1. Straight talk! An open and honest conversation about dying…
Ann Jackson, MBA
Oregon Hospice Association
October 26, 2007
2007 Statewide Training Conference
RAP/CHAT Volunteers

2. About me… 20 years as director of Oregon Hospice Association
MBA in nonprofit management
Published in NEJM and other medical journals
Speaker re EOL care in Oregon
Member of Oregon and national task forces re hospice and EOL
Hospice caregiver in 1996

3. Oregon Hospice Association
Public benefit, charitable membership organization and accrediting body for hospices
Dedicated to ensuring that all Oregonians have high quality hospice and palliative care
Participates in research about end of life care in Oregon
Supports open and honest conversation about all end of life choices
Encourages opportunities to speak on behalf of Oregon and Oregon’s hospices
Addresses concerns about hospice and palliative care in all settings

4. Americans are planners!
Careers
Weddings
Families
Vacations
Retirement

5. Except… About the end of life Forcing others to take over when we’re
Most vulnerable
Most in need of understanding and comfort
Most longing for dignity
From “End of Life Decision-Making”
Family Caregiver Alliance

6. Objectives Outline issues we need to think—and talk—about
Talk openly and honestly about anything
Identify resources that can help in Oregon
Advance Directives
POLST
Discuss strategies for grieving—for ourselves and for residents

7. Why is it so hard to talk about dying?
Don’t want to think about it
Threatening
Fear of taking away hope
Insensitive
Culturally insulting

8. When we do talk about dying, what do we say?
“Didn’t make it”
“Passed away”
“Put to sleep”
“Gone to heaven”
“Kicked the bucket”

9. ..And what do our doctors say?
“There’s nothing more we can do.”
This is never true!

10. What are your rights at the end of life?
pain relief
refuse treatment
stop eating and drinking
make wishes known in advance
hospice and “palliative” care
physician aid in dying in Oregon

11. Oregon’s Death With Dignity Act
Add experienced-based information to data void
Not defend ODDA
Not debate whether assisted dying—or hastening death—is right or wrong

12. Assisted Dying: A Legal Option in Oregon
No longer matters whether physician- assisted dying is right or wrong
Allowable in state
Dying Oregonians eligible for both hospice and ODDA

13. Provisions of ODDA
Allows terminally-ill adult to request prescription for self-administered lethal medication
Prohibits euthanasia
“Physician-assisted suicide” accepted term to describe provisions of law
Ending life is not suicide under Act

14. Patient Requirements Oregon resident 18 years of age “Capable”
Able to make and communicate health care decisions
Terminal illness with 6 months or less to live
Request must be voluntary

15. Perspective 270,000 Oregonians died between 1998 and 2006
292 used physician-assisted suicide
269,708 did not

16. Patient Concerns

17. Why do so few Oregonians use assisted suicide?
Because most reasons people give for believing assisted suicide should be legal can be “fixed” in ways that
Require no additional legal sanction
Practiced throughout country
Dying Americans can choose from among all

18. What are your choices? Control pain and other symptoms
Refuse or withdraw treatment
Seek hospice and palliative care
Make decisions in advance
Appoint health care power of attorney

19. Who should you talk to? Friends and family members Your doctor
Be open and honest about your concerns
Your doctor
Tell him or her how much you want to know about your illness, your prognosis, treatment options, and hospice

20. What should you talk about?
Who will make decisions for you?
What care would you want? Or fear?
Do you want to be resuscitated?
Do you want to go to the hospital?
How will your care be paid for?
What is covered by your insurance?
What happens when a person dies?

21. What are advance directives?
Written instructions that communicate wishes about care and treatment
Living will
Medical power of attorney
Health care representative, agent, proxy or surrogate

22. Why do you need an advance directive?
So that medical personnel and your loved ones will know what you would prefer if you are unable to speak for yourself
So that medical personnel will know who can speak for you if there’s disagreement

23. What care may be included in an advance directive?
Artificial feeding
Mechanical ventilators
CPR
Antibiotics
Dialysis
Other invasive procedures

24. What other instructions might you include?
That you do not want life-prolonging treatments if you will never recover your physical or mental health
That you do want your life prolonged as long as possible

25. What you would want under certain conditions
if you have dementia
if you’re in a coma
if you have advanced disease
That you’d want comfort measures or hospice

26. What happens if you don’t make your wishes known?
Default is that everything will be done to keep you alive
Family members and friends will undergo the stress of having to make decisions on your behalf without knowing what you would have done

27. An advance directive is a “gift” you can give your loved ones

28. What are we afraid of?
Hospice addresses fears people give for wanting physician-assisted dying
Dying in pain
Dying in the hospital
Being hooked up to machines
Being alone
Being a burden
Losing control
Only in Oregon may people have both both hospice and physician-assisted dying

29. People have nothing to lose in hospice care!
“Win-Win”
If patient doesn’t like hospice care he or she can quit
If patient gets better, he or she will be discharged…

30. What we don’t know can hurt us!
Give doctors “permission” to be open and honest—and to tell the truth

31. Discussion

32. Resources Medicare Hospice Benefit
Links and resources about end of life care
Advance directives for every state