Transforming End of Life Care with the MOLST Program ... · MOLST: Improving Quality and Honoring Preferences for Persons with DD/ID Near the End of Life NYSARC Guardianship Training

1

Patricia Bomba, MD, MACPVice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield

Chair, MOLST Statewide Implementation Team & eMOLST Program DirectorLeader, Community-wide End-of-life/Palliative Care Initiative

Chair, National Healthcare Decisions Day New York State Coalition

MOLST: Improving Quality and Honoring Preferences for Persons with DD/ID Near the End of Life

NYSARC Guardianship Training

November 6, 2017

Patricia Bomba, MD, MACP

Lisa Volpe, Esq.

Transforming End of Life Care with the MOLST Program: Improving Quality and Honoring Preferences for

Persons with ID/DD near the End of Life

Speakers

• Patricia Bomba, MD, MACP

Vice President and Medical Director, Geriatrics

Chair, MOLST Statewide Implementation Team & eMOLST Program Director

Leader, Community-wide End-of-life/Palliative Care Initiative


[email protected]

CompassionAndSupport.org

• Lisa Volpe, Principal Attorney-in-Charge

Special Litigations and Appeals Unit

Mental Hygiene Legal Service

Second Judicial Department

[email protected]

• The speakers have nothing to disclose.

2






November 6, 2017

Objectives

• Explain the difference between traditional advance directives and actionable medical orders, like MOLST

• Identify the value in initiating advance care planning for all people with developmental disabilities (DD) 18 years of age or older who have capacity to choose a health care agent

• Discuss MOLST as a person-centered, end-of-life care transition program for seriously ill persons, including people with DD/ID, based on goals for care, effective communication, conflict resolution and shared, informed medical decision-making

• Recognize eMOLST as “best practice” in improving quality, honoring individual preferences & achieving the triple aim

Culture Change

• Thoughtful Discussions• Values, Beliefs, Goals• Shared Decision Making• Preferences Based on Goals• Care Plan Based on MOLST

State of New York Department of Health

Nonhospital Order Not to Resuscitate (DNR Order)

Person's Name:___________________________________

Date of Birth: _____/_____/_____

Do not resuscitate the person named above.

Physician's Signature ____________________

Print Name _________________________

License Number ____________________

Date _____/_____/_____

It is the responsibility of the physician to determine, at least every 90 days, whether this order continues to be appropriate, and to indicate this by a note in the person's medical chart.

The issuance of a new form is NOT required, and under the law this order should be considered valid unless it is known that it has been revoked. This order remains valid and must be followed, even if it has not been reviewed within the 90 day period.

DOH-3474 (2/92)

3






November 6, 2017

Palliative Care

Interdisciplinary care – aims to relieve suffering and improve quality of life for patients with

advanced illness and their families

– offered simultaneously with all other appropriate medical treatment from the time of diagnosis

– focuses on quality of life and provides an extra layer of support for patients and families

Three Key Pillars with Psychosocial & Spiritual Support– Advance Care Planning and Goals for Care

Step 1: Community Conversations on Compassionate Care*

Step 2: Medical Orders for Life-Sustaining Treatment (MOLST)*

– Pain and Symptom Management

– Caregiver Support

*A Project of the Community-Wide End-of-life/Palliative Care Initiative

4






November 6, 2017

IOM Report Dying in America

• Major gaps in care near end of life

• Urgent attention needed from numerous stakeholder groups

• Patient-centered, family-oriented approach to care near the end of life should be a high national priority

• Compassionate, affordable, and effective care is an achievable goal

Released September 17, 2014. Report available: www.nap.edu

Five Key Areas

• Delivery of person-centered, family-oriented care

• Clinician-patient communication and advance care planning

• Professional education and development

• Policies and payment systems

• Public education and engagement


5






November 6, 2017

Key RecommendationsPolicies and Payment Systems Actions

• Encourage states to develop and implement a Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in accordance with nationally standardized core requirements


Definitions

• National POLST Paradigm: process of communication & shared decision making results in POLST; has established endorsement requirements

• POLST: Physician Orders for Life Sustaining Treatment -different states use different names to describe the state POLST program

• NY MOLST: Medical Orders for Life-Sustaining Treatment

6






November 6, 2017

MOLST

MOST

MI-POST

TPOPP

WyoPOLST

POSTLaPOST

IPOST

DMOST

SMOST

*As of 2006National POLST Paradigm Programs

7






November 6, 2017

Standard of Care

Standard of Care

Advance DirectivesAdvance

Directives

Health Care Proxy

Health Care Proxy

Living WillLiving Will

Organ Donation

Organ Donation

Medical Orders

Medical Orders

DNRDNR

MOLSTMOLST

8






November 6, 2017

Flow of Emergency Care: Standard of Care

Flow of Emergency Care: MOLST

9






November 6, 2017

Chronic disease or functional decline

Advancing chronic illness

Multiple co-morbidities, with increasing frailty

Death

Maintain & maximize health and

independence

Healthy and

independent

Compassion, Support and Education along the Health-Illness Continuum

Advance Care Planning

© Patricia A. Bomba, MD, MACP

Advance Directives and Actionable Medical Orders

Traditional ADs

For All AdultsCommunity Conversations on

Compassionate Care (CCCC)

• New York

– Health Care Proxy

– Living Will

• Organ Donation

• State-specific forms: e.g. Durable POA for Healthcare

Actionable Medical Orders

For Those Who Are Seriously Ill or Near the End of Their Lives

Medical Orders for Life-Sustaining Treatment

(MOLST) Program

• Do Not Resuscitate (DNR) Order

• Medical Orders for Life Sustaining Treatment (MOLST)

• Physician Orders for Life Sustaining Treatment (POLST) Paradigm Programs


CaringInfo.org

CompassionAndSupport.orgPOLST.org


10






November 6, 2017

Differences Between MOLST/POLST and Advance Directives

Characteristics POLST Advance Directives

Population For the seriously ill All adults

Timeframe Current care Future care

Who completes the form Health Care Professionals Patients

Resulting form Medical Orders (POLST) Advance Directives

Health Care Agent or Surrogate role

Can engage in discussion if patient lacks capacity

Cannot complete

Portability Provider responsibility Patient/familyresponsibility

Periodic review Provider responsibility Patient/family responsibility

Bomba PA, Black J. The POLST: An improvement over traditional advance directives. Cleveland Clinic Journal of Medicine. 2012; 79(7): 457-64.

Start:

Physician / PatientConversation

Educate aboutImportance of

Advance Directives

Elicit Patient's Valuesand Preferences for

End-of-Life Care

Discuss Palliative Care Options

Including Hospice

Consider Introducing the

Palliative Care Team

Work to Overcome Barriers

Does Patient HaveAdvance Directives?

Provide Informationon Advance Directives

Reassess Periodicallyor as Needs Change

YesNo

Reinforce Need for Updated Advance

DirectivesNo

Yes

Are the

Advance Directives Up-to-Date?

Encourage Patientto Discuss Wishes

with Family

Inquire about Organ Donationand/or Autopsy

Obtain Copy of Completed

Advance Directives

Assess Appropriatenessof Designated

Health Care Agent

Motivate Completionof Advance Directives

Assess Barriersto Completing

Advance Directives

Yes

Are There Barriersto Completing

Advance Directives?

No

http://www.compassionandsupport.org/index.php/for_professionals/advanced_care_planning_-_professionals/life_expectancy_greater_than_1

Bomba, JNCCN 4(8), 2006

Advance Care Planning Clinical Pathway Life Expectancy of More than One Year

11






November 6, 2017

Start:Physician / Patient

Conversation

Educate aboutImportance of

Advance Directives

Elicit Patient's Values

and Preferences forEnd-of-Life Care

Discuss Palliative Care Options

Including Hospice

Consider Introducing the

Palliative Care Team

Work to Overcome Barriers

Does Patient HaveAdvance Directives?

Provide Informationon Advance Directives

Reassess Periodicallyor as Needs Change

Are There Barriers

to Completing Advance Directives?

YesNo

Reinforce Need for Updated Advance

Directives

Yes

No

No

Yes

Are the Advance Directives

Up-to-Date?

Encourage Patientto Discuss Wishes

with Family

Obtain Copy of Completed

Advance Directives

Assess Appropriatenessof Designated

Health Care Agent

Complete

MOLST Form

Motivate Completionof Advance Directives

Assess Barriersto Completing

Advance Directives

Inquire about Organ Donationand/or Autopsy

Advance Care Planning Clinical Pathway Life Expectancy of Less than One Year

Complete MOLST Form

http://www.compassionandsupport.org/index.php/for_professionals/advanced_care_planning_-_professionals/life_expectancy_less_than_1_year

Bomba, JNCCN 4(8), 2006

Advance Care Planning:Value of Health Care Proxy for Person with DD

• Initiate advance care planning process for all people with developmental disabilities (DD) 18 years of age or older

• If the person with DD/ID has the capacity to choose who they trust to make health care decisions, do a Health Care Proxy.

• Encourage family members and staff serving those with DD to engage in advance care planning

12






November 6, 2017

Community Conversations on Compassionate Care

Five Easy Steps

1. Learn about advance directives– NYS Health Care Proxy– NYS Living Will– Advance Directives from Other States

2. Remove barriers3. Motivate yourself

– View CCCC videos

4. Complete your Health Care Proxy and Living Will– Have a conversation with your family– Choose the right Health Care Agent– Discuss what is important to you– Understand life-sustaining treatment– Share copies of your directives

5. Review and Update

A Project of the Community-Wide End-of-life/Palliative Care Initiative

Community Conversations on Compassionate Care

How to Choose a Health Care AgentApplies to Choosing a Guardian Who Makes Health Decisions

• Knows me well

• Understands what is important to me

• Will talk about sensitive wishes now

• Will listen to my wishes

• Willing to speak on my behalf

• Would act on my wishes

• Can separate his/her feelings from mine

• Will be available in the future

• Lives close by or willing to come

• Could handle responsibility

• Can manage conflict resolution

• Meets legal criteria

CCCC Advance Care Planning booklet, 2002, revised 2011

13






November 6, 2017

Advance Care Planning Screening Questions

• Does my patient have a health care proxy?

• If not, does my patient have the ability to complete a health care proxy?

• Do I have a copy of the health care proxy?

• Has the patient shared their values, beliefs and goals for their care?

• Has the person spoken with their family?

• Is my patient appropriate for MOLST?

Medical Orders for Life-Sustaining Treatment (MOLST) Program – More Than a NYSDOH Form

• Standardized clinical process

• Discussion of patient’s values & goals for care

• Shared medical decision-making between health care professionals and seriously ill patients

• Physician Accountability for medical orders

• Documentation of discussion

• Result: portable medical orders

– reflect the patient’s preference for life-sustaining treatment they wish to receive and/or avoid

– common community-wide form

– ONLY form EMS can follow DNR, DNI and Do Not Hospitalize

https://www.health.ny.gov/professionals/patients/patient_rights/molst/docs/general_instructions_and_glossary.pdf

14






November 6, 2017

MOLST: Who Should Have One?

• Generally for patients with serious health conditions

• Wants to avoid or receive any or all life-sustaining treatment

• Resides in a long-term care facility or requires long-term care services

• Might die within the next year

8-Step MOLST Protocol

1. Prepare for discussion• Understand patient’s health status, prognosis & ability to consent• Retrieve completed Advance Directives• Determine decision-maker and NYSPHL legal requirements, based on who

makes decision and setting

2. Determine what the patient and family know• re: condition, prognosis

3. Explore goals, hopes and expectations4. Suggest realistic goals 5. Respond empathetically6. Use MOLST to guide choices and finalize patient wishes

• Shared, informed medical decision-making• Conflict resolution

7. Complete and sign MOLST– Follow NYSPHL and document conversation

8. Review and revise periodically

Developed for NYS MOLST, Bomba, 2005; revised 2011

Bomba PA, Vermilyea D. JNCCN 2006;4(8):819-29; Bomba PA, Orem K. Ann Palliat Med 2015;4(1):10-21.

15






November 6, 2017

MOLST Instructions and ChecklistsEthical Framework/Legal Requirements

Checklist #1 - Adult patients with medical decision-making capacity (any setting)

Checklist #2 - Adult patients without medical decision-making capacity who have a health care proxy (any setting)

Checklist #3 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy, and decision-maker is a Public Health Law Surrogate (surrogate selected from the surrogate list)

Checklist #4 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy or a Public Health Law Surrogate

Checklist #5 - Adult patients without medical decision-making capacity who do not have a health care proxy, and the MOLST form is being completed in the community.

Checklist for Minor Patients - (any setting)

Checklist for Developmentally Disabled who lack capacity – (any setting) musttravel with the patient’s MOLST

http://www.nyhealth.gov/professionals/patients/patient_rights/molst/

Care Plan to Support MOLST

16






November 6, 2017

State of New York Department of Health

Nonhospital Order Not to Resuscitate (DNR Order)

Person's Name:___________________________________

Date of Birth: _____/_____/_____

Do not resuscitate the person named above.

Physician's Signature ____________________

Print Name _________________________

License Number ____________________

Date _____/_____/_____

It is the responsibility of the physician to determine, at least every 90 days, whether this order continues to be appropriate, and to indicate this by a note in the person's medical chart.

The issuance of a new form is NOT required, and under the law this order should be considered valid unless it is known that it has been revoked. This order remains valid and must be followed, even if it has not been reviewed within the 90 day period.

DOH-3474 (2/92)

Patients Have Right to Make EOL Decisions MOLST vs. Nonhospital DNR Form

MOLST Legislation/RegulationNYSDOH and OPWDD

• 2001-2003: MOLST form creation in Rochester

• 2004: MOLST use began in Rochester, spread to Syracuse

• 2005: NYSDOH approved MOLST for use in all health care facilities

• 2008: MOLST signed into NYPHL. NYSDOH approved MOLST for statewide use in all settings, including the community*

• 2009: HEAL 5 grant to RRHIO includes eMOLST

• 2010: MOLST became a NYSDOH form; FHCDA passed

• 2011: OPWDD approved use of MOLST in the community 1/21/11; OPWDD Checklist must be completed & accompany the MOLST

• 2011: NYeMOLSTregistry.com complies with FHCDA/§1750-b

• 2015: IPRO awarded CMS Special Innovations Project on eMOLST

• 2016: eMOLST registry bill introduced (A Morelle & S Funke)*MOLST is the ONLY form approved by NYSDOH for both DNR & DNI orders and MUST be followed..

17






November 6, 2017

NYSPHL Medical Decision Making Persons with DD/ID

• 1969 – 17A Guardian

• 2003 – Surrogate’s Court Procedure Act (SCPA) § 1750-b – Allows a guardian of a person with DD to make end-of-life (eol) health

care decisions

• 2005 – SCPA § 1750-b –Person with DD with capacity can make EOL decisions

• 2007 – Expanded authority of guardians to include involved family members

• 2010 – FHCDA – surrogate decision-making follows § 1750-b

• January 21, 2011 – OPWDD approved use of DOH MOLST for those served in the OPWDD system – MUST use the OPWDD MOLST Legal Requirements Checklist & attach

– Special procedures (SCPA § 1750-b) must be followed before MOLST is signed

MOLST Use in Persons with Developmental Disabilities Who Lack Capacity

• All seriously ill persons with developmental disabilities deserve and have a right to receive palliative care

• All seriously ill persons with developmental disabilities are NOTappropriate for MOLST

• Consider MOLST when:– 1750-b surrogate requests life-sustaining treatment be withdrawn or

withheld– Person with DD resides in a nursing home– Person with DD might die within the next year.

• OPWDD approved use of the MOLST (Memo January 21, 2011)

• Encourage completion of health care proxies

http://www.justicecenter.ny.gov/sites/default/files/documents/SDMC-OPWDD-Memo-on-Medical-Orders-for-Life-Sustaining-Treatment.pdf

18






November 6, 2017

MOLST Screening Questions forPersons with Developmental Disabilities

• Does the person with DD, their health care agent or the appropriate 1750-b Surrogate express a desire that the person with DD avoid or receive any or all life-sustaining treatment?

• Does the person with DD live in a nursing home or receive long term care services at home or in a group home?

• Would you be surprised if the person with DD dies in the next year?

• Does this person with DD have one or more advanced chronic condition (rapidly progressive dementia, end-stage COPD or CHF) or a serious new illness with a poor prognosis (metastatic pancreatic cancer)?

• Does this person with DD have decreased function, frailty, progressive weight loss, >= 2 unplanned admissions in last 12 months, have inadequate social supports, or need more help at home?

MOLST Use in Persons with Developmental Disabilities Who Lack Capacity

• A positive response to one or more of the MOLST Screening Questions is a clinical quality trigger that the person with developmental disabilities is appropriate for a thoughtful MOLST discussion.

19






November 6, 2017










Preparing for MOLST Discussion:Things to Consider

• Allow sufficient time. May need multiple sessions.

• Be “present” and be an active listener.

• Avoid language with unintended consequences.

• Assess how much the person with DD, HCA or 1750-b Surrogate wants to know. (Everything? Nothing?)

• Identify who else should know.

• Recognize what you need to know re: person with DD, family

• Counsel person with DD/HCA/1750-b Surrogate to bring family, friends, caregiver to discussion.

• Review conversation with family, friends, caregiver not engaged in the discussion (with permission.)

20






November 6, 2017

Questions to Help an Individual, HCA or SCPA 1750-b Surrogate Prepare for a MOLST Discussion

• What do you understand about your current health condition?

• What do you expect for the future?

• What makes life worth living?

• What is important to you?

• What matters most to you?

• How do you define quality of life?

• Would you trade quality of life for more time?

• Would you trade time for quality of life?

Assess Health Status: Clinical Frailty Scale

21






November 6, 2017

Estimate and Communicate Prognosis

• Physicians markedly over-estimate prognosis

• Accurate information helps patient / family cope and plan

• Offer a range for average life expectancy

– days to weeks

– weeks to 3 months

– 3 – 6 months (PCIA, PCAA, Hospice*)

– 6 months to 1 year (MOLST**)

– > 1year (MOLST: e.g. persons of advanced age may have explicit wishes.)

* Would it surprise you if this person died in the next 6 months?

** Would it surprise you if this person died in the next year?

MOLST Use in Persons with Developmental Disabilities and Capacity

• Persons with DD who have capacity make their own decisions or can defer to their HCA

• Persons with DD who lack capacity but have a health care agent (HCA) follow NYSPHL Health Care Proxy law

• Persons with DD who lack capacity but do not have a health care proxy– Physician must follow the §1750-b process BEFORE the MOLST is

completed– OPWDD Checklist: must be attached to MOLST form and must travel

with person with DD

22






November 6, 2017

MOLST Instructions and ChecklistsEthical Framework/Legal Requirements

Checklist #1 - Adult patients with medical decision-making capacity (any setting)

Checklist #2 - Adult patients without medical decision-making capacity who have a health care proxy (any setting)

Checklist #3 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy, and decision-maker is a Public Health Law Surrogate (surrogate selected from the surrogate list)

Checklist #4 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy or a Public Health Law Surrogate

Checklist #5 - Adult patients without medical decision-making capacity who do not have a health care proxy, and the MOLST form is being completed in the community.

Checklist for Minor Patients - (any setting)

Checklist for Developmentally Disabled who lack capacity – (any setting) musttravel with the patient’s MOLST


MOLST Use in Persons with Developmental Disabilities Who Lack Capacity: §1750-b process

1. Identify appropriate 1750-b Surrogate

23






November 6, 2017

Surrogate’s Court Procedure Act § 1750-b Surrogate List, in Order of Highest Priority

• 17-A guardian

• actively involved spouse

• actively involved parent

• actively involved adult child

• actively involved adult sibling

• actively involved family member

• Willowbrook CAB (full representation)

• Surrogate Decision Making Committee (MHL Article 80)


2. MOLST discussion or a series of conversations between 1750-b surrogate and treating physician regarding goals for care possible and treatment options

– Following discussions, 1750-b surrogate makes a decision to WH or WD LST

– Decision can be either orally or in writing

24






November 6, 2017

Communication Pearls

Reducing Non-beneficial Treatment

Healthcare Professional Communication Barriers

25






November 6, 2017

Identify and Remove Barriers to the Conversation

• Are you uncomfortable discussing death?

• Do you believe that “accepting mortality” is “giving up hope”?

• Are you afraid that a discussion about death will “make it happen”?

• Are you unwilling and/or unsure how to broach the topic?

• Do you understand the benefits of advance directives and advance care planning?

• Are you able to find reliable resources related to advance directives and advance care planning?

• Have you completed advance directives and shared your wishes with your family, your physician and trusted individuals?

Effective Communication Skills

• Express yourself clearly

• Ask open-ended questions

• Actively listen

• Reflect: paraphrase the message and communicate understanding back

• Resolve conflicts

• Avoid language with unintended consequences

• Listen through the ears of the person/family

• Act within scope of practice

26






November 6, 2017

MOLST Discussion Identify core patient values and beliefs

• Ask the person with DD/HCA or 1750-b Surrogate: – "What makes life worth living for the person with DD?" – "What really matters to the person with DD?"

• Examples of responses:– Participation in meaningful relationships– Not to be a burden to loved ones– Avoidance of severe discomfort – Relief of suffering– Improvement or maintenance of quality of life– Maintenance of personhood– Achieve a good death– Support for families and loved ones

http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

MOLST Discussion Patient Core Values and Goals for Care

• The degree to which the patient is meeting their core values generally determines their goal for care

– Goals guide the patient's choice of treatments.

• Broad categories of goals for care include:

– Longevity: “Do what is necessary to keep me alive.”

– Functional preservation: “Being independent is most important to me. I want to do as much as I can for myself as long as I can.”

– Comfort care: “I am currently not meeting my core values and have a poor quality of life. Focus solely on my comfort. Longevity at this point may increase my suffering.”

http://www.compassionandsupport.org/index.php/for_professionals/molst/molst_discussion

27






November 6, 2017

Align Language with Person-centered Goals for Care

• Longevity: We want to ensure you receive the kind of treatment you want and needs in order to attend your brother’s wedding

• Functional Preservation: We’ll do everything we can to help you stay in the group home

• Comfort Care: Your daughter’s comfort will be our top priority

Managing Unrealistic Expectations:Clarify Possibilities. Negotiate Goals.

• What do you understand about your son’s condition?

• What do you hope we can accomplish with our medical care?

• I wish for that too….

• Unfortunately, no medicine, surgery or all the love you have for him…

28






November 6, 2017

Listen through the Patient/ Family Ears

• He’s “stable.” – Patient on pressors,

vent, dialysis, no changes

• Do you want us to do CPR?

• If his breathing stops, do you want us to use a ventilator?

• Do you want us to “trach” him?

• He is getting better.

• She has a chance of surviving if we do CPR

• He has a chance of surviving, coming off the ventilator and returning home

Avoid Language with Unintended Consequences

• Do you want us to do “everything”?

• Will you agree to discontinue care?

• It’s time we talk about pulling back.

• I think we should stop aggressive/ heroic therapy.

• We have tried these treatments for several days while giving around the clock, expert care. Unfortunately, he is too sick to get better.

• We will change goals for care to respect her wishes.

• We will intensify care; his comfort and dignity are our highest priorities.

• Let’s discontinue treatments that are

not helping.

29






November 6, 2017

Communication PearlsClarify Hopes and Fears of Decision-MakerConsider the Person with DD

• What does your loved one’s illness mean to you? To your loved one?

• What do you hope we can accomplish with our medical care?

• What are your greatest hopes about your loved one’s health?

• What are your greatest fears?

• How can I help you best today?

• How can I help you and your family cope?


3. Capacity Determination confirms person with DD lacks ability to make decision

– Either attending physician or concurring physician or licensed psychologist must meet 1 of 3 criteria:

(a) be employed by a DDSO

(b) have been employed for at least 2 years in a facility or program operated, licensed or authorized by OPWDD

(c) have been approved by the commissioner of OPWDD:

» possessing specialized training or

» have 3 years experience in providing services to persons with DD

30






November 6, 2017

Assess Ability to ConsentMedical Decision-Making Capacity• Capacity is the ability to:

– take in information, – understand its meaning and – make an informed decision using the information

• Capacity allows us to function independently

• Capacity is task-specific

• Capacity to choose health care agent vs ability to make medical decisions, based on the complexity of decisions– simple health care decisions– request for palliation (relief of pain and suffering)– complicated decisions regarding DNR and life-sustaining treatment



4. Determination of Necessary Medical Criteria– The physician must determine the person with DD has one of the

following medical conditions and briefly describe the condition:

• a terminal condition; or

• permanent unconsciousness; or

• a medical condition other than DD which requires life-sustaining treatment, is irreversible and which will continue indefinitely.

AND

– The physician must determine and briefly describe how the LST would impose an extraordinary burden on the person with DD in light of:

• the person’s medical condition other than DD

• the expected outcome of the life-sustaining treatment, notwithstanding the person’s DD

31






November 6, 2017


4. Determination of Necessary Medical Criteria (additional requirements for WH/WD artificial nutrition or hydration)

⁻ If the 1750-b surrogate has requested that artificially provided nutrition or hydration be withdrawn or withheld, one of the following additional factors must also be met:

• there is no reasonable hope of maintaining life (explain:_________); or

• the artificially provided nutrition or hydration poses an extraordinary burden (explain: __________)

DOH-5003 MOLST FormCommunity-wide Medical Order Form

• Resuscitation instructions when the patient has no pulse and/or is not breathing (CPR or DNR)

• Instructions for intubation and mechanical ventilation when the patient has a pulse and the patient is breathing (DNI/trial/long-term)

• Treatment guidelines

• Future hospitalization/transfer

• Artificially administered fluids and nutrition

• Antibiotics

• Other instructions re: time-limited trial and other treatments (e.g. dialysis, transfusions, etc.)

32






November 6, 2017

DNR vs. DNI vs. DNT

• DNR Order: Do Not Attempt Resuscitation (Allow Natural Death) – Cardiac or pulmonary arrest

• DNI order: Do Not Intubate– Cardiac or pulmonary insufficiency– Treatments are available for symptoms of shortness of breath, such as

oxygen and morphine.

• DNR does NOT mean DNI and does NOT mean DNT (Do Not Treat) – Care is never futile. – Certain treatments, under specific circumstances, may be inappropriate,

ineffective and futile.

Shared, Informed Medical Decision Making

• Will treatment make a difference?

• Do burdens of treatment outweigh benefits?

• Is there hope of recovery?

– If so, what will life be like afterward?

• What does the patient value?

– What is the goal of care?

33






November 6, 2017

Withdrawing Treatments That Are No Longer Beneficial

• Care is never futile.

• Certain treatments, under specific circumstances, may be inappropriate and futile.

• It is legally and ethically appropriate to discontinue medical treatments that are no longer beneficial.

• It is the underlying disease, not the act of withdrawing treatment, which causes death.

Ethical Legal Approach to Withholding vs. Withdrawing Treatment

• The distinction often is made between not starting treatment and stopping treatment.

• However, no legal or ethical difference exists between withholding and withdrawing a medical treatment in accordance with a patient’s wishes.

• Some cultures may view a difference.

• If such a distinction existed in the clinical setting, a patient might refuse treatment that could be beneficial out of fear that once started it could not be stopped. (Basis for a trial of LST)

34






November 6, 2017

A Practical Approach to Discussing

CPR and Feeding Tubes:

Conversations Based on Evidence

Cardiopulmonary Resuscitation

• The purpose of cardiopulmonary resuscitation is the prevention of sudden, unexpected death.

• Cardiopulmonary resuscitation is not indicated in . . .cases of terminal irreversible illness where death is expected or where prolonged cardiac arrest dictates the futility of resuscitation efforts.

JAMA1974; 227(7) Standards for CPR and ECC

35






November 6, 2017

ACLS Provider Manual, American Heart Association, 2001


• For many people the last beat of their heart should be the last beat of their heart.

• These people simply have reached the end of their life. A disease process reaches the end of its clinical course and a human life stops.


• In these circumstances resuscitation is unwanted, unneeded and impossible. If started, resuscitative efforts for those people are inappropriate, futile and undignified.

• They are demeaning to both the patient and rescuers.


36






November 6, 2017


• Good ACLS requires careful thought about when to stop resuscitative efforts and- even more important- when not to start.


CPR Good Outcomes: In-hospital

• Improved survival rates with good functional recovery

– duration of CPR shorter than 5 minutes

– CPR in the ICU

Mayo Clin Proc 2004; 79(11):1391-1395

37






November 6, 2017

Patient Treatment Preferences Based on Public Perceptions

• 67% of resuscitations are successful on TV

• Educating patients

– 371 patients, age >60yrs

– 41% wanted CPR

– after learning the probability of survival only 22% wanted CPR

NEJM 1996; 334:1578-1582NEJM 1994; 330:545-549

Acad Emer Med 2000; 7(1):48-53

MD-Patient DNR Discussions

• In conversations with patients, physicians speak 75% of the time and use medical jargon

• After discussions

– 66% did not know that many patients need mechanical ventilation after resuscitation

– 37% thought ventilated patients could talk

– 20% thought ventilators were O2 tanks

JGIM 1995; 10:436-442JGIM 1998; 13:447-454

38






November 6, 2017

CPR Poor Outcomes: All sites

• Unwitnessed Arrest

• Asystole

• Electrical-Mechanical Dissociation

• >15 minutes resuscitation

• Metastatic Cancer

• Multiple Chronic Diseases

• Sepsis

• Seriously ill persons appropriate for MOLST

Community-wide Clinical Guidelines on Percutaneous Endoscopic Gastrostomy (PEGs)/Tube Feeding

• Developed in 2004; reviewed every 2 years; last review 2017

• Rochester Community data– rising numbers of PEGs

– goals for care discussion not consistently done

– reevaluation did not occur

• Goal for initiative– ensure shared informed medical decision-making

– ensure patient goals for care guide choice of interventions

– support the MOLST program

Percutaneous Endoscopic Gastrostomy PEGs Workgroup

39






November 6, 2017

Guidelines for Long Term Feeding Tube Feeding Placement

Approach to an Adult Unable to Maintain Nutrition

• Complete global assessment

• Identify potentially reversible causes

• If no response, initiate family discussion – health status, prognosis, patient values, beliefs, goals of care

• Decreased nutrition: marker for progressive illness– artificial feeding: review disease specific EBM; see grid

• Decision to initiate tube feeding – align with specific patient goals

• Periodic reassessment is critical– Benefits/failures likely to occur in 3 – 6 months

– focus on the achievement of specific goals of therapy identified with initial PEG placement

Guidelines for Long Term Feeding Tube Placement, 2004; latest review 2015

Guidelines for Long Term Feeding Tube Feeding Placement

Benefits and Burdens

• Vary depending upon the individual’s current problems and/or disease state and prior health status.

• Assess benefits and burdens

– enabling an individual to live longer

– have an improved quality of life and/or functional status

– reverse the disease process or enable potentially curative therapy to occur


40






November 6, 2017

Guidelines for Long Term Feeding Tube Placement

Patients with Advanced Dementia

• Don’t recommend percutaneous feeding tubes in patients with advanced dementia

• Instead, offer oral assisted feeding

• #1 among top 5 recommendations

– AGS

– AMDA

– AAHPM

Choosing Wisely Campaign, 2013

41






November 6, 2017

Avoid Feeding Tubes in Patients with Advanced Dementia

• Feeding tube use DOES NOT

– result in improved survival

– prevent aspiration pneumonia

– improve healing of pressure ulcers

• Feeding tube use DOES

– correlate with pressure ulcer development

– increase use of physical and pharmacological restraints

– cause patient distress about the tube itself

Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA. 1999;282(14):1365-1370.


Artificial Hydration and Nutrition Patient/Family Discussion

• Focus on the underlying disease process as cause of decline and loss of appetite

• Emphasize active nature of providing comfort care

• Recognize concerns about “starvation”, inadequate nutrition or hydration and potentially hastening death that many individuals deal with in facing this decision and address these issues

• Clarify that withholding or withdrawing artificial nutrition and hydration is NOT the same as denying food and drink


42






November 6, 2017


5. Notifications and Documentation

– Accountability

• Attending physician

– Timing

• at least 48 hours prior to implementing decision to WDLST

• at earliest possible time prior to a decision to WH LST


5. Notifications

– If person is in a group home

• Attending physician must notify:

– Facility Director

– Mental Hygiene Legal Services (MHLS)

• Step #5 on the OPWDD Checklist as "if the person is in or was transferred from an OPWDD residential facility“

– If person is at home, receiving OPWDD services

• Attending physician must notify:

– Director of the local DDSO

• Step #5 on the OPWDD Checklist as "if the person is not in and was not transferred from an OPWDD residential facility”

43






November 6, 2017


6. Certification by Attending Physician

– “I certify that the 1750-b process has been complied with, the appropriate parties have been notified and no objection to the surrogate’s decision remains unresolved.”


44






November 6, 2017


• MOLST guides treatment in an emergency

• All patients are treated with dignity, respect and comfort measures

• Person-centered care plan based on patient choice– Do not send to the hospital unless pain or severe symptoms cannot be

otherwise controlled

– Treatments available for pain and symptoms

• Effective pain management

• Shortness of breath: oxygen and morphine

• Nausea, vomiting, etc.

– No feeding tube or No IV fluids

• Offer food/fluids as tolerated using careful hand feeding

• Family, caregiver and staff education

Key RecommendationsPolicies and Payment Systems Actions

• Require the use of interoperable electronic health records that incorporate advance care planning to improve communication of individuals’ wishes across time, settings, and providers, documenting:

– the designation of a surrogate/decision maker

– patient values and beliefs and goals for care

– the presence of an advance directive

– the presence of medical orders for life-sustaining treatment for appropriate populations

NY’s eMOLST highlighted in IOM Report


45






November 6, 2017

New York eMOLST

• An electronic system that guides clinicians and patients through a thoughtful discussion and MOLST process

• Integrates 8-Step MOLST Protocol & NYSDOH Checklists• Allows a team approach within scope of practice• Creates MOLST & correct MOLST Chart Documentation Forms• eMOLST ensures MOLST quality, accuracy, accessibility• Allows the clinician to print a copy of the eMOLST form on

bright pink paper for the patient• Workflow remains the same; EMS needs a copy of eMOLST• Serves as the registry of NY eMOLST forms to make sure a copy

of medical orders & discussion are available in an emergency.• eMOLST is free, available statewide and accessed at

NYSeMOLSTregistry.com.










Bomba PA, Vermilyea D. JNCCN 2006;4(8):819-29; Bomba PA, Orem K. Ann Palliat Med 2015;4(1):10-21.

46






November 6, 2017

AFTER FHCDA: MOLST Instructions and Checklists

Ethical Framework/Legal Requirements

• Checklist #1 - Adult patients with medical decision-making capacity (any setting)

• Checklist #2 - Adult patients without medical decision-making capacity who have a health care proxy (any setting)

• Checklist #3 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy, and decision-maker is a Public Health Law Surrogate (surrogate selected from the surrogate list)

• Checklist #4 - Adult hospital or nursing home patients without medical decision-making capacity who do not have a health care proxy or a Public Health Law Surrogate

• Checklist #5 - Adult patients without medical decision-making capacity who do not have a health care proxy, and the MOLST form is being completed in the community.

• Checklist for Minor Patients - (any setting)

• Checklist for Developmentally Disabled who lack capacity – (any setting) must travel with the patient’s MOLST


eMOLST Produces MOLST and MOLST Chart Documentation Form

Align with NYSDOH Checklists

47






November 6, 2017

eMOLST and OPWDD MOLST Legal Requirements Checklist for Individuals with DD

Research: Site of Death vs. Treatment Requested

• Death records: 58,000 people who died of natural causes in 2010 and 2011 in OR

• Nearly 31% of people who died: POLST forms entered in OR's POLST Registry

• Compared location of death with treatment requested

– 6.4% of people with POLST forms who selected "comfort measures only" died in hospital

– 34.2% of people without POLST forms in the registry died in the hospital

Fromme, Erik et al (2014). JAGS, on-line June 9, 2014

48






November 6, 2017

Why eMOLST: Aligns with New Value-Based, Accountable Care Models

• Improves quality: discussion of personal-centered values, beliefs and goals for care drives choice of life-sustaining treatment

• Honors individual preferences: provides MOLST orders and copy of discussion across care transitions

• Reduces unnecessary and unwanted hospitalizations, ED use, service utilization and expense

eMOLST Case, CNY, 2014: What Can Happen When MOLST is Unavailable but in eMOLST

• Elderly gentleman with multiple medical problems, including COPD with recurrent acute respiratory exacerbations & recurrent hospitalizations

• Has Health Care Proxy, MOLST form

• Presents to ER with acute respiratory insufficiency; MOLST form left on refrigerator

• Patient evaluated & treated

• Plan: intubation & mechanical ventilation and transfer to SUNY Upstate

• MD in ER signed into eMOLST – goals for care: functionality, remain at home; MOLST: DNR & DNI

• Patient admitted, treated conservatively, discharged home

49






November 6, 2017

Why eMOLST: NYSDOH Attorney, Physician FeedbackQuality, Patient Safety and Accessibility

CompassionAndSupport YouTube Channel

eMOLST Registry Bill: A2316/S966

• Add the term MOLST to NYSPHL

• Establish the eMOLST registry in statute

• Mandatory submission to the registry to accelerate the digital transformation

• Letters of support

50






November 6, 2017

Effective Implementation Requires a Multidimensional Approach

1. Culture change*

2. Professional training of physicians, clinicians & other professionals*

3. Public advance care planning education, engagement & empowerment*

4. Thoughtful discussions*

5. Shared, informed medical decision-making*

6. Care planning that supports MOLST

7. System implementation, policies and procedures, workflow

8. Dedicated system and physician champion

9. Leverage existing payment stream (CPT codes 99497 and 99498) to encourage upstream shared, informed, decision making*

10. Standardized interoperable online completion and retrieval system available in all care settings to ensure accuracy and accessibility (NYSeMOLSTregistry.com)*

*Recommended by the 2014 IOM Dying in America report

100

51






November 6, 2017

CompassionAndSupport.orgReliable Information for Patients, Families & Professionals • Advance Care Planning • MOLST for Patients/Families• MOLST Training Center for Professionals• Life-Sustaining Treatment• Guidelines for Long Term Feeding Tube Placement• Pain Management for Patients/Families • Pain Management for Professionals• Hospice & Palliative Care• Death & Dying• Faith Based Perspectives Patients and Families• Pediatrics• En Espanol• Care Transitions Intervention• Compassion And Support YouTube Channel

Community Conversations on Compassionate CareAdvance Care Planning Tools & Resources

• Advance Care Planning Booklet (English, Spanish)

• Advance Care Planning Brochure, Poster and Table Topper

• Advance Care Planning Facilitator Training

• Advance Care Planning Clinical Pathways

• Behavioral Readiness “tools”

• Community Conversations on Compassionate Care (CCCC) workshop; standardized PowerPoint

• Community Conversations on Compassionate Care (CCCC) videos

• Advance Care Planning Public Service Announcements videos

• CCCC video on-line with Five Easy Steps

• Compassion And Support YouTube Channel

• On-line resources at CompassionAndSupport.org

52






November 6, 2017

MOLST Tools & Resources

• MOLST 8-Step Protocol

• NYSDOH Legal Requirements Checklists & OPWDD Checklist

• MOLST Chart Documentation Forms

• NYSDOH MOLST General Instructions & Glossary

• MOLST FAQs

• MOLST Patient & Family Brochure

• Sample Facility Policies & Procedures

• Sample Facility Implementation & Education Work Plans

• MOLST & FHCDA webinar series (on-line)

• MOLST Train-the-Trainer Sessions

• MOLST Conferences

• Compassion And Support YouTube Channel: MOLST Videos

• MOLST for Professionals; MOLST for Patients & Families

• MOLST Training Center: CompassionAndSupport.org – New York State repository for MOLST resources


Key MOLST Resources

• MOLST Training Center and MOLST pages on CompassionAndSupport.org– https://www.compassionandsupport.org/index.php/for_professionals/molst_training_center

• MOLST Video Revised 2015! (28:14) https://youtu.be/ClTAG19RX8w

– "Writing Your Final Chapter: Know Your Choices. Share Your Wishes“

– Original release 2007; revised to comply with FHCDA

• CompassionAndSupport YouTube Channel ACP and MOLST playlists– http://www.youtube.com/user/CompassionAndSupport?feature=mhee

• Thoughtful MOLST Discussions in Hospital & Hospicehttps://youtu.be/gKseJkuuFuk?list=PLCSvowXDKV5LfzLqQGqdQ-n3ocGn8LWZ2

• Thoughtful MOLST Discussions in Nursing Homehttps://youtu.be/LYAT43hXxwg?list=PLCSvowXDKV5LfzLqQGqdQ-n3ocGn8LWZ2

• Bomba, P.A., & Karmel, J. B. (2015). Medical, ethical and legal obligations to honor individual preferences near the end of life. Health Law Journal, 20(2), 28-33.

• Link to a MLMIC Dateline Special Edition, includes NYSBA Health Law Journal article co-authored by J Karmel & P Bomba; 3 additional cases are included: here.

• "New CPT Codes for Advance Care Planning and MOLST Discussions" https://dl.dropboxusercontent.com/u/69456301/ACP.MOLSTdiscussionsNewCodes.071816.ppt?dl=1

53






November 6, 2017

Additional eMOLST Resources

• If you would like your physician office, hospital, nursing home, palliative care/hospice program to implement and have your patients’ MOLST forms included in NY’s eMOLST registry, visit NYSeMOLSTregistry.com.

• ContactseMOLST Program Director: [email protected] Administrator: [email protected]

• eMOLST toolsNYSeMOLSTregistry.com

• eMOLST Overview (5:37) https://youtu.be/MjL8Qz944IU?list=PLCSvowXDKV5IEJX39GHvbs8ekkfNXec55

• NYSDOH Attorney's Perspective on eMOLST (1:38) https://youtu.be/r_JUkyPY6tc?list=PLCSvowXDKV5IEJX39GHvbs8ekkfNXec55

• Advantages of eMOLST: A Nursing Home Physician's Perspective (7:24) https://youtu.be/jn47FlYsxss?list=PLCSvowXDKV5IEJX39GHvbs8ekkfNXec55

• eMOLST webinar sponsored by IPRO and includes Q & A (2:00)https://qualitynet.webex.com/qualitynet/ldr.php?RCID=f2c519e24280cba7863dab9ad1bf68ea

For up-to-date information, subscribe to NY MOLST Update.Contact [email protected].

54






November 6, 2017

Thank You

• Thank you for attending and ensuring proper implementation of Advance Care Planning and MOLST for Individuals with DD/ID .

• Email questions:

Patricia Bomba, MD, MACP [email protected]

Lisa Volpe, Esq. [email protected]

Documents

Transforming End of Life Care with the MOLST Program ... · MOLST: Improving Quality and Honoring Preferences for Persons with DD/ID Near the End of Life NYSARC Guardianship Training