MEDICAL, ETHICAL & LEGAL CONSIDERATIONS IN END OF LIFE CARE

Sheila Shea, DirectorMental Hygiene Legal Service

Julie Friedman, Managing AttorneyMental Hygiene Legal Service

George J. Giokas M.D.Palliative Care Partners

November 12, 2021

The presenters have no relevant financial relationships to disclose.The information herein is a summary of legal and medical issues and should not take the place of legal or medical advice.

1

Learning Objectives1. Understand the legal framework underlying decisions to withhold or withdraw treatment at the end of life for patients with I/DD.

2. Describe the elements of benefit, efficacy, and effectiveness as applied to decisions at end of life.

3. Identify resources that can guide clinicians through this process.

2

Key Principles1. The legal process for surrogate decision making for patients who lack capacity - serves to promote the rendition of efficacious treatment and dignity at the end of life.

2. Health care providers can promote patient autonomy by encouraging the execution of advance directives when patients have capacity.

3

Historical Context1. Historically, people with I/DD were subjected to terrible conditions in institutions (such as the Willowbrook State School), experimentation and eugenics.

2. Patients were undertreated due to bias that people with developmental disabilities had a diminished quality of life, or overtreated because of the restrictions of the common law (Matter of Storar).

4

Frequent Misconceptions1. People with I/DD always lack capacity for all spheres of decision making.

2. People with I/DD require guardians or are wards of the State.

3. When people with I/DD have guardians their guardians determine all aspects of their lives.

4. People with IDD are unfortunate patients, burdened by their life circumstances.

5

Individuals with Capacity★ Any individual with capacity can make their own

health care decisions.

★ Any individual with capacity can execute a health care

proxy if they can understand that they are delegating

to another (an agent) the authority to make health

care decision.

○ for when they lack capacity (temporarily or

permanently) to make a medical decision.

★ In writing, two witnesses. Agent cannot witness6

Health Care Proxy1. The agent’s authority does not commence until the principal is deemed incapacitated by attending physician.

2. Agent can make any health care decision that the principal could make.

3. Decisions by agent are to be made in accordance with the principal’s wishes, including religious and moral beliefs, if known. If not known, then in accordance with the principal’s best interests (PHL § 2982[2]).

7

Health Care Proxy - ANH Limitation

Agent cannot make decision to withdraw/withhold artificial nutrition and hydration unless agent is aware of principal’s preferences in that regard, or principal’s preferences can be ascertained with reasonable diligence (PHL § 2982[2]).

8

HCP - Special witnessing requirementsIndividuals residing in a facility (operated or certified by OPWDD):

1. Assessment of the principal’s capacity to execute document.2. At least one witness must not be affiliated with the residential facility.3. The other witness must be:

● a NYS licensed physician, nurse practitioner (& effective 6/17/2020, physician assistant) or clinical psychologist who:○ is employed by the DDSO for at least one year; or○ has been employed in an OPWDD facility for at least two

years; or○ has specialized training in development disabilities and has at

least two years experience treating persons with DD; or○ has at least three years of experience treating persons with

DD.9

★ If an I/DD individual who previously had capacity - executed a health care proxy -○ the agent can make decisions within the

parameters of the power given to them. ★ But what if there is no agent?

○ no HCP or agent not available○ or individual never had the capacity to

appoint an agent

I/DD Individuals without Capacity

10

Legal Framework

1. “Health Care Decisions Act” (for persons who are intellectually disabled)

2. Codified at Surrogate’s Court Procedure Act 1750-b; Effective March 16, 2003;

3. Reformed law to relax strict common law rules;

4. Legally authorized surrogates may make decisions to withhold or withdraw life sustaining treatment for patients with I/DD who lack capacity. 11

Legally Authorized 1750b Surrogates

1. Court appointed guardians with authority to make healthcare decisions.

2. Actively involved spouse.

3. Actively involved parent.

4. Actively involved adult child, sibling, family member.

5. Consumer Advisory Board (Willowbrook Class).

6. Surrogate Decision Making Committees (Art 80 MHL).*applies to patients without family members or other legally authorized surrogates.

12

Responsibility of Surrogates1. Advocate for efficacious treatment.

2. Base decisions on best interests, and whenknown, the person’s wishes including moral andreligious beliefs.

3. Statutory best interest considerations include -dignity and uniqueness of the person, preserve,improve or restore health; relief from suffering.

SCPA 1750-b (2) & (4)

13

Life Sustaining Treatment (LST)

Medical treatment which is sustaining life functions and without which, according to reasonable medical judgment, the patient will die within a relatively short time period. Includes CPR, mechanical ventilation, hemodialysis, and artificial nutrition and hydration.

SCPA 1750-b(1)

14

Role of Physician - Capacity

1. Attending physician determines if patient has capacity.

2. Arranges for a concurring determination of by a clinician with specific credential approved by OPWDD - includes licensed psychologist.

15

Role of Physician - Medical Criteria

Attending/concurring physician determines;1. patient has a terminal condition; OR2. is permanently unconscious; OR3. has a medical condition other (other than a developmental disability) that is irreversible and will continue indefinitely; (COPD, CHF, dementia)4. AND, the proposed treatment would impose an extraordinary burden to the individual. SCPA 1750-b(4)(b)

16

Extraordinary Burden-Considerations

1. The person’s overall medical condition, other than the person’s developmental disability;

2. The expected outcome of treatment; notwithstanding the person’s developmental disability SCPA 1750-b(4)(b)

17

Artificial Nutrition and Hydration

Additional requirement of finding that ANH itself poses an extraordinary burden to the person

OR

There is no reasonable hope of maintaining life

SCPA 1750-b(4)(b)

18

Oversight1. If a patient with I/DD is a resident of a facility operated or licensed by OPWDD, SCPA 1750-b LST decisions are subject to oversight by the facility director and MHLS;

2. For patients with I/DD who do not reside in a certified setting, SCPA LST decisions are subject to oversight by OPWDD;

3. Oversight exercised by providing notice of LST decisions to facility director and MHLS or OPWDD Commissioner, as appropriate

4. In practice, notice often provided by MOLST form and OPWDD legal requirements checklist

19

Notice requirements

❏At least 48 hours before withdrawing LST (example, terminal/compassionate extubation)

OR

❏As soon as possible if withholding LST (example, DNR/DNI, chemotherapy, dialysis)

❏Patient should be given notice of decision unlesstherapeutic exception applies

20

1750b Process1. Recommendation for withdrawing or withholding LST

2. OPWDD checklist

a. Capacity determinationb. Concurring opinionc. Consentd. Care to be withdrawn/withheld

3. Notice

a. to patient

b. MHLS*, residential provider and/or OPWDD as appropriate

i. * provide checklist, relevant medical records, proposed or draft MOLST.

4. If there are no objections - medical orders can be entered

21

Health Care Decision Resources★ In response to COVID crisis, OPWDD instituted 24 hour

hotline to request concurring opinion where hospital or

voluntary agency do not have access to clinical opinion:

855-696-7933

★ OPWDD health care decisions webpage link:

○ Health Care Decisions | Office for People With

Developmental Disabilities

○ Checklist & MOLST forms

★ EMOLST22

OPWDD Checklist - criteria, notice

23

24

Objections1. Upon an objection the health care decision is suspended, pending mediation or judicial review.

2. Objections may be lodged by patient, parent, adult sibling, other health care providers, facility director, MHLS, OPWDD Commissioner.

3. Legally authorized surrogate should be notified of objection.

4. In practice, objections are rare.SCPA 1750-b(5)(b)

25

IF THERE IS AN

OBJECTION –

PLAN IS NOT IMPLEMENTED

IS THERE A HEALTH

CARE PROXY

WITH AN AVAILABLE

AGENT?

YES

PATIENT OBJECTS

PLAN NOT IMPLEMENTED COURT PROCEEDING MAY BE

NECESSARY TO RESOLVE ISSUES

AGENT

MAKES

DECISION

DEPT OF HEALTH

CHECKLIST #2

NOTICE TO MHLS/AGENCY NOT

REQUIRED

NO

IS THERE A 1750B

SURROGATE AVAILABLE?

YESOPWDD

CHECKLIST

IS THE PATIENT IN A

FACILITY?*

YES

NOTICE (CHECKLIST)

TO MHLS AND

RESIDENTIAL AGENCY

NONOTICE

(CHECKLIST) TO LOCAL

OPWDD

NO SDMC

SDMC PROVIDES CONSENT

OPWDD CHECKLIST

NOTICE (CHECKLIST)

TO MHLS AND

RESIDENTIAL AGENCY

SDMC DOES NOT

CONSENTSTOP *

INDIVIDUAL WITHOUT CAPACITY

END OF LIFE DECISION MAKING

IF THERE ISAN

OBJECTION –

PLAN IS NOT IMPLEMENTED

IF THERE IS AN

OBJECTION –

PLAN IS NOT IMPLEMENTED

© Julie B. Friedman 2021 Intended for illustrative purposes only.

Case PresentationEvent:

❏ 60 y.o. resident of DD residence aspirates on pizza and suffers a cardiac arrest.

❏ Cardiac rhythm and blood pressure are restored after CPR. Cardiology consultants surmise that the arrhythmia was secondary to respiratory distress, not a primary cardiac event.

❏ She is intubated, on mechanical ventilation, requires frequent suctioning and a temporary NG feeding tube has been placed.

27

Patient profile:

❏ Dx's include I/DD, autism, explosive behavior disorder, seizure disorder and dysphagia.

❏ Her 15 outpatient meds include 4 psychotropic medications.

❏ Residence staff describe her baseline as VERY active, always

moving about the residence, and though minimally verbal, able

to make basic needs known largely by utterances and actions.❏ On a dysphagia diet though frequently seeks out food.

❏ Hospitalized 1 year ago for pneumonia, but since that time had

not required inpt or outpt treatment for respiratory infections.

❏ No involved family.

28

Course of Illness - treatment options and considerations

❏ After 10 days she has not regained consciousness. ❏ MRI & EEG show changes consistent with anoxic

encephalopathy. Brain stem reflexes are intact. Neurologists state that she most likely will not regain consciousness.

❏ She has tolerated spontaneous breathing trials but there is a concern for her ability to manage oral-pharyngeal secretions.

❏ A decision needs to be made regarding pursuing tracheostomy orproceeding with extubation and managing potential respiratory distress and resuscitation status.

❏ Residence staff are concerned that if she undergoes tracheostomy she will be unable to return to the facility.

29

“Best Case / Worst Case” Paradigm

Reintubate / Trach/ DNR Extubate / DNI / DNR

Best Case

Worst Case

Most likely

Weaned from VentPEG Minimally Awake

Does Not Return to ResidenceLives Years

Occasional suctionPEG Minimally awakeReturns to Residence

Lives Months

Weaned from VentPEG Recurrent Infections

Does not return to ResidenceLives Weeks to Months

Vent Dependent PEGRecurrent Pneumonia

LTAC / HospitalDies w/in weeks

On O2, Supplemental BiPap ? PEG Recurrent Infections

Returns to Residence but readmissions Lives weeks to months

Dies shortly after extubationAt Hospital

Palliative Care

Philosophy of Care

Clinical Service

Skill Set31

Palliative Care Hospice Comfort-Only Care

Goals Life prolongation& comfort

Remaining time in comfort; accept

some rx'sComfortable death

Prognosis Months-yearsWeeks-months

Hours –Days

Resuscitation Status

Any Usually DNR/DNI DNR/DNI

32

End of Life in the I\DD populationLife expectancy of I/DD population now w/in 5 yrs of general population … deaths from cancer, heart disease, pulmonary disease,dementia

Compared to general population cancer incidence same

↑ GI malignancy ↓ bronchogenic, breast, prostate Ca

Down’s: testicular Ca and leukemias

Common causes of death: cardiac, respiratory, sepsis, intractable seizures, dementia, complications of underlying disease state/syndrome

K Sue et al Family Medicine Forum Presentation Nov 2014

33

Hospice Utilization*

11 2018

20 2019

20 2020

13 (as of Oct 19, 2021)

* Admissions to The Community Hospice with diagnosis codes F70-F79 ...Albany, Schenectady, Rensselaer, Saratoga, Columbia, Greene, Montgomery and Washington counties

34

EOL Challenges In I/DD population

★Limited evidence base on end-of-life needs in adult I/DD population, especially those in community residence★Communication barriers:

○ Impact Symptom Assessment & Management○ Can lead to diagnosis of illness at more advanced stage○ Less involvement of patient in decision making★Patient’s lack of comprehension of their illness, symptoms, or

treatments:○ May interpret illness or treatments as punishment for

wrongdoing.○ May not be able to understand death and why their

family/caregivers are sad around them.

Ellison & Rosielle. Palliative Care Network of Wisconsin. Fast Facts # 192 35

“Behavior is Communication”Indicators of Distress:

1. aggression

2. restlessness

3. changes in speech (eg, whining, moaning, groaning)

Others … withdrawal from usual activities, hyperactivity, loss of appetite, and sleep problems.

Disability Distress and Assessment Tool (DisDAT)

Abbey Pain ScaleDon’t overlook pain, but not just pain

(gi distress, anxiety, med effect)

K Sue et al Can Fam Phys April 2019

36

“Difficult to know if the patient did understand what we were telling him or the treatment we were giving.It therefore made it difficult to know if what his mother said were his wishes were truly his wishes, or maybe her wishes” (Clinician)

“They talked to me, but they were using language that I didn’t understand …. I didn’t have a clue what was going on, and I was very, very scared” (Patient with IDD)

“They didn’t want me to be worried. But if I’d known about it earlier, it wouldn’t have worried me at all” (Patient with mild IDD)

K Sue et al Can Fam Phys April 2019Communication Challenges

37

Books Beyond Words

U.K. charity wordless picture stories

Topics: physical and mental health, lifestyle and relationships, abuse and trauma, grief and bereavement, employment, and criminal justice.

“co-created with and for people who find pictures easier to understand than

words….This includes people with learning disabilities and/or autism,

people with cognitive or communication difficulties, such as Dementia,

people who have difficulty with reading, including some Deaf people, and

people who do not use the language of the country where they are living.”

https://booksbeyondwords.co.uk/ 38

Breaking Bad News … Arch Model

• Ask: Keep questions straightforward. Find out what is already known and what the patient wants to know

• Repeat and clarify: Be prepared to go over information repeatedly, in different ways (using books, photos, etc). Simplify if necessary

• Check the level of understanding: Explore how much the patient knows and what it means to him or her. Go back to previous stages as needed

• Help the person express feelings: Encourage expression of feelings, listen carefully, and give support. Help describe feelings and explore what the patient feels he or she might need next, future support options and choices, and letting other people know, if necessary

K Sue et al Can Fam Phys April 2019 39

Benefit What the patient is hoping the Rx will achieve.

How do we determine in this population?

EffectivenessDoes the clinician think the Rx will work?

BurdenA determination of both patient & clinician

E Pellegrino. JAMA 2000 40

Benefit

Important at E.O.L. (per I/DD individuals)

❏Involved in their own care❏Having friends and family around❏Need to remain occupied❏Be physically comfortable

K Sue et al Can Fam Phys April 2019

41

Burden

❏How will the patient understand the treatments? ❏How will the patient comply with Rx’s or Dx’s. Restraints

or sedation needed?❏Will treatments result in undue pain, suffering, or fear

(hospitalization, IVs), nausea, vomiting, or other side effects)?

❏How will QOL be different after treatment (where they live, change in routine, eating, mobility)?

Ellison & Rosielle. Palliative Care Network of Wisconsin. Fast Facts # 19342

In the time remaining ….❏Clinicians are poor prognosticators … we tend to

overestimate especially when close to patient❏Cancer more predictable than cardiac, COPD, pulmonary❏New dysphagia related to progressive neurodegeneration ❏Recurrent hospitalizations, aspiration, weight loss❏Performance Status … frailty❏Prognostic tools, not validated on I/DD pts, Charlson

Comorbidity Index

“Would I be surprised

if my patient dies within the next year?43

Communicating Prognosis

❏Ask permission❏Explore what they’re thinking, what others have

told them❏Time versus what the future looks like❏If time … specific date important to them?,

statistics? ❏“Hours to days” “Days to weeks”

❏“Weeks to months” “Months to years”

www.vitaltalk.org/guides/discussing-prognosis/44

Medical References & Resources Sue, Kyle et al. Palliative Care for Patients with Communication and Cognitive

Difficulties. Canadian Family Physician. 2019;65(Supplement 1):19-24.

Sue, Kyle et al. Providing Palliative Care to Patients with Communication and Cognitive Difficulties. Family Medicine Forum. 2014.

Ellison, N & D Rosielle. Palliative Care for Adults with Developmental Disabilities. Fast Facts and Concepts #192. Palliative Care Network of Wisconsin. July 2015

Ellison, N & D Rosielle. Palliative Care for Adults with Decision Making for Adults with Developmental Disabilities Near the End of Life. Fast Facts and Concepts #193. Palliative Care Network of Wisconsin. May 2009

Abbey Pain Scale https://www.apsoc.org.au/PDF/Publications/APS_Pain-in-RACF-2_Abbey_Pain_Scale.pdf

Books Beyond Words https://booksbeyondwords.co.uk/

Disability Distress and Assessment Tool (DisDAT) https://www.wamhinpc.org.uk/sites/default/files/Dis%20DAT_Tool.pdf

Vital Talk - evidence based communication techniques for clinicians www.vitaltalk.org/45

IF THERE IS AN

OBJECTION –

PLAN IS NOT IMPLEMENTED

IS THERE A HEALTH

CARE PROXY

WITH AN AVAILABLE

AGENT?

YES

PATIENT OBJECTS

PLAN NOT IMPLEMENTED COURT PROCEEDING MAY BE

NECESSARY TO RESOLVE ISSUES

AGENT

MAKES

DECISION

DEPT OF HEALTH

CHECKLIST #2

NOTICE TO MHLS/AGENCY NOT

REQUIRED

NO

IS THERE A 1750B

SURROGATE AVAILABLE?

YESOPWDD

CHECKLIST

IS THE PATIENT IN A

FACILITY?*

YES

NOTICE (CHECKLIST)

TO MHLS AND

RESIDENTIAL AGENCY

NONOTICE

(CHECKLIST) TO LOCAL

OPWDD

NO SDMC

SDMC PROVIDES CONSENT

OPWDD CHECKLIST

NOTICE (CHECKLIST)

TO MHLS AND

RESIDENTIAL AGENCY

SDMC DOES NOT

CONSENTSTOP *

INDIVIDUAL WITHOUT CAPACITY

END OF LIFE DECISION MAKING

IF THERE ISAN

OBJECTION –

PLAN IS NOT IMPLEMENTED

IF THERE IS AN

OBJECTION –

PLAN IS NOT IMPLEMENTED

© Julie B. Friedman 2021 Intended for illustrative purposes only.

Thank you

Sheila Shea,DirectorMental Hygiene Legal Service

Julie Friedman, Managing AttorneyMental Hygiene Legal Service

George J. Giokas M.D.Palliative Care Partners

November 12, 2021

47