Transcript end of life

END OF LIFE:
DIFFICULT DECISIONS
DIFFICULT DISCUSSIONS
1
“Each day, we wake slightly altered,
and the person we were yesterday is dead.
So why, one could say, be afraid of death,
when death comes all the time?”
John Updike
2
One day, Duck turns around to find Death standing behind her.
Terrified, she asks whether he has come to take her, but he remarks rather matterof-factly that he has been there her entire life.
3
Talking about end-of-life is challenging
Death and dying aren’t subjects that most people usually want to discuss.
But it is one of the most important conversations we can have because it’s not
actually about dying.
It’s about how people want to live during their last months, weeks, and days.
Ignoring end-of-life won’t make it go away!
4
End-of-life planning usually includes:
The goals of care, like if certain medicines or treatments should be continued
Where someone wants to spend their final days
Which treatments they wish to receive
What type of palliative care and/or hospice care they wish to receive
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The care Americans say they want near the
end of life differs significantly from the care
they often receive.
• If given the choice, a vast majority of Americans would prefer to die at home,
surrounded by family and loved ones
• 70% die in hospitals, nursing homes, or long-term care facilities,
often after receiving unwanted medical treatment in their final days
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HISTORY
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- in1900 the average lifespan was 47.3 years
-in1997 it had increased to 76.5 years
-Women currently live seven years longer than men do
-Among those 85 and older, there are five women for every two men
-African American woman can expect to live 74 years, compared to 80 years for a
European American woman
-Social class factors, including income and education levels, also affect longevity.
-People over the age of 65 will soon outnumber children under the age of five
-By 2030, the number of people aged 65 and older is projected to reach one in eight of
the global population, rising even more sharply (by 140%) in developing countries
-In developed countries, medical services have all too often focused on preventing death
rather than helping people meet death without suffering pain, discomfort and stress
.
-End of life care accounts for a huge portion of health care costs now, as well as costs to
family, both tangible and emotional
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CAUSES OF DEATH
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Ten leading causes of death:
In 1900
In 1998
• pneumonia
heart disease
• tuberculosis
cancer
• diarrhea and enteritis
stroke
• heart disease
chronic lung disease
• stroke
pneumonia & influenza
• liver disease
accidents
• injuries
diabetes
• cancer
suicide
• senility
kidney disease
• diphtheria
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chronic liver disease
It is estimated that 70-80% of people
in advanced industrial nations
now face death later in life
from chronic or degenerative diseases
characterized by late, slow onset
and extended decline
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WHAT ARE WE DOING TO PLAN FOR OUR DEATH?
• 82% OF ALL PEOPLE SAY IT IS IMPORTANT TO PUT THEIR END OF LIFE WISHES
IN WRITING; ONLY 23% HAVE DONE THIS.
• 90% OF PEOPLE SAY THAT TALKING WITH THEIR LOVED ONES ABOUT END OF
LIFE CARE IS IMPORTANT; ONLY 27% HAVE ACTUALLY DONE SO
• 60% OF PEOPLE BELIEVE THAT NOT BURDENING THEIR FAMILY WITH TOUGH
DECISIONS IS IMPORTANT TO THEM BUT 56% OF PEOPLE HAVE NOT
COMMUNICATED THEIR END OF LIFE WISHES TO FAMILY
• 80% OF PEOPLE SAY IF THEY ARE SERIOUSLY ILL THEY WOULD WANT TO TALK
WITH THEIR PHYSICIAN/NURSE PRACTITIONER/PHYSICIAN ASSISTANT ABOUT
THEIR END OF LIFE CHOICES; 7% HAVE ACTUALLY TALKED WITH THEIR
PHYSICIAN ABOUT THIS.
•SOURCE: Survey of Californians by the California HealthCare Foundation (2012)
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“Are you cold?” Duck asked. “Shall I warm you a little?”
Nobody had ever offered to do that for Death.
13
They awake together in the morning and Duck is overjoyed to discover that
she is not dead. Here, Erlbruch injects the lightheartedness always
necessary for keeping the profound from slipping into the overly
sentimental:
She poked Death in the ribs. “I’m not dead!” she quacked, utterly delighted.
“I’m pleased for you,” Death said, stretching.
“And if I’d died?”
“Then I wouldn’t have been able to sleep in,” Death yawned.
That wasn’t a nice thing to say, thought Duck.
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But since any friendship is woven of “a continued, mutual forgiveness,” Duck eventually
metabolizes her hurt feelings and the two find their way into a conversation about the
common mythologies of the afterlife central to our human delusion of immortality:
“Some ducks say you become an angel and sit on a cloud, looking over the earth.”
“Quite possibly.” Death rose to his feet. “You have the wings already.”
“Some ducks say that deep in the earth there’s a place where you’ll be roasted if you
haven’t been good.”
“You ducks come up with some amazing stories, but who knows.”
“So you don’t know either,” Duck snapped.
Death just looked at her.
15
They could see the pond far below. There it lay. So still. And so lonely.
“That’s what it will be like when I’m dead,” Duck thought. “The pond alone, without me.”
Death sometimes read minds. “When you’re dead, the pond will be gone, too — at least for you.”
“Are you sure?” Duck was astonished.
“As sure as can be,” Death said.
“That’s a comfort. I won’t have to mourn over it when…”
“…when you’re dead.” Death finished the sentence. He wasn’t coy about the subject.
16
As summer winds down, the two friends visit the pond less and less, and sit
quietly in the grass together more and more. When autumn arrives, Duck feels
the chill in her feathers for the first time, perhaps in the way that one suddenly
feels old one day — the unannounced arrival of a chilling new awareness of
one’s finitude, wedged between an unredeemable yesterday and an inevitable
tomorrow.
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ONE CONVERSATION CAN MAKE
ALL THE DIFFERENCE
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Remember:
• You don’t need to have the conversation just yet. It’s okay to just start thinking
about it.
• You can start out by writing a letter—to yourself, a loved one, or a friend.
• You might consider having a practice conversation with a friend.
• Having the conversation may reveal that you and your loved ones disagree.
• Having the conversation isn’t just a one-time thing. It’s the first in a series of
conversations over time.
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END OF LIFE PLANNING AND DISCUSSIONS:
• Many families never discuss the kind of care a person wants until a crisis - the
worst time to make such decisions.
• Often Health Care Providers do not discuss end of life planning until
there is a crisis or a diagnosis where one needs to face this.
• Medicare is now reimbursing Primary Care Providers (MD’s/NP’s/PA’s)
for discussing Advanced Care Planning.
• All adults need to plan for their health care, what they want and do not want,
as death is not just something the elderly face.
Words matter! Do you want to prolong your living (quality of life) or
prolong the dying process (quantity of life)?
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THE CONVERSATION PROJECT
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When you think about the last phase of your life, what’s most important to you?
How would you like this phase to be?
Do you have any particular concerns about your health? About the last phase of
your life?
What affairs do you need to get in order, or talk to your loved ones about?
(Personal finances, property, relationships)
Who do you want (or not want) to be involved in your care?
Who would you like to make decisions on your behalf if you’re not able to? (This
person is your health care proxy.)
• Would you prefer to be actively involved in decisions about your care? Or would
you rather have your doctors do what they think is best?
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• Are there any disagreements or family tensions that you’re concerned about?
• Are there important milestones you’d like to be there for, if possible? (The birth of
your grandchild, your 80th birthday.)
• Where do you want (or not want) to receive care? (Home, nursing facility, hospital)
• Are there kinds of treatment you would want or not want? (Resuscitation if your
heart stops, breathing machine, feeding tube)
• When would you want to shift from a focus on curative care to a focus on comfort
care alone?
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WHAT KIND OF ROLE DO YOU
WANT TO HAVE
IN YOUR DECISION MAKING PROCESS?
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AS A PATIENT, I’D LIKE TO KNOW
• ONLY THE BASICS ABOUT MY CONDITION AND MY TREATMENT
• ALL THE DETAILS ABOUT MY CONDITION AND MY TREATMENT.
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AS DOCTORS TREAT ME, I WOULD LIKE
• MY DOCTORS TO DO WHAT THEY THINK IS BEST
• I WANT TO HAVE A SAY IN EVERY DECISION
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IF I HAD A TERMINAL ILLNESS, I WOULD PREFER TO
• I WOULD NOT WANT TO KNOW HOW QUICKLY IT IS PROGRESSING
• I WANT TO KNOW MY DOCTOR’S BEST ESTIMATE FOR HOW LONG I HAVE TO
LIVE
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HOW LONG DO YOU WANT TO RECEIVE MEDICAL CARE?
• INDEFINITELY, NO MATTER HOW UNCOMFORTABLE TREATMENTS ARE
• QUALITY OF LIFE IS MORE IMPORTANT THAN QUANTITY
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“I’m cold,” she said one evening. “Will you warm me a little?” Snowflakes drifted
down.
Something had happened. Death looked at the duck. She’d stopped breathing. She
lay quite still.
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Stroking her disheveled feathers back into a temporary perfection, Death picks Duck up
and carries her tenderly to the river,
then lays her on the water and releases her into its unstoppable flow, watching wistfully
as she floats away.
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“Perhaps tragedies are only tragedies
in the presence of love,
which confers meaning to loss.”
Elizabeth Alexander
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WHAT KIND OF CARE DO YOU WANT TO RECEIVE?
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WHAT ARE YOUR CONCERNS ABOUT TREATMENT?
• I AM WORRIED THAT I WON’T GET ENOUGH CARE
• I AM WORRIED I WILL GET OVERLY AGGRESSIVELY CARE
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WHAT ARE YOUR PREFERENCES ABOUT WHERE YOU WANT TO BE?
• I WOULDN’T MIND SPENDING MY LAST DAYS IN A HEALTH CARE FACILITY
• I WOULD RATHER BE AT HOME
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HOW INVOLVED DO YOU WANT YOUR LOVED ONES TO BE?
• I WANT MY LOVED ONES TO DO EXACTLY WHAT I’VE SAID, EVEN IF IT
MAKES THEM A LITTLE UNCOMFORTABLE
• I WANT MY LOVED ONES TO DO WHAT BRINGS THEM PEACE EVEN IF IT
DOES NOT FOLLOW MY WISHES
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WHEN IT COMES TO YOUR PRIVACY
• WHEN THE TIME COMES I WANT TO BE ALONE
• I WANT TO BE SURROUNDED BY MY LOVED ONES
• I DON’T WANT MY LOVED ONES TO KNOW EVERYTHING ABOUT MY
HEALTH
• I AM COMFORTABLE WITH MY LOVED ONES KNOWING EVERYTHING
ABOUT MY HEALTH
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YOU ARE READY TO HAVE THE CONVERSATION:
• WHO DO YOU WANT TO TALK TO?
• WHEN WOULD BE A GOOD TIME TO TALK?
• WHERE WOULD YOU FEEL COMFORTABLE TALKING?
• WHAT IS MOST IMPORTANT TO SAY?
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THE FIVE WISHES
Wish One lets you choose the person you want to make decisions for you
when you can’t make them for yourself. Lawyers call it a "durable power of
attorney for health care."
Wish Two is a living will. It lets you put in writing the kind of medical treatment
you want or don't want if you become seriously ill and can't communicate to
anyone.
Wishes Three and Four let you describe in detail how you want to be treated
so that your dignity can be maintained.
Wish Five gives you a chance to tell others how you want to be remembered,
and to express other things that might be in your heart, like forgiveness.
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HOW TO START THE DISCUSSION:
• I NEED YOUR HELP WITH SOMETHING
• REMEMBER HOW “MOM” DIED...WAS THIS DIFFICULT FOR YOU?
• I WANT THINGS TO BE DIFFERENT WHEN I DIE
• EVEN THOUGH I AM HEALTHY NOW, I WANT TO BE PREPARED
• I NEED TO THINK ABOUT THE FUTURE. WILL YOU HELP ME?
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• I AM THINKING ABOUT HOW I WANT THINGS TO BE AT THE END OF MY
LIFE. I’M WONDERING IF YOU HAVE THOUGHT ABOUT THIS…
• I AM TRYING TO GET MY AFFAIRS IN ORDER AND TALK WITH MY LOVED
ONES ABOUT THEM. HAVE YOU DONE THIS?
• WHO WOULD YOU LIKE TO MAKE DECISIONS WHEN YOU ARE UNABLE?
• DOES YOUR FAMILY HAVE DISAGREEMENTS OR FAMILY TENSIONS THAT
YOU’RE CONCERNED ABOUT?
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As the river spills off the book and we turn to the last page, we see Death surrounded by
other animals —
a subtle reminder that he will escort the fox and the rabbit and you and me down the
river of life, just as he did Duck.
And perhaps that’s okay.
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“Death is our friend precisely
because it brings us into absolute
and passionate presence with all
that is here, that is natural, that is
love,”
Rilke wrote in contemplating how befriending
our mortality can help us feel more alive.
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Bottom line:
Most importantly, nobody can predict when end-of-life will happen.
So, the best option is to plan ahead and start now.
The last thing anyone wants is to try to have these conversations in the hospital.
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With credit given to the following:
DUCK, DEATH AND THE TULIP
BY
Wolf Erlbruch
AND THE WEBSITE:
BRAIN PICKINGS
THE CONVERSATION PROJECT
THE FIVE WISHES
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What Exactly Is an "Important Paper"?
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Legal Documents
Wills and trusts let you name the person you want your money and
property to go to after you die.
Advance directives let you make arrangements for your care if you
become sick. There are two ways to do this:
A living will gives you a say in your health care if you are too sick to
make your wishes known. In a living will, you can state what kind of care
you do or don't want. This can make it easier for family members to make
tough healthcare decisions for you.
A durable power of attorney for health care lets you name the person
you want to make medical decisions for you if you can't make them
yourself. Make sure the person you name is willing to make those
decisions for you.
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Personal records
• Full legal name
• Social Security number
• Legal residence
• Date and place of birth
• Names and addresses of spouse and children
• Location of birth and death certificates and certificates of marriage,
divorce, citizenship, adoption, service related documents
• Employers and dates of employment
• Education and military records
• Names and phone numbers of religious contacts
• Memberships in groups and awards received
• Names and phone numbers of close friends, relatives, and lawyer or
financial advisor
• Names and phone numbers of doctors
• Medications taken regularly
• Location of living will and other legal
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Financial records
• Sources of income and assets (pension from your employer, IRAs,
401(k)s, interest, etc.)
• Social Security and Medicare information
• Insurance information (life, health, long-term care, home, car) with
policy numbers and agents' names and phone numbers
• Names of your banks and account numbers (checking, savings, credit
union)
• Investment income (stocks, bonds, property) and stockbrokers' names
and phone numbers
• Copy of most recent income tax return
• Location of most up-to-date will with an original signature
• Liabilities, including property tax—what is owed, to whom, when
payments are due
• Mortgages and debts—how and when paid
• Location of original deed of trust for home and car title and registration
• Credit and debit card names and numbers
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• Location of safe deposit box and key