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The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians' failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.
--Eric J. Cassell


speaker: Susan Hedlund, LCSW
Director of Pt and Family support svcs @ Knight Cancer Institute, OHSU

WHAT I WANT
My Perfect Death (an exercise)
who is there: my dearest most beloved people, family, friends, lover
what do I believe: that death is the end of this strain of consciousness
what am I afraid of: being alone and in pain both physical and emotional, having unfinished business
what do I wish for: to be held, for there to be singing and beauty and joy and celebration of life
what 3 things give life its purpose/meaning?

WHAT SOME PEOPLE WANT
write a letter, tape a message
private goodbyes with important people
final trip
poetry, music
to be held or comforted
to be alone

CONSIDER
organ and tissue donation intentions
burial or cremation choices
family tradition?
how you want to be remembered
bottom line about life and death
who you want to share this info with
how much intervention is too much?
when to stop small fixes? when to say "enough is enough"?

SITE OF DEATH
56% hospital
19% nursing home
21% home
other 4%
Oregon has much lower in hospital death rate than the rest of the US

CURE TO CARE
palliative care is paramount at end of life but can be utilized at any time
shfit from life prolonging care to palliative care is not always done gracefully in conventional settings or back east
shift is usually gradual, necessary to continue to check in about intentions of individual and family
goal: quality of life for patient and family
more goals: relief of suffering, staying in control, good death, support for all
palliative care: sees death as personal and natural, preferences of pt and family are respected
locations for delivery of care: hospital, hospice, nursing home, home

HOSPICE
"a reimbursement benefit for pts who have a limited prognosis or life expectancy"
physician certifies 6mo or less to live, other aggressive tx is d/c'd, medicare benefit
usu community based, focus on care not cure, relief of pain, psycho-social support
team of professionals and trained volunteers
patient has control, family is involved
specialized services: pharm, supplies/equipment, pastor, grief counseling, volunteer support
option to die at home
some pts live far longer than prognosis

ACP ADVANCE CARE PLANNING
should be updated regularly, copies to all who matter
values/goals are explored and documented
designate a surrogate decision-maker (healthcare proxy, power of attorney)
a process, not an event
reduces confusion and conflict
has become more complex: many options available now that were not available before
if no directive: spouse first asked, then parents, adult children, etc
personal letter or value statement

BARRIERS TO ADVANCE DIRECTIVE COMPLETION
belief that doc/pt (the other) should initiate discussion
procrastination, apathy, ignorance, time constraint
avoiding delicate or upsetting subjects, discomfort
belief that family should decide

FOR DOC
make it routine "this is something I disuss with all my pts".
elicit important values: "what makes life worth living or NOT worth living"
address limited number of issues: CPR, artificial nutrition/hydration
resuscitation, intubation, surgery, dialysis, transfusions, dx tests, TPN, abx, hospital/ICU admissions

OREGON IS A LEADER
one of first states ot have adnvance directives 1977
health care power of attorney 1980
first state to combine the two 1993
one of states to demo Medicare Hospice Demo Project (80's)
right to hospice and comfort care 1989
right to pain relief 1993
right to refuse or withdraw tx 1993
first state to legalize death with dignity 1997 (only WA has followed suit)
euthanasia is not legal, no one else can intiate

DEATH WITH DIGNITY LAW HISTORY
Citizen initiative 11/94 (51% vs 49%)
Injunction 12/94
Repeat referendum defeated 11/97 (60% to 40%)
DEA threatens physicians
Reno reversal 4/98
Ashcroft re-reversal 11/01
2002 Ashcroft appealed district court ruling
2004 Ashcroft sued Oregon to overturn

DEATH WITH DIGNITY LAW
allows terminally ill resident presciption for self-administered lethal medication
ending life under the act is not considered suicide, prohibits Euthanasia
pt must be capable and competent ("vegetables" can't have it)
pt must be over 18, resident of oregon
two physicians must confirm 6mo or less prog
request must be voluntary
must have two written and two verbal requests at least 15 days apart

STATS ON DWD
341 DWD deaths in 10 years, scripts written total 541 (many just want the option and don't use it)
270,0000 Oregonians died 1998-2006, 292 used DWD, that's 1/7 of 1%
86% of Oregonians using DWD were hospice patients

WHY DWD
top two reasons to pursue:
loss of autonomy
loss of control over circumstances of dying
these reasons have remained consistent over the years

THE DYING PT
awareness of impending death
fear of death, pain, loss of dignity, being a burden
fear of what comes after

TASKS OF DYING
personal affairs
loss of loved ones, self, control, security, independence, predictability, consistence, future, pleasure, dreams
planning future medical needs
planning for the future

THE LIVING-DYING INTERVAL
hard to predict
remissions, relapses
lengthened periods of anticipatory grief
incrased financial, social, physical pressure
family disruption
progressive decline
dilemmas
wishing it was over

GRIEF
normal, develops over time
does not follow predictable pattern
important to experience it

TASKS OF MOURNING
accept the reality of loss
experience the pain
adjust to environment in which deceased is missing
withdraw emotional energy and reinvest in life

SUPPORTING THOSE WHO ARE DYING OR GRIEVING
be present, listen to stories, bear witness
tolerate "not fixing" things
manage sx
help them achieve goals
help them say goodbye
be patient
know your personal limits, take a break when needed, control personal fears of death

ANIMALS CAN PREDICT DEATH
Oscar the cat
Scamp the dog

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