Advanced Care Planning- It’s Not Just for End of Life

Constance Dahlin, ANP-BC, ACHPN, FPCN, FAANPalliative Care Specialist

Disclosure Statement of Financial Interest

I, Constance Dahlin, have reported no relevant conflict of interest for the purpose of the MiPCT

Summit Care Manager Session on Palliative Care

Disclosure Statement of Financial Interest

I, Moni Franks, Have reported no relevant conflict of interest for the purpose of the

MiPCT Summit Care Manager Session on Palliative Care

Objectives

Identify the strategies for goals of care discussions

◦Explain the three elements of Advance Care Planning.

◦Describe the advantage of early Advance Care Planning.

Historical Background

1970-90 Legal Cases raising issue about surrogate decision making and advance directives◦ Quinlan, Cruzan

1991 – Legal Act for Health Decision Making and Self Determination Act

1993 - Outpatient code status began in Oregon as POLST

Various states with out of hospital code status sheets

The nurse's role in this has been delineated by The American Nurses Association (ANA). The ANA stated that nurses "have a responsibility to facilitate informed decision-making, including but not limited to advance directives

What is Advance Care Planning?

1) It is a process, not an event, with the acknowledgment that decisions may change over time. It is beyond code status discussions. It delineates the what, where, and when.

2) It includes discussions with patients to elicit their values, preferences, beliefs, goals of care, and resources that form decision making for end of life care.

What is Advance Care Planning?

3) Documentation is critical. Depending on the state or territory, includes the following documents:

Surrogate health decision makers - Patient Advocate for Health Care Advance Directives/Living wills Orders for in hospital and out of hospital for Do Not Attempt Resuscitation (DNAR) or No Code

MIPOST/MOLST (Medical Orders for Life Sustaining Treatment), POLST (Physician/Provider Orders for Life Sustaining Treatment).

Why do ACP?

Allows the patient to state their wishesEmpowers patients with some control

in disease management and end of life planning

Promotes trustNormalizes the discussion of end of life

planning and allows ACP to be seen as ordinary like any other treatment discussion

Relieves the surrogate decision maker of the burden of making difficult decisions

When to Initiate Discussions

Routinely◦ When you first meet patient◦ Discussion re diagnosis and treatment◦ When a poor prognosis is being presented◦ Non-urgent treatment decisions

Urgent◦ When there are difficult decisions to make◦ When there is an unexpected change in clinical

conditionUpon request

◦ When the patient asks for it◦ When team asking for code discussion

Preferences for Care

Review of the following:◦ Definition of Quality of life?

Comfort? Function? Extended life?

Do you (or the patient) want life sustaining or life prolonging treatment?

Where the individual wants care to spend their last days?◦ Hospital / Intensive care◦ Home◦ Blend

Ethical Principles for ACP

Respect for persons ◦ Autonomy and Self Determination

Advocacy- even if decisions are not in agreement with nurses judgment of “right”

Veracity- disclosure Decision Making

◦ Capacity – ability to understand consequences of the decision (medical determination)

◦ Substituted judgment- what the patient would want if able to communicate

◦ Best Interest

Professional Ethical Responsibility for ACP

Code of Ethics◦ Respect for person◦ Advocacy for health, safety, rights of patient◦ Collaboration with other health professionals

Professional Organizations

◦ ANA, Position statement on Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at End Of Life, 2010.

◦ HPNA, Position statement The Nurse’s Role in Advance Care Planning, 2011.

◦ ANA Position statement: Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions, 2012

Professional Ethical Responsibility for ACPAmerican Nurses Association (ANA). (2012). Position statement Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions

◦Nurses must advocate for and play an active role in initiating discussions about DNR with patients, families, and members of the health care team. ◦Involvement, documentation ◦DNR does not mean Do Not Treat

Challenges for Patients• Often patient wishes are unknown

or not honored.• May feel pressured to receive

therapies they don’t want.• Fear of abandonment• Don’t know they can decline

treatment in any setting• Don’t know about options such as

home services or have poor coverage for end of life care.

Challenges for ProvidersLittle education and training in End of Life Care Concerns that ACP could lead to futile

treatments or encourage use life sustaining therapies whether appropriate or not

Fear of litigationTime to get to know patients and familiesNot knowledge about previous discussions of

wishes, preferences, and goals of careLack of documentation of important

conversationsExpectation of outcomes of the conversation

◦ “Get the DNR.”

Clinician Difficulty in ACPDiscussions

Sensitive topic ◦ Hard to ask the questions and raise

issueConcern that patient will misinterpret

intention of the discussion◦ New diagnosis◦ Prognosis

Finding appropriate languageFear of frightening patientsTimeTiming

Guidelines for Encouraging Conversation

Assess what the patient and family understand about illness, and response to treatment

Provide information re disease status if neededDiscuss goals of care, expectations for futureHas patient discussed their values, preferences,

and beliefs with that person? Or anyone else ?

Conversation Starters

Have you ever thought about the extent of treatment you would want?

Have you thought about someone who would make decisions for you in the case you could not make them?

Have you thought about how you would guide them in the decisions?

Have you considered what you would want if your disease became more advanced?

Essential areas to coverThe role of culture in advance care

planning. ◦ Are there any cultural concerns we should

understand in how your family considers illness, death, dying, and/or treatment makes decisions?

The role of spirituality and religion in advance care planning◦ Are there any rituals or practices that

influence your treatment decisions or view of death and dying?

Values

What do you (or the person) hold dear in life?

How do your (or the person) definition of quality of life

What gives you (or the person) strength?

Beliefs

What is your (or the person’s) Meaning of Life

What is your (or the person’s) Religion?

Is the your (or the person’s) Spiritual?What is your (or the person’s)

thought on the Afterlife?

Achieving Common Understanding with Families

Focus on the values, preferences, and beliefs of the patient to find out if the patient had made his or her wishes known.

Assist family members to make decisions based on substituted judgment and patient’s best interests

Did your loved one ever discuss what he or she would want or not want in this kind of a situation?

Given our understanding of the medical situation and what you’ve told us about your loved one’s goals, I would recommend not pursuing …….

Achieving Common Understanding with Families

Did your loved one ever discuss what he or she would want or not want in this kind of a situation?◦ To find out if the patient had made his or her wishes

known. ◦ Assists family members to make decisions based on

substituted judgment and patient’s best interests

Given our understanding of the medical situation and what you’ve told us about your loved one’s goals, I would recommend not pursuing …….◦ Offer clear recommendations based on patient and

family goals and medical condition.

Eliciting Goals from Family

What do you imagine [the patient] would have done or wanted in this situation?

Our goal is not so much to think about what you would want or not want but to use your knowledge of [the patient] to understand what he or she would want in this situation.◦Maintain focus on the patient’s

perspectives. Often this can help to relieve guilt that family members may feel over making decisions.

ELNEC

Achieving Common Understanding with Families

It sounds like we have an understanding that your loved one would not want to continue be in a respirator or be in a vegetative state. Is that how everyone understands his or her wishes?”Use summary statements. Consider decisions for

“therapeutic trial” or as needing only family assent.

I want to make sure everyone understands that we’ve decided to…Check for understanding of the decisions made. Seek consensus on the decision or on the need for more

information. ELNEC

SummaryComprehensive assessment of symptoms and

suffering includes ascertaining relevant information about the patient‘s background, values, family relationships, understanding of illness, goals of care and hopes for the future.

All of these factors are essential to provide patient and family-centered information regarding disease status, explore options for care suitable to patient goals and condition, and foster shared decision-making.Dahlin 2010

ConclusionAdvance Care Planning is not just for end

of life. Ideally, it should start upstream when someone is well.

Or it can start at the diagnosis of an illness.

ResourcesRespecting Choices “Making

Choices respectingchoices.orgAging with Dignity “Five Wishes”agingwithdignity.org/five-wishes.phpGrace Project “Advance Directive”projectgrace.org/Advance-DirectivesDirectives by Statewww.caringinfo.org/stateaddownload

ReferencesAmerican Nurses Association (ANA). (2012). Position statement: Nursing Care and Do Not Resuscitate (DNR) and Allow Natural Death (AND) Decisions Washington, DC: ANA. http://www.nursingworld.org/positionstatements

American Nurses Association (ANA). (2010). Position statement: Registered nurses’ roles and responsibilities in providing expert care and counseling at the end of life. Washington, DC: ANA. Retrieved September 16, 2011 from: http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Ethics-Position-Statements.aspx

American Nurses Association (ANA). (2010) Nursing Scope and Standards of Practice.2nd ed. Silver Spring MD; ANA nursingbooks.org

American Nurses Association (ANA). (2010) Social Policy Statement. Silver Spring MD; ANA nursingbooks.org

American Nurses Association (ANA). (2010) Guide to the Code of Ethics for Nurses. Interpretation and Application. Silver Spring, MD: nursesbooks.org.

End of Life Nursing Education Curriculum, 2013