How useful are advance directives in directing end of life care and do people really understand or want to know the true status of their health as the end nears?

1. Issues at The End of Life
Robert Miller MD/ ASPEC/Aug 2021

2. Assumptions That May Not Be True
1. Most people assume if their health is in decline that:
• trust the doctor to tell them the truth
• assume the doctor can accurately predict their future outcome
• will understand what he/she says
• they will always want to know the truth (even if it’s bad)
• with the information will make better decisions
2. Most people know what their values are
• and can predict how they will feel in the future even if things change (and
they can write this all down for future reference)
• and assume their family knows how they feel and agrees

3. Areas of confusion involving end of life decisions.
- Does incurable mean terminal, and how long is
terminal?
- What does palliation mean and what interventions
are included?
- Do people really understand their status?
- Do advance directives result in ‘better’ outcomes?

4. The Reinvigoration Of A 13th Century
Hospice In The Swiss Alps
Dr. Miller/s Bona Fides in Palliative Care
- Radiation Oncologist (1976-2020) as many as 50% of the
patients were treated with palliative approach
- Board member and lectured for Suncoast Hospice in 1980-90’s
- Founding member and first national president of the Academy
of Hospice and Palliative Medicine
- Chairman of ethics committee for years at Saint Anthony’s
- Personal experience with multiple family members who
expired under hospice care

5. The modern concept of hospice was later developed in England in 1967 by Dr. Cicely Saunders. By the 1970’s
small volunteer hospices were being developed in the Unites States. Suncoast Hospice started in Pinellas in 1977
and by early 1980’s was one of the largest in the world. Medicare added a hospice benefit in 1982.
Instead of multidisciplinary (multiple specialties led by a physician) it was interdisciplinary (often headed by social worker or
clergy).
I thought we needed to clarify the role of physicians and the need to develop a specialty (expertise) in palliative care
(medicine) . We split from the NHO (National Hospice Organization) to form the AHP (Academy of Hospice Physicians)

7. When we started there was confusion about the definition of ‘terminal and palliation’ and
concerns about the ethics of withdrawing life prolonging interventions (esp food and water).
Physicians can now specialize in palliative care medicine.

8. Cardinal Principals of Medical Ethics
Autonomy - the patient has the right to refuse or choose their treatment.
Beneficence - a practitioner should act in the best interest of the patient.
Nonmaleficence - "first, do no harm"
Justice – fair distribution of scarce health resources
Veracity - truthfulness

9. Quality of ‘medical care’ for centuries was so problematic
that the emphasis quite appropriately was to at least try
not to hurt people.

10. Changing Priorities in Medical Ethics up to 1950’s
Nonmaleficence
Autonomy
Beneficence Justice
Veracity
Quality of ‘medical care’ for centuries was so problematic that the emphasis quite appropiratley was to at least
try not hurt people.

11. Changes in Physicians' Attitudes Toward Telling the Cancer Patient
(Novack. JAMA 241:897-900, 1979)
In 1961 88% of patients were not even told they had cancer, by 1977 this had
dropped to 2%

12. Tuskegee Study of Untreated Syphilis in the Negro
Male

13. The Tuskegee Timeline
In 1932, the USPHS, the “Tuskegee Study of Untreated Syphilis in the Negro Male”
Participants’ informed consent was not collected. Researchers told the men they were
being treated for “bad blood,”
By 1943, penicillin was the treatment of choice for syphilis and becoming widely
available, but the participants in the study were not offered treatment.
In 1972, an Associated Press story about the study was published. As a result, the
Assistant Secretary for Health and Scientific Affairs appointed an Ad Hoc Advisory Panel
to review the study and stopped it.
Maybe Veracity is Important

14. Changing Priorities in Medical Ethics 1960’s -2000
Nonmaleficence
Autonomy
Beneficence
Justice
Veracity

15. November 30, 2010
Medscape medical ethics survey of over 10,000 physicians: Would you ever hide
information from a patient about a terminal or preterminal diagnosis, because you
believe that it will bolster their spirit or attitude?
59.8% : "tell it exactly as I see it“
23.8% : "it depends."
14.6% :indicate that they soften the news and "give hope even if
there is little chance."
2% : indicate that unless a patient is going to die imminently, they
don't tell him or her how bad the situation is

16. The Truth Will Set You Free?
“Tell me lies, tell me sweet little lies”
Fleetwood Mac
“Still a man hears what he wants to hear and disregards the
rest.” Paul Simon
Conversation is often ‘Ambivalent-Ambiguous’ Exchanges (“Does this dress
make me look fat?”)

17. “The single biggest problem in
communication is the illusion
that it has taken place”.
George Bernard Shaw 1856–1950

18. No ‘One size fits all’
1.Patient has the right to be given all available information
(veracity)
2.Patient has a right to decline information (autonomy)
3.Patient has the right to make decisions regardless of
whether he understands his medical status
4.Often there is very little useful or accurate information
available
“Does anybody really know what time it is?” Chicago Transit Authority

19. Palliation or Curative
Curative Palliative
Do everything Do nothing
Seems a little simplistic

20. Curative Active Palliative Supportive
Goal cure prolong life symptoms symptoms
Cancer attack attack attack ignore
Therapies all all mild chemo/XRT analgesics
Morbidity major major minor none
Mindset “win” “fighter” “make me “let me go”
comfortable”
Palliation or Curative
for health-related (cancer) suffering

21. Survey question to hospice bereavement staff
If the families complain about the doctor after the patient dies, is it
because:
A. He was too optimistic (false hope)
B. He was too pessimistic (too negative)
Answer: 50% A and 50% B

22. Actual Survival Curve with A
median survival of six months
(half live more than 6 months
and have live less than 6
months)
The public’s understanding of
a survival chart if the patient
was “given six months to live”
Every one is alive at 5.9
months and every one dead
by 6.1 months
Survival
Survival
Months

23. Dies too soon
False hope
Lives too long
Too negative

24. Karnofsky Score

25. Terminal = last 6 months (2 months)

26. Cancer patients' insight into treatment, prognosis, and
unconventional therapies.
• The authors interviewed 190 patients with metastatic cancer
• Only 55% of the patients were aware that their cancer had spread,
and only 48% knew the location of their metastases.
• Patients were optimistic about their treatment; 37% thought it would
cure them
Eidinger. Cancer 1984 Jun 15;53(12):2736-40.

27. Interview with 190 patients with metastatic
patients
• Correctly knew cancer had spread: 55%
• Education: 1– 8 grade: 47%
9 -12 grade: 56%
13+: 68%
• Correctly knew where: 48%
Eidinger. Cancer 1984 Jun 15;53(12):2736-40.

28. How much do patients understand?
Interview with 100 cancer patients
Actual Patient Thought
Curative 90% (c) 10% (p)
Palliative 33% (c) 67% (p)
MacKillop Br J Canc 1988;58:355

29. Understanding the risk with bone marrow
transplant: “What’s the risk of death by 1 Year?”
Patients and
doctors were too
optimistic about
outcome

30. Consequence of Being Overly Optimistic
those who understood their limited prognosis only 15% wanted aggressive
therapy versus 61% in those overly optimistic
Weeks JAMA 1998;279:1709

31. Making Accurate Survival Predictions like a 3-Handed
Economist
Median survival information is almost meaningless until you actually treat the
patients and see if they respond
There are three kinds of lies: lies, damned lies, and
statistics.
Benjamin Disraeli (1804 - 1881)

32. https://www.respect.projectbiglife.ca/

33. Assumptions That May Not Be True
1. Most people assume if their health is in decline that:
• trust the doctor to tell them the truth
• assume the doctor can accurately predict their future outcome
• will understand what he/she says
• they will always want to know the truth (even if it’s bad)
• with the information will make better decisions
2. Most people know what their values are
• and can predict how they will feel in the future even if things change (and
they can write this all down for future reference)
• and assume their family knows how they feel and agrees

34. Two main types of advance directives are:
designation of health care surrogate and living will.

35. Designation of Health Care Surrogate:
•Let you choose another person to make medical decisions
based on your wishes for medical treatment, if you are not
able to make your own decisions or if you choose not to
make them for yourself.
•Allows you to choose a health care decision maker who
will be able to honor your wishes. You should
select one person and designate an additional person as a
backup.

36. Living Will:
•Let you choose the kind of health care you do and do not want if you
have:
• A terminal or end-stage condition, and there is little or no chance
of meaningful recovery
• A condition of permanent and irreversible unconsciousness, such
as coma or vegetative state
• An irreversible and severe mental or physical illness that
prevents you from communicating with others, recognizing family
and friends, or caring for yourself in any way
•Goes into effect only if you are no longer able to make decisions or
communicate your wishes yourself and are in one of the three
conditions listed above.

37. By Florida law, if you do not choose a designated health care surrogate, a
proxy (decision maker) will be appointed in the following order of priority:
•Court-appointed guardian
•Spouse
•Majority of adult children (who are readily available)
•A parent
•Majority of adult siblings (who are readily available)
•A close adult relative
•A close friend who knows you well
•A licensed clinical social worker

38. Page 1

39. INSTRUCTIONS FOR MY HEALTH CARE SURROGATE
If I am unable to communicate or make my medical decisions, my health care
surrogate (HCS) will:
• Talk to my health care team and have access to my medical information
• Authorize my treatment or have treatment stopped based on my choices and
values
• Authorize transportation to another facility if needed
• Make decisions about organ/tissue donation based on my choices
• Apply for public benefits, such as Medicare/Medicaid, on my behalf
• Ensure my comfort and management of my pain
• Involve palliative care as a way to ensure my comfort
• Honor my written or oral wishes for end-of-life as designated in my living will

40. My health care surrogate’s authority only begins when my
doctor decides that I am unable to make my own health care
decisions, UNLESS I initial either or both of the following
boxes:
_________ My health care surrogate can receive my health
information immediately.
_________ My health care surrogate can make health care
decisions immediately. If I am able to make decisions and
disagree with any choices made by my health care surrogate,
MY choices will be honored.

42. Page 2

43. I understand that this living will becomes effective only when I am no longer
able to communicate, or I am not able to make my health care decisions
AND
when two physicians have determined that I have one of the following:
• A terminal or end-stage condition, and there is little or no chance of
recovery
• A condition of permanent and irreversible unconsciousness, such as coma or
vegetative state
• An irreversible and severe mental or physical illness that prevents me from
communicating with others, recognizing my family and friends, or caring for
myself in any way
LIVING WILL

45. Activating an Advance Directive in Hospital
1. The medical staff need to be aware of the existence of the
document
2. The attending physician (or two physicians) needs to review the
document and determine that the requirements have been met
(legal document, patient cannot communicate decisions and the
terminal condition exists)
3. The physician then enters a DNR order (do not resuscitate order)
into the chart (computer) and other appropriate orders (e.g.
comfort measures, discontinuing other interventions)

46. Some Resources
- Florida Statutes (Chapter 765) go to
http://www.leg.state.fl.us/Welcome/index.cfm
- BayCare section on advance directives: https://baycare.org/for-
patients/advance-directives
- National Institute on Ageing:
https://www.nia.nih.gov/health/advance-care-planning-health-
care-directives

48. Advance Care Planning: Health Care Directives
Making Your Health Care Directives
Official
A lawyer can help but is not required.
Many states have their own advance directive forms.
Your local Area Agency on Aging can help you locate the
right forms. You can find your area agency phone number
by calling the Eldercare Locator toll-free at 1-800-677-
1116 or by visiting https://eldercare.acl.gov.

49. POLST - Physician Orders for Life-Sustaining Treatment

50. Outpatient DNRO order
should be printed on
yellow paper and placed
on the refrigerator (to
keep paramedics from
attempting CPR)
something called POLST,
Physical Order for Life-
Sustaining Treatment (in
Florida it is called DNRO,
form 1896)
http://www.floridahealth.gov/licensing-and-regulation/trauma-system/_documents/dnro-faq.pdf
A Do Not Resuscitate Order (DNRO) is a
form developed by the Florida
Department of Health to identify
people who do not wish to be
resuscitated in the event of respiratory
or cardiac arrest.
A DNRO is a physician’s order to
withhold or withdraw resuscitation if a
patient goes into respiratory or cardiac
arrest.
When the DNRO is presented to an
emergency medical technician or
paramedic in a setting other than a
health care facility, the form may be
honored. Facilities may honor the form,
but they may also require their own
internal form

54. https://www.nhpco.org/
https://www.caringinfo.org/

55. https://www.caringinfo.org/

56. https://www.caringinfo.org/

57. When making health care decisions for me, my health care surrogate should
think about what action would be consistent with past conversations we have
had, my treatment preferences as expressed in Part Two (if I have filled out Part
Two), my religious and other beliefs and values, and how I have handled
medical and other important issues in the past.
If what I would decide is still unclear, then my health care surrogate should
make decisions for me that my health care surrogate believes are in my best
interest, considering the benefits, burdens, and risks of my current
circumstances and treatment options.
Florida is a ‘substituted judgement’ state, ranked
ahead of ‘best interest’

59. - willfully and voluntarily make known my desire that my dying not
be artificially prolonged under the circumstances set forth below,
and I do hereby declare that:
- If at any time I am incapacitated and
- (initial all that apply)
I have a terminal condition, or
I have an end-stage condition, or
I am in a persistent vegetative state

60. - and if my attending or treating physician and another consulting physician
have determined that there is no reasonable medical probability of my
recovery from such condition,
- I direct that life-prolonging procedures be withheld or withdrawn when
the application of such procedures would serve only to prolong artificially
the process of dying, and that I be permitted to die naturally with only the
administration of medication or the performance of any medical
procedure deemed necessary to provide me with comfort care or to
alleviate pain

61. https://empathhealth.org/

62. Palliative care, sometimes
referred to as “comfort care,” is
specialized medical care and
support for patients living with a
serious or life-limiting illness. Our
focus is to relieve pain, symptoms
and stress at any time during a
serious illness and to support
patients and families as they work
through difficult medical decisions

65. www.nia.nih.gov/
health/getting-
your-affairs-order