FOR A REALLY GOOD
COMMUNITY NURSE, AND THEN
THE NURSING AGENCY CAN
PERHAPS, YOU KNOW, SET THE
WHEEL IN MOTION TO GET YOU
BETTER PHYSICIAN CARE THAN
YOU HAVE.
BECAUSE IT'S POSSIBLE ALWAYS
TO GET A SECOND OPINION.
YOU KNOW, OPEN SOME DOORS IN
YOUR COMMUNITY CARE ACCESS
AGENCY SEE, FIND YOU SOME
HOMECARE, IF YOU NEED HELP
WITH HOUSEWORK, ALL OF THOSE
KINDS OF THING, PUT NEW
TOUCH WITH HOSPICE --

Karen says AND DO THOSE
PEOPLE EXIST IN COMMUNITIES
ACROSS THE PROVINCE?

Heather says THE COMMUNITY NURSES?

Karen says YES.

Heather says THEY'RE IN PLACE IN EVEN
SMALL COMMUNITIES.

Larry says YEAH, AND YOUR FAMILY
DOCTOR IS ANOTHER RESOURCE.
NOW SOMETIMES THE DOCTORS
DON'T KNOW ABOUT THEIR
RESOURCE, BUT CERTAINLY THE
COMMUNITY NURSE IS A GOOD
PLACE TO START BUT YOUR
FAMILY DOCTOR IS, WILL YOU
KNOW, SOMEBODY YOU NEED TO
REACH OUT TO WHEN YOU'RE
FEELING THAT WAY.
YOU KNOW, BECAUSE THERE ARE
RESOURCES AROUND.
PEOPLE DON'T KNOW ABOUT IT.
MOST OF THE PEOPLE SHOULD BE
ON HOMECARE AREN'T ON HOMECARE.

Karen says THAT'S THE NEW BUZZ WORD
FOR ONTARIO, IS HOMECARE.
THAT'S WHERE WE'RE MOVING.

Larry says BUT THE MINISTRY ISN'T
PUTTING RESOURCES INTO IT.
THEY'RE JUST BARELY KEEPING
UP WITH ITWE'RE GOING TO
HAVE A TERRIBLE CRISIS IN
COMMUNITY NURSING WITHIN THE
NEXT FEW MONTHS, ACTUALLY.
IT'S NOT EVEN A FEW YEARS.
BUT ONLY -- YOU KNOW, IN OUR
ESTIMATION, WE'RE DOING THIS
PILOT PROJECT FOR THE
MINISTRY AND ONLY ABOUT 30 percent
TO 40 percent OF PEOPLE WITH
ADVANCED ILLNESSES ARE
ACTUALLY ON HOMECARE.
THEY DON'T HAVE THE SERVICES
OF A NURSE COMING IN.
SO WHEN SOMETHING HAPPEN,
THEY DON'T KNOW WHAT TO DO,
THEIR FAMILY DOCTOR MAY NOT
BE ABLE TO COME OUT OR MAY
NOT TO WANT COME OUT TO SEE
THEM, AND SO THEY'RE IN THE
EMERGENCY DEPARTMENT AND AND
THEY KEEP BOUNCING BACK AND
FORTH.
THEY'RE NOT PUT ON HOMECARE
AND IT'S VERY INTERESTING.
WE HAVE A SYSTEM -- HERE WE
ARE EMPHASIZING HOMECARE AND
MOST PEOPLE STILL DON'T EVEN
KNOW HOW TO ACCESS IT.

Karen says I THINK FROM OUR
DISCUSSION TODAY THAT THE
ANSWER AND THE THEME IS THAT
THERE'S HELP OUT.
IT'S A DIFFICULT TOPIC.
I MEAN, DEATH IS NOT EASY TO
TALK ABOUT, BUT THROUGH THIS
I THINK WE'VE READY GOT THE
MESSAGE, I'M HOPING, IS THAT
THERE'S HELP.
YOU DON'T HAVE TO BE ALONE.

Heather says YEAH.

Larry says YEAH.

Karen says AND HEATHER, THANK
YOU SO MUCH, BECAUSE YOUR
BOOK GETS STARTED FOR THOSE
WHO NEED TO REACH OUT.
THANK YOU BOTH FOR COMING IN TODAY.
Dr. LARRY LIBRACH, DIRECTOR
OF THE MT. SINAI'S
PALLIATIVE CARE CENTRE AND
HEATHER ROBERTSON, AUTHOR OF
“MEETING DEATH” PUBLISHED BY
McCLELLAN AND STUART.
FOR MORE INFORMATION YOU CAN
CONTACT the Ontario Community Support Association at 1-800-267-6272.
Or check out their website at
www.pallcare.org
That’s it for today’s show. Join us Monday through Friday’s at 1 o’clock for More to Life.

Watch: Dealing with Death