what matters: crucial conversations through advance care
TRANSCRIPT
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What Matters:Crucial Conversations through
Advance Care Planning
Jackie Thielen, MSN, RN, APRN-NP, ACHPN
August 20, 2021
Situation
Mr. Joy is 72
• Walks daily, but recent decline in functional status• 30 lb. unintentional weight loss in last 4 months
• CHF (stage 3) and hypertension
• Car accident with a head injury, lacerations, fractured jaw, pelvis and flail chest, low blood pressure• Unconscious
• Wife is next of kin and has FAST stage 6 D Alzheimer’s • Two estranged children
• Offered Plan: Surgery, feeding tube, ventilator and ICU
• No Advance Directive
• “You never think when it starts, it will end like this.”
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Definitions
• Advance Care Planning (ACP)
Advance care planning is a process of thinking, talking, recording and sharing. It includes making decisions about personal issues and medical issues. ... This includes what treatment would be accepted, what “matters” and brings joy and quality to life, how and where the preferred care is to be delivered and preferred setting and situation for end-of life.
• Advance Directive (AD)
Advance directives generally fall into three categories: living will, power of attorney for health care (health care proxy) and provider order for life-sustaining care (POLST).
Additional ACP and AD Resources
• Any reliable statement made that includes medical decisions
• Discussions with providers that include medical decisions and recorded in medical documentation
• Verbal report of decisions over time congruent with current decision to be made
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• Durable Power of Attorney for Healthcare (POA-HC) designates an agent (surrogate)
to make health care decisions for a patient.
• Living Will provides specific information about treatments the patient would or would
not accept.
– Many different Living Will formats available, some very specific and some
general
– Physician Order for Life Sustaining Treatment (POLST- titled as IPOST in
Iowa)
– South Dakota - Medical Orders for Scope of Treatment (MOST)
– Nebraska Emergency Treatment Orders (NETO)
Advance Directive
Advance DirectivesPOLST type
• Combine a succinct living will with actionable orders.
• Provide direction in community and acute care settings.
• All ADs come into effect only in situations when there is lack of capacity.
https://nebraskaneto.org
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Notes Surrogate Decision Makers
• There are two types of Power of Attorney• Medical Power of Attorney for Health Care (POA-HC)
• Durable Power of Attorney
• If there is no POA-HC, chain of consent applies • LB 104 NE Legislature 2018
• The most recent POA-HC applies
• Guardianship is a legal, court appointed process• May include or exclude health care decisions
Importance of Advance Care Planning
• Health Care personnel (physician) discussions with the patient and family regarding Advance Care Planning• Increase likelihood of patient’s decisions being followed• Improve end-of-life care
• Increased concordance of end of life decisions with care received
• Increase patient/family satisfaction • Have greater likelihood of death in the patient’s preferred location and circumstance
• Reduce family stress
Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomized controlled trial [published ahead of print March 23, 2010]. BMJ. http://www.bmj.com/content/340/bmj.c1345.long. Accessed June 1, 2011
Meyers J, Cosby R, Et al (2018) Provider tools for advance care planning and goals of care discussions: A systematic review. Am J of Hospice & Palliative Medicine, 35(8), 1123-1132. Https://doi.org/10.1177/1049909118760303
Oczkowski, S, Chung, H. et al. Communication tools for end-of-life decision making in ambulatory care settings: A systematic review and meta-analysis. PLoS ONE, 11(4),e0150671. https://doi.org/10.1371/journal.[pone.0150671.
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Predicting Others’ Goals of Care
Are your patients well informed of pros and cons?
Care and Business Case
• Cost of health care at end of life is often very high with ICU stays, long length of stay.
• As much as 30% of Medicare spending is attributed to patients in the last year of their lives.
• Without AD may be subject to unwanted, painful and costly procedures and interventions.
• Use of AD to educate on options available has been shown to reduce use of expensive and invasive resources not desired by many.
• The result is avoidance of pain and suffering, empowering patients through to let their voices be heard even if they are not able to tell you of the decision at that moment in time, and lower cost overall.
( JAMA Forum: End-of-Life Care, Not End-of-Life Spending By Ashish K. Jha, MD, MPH on July 13, 2018: Accessed on line 7/22/21)
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Problem Statement
• POA-HC completion is not hard wired for patients
• Literature and even regulatory agencies like CMS recommend that all patients with serious illness are provided with opportunity to complete ADs.
• Baseline data indicates < 50% of palliative clinic patients have an advance care document.
• Recent Performance Improvement initiative in one Montana facility found only 17% of patients with cancer had any ADs in the EMR and 11% POLST (sample from Montana Central Tumor Registry).*
Lucas AH, Dimmer A. Palliative Integration into Ambulatory Oncology: An Advance Care Planning Quality Improvement Project. J Adv Pract Oncol, May/June 2021(12(4), 376-386.*
Should Everyone Have Advance Directives?
• POA-HC• Are there state regulations that allow end-of-life withdrawal and withholding
only when document is completed and specified?
• Is there a clear chain of consent?• Are multiple agents next in line?
• Is the next in line as surrogate able and capable of serving?• Knows the medical situation
• Understands and will honor patient’s decisions
• Is available
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Should Everyone Have Advance Directives?
• Living Will• Is there a life-limiting illness present?•Are there specific situations for which specific
decisions would be accepted or not accepted?• If you would accept all cares regardless, do you need
one?•Nebulous language may not make it clear when you
would or would not accept life-sustaining cares
ALL ADs must be considered dynamic documents!
Does Everyone Need Advance Directives?
• Everyone should be offered with healthcare input and discussion to guide
• PRIORITY for potentially life-limiting conditions
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Should Everyone Have Advance Directives?
• Considerations before completing an AD
• Keep a list of each facility with a copy of the AD
-Give each facility a copy of any updated ADs
-If you have not updated the AD with most recent decisions, it may still be followed!
• You may not know every facility with the old AD • The more facilities with copies, the higher the risk of old ones being followed.
• Know if there is a state registry for ADs and forward new documents to them (often via provider)
• CAVEAT: Always keep updated forms with you and give a copy to emergency contacts.
WHEN TO UPDATE THE Advance Directive
• Advance Directives should be reviewed and updated frequently including
• Death of someone close
• New Diagnosis
• Debility
• Divorce
• Decade of life
• Decline
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1. Patient lacks capacity
2. Fear from patients/families to discuss
3. Health Care personnel do not want to be negative or impact patients’ hope
4. Lack of skill in having the difficult discussions
5. Office visits not long enough to properly cover
6. Staff not aware of billing options for Advance Care Planning
7. Not considered a priority or expectation of providers and staff.
Variables Impacting AD Completion
0.00%
20.00%
40.00%
60.00%
80.00%
100.00%
120.00%
2018 2019 2020 Qtr 1 2020 Qtr 2 2020 Qtr 3 2020 Qtr 4 2021 Qtr 1
Outpatient-Patient has POA-HC% Palliative Outpatients with POA-HC or Valid Reason
Outpatient-Patient has POA-AC % Palliative Outpatients with POA-HC or Valid Reason
Local Community Palliative PI
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Billing for Advance Care Planning
Billable CPT Codes
• 99497 = 16-30 minutes
• 99498 = 46-60 minute total. Can use this code for every additional minutes (16-30 min)• 1123F = documentation that prior discussion occurred and no changes
• 1124F = documentation that patient opts out of discussion
0.00%
20.00%
40.00%
60.00%
80.00%
100.00%
120.00%
2020 Qtr 1 2020 Qtr 2 2020 Qtr 3 2020 Qtr 4 2021 Qtr 1
Community Hospital in Nebraska
Cost Saving Estimate
• Of the 7 studies reviewed, 6 resulted in cost savings, one with no difference.
• Wide variation in amount from $1,041- $64,827
Range of impact for 80 pts. = $83,280 – $518,616
Corinna Klingler, Jurgen in der Schmitten, George Marckamnn. Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Paliat Med;2016 May; 30(5): 423-433. Published online 2015 Aug 20. doi: 10.1177/0269216315601346
PMCID: PMC4838173
PMID: 26294218
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www.Capc.org
Overview: In South Dakota you must fill out two separate forms to have a complete Advance Directive: A Living Will called a "Living Will Declaration" and a "Healthcare Power of Attorney" (a.k.a. Health Care Proxy).
Required Information for the Living Will: You and two (2) witnesses must sign your SD Advance Directive for it to be considered valid.
Witnesses CAN NOT be:The person appointed as Power of Attorney for Health Care Your health care provider, or an employee of the health care providerNot related to you by blood, marriage, or adoptionTo the best of one's knowledge, not a creditor of the principal nor entitled to
any part of the estate under a will now existing or by operation of law
https://www.everplans.com/articles/south-dakota-advance-directive-form. Accessed 7/6/2021
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• MOST stands for Medical Orders for Scope of Treatment. • It is a medical provider's order that outlines a plan of care respecting the patient's wishes
concerning care at end of life. • MOST is not a legal document. It is a transportable medical order signed by a health care
provider for individuals with a terminal illness. • The goal of the MOST initiative is to inform and empower patients to clearly state their end-
of-life care wishes, and to authorize health care providers to carry out those wishes.
• MOST is only for patients with a terminal illness as defined by SD Law § 34-12D-1.
• MOST Form: English | Spanish
• South Dakota Senate Bill 118
https://doh.sd.gov/providers/most/
Overview: The Iowa Living Will is called a "Declaration Pertaining To Life Sustaining Procedures" and is included in an Advance Directive packet that also contains a form for naming a Health Care Proxy.
Required Information: Your signature must be Notarized OR two (2) witnesses must sign your IA Advance Directive for it to be considered valid.
Download the Iowa Advance Directive Form Here(Via The Iowa State Bar Association)
https://www.everplans.com/articles/iowa-advance-directive-form. Accessed 7/6/2021
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Overview: In Nebraska you must fill out two separate forms to have a complete Advance Directive. The first form is a Living Will Declaration and the second is a Power of Attorney for Healthcare.
Required Information for the Living Will: Your signature must be notarized OR two (2) witnesses must sign your NE Living Will for it to be considered valid.
Download the Nebraska Health Care Power Of Attorney Form Here(Via Nebraska Medical Center)
https://www.everplans.com/articles/nebraska-advance-directive-form. Accessed 7/6/2021
WHAT IS THE NEBRASKA NETO PROJECT?The Nebraska NETO Project is a grassroots initiative dedicated to making advance care planning better and easier by distributing the Nebraska Emergency Treatment Orders (NETO) form to communities across the state.
"Speak for Yourself"No one is more qualified to make your medical decisions than you. Yet, in times of emergency you may be too sick to speak, leaving your loved ones to make difficult decisions. The NETO form is a rapid, effective way to communicate your wishes to emergency services and medical providers.
https://nebraskaneto.org/ Accessed 7/6/2021
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National POLST Form
• www.polst.org
• National POLST encourages completion of POLST form during times of surge or crisis (COVID)
Having the Conversation
• S = Setting
• P = Perception
• I = Invitation and Information
• K = Knowledge
• E = Emotions
• S = Strategy & Summary
• FRANKLIN J. BERKEY, DO; JOSEPH P. WIEDEMER, MD; and NICKI D. VITHALANI, MD, Penn State Health Family and Community Medicine Residency at Mount Nittany Medical Center, State College, Pennsylvania. Am Fam Physician. 2018 Jul 15;98(2):99-104.
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Aspects of Discussion With Healthcare Personnel
• Prognosis
• Morbidity
• Patient values • Personal aspects of quality of living• Vague language of a written document (imminent, not curable, vegetative state)
• Inconsistent features of the request/decision
• Distinguishing between short term and longer term goals• The problem with a directive is that despite its detail, it does not address the most
common situations or complexities of situations
Physician perspectives and compliance with patient advance directives: the role external factors play on physician decision making. Christopher M Burkle1Email authorPaul S Mueller2Keith M Swetz2, Affiliated with
C Christopher Hook3 Mark T Keegan1BMC Medical EthicsBMC series open, inclusive and trusted201213:31DOI: 10.1186/1472-6939-13-31
https://www.health.harvard.edu/staying-healthy/living-wills-and-health-care-proxies. Adapted from Living Wills, a special health report published by Harvard Health Publications, accessed 6/22/2021.
https://nebraskaneto.org/ Accessed 7/6/2021
https://www.heart.org/en/professional/quality-improvement/get-with-the-guidelines/get-with-the-guidelines-resuscitation. Accessed 7/6/2021
Discussing Code Status in ACP
• Get With the Guidelines • For every 100 people with in-hospital arrest ,
• 39 had ROSC but died before discharge
• 43 remained dead
• 8 survived with moderate to severe disability
• 10 survived with mild to no disability
+Best odds for young without prior serious illness have approximately 27% good outcomes
+Older with multiple chronic or serious illnesses < 3%
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Go Far Calculator
• GoFar Calculator - predicts outcome post in-hospital arrest
• MELD Score – Decompensated Liver Disease
• MAGGIC Score – Congestive Heart Failure
• FAST Score – Alzheimer’s Dementia
• Palliative Performance Score – Oncology
www.gofarcalc.com/
Capacity
Q: My patient is alert and oriented to person, place, year, and even knows the president’s name. Yet, the patient’s spouse makes final decisions and signs consents.
Can you explain?
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Orientation vs. Capacity
• Orientation is not the same as capacity.
• For example, a young child (or a person of any age) may be oriented to person, place, and time, and knows the president, but still lack capacity to make high level medical decisions.
• People can memorize responses to orientation questions
• Lack of full orientation does NOT always mean lack of capacity
Components of Capacity
Understanding: The ability to grasp the fundamental meaning of information/paraphrase
Appreciation: The ability to acknowledge medical condition(s) and treatment options-know medical condition and consequences of treatment options/ask patient to describe condition, treatment and likely outcomes
Reasoning: The ability to compare information and infer consequences of choices for them/express rational process of interpreting information/ask to compare options and consequences
Expressing A Choice: The ability to state a decision and sustain over time-clearly indicate decision made and sustain over time/ask decision
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Capacity – It’s not all or none
• A patient may lack capacity to make some decisions but retain ability to make others at any given time. • For example, they may be able to choose to take a pain medication but not
have capacity to decide about a risky surgery.
• Capacity can be fluid, changing day-by-day or even hour-by hour.
• Don’t confuse disagreement with recommended and typical approaches as lack of capacity. • Unpopular choices may be the right one for that patient.
Prevalence of Incapacity in Select Populations
Disease or Patient Care Setting No. of Studies No. of Patients
% With Incapacity
Healthy elderly controls 16 1817 2.8%
Mild cognitive impairment 1 147 20%
Glioma patients 1 26 23%
Medicine inpatients 8 816 26%
Parkinsons patients 4 148 42%
Nursing home 5 152 44%
Alzheimer disease 10 1425 54%
Learning disabled 4 208 68%
JAMA July 27, 2011, vol 306(4)
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Relationship Between Cognition and Incapacity
• Strong relationship between capacity scores and cognition
• MMSE• < 20 increased likelihood of incapacity
• Scores < 16 further increased likelihood of incapacity
• Scores 20-24 had not effect on likelihood of capacity
• Scores > 24 greatly increased likelihood of capacity
Tools Available to Assess CapacityTest No. of
StudiesTime to Complete Reliability/Construct
Validity/ Criterion Validity
Availability
Aid to Capacity Evaluation (ACE)
1 10-20 min Yes Free
Hopkins Competency Assessment Tool
5 10 min Yes Free
Understanding Treatment Disclosure
1 <30 min Yes Author contact
Ability to Consent Questionnaire
1 < 30 min Partial Free from author
Assessment of Capacity of Everyday Decision Making
1 Not studied Not studies/some correction with
validity/No
Free from author
Capacity to Consent to Treatment Instrument
9 20-25 min Yes/Yes/No $200 from author
Hopemont Capacity Assessment Interview
7 20-25 min Yes/Yes/Yes Free from author
MacArthur Competency Assessment Test
7 20-25 min Yes/Yes/No $87.95 kit from Professional Resource Press
Source: JAMA July 27, 2011
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Situation
Mr. Joy is 72
• Walks daily, but recent decline in functional status• 30 lb unintentional weight loss in last 4 months
• CHF (stage 3) and hypertension
• Car accident with a head injury, lacerations, fractured jaw, pelvis and leg, low blood pressure• Unconscious
• Wife is next of kin, has dementia
• Two estranged children
• Offered Plan: Surgery, feeding tube, ventilator and ICU
• No Advance Directive
• “You never think when it starts, it will end like this.”
• As Seigan Glassing (Palliative Buddhist Chaplain at a New York hospital) walked down the sterile, white hospital corridor to the room of a patient with newly diagnosed glioblastoma, who was offered surgery and chemo, he thought of a poem written by well-known Zen master Kozan Ichikyo shortly before his death.
“Empty handed I entered
The world
Barefoot I leave it
My coming, my goings—
Two simple happenings
That got entangled.”
