Ethics at the End of Life:Understanding Conflict & Seeking Resolution

Rachelle Barina, MTS, PhD(c)Gateway Alliance Conference

August 6, 20159a.m. - 12:30p.m.

I hope the next three hours will…

Help you gain awareness of how you tend to think about ethical issues and why you tend to think that way.

Improve your capacity to understand the perspectives of others and articulate strong and relevant support for your views.

Deepen your moral imagination and give you insight about several ethically common or significant issues

Outline

1. Intro to Ethics2. Reflection on your own thought patterns &

comparison to moral theories3. US culture, death, and dying 4. 5 Cases

1. Advance directives & end of life conversations2. Treatment after a suicide attempt3. Relationship of law and ethics4. Communication strategies5. “Futility” impasses6. Scope of clinicians’ responsibilities in helping patients live

& die well7. Policy and physician assisted suicide or physician aid-in-

dying

What is ethics??

BEING(CHARACTER)

Who we ought to become as persons

5

Ethics

DOING(ACTION)

How we ought to act in relation to

others

THE ULTIMATE GOODThe purpose and end

of our lives:Flourishing

RIGHT

GOODS

Ethics is the study of the moral lives & actions of persons (or organizations) against a normative basis that provides insight into who we ought to become & how we ought to act in relation to others

Ethics Lived• Ethics is not a theory applied to life.• You develop your ethical perspective

and a normative framework by which you make decisions throughout your life.

• As a clinician, you don’t (or shouldn’t) check your conscience at the door.

• Health Care Ethics: Define boundaries & advocate options that help people thrive

• The stakes

6

Ethics & Feelings of Moral Distress • Personal effects– Quantifiable decrease in well-being, withdrawal

from social interactions, resentment & sadness

• Professional effects– Quantifiable impact on clinical care,

communication

• Organizational effects– Significant job turnover

You need intellectual tools and social support as you address difficult questions.

Assessing Your Approach to EthicsThis assessment is borrowed from Panicola et al Health Care Ethics: Theological Foundations, Contemporary Issues, and Controversial Cases. It is based off the work of Brian O’Toole, first published as “Four Ways People Approach Ethics,” in Health Progress.

BEING(CHARACTER)

9

Theories & Approaches to Ethics

DOING(ACTION)

VirtuePrinciples

Utilitarian Consequentiali

sm

• These theories describe how you, your patients, and your co-workers probably already think.

• You likely use different approaches as you negotiate and work through issues.

Principle-Based Approach

• Decisions are made according to norms, rules, and principles. – i.e., Be charitable, Do not harm, Be fair, Do not kill,

Respect autonomy, Keep your promises, etc.)

• Principles come from a variety of sources• The ends do not justify the means (or action) • Some are engrained in law and others are not.• Bioethics and Principlism (Autonomy,

Maleficence, Beneficence, and Justice)– What to do when principles conflict?

Utilitarian Consequentialism

• Begin not with principles but with consequences and usefulness.

• What are the valued ends?• What will happen if you pursue each

option? • Calculation– Greatest good for the greatest number.– Comparison of costs/burdens and

gains/benefits

• The ends justify the means

Virtue Approach

• Ethics begins with the character and identity of a person, rather than the action or question at hand.

• Decisions come out of and shape who someone is/becomes.

• Ethical decisions are not simply about action, but about becoming virtuous people and helping others become virtuous too.

• The intention and disposition of a person is crucial.

Revised ANA Code of Ethics for Nurses• Provision 5:– The nurse owes the same duties to self as to

others, including the responsibility to promote health and safety, preserve wholeness of character and integrity, maintain competence, and continue personal and professional growth.

Discuss with one partner

1. Try to explain why you tend towards one approach or why your results are mixed.

• What in your life may have led you to these patterns of thinking?

• What has shaped the ways you approach ethics and your moral commitments?

2. Can you think of a time where your moral commitments came up in your professional work? • What happened, what did you think, and did your

thinking have evidence of any of the approaches we discussed?

Remember: Text your questions to 661-523-2995

Wrap-up

• Ethics is about helping people to flourish and to be able to pursue goods.– Health care ethics acknowledges there are many

stakeholders, so it seeks to define limits and boundaries that balances the goods of all involved.

• Your commitments and experiences color your professional judgment and your conscience.

• Being aware of how you tend to approach ethical issues and how others might approach them will help you gain understanding, build bridges, and explain differences.

Remember: Text your questions to 661-523-2995

Break!Text your questions to 661-523-2995

Why ethics at the end of life??

Ethics & End of Life

Cost of Providing Treatment

Regulation and Policy

Religious Commitments

Technological

intervention

Your personal, values,

experiences and ideas

Family Dynamics

Organizational Values & Policies

Physician & care team dynamics

Laws &Fear of lawsuits

Medical culture and the

default to treat

Miscommunication and

Misconceptions

Professional

Guidelines

Pre-Modern Medicine Modern Medicine

Little capacity to intervene in disease and death processes. People did all they could, usually without significantly affecting the timing of death.

The dying process is lengthened by our technologies and capacity to intervene; common sentiment is that we should intervene and delay death when we can.

Death was viewed through faith as a natural evil that couldn’t be affected. We were not immanently responsible for death.

Death is viewed through science as a moral evil to fight against. We are responsible when we fail to overcome death.

People accepted their finitude. We tend to be anxious and resistant of death, emphasizing our autonomy over death and a medical hope to overcome all disease

People thought about morality, even if not naming it as such

More people experience end of life in institutions. Bioethics formalized in 60s-80s.

Times Past and Present

Slide credit: Mike Panicola

Most people have numerous end of life options.

Are we dying in the ways we want? Are we thriving as health declines?

True or False: Most people prefer to die in the hospital surrounded by an attentive group of health care professionals who will manage pain and other symptoms.False! • >80% of patients say that they wish to avoid

hospitalization during the terminal phase of illness.

What percentage of people in the US die in a hospital? …In an ICU?50% die in a hospital

• 70-80% of deaths in the US occur in a hospital/institutional setting.

• More than 68% of Medicare pts were hospitalized in their last 6 months.

20% die in an ICU• Are we dying in the ways we want?

Why does end of life continue to pose challenges?

Personal Interpersonal Medical Structural

•Accepting our mortality is REALLY HARD.•Death and dying and often raise questions about the meaning of life, death, and flourishing.•Preconceived ideas about hospice.

•Differences are brought to light.•Long standing conflicts and grudges come up.•Spirituality or faith can be important and divisive.

•Medicine almost always has another option to try.•The culture of medicine leads to a tendency to try it.•Technological interventions are difficult to forego or withdraw.

•US culture tends to deny and avoid the realities of finitude and death. •Systematic challenges from our health care system.

Problems of our HC System Shape End of Life

Current System

Care Design provider-centered

Care Focus individual sick care

Care Delivery fragmented, in silos

Care Setting hospital, office

Payment fee-for-service

Financial Incentives

do more, make more $$

Primary Care

Diagnostics

The Patie

nt

Specialist(s)

More Diagnostics, Terminal diagnosis

Event &hospitalizati

on

Nursing Home

Primary Care

Specialist(s)

Home

Slide credit: Mike Panicola

Nursing Home

ICU

ED, Admission

• The U.S. population is aging – fast – 40+ million people ≥65 years of age in

2010, – By 2050 that number will be over 80

million

• The 65+ population in the U.S. tends to be sicker than elderly adults in other industrialized nations– Approximately 92% of older adults

have at least one chronic disease that leads to significant health decline prior to death.

To Make the Situation Worse…

Slide credit: Mike Panicola

Dying in the US Today

How are we going to fix the conflict-ridden, expensive, and dissatisfying ways we die?

From “Let's talk about dying” - Peter Saul

Funct

ion

Time

Sudden Death Terminal Illness

Organ Failure Frailty

Remember: Text your questions to 661-523-2995

Advance Directives• First proposed by a lawyer in 1967• Surrogate DMs and treatment directives• Advance Directives were born out of:

• 1) Values of autonomy and self-determination (Principlism)

• 2) The practical need to have a process that would reduce court costs and conflicts at EOL. (Consequentialism)

We frequently overestimate how much treatment-based directives will advance patient autonomy and self-determination.

Concerns about Treatment Directives• Accurate prediction of situational

preferences• Misunderstanding & lack of perspective• Tremendous cognitive bias in making treatment

decisions in advance. (Recent experience, way of asking questions, the AD form itself)

• Stability of preferences• Advance directives must be acknowledged

and interpreted.• They often fail to resolve difficult clinical

situations.

What Can Advance Directives do?• Designate a surrogate decision maker.• Treatment directives may help us know

about a person’s anticipated preferences.• Treatment directives can help alleviate the

burdens of responsibility that families feel.• Most importantly, they are one tool

for prompting our attention and having conversations.

End of Life Conversations

• Our conversations are poor because:– We usually don’t have them. (90 vs. 30%) – We use sickness as the occasions to

acknowledge that we die and advance directives to frame our conversations.• Treatment directives can serve as proxies for bigger

and more challenging ideas, emotions, and questions.

Our conversations should focus on what matters most toward the end of life, not which treatments we may want.

All health care professionals have a role in encouraging advance care planning.

Better Questions to Start with

• Theconversationproject.org• Advance Care Planning: the process of thinking about

your preferences for care at the end of life • Get Ready, Get Set, Go, Keep Going (AD is option in the last

phase)• What are your priorities for living toward the end of your

life?• What are your concerns about treatment? • What are your preferences about where you want to be?• How involved do you want your loved ones to be?• When the death approaches rapidly, are you more inclined

to be alone or surrounded by family?• What do you feel are the three most important things that

you want your friends, family and/or doctors to understand about your wishes for end-of-life care?

**Might Katrina’s EOL turned out differently if she had a different kind of conversation?

End of Life Conversations & Culture Shift

Better EOL conversations are not enough

Cultural shifts

Structural:Reimbursement, institutional practices, physician expectations, realistic advertising messages, access to and easier/earlier transitions to hospice, etc.

Personal:Reflection and acceptance about end of life, Realistic expectations of medicine, Conversations with family & surrogate decision makers

Remember: Text your questions to 661-523-2995

2 minute discussion

• Personally or professionally, how might you be able to promote more substantive conversations about living toward the end of life?

Remember: Text your questions to 661-523-2995

This talk included case presentations that are not available for distribution.

Questions? Thank you!