The Ethics of End of Life PlanningBryan J. Adler, Esq. CELA*

*Certified Elder Law Attorney by the ABA Accredited National Elder Law Foundation

Issues Related to End of Life Care

Technology

Religion

Financing

Political

Ethical

Impact of Health Care Reform

Barriers to Effective Management of End-of-Life Issues

Education lacking/physician skill set variable

Discussions time consuming, sometimes confrontational

Reimbursement lacking

Financial incentives favor treatment

Medical-legal concerns

Communication by multiple people incomplete, contradictory, does not

address end-of-life options

Discussions often occur late in process

Focus on technology

Public’s unrealistic expectations

Better understanding of cultural differences

Legal Tools for Financial & Medical Decision Making

Financial Management

Durable Power of Attorney

Joint Ownership of Assets

Living Trusts

Guardianship

Representative Payee Status

Health Care

Health Care Power of Attorney

Living Will Declaration (Advance Directives)

HIPAA Authorization

POLST

Guardianship

Powers of Attorney Continued

Must look at what POA authorizes

Issues to consider before signing POA:

Should document give agent power to act whenever agent decides it is necessary, or only when someone other than agent determines you are incapacitated?

How broad are the powers you want to give to agent? Gifting language?

Name more than one person to serve together as co-agents?

Who to name as a back up to take over if original agent cannot serve?

Durable Power of Attorney for HealthCare

Typical HCP concerns:

When I cannot interact with an alert & interactive patient, who can give me authority to act?;

Is the agent authorized to act for the incapacitated principal?;

If the medical provider follows the direction & decisions of the agent, is he or she protected from repercussions?

Reality without legality

Should be a separate document from financial POA

Can be effective immediately, but usually effective upon incapacity

Living Will - (Advance Directive)

Patient Self-Determination Act of 1990

All Medicare & Medicaid providers required to provide advance

directive forms to patients

New Jersey Advance Directives for Health Care Act

Physician Orders for Life-Sustaining Treatment Act (POLST)

Living Will

Conditions Covered – 2 conditions

Terminal illness = incurable & irreversible medical condition in advanced state which will result in death regardless of continued application of life-sustaining treatment

Permanent Unconsciousness = persistent vegetative state, irreversible coma

Treatment covered – All life-sustaining treatment, includes artificial nutrition & hydration if included in declaration.

If neither condition met, living will not effective

Living Will - Requirements

Signed by declarant or another on behalf of & at direction of declarant

Witnessed by 2 persons 18 or older

No standard form

Health care provider shall make it part of medical record when given

copy.

Living Will – When Effective

Copy provided to attending physician

Original not required

Physician determines declarant is incompetent & either in terminal

condition or permanent unconsciousness.

Must be confirmed by 2nd physician

No effect on life or health insurance

Limitations of the Living Will

Applies only in Limited Situations

Terminal Illness or permanent unconsciousness

Incompetence

Physician has copy of document

Requires decision making before facts are known

May be misunderstood by health care providers

Could be ignored by health care providers

Need both HCPOA & LW

What is Legal Capacity?

A person is presumed to have capacity

For guardianship, defined as “an adult whose ability to receive and evaluate information effectively and communicate decisions in any way is impaired to such a significant extent that he is partially or totally unable to manage his financial resources or to meet essential requirements for his physical health and safety”

Definition depends on the type of document signed or transaction

When The Incapacitated Patient Does Not Have an

Advance Directive

Who decides?

Family involvement

Hospital Setting

Ethics Committees

Nursing Home/ALF setting

PA Ombudsman for Institutional Elderly

Ethics Committees

Situations for Guardianships

Minor child (court settlement, parent dies)

Special needs child reaching majority

At age 18, Parent no longer able to be legal guardian for child

Advanced age – no POA in place or POA defective

POA in place, but family is dysfunctional or AIP being exploited`

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Types of Guardianships

Temporary Guardian

Authority limited to critical need

New under statute

Appointment has no effect on adjudication of incapacity

General Guardianship

Totally incapacitated

Person loses all rights

Special guardian, medical guardian.

Artificial Nutrition and Hydration

Definition

Artificial nutrition and hydration is a medical treatment in which

water and liquid nutrients are provided by means of a tube

inserted into a vein or directly into the stomach or intestines.

Ethical Issues

Ethically, there is no difference between withholding a medical treatment (not starting it) or withdrawing it

Defined as Life Sustaining treatment

The decision is based on the patient’s wishes

Emotionally, it may be more difficult to stop a medical treatment that is being provided than it is not to start it

Artificial Nutrition and Hydration

Withholding/Withdrawing

“The decision to withhold food and/or fluid is made only when it is apparent to the caregivers and family that further prolongation of life would only extend discomfort.”

- William Lamers, M.D., Hospice Foundation of America

The decision should always involve careful consideration

Withholding or withdrawing artificial nutrition and hydration allows

the disease to progress on its natural course.

It is not a decision or action actively seeking death and ending

life…it is not euthanasia.

The intent is to secure comfort, not death.

Artificial Nutrition and Hydration

Withholding/Withdrawing

Who Decides?

Patient’s preference is foremost

If patient lacks capacity to make this decision, consult:

--Advance Directive for Healthcare

--Health Care Proxy

--Durable Medical Power of Attorney

--Legal next of kin

Check individual state regulations

Substituted judgment vs “best interests”

Substituted judgment – Terminally ill

Best interest - PVS

If No Advance Directive (Facility)

Duty to report to Ombudsman for the Institutional Elderly if intent to withhold or withdraw life-sustaining treatment except:

Resident under age 60

Resident’s fully informed decision

Advanced directive exists

Life-sustaining treatment not medically indicated

Court involvement

Reviewed by regional long-term care ethics committee

Three Categories of Patients

PVS Patients – Hospital & non-elderly

Confirmed by ethics committee (prognosis committee)

Best interest standard

PVS Elderly Nursing Home/AL Residents

Ombudsman’s involvement unless exception applies

Best interest standard

Terminally ill elderly NH/AL Resident

Ombudsman’s involvement unless exception applies

Substituted judgment standard

Who Decides?

If the physician or facility is unwilling to honor the patient’s specific wishes, he/she should transfer care to another physician/facility (personal convictions, religious institutions)

When conflicts occur, communication is key

Ethics committee may be helpful in some instances

Conflict Resolution

What is the goal of treatment for this patient?

What do we know about the patient’s wishes?

Who is the appropriate surrogate?

Family meeting, if agreeable to the patient

Utilize your team: chaplain, social worker, nurse, doctor etc.

Conflict Resolution

INFORMATION, INFORMATION, INFORMATION!!!

Clarify diagnosis and prognosis: “what do you understand about your illness?”

Give patient/family time to ask questions and comprehend painful information

Avoid phrases like “do everything”

Acknowledge emotions

Explore possible mistrust

Conflict Resolution

Deal with anticipatory grief

Explore guilt, secondary gain

Explore cultural or religious beliefs

Be aware of one’s own feelings

Conflict Resolution

Team should agree and be clear regarding options presented

Recognize true value conflicts: parties disagree over goals or

treatment benefits

Consider “therapeutic trial” of least-invasive therapy, with clear

end-points for re-assessing efficacy

Case Study #1

Mrs. W. is an 82 year old widowed retired secretary with

advanced dementia, residing in a skilled nursing facility. She

has one daughter who is very attentive and has POA.

She requires total care with bathing, dressing, feeding and is

incontinent and unable to walk. She must be fed and eats

25-50% of meals.

She is admitted to the hospital with pneumonia and

improves with IV antibiotic therapy.

Case Study #1

She is intermittently agitated, requiring sedation and

restraints. Her oral intake is minimal, even when the IV is

discontinued. On a soft diet.

The social worker states that a swallowing evaluation must

be done before she returns to the nursing home, “to see if

she needs a PEG”.

How would you proceed?

Possible Options

Assess medications, especially sedatives

Any evidence of patient’s wishes?

What are daughter’s wishes?

Who usually feeds her?

Favorite foods? Supplements?

Swallowing study may help determine appropriate food texture…

Case Study #2

Mrs. C. is a 52 year old woman with breast cancer metastatic to liver, bone and brain.

The cancer has progressed despite chemotherapy and radiation.

She has lost 40 pounds during her treatment and her appetite is very poor.

Her daughter is a nurse and wants IV therapy to prevent dehydration.

What would you do as a member of the treatment team?

Options…

Educate and support patient and family

Explore emotional components and meaning of patient’s symptoms

Assess the patient’s level of discomfort related to the symptoms

Explore ways to make the patient feel better

Experiences in Other States

Legal in Washington, Oregon, California, and Vermont , disputed in

Montana

Oregon’s experience – Death with Dignity Act (passed in 1994)

18 plus years since law went into effect

85 hastened deaths on average per year/132 in 2015

.02 % of deaths in Oregon

Patient top concern – maintain control over their final days

Patient least concern – financial implications of treatment

Oregon

1,545 patients received prescriptions

991 ingested medication

544 chose not to

Only 2% did not have insurance coverage

In 2012 – 94% of deaths occurred in own home (in 2012, 45% of

deaths occurred in hospital setting)

In 2012, 97% of patients enrolled in hospice

Medical Marijuana in NJ

Must have PTSD, ALS, terminal cancer, Crohn’s, IBS, MS, or terminal

illness resulting in death w/in 12 months

Certified by physician

Relationship for at least 1 yr.

4 separate visits with doctor

1 yr. waiting period if moving to NJ

$200 registration fee for 2-year card, but $20 if on Medicaid

Closest dispensary – Bellmawr, NJ (Compassionate Sciences)

Medical Marijuana in PA

Law passed in April, 2016

Covers “Serious Medical Conditions”

Permanent Implementation Guidelines note yet published

Implementation likely in early 2018

Wrap-up

Questions

Use Rothkoff Law Group as a resource

Evaluation forms

Recommended topics for future

Obtaining CE credits

NJ Caregiver Award Winner

Miguel Burgos

877.475.1101

www.rothkofflaw.com

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