Advance directives, advance care planning, and POLST Alexander R Nesbitt MD Susquehanna Hospice and Palliative Care This is presented in webinar format. To listen and view go to:

Goals Understand history, benefits and limitations of traditional advance directives Understand the process of advance care planning Understand the role of the POLST form in advance care planning 2

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Documents Living will  Originated with legal sentinel cases surrounding right to decline rx  Focus on the document  Legal-most done in attorneys offices  Focus on the individual autonomy, the patient and their rights  Focus on terminally ill, permanent state of unconsciousness 4

Living will-problems Despite more than four decades and over 100 million dollars promoting and marketing living will concept, and… Despite endorsement of all major medical, legal, senior citizen, and other organizations, and …. Despite PSDA 1990…. 5

Most Americans do NOT have completed living wills or other formal written advance directives. ~ 30 % of Americans (more for upper middle class white americans, less for non white americans). But that is not the worst problem…. 6

Most Americans who HAVE done an advance directive do not have it available in the hospital when decisions are being made (less than 20%....maybe MUCH less). But that is not the worst problem….. 7

Of those who HAVE done an advance directive, and who HAVE it available in the hospital when decisions need to be made, VERY OFTEN it does NOT provide the answer to “ what should we do for Fred?” 8

Fred’s advance directive “If you have an end-stage medical condition or are permanently unconscious and there is no realistic hope of significant recovery…”  I do not want tube feedings given Is Fred in an end stage medical condition…permanently unconscious…have hope of significant recovery ? 9

SUPPORT study, HELP study Most (70-78%) people desire to rely on individual they trust who can hear information and make difficult decisions that reflect their values and are in their best interest, rather than bind the physicians by a specific prescription for preferred medical choices. 10

Surrogate Durable power of attorney for health care  “Health care agent”  Designated by the capable patient to speak for them when the patient is incapable of deciding/speaking for themselves.  Can make health care decisions for patient that the capable patient would make for themselves 11

Health Care agent Not necessarily spouse, oldest child, person you love the most Person who can speak and advocate for you even in emotionally difficult situation, with complex medical information and uncertainty about outcomes Person who can carry out your wishes even if difficult 12

Health Care representative Default list to identify surrogate decision maker Able to make health care decisions for incapacitated patient Limits to ability to make some decisions if patient not endstage medical condition 13

Health care representative Spouse/adult child not child of spouse Adult child Parent Adult sibling Adult grandchild Adult with knowledge of patient wishes/values 14

Importance of Agent Naming agent (deciding who you want) Documenting your choice of agent Talking to your agent about values, preferences….what kind of living would be okay, what is most important for you (not necessarily list of desired medical interventions) 15

Special population Advanced chronic disease Long term care, ALF The ‘surprise’ question…would you be surprised if this person died within the next year? Includes but NOT limited to terminally ill patients 16

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What happened ? Had agent Had advance directive Had ‘no code’ order He and his family tried to do everything right We (the medical system) got it wrong 19

To prevent this, need system to convey patient preferences that is... Accurate and applicable now, not in some future condition Actionable- you look at the form, you know what to do Accessible- there with the patient when you need it, wherever the patient is; nursing home, ER, hospital bed 20

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POLST Brightly colored pink card stock paper, easily identified in the medical record Travels with the patient when transferred from site to site (nursing home, ER, hospital) Actionable physician orders for specific medical interventions 22

Benefits of POLST Increase the likelihood of care given being concordant with patient desires Allows for ‘titration’ of care to match patient wishes; choose what interventions are desired or not desired.  77% DNR patients wanted more than minimum choice of other care  47% of ‘full code’ patients wanted less than maximum choice of other care 23

Limitations of POLST Does not name agent/HCPOA….this must be designated seperately NOT for general population Not actionable outside of hospital/nursing home without specific EMS medical command physician order (in PA at present) 24

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POLST is a piece of paper, it is NOT the main thing The DISCUSSION with the patient, the family, the surrogate IS the main thing……the document reflects this discussion. A careful, well done facilitated discussion leading to POLST completion is of primary importance. Training of those who will facilitate this conversation is ESSENTIAL part of POLST system. 26

Conclusion In trying to do advance care planning that matches what most people want, there has been a move away from a primarily legal, document driven, individualistic and rights based approach to a discussion based process that includes a discussion of values and desires with the patient, loved ones and especially their designated surrogate. 27

Two phase approach to ACP Important for ALL to name agent, document this choice, and discuss priorities and values with agent. Important for the subpopulation at highest risk of facing these decisions, those with advanced disease, especially those in skilled nursing units, to have the opportunity to have a facilitated conversation and complete a POLST document that will be honored in the health system that cares for them. 28

Who will create a system to make this possible for patients in your world? Alexander R Nesbitt MD Susquehanna Hospice and Palliative Care 29