2/20/2020 - INHS Health Training · Core MODULE 1 PALLIATIVE NURSING CARE Core Curriculum Core Objectives Describe the role of the nurse in providing quality palliative care for patients

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Core

MODULE 1

PALLIATIVE NURSING CARE

Core Curriculum

Core

Objectives

Describe the role of the nurse in providing quality palliative care

for patients across the lifespan.

Identify the need for collaborating with interdisciplinary team

members while implementing the nursing role in palliative care.

Recognize changes in population demographics, healthcare

economics, and service delivery that necessitate improved

professional preparation for palliative care.

Describe the philosophy and principles of hospice and

palliative care that can be integrated across settings to affect

quality care at the end of life.

Discuss aspects of assembling physiological, psychological,

spiritual, and social domains of quality of life for patients and

families facing a life-threatening illness or event.

Core

Section I: Overview of Dying in America

Nurses Play a Major Role in Caring for Seriously Ill

Patients and Their FamiliesElicit goals of care

Assess, manage, coordinate care

Listen

Bear witness

Communicate with team

Knowledgeable in evidence-based practice

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Core

The Facts About Dying in America Today

117 million adults have 1 or more chronic diseases

1 out of 4 adults have 2 or more chronic diseases

Over 2.6 million people die/year in the US

Top 5 leading causes of death Heart disease (614,348)

Cancer (591,699)

Chronic lower respiratory disease (147,101)

Unintentional injuries (136,0530)

Cerebrovascular diseases (133,103)

CDC, 2016

Core

Serious Illness in America: Its Impact on Care

Exploding healthcare costs

Poor understanding of prognosis

Failure to treat pain and other symptoms

Increased use of technology

CHCF, 2016; Lui et al., 2014

Core

Impact of Chronic Illness on Patients and

Families

Prolonging life but promoting suffering?

Burdens versus benefits?

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Core

What Constitutes Quality Care at the End-of-

Life?

For Healthcare Teams: providing

symptom management and discussing

the emotional aspects of the disease

For Patients: achieving a sense of

control, attaining spiritual peace,

succeeding in having finance in order,

strengthening relationships with loved

ones, and believing that their life has

meaning

Core

Core

Overview of Caregivers: Their Commitment

and The Cost

Most adults prefer to die at home, generally

requiring family to provide support

Cost of uncompensated care= $450 B/year

RAND, 2014; Rothman, 2014

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Core

U.S. Veterans: 21.8 million

96% of all veterans die in non-VA facilities

430 WWII veterans die each year

Veteran deaths account for almost 28% of all U.S. deaths

Nearly 40% of enrolled veterans live in rural

communities

121,000 veterans are without shelter or healthcare,

hence no access to hospice of palliative care

National WWII Museum, 2016; USVA, 2015; USVA, n.d.

Remember Patients Who Are Veterans

Core

Section II: Defining Hospice and Palliative Care

What is Hospice?

Definition

History

Hospice services

Statistics

Core

What is Palliative Care?

Palliative care means patient and family-centered care

that optimizes quality of life by anticipating, preventing,

and treating suffering. Palliative care throughout the

continuum of illness involves addressing physical,

intellectual, emotional, social, and spiritual needs and to

facilitate patient autonomy, access to information, and

choice.

CMS, 2008; NCP, 2013; NQF, 2008

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Core

Curative Treatment Palliative

Care Hospice

Current Practice of Hospice and Palliative Care

Core

Disease-Modifying

Treatment

Hospice

Care

Bereavement

SupportPalliative Care

Terminal Phase

of Illness

Death

Continuum of Care

Core

Snapshot of Palliative Care in the US Today

90% of hospitals with 300 beds or more have palliative care teams

90% of hospitals operated by the Catholic Church provide palliative care

96% of teaching hospitals have palliative care teams

US southern states fall behind in providing palliative care

23% of for-profit hospitals provide palliative care

CAPC, 2015

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Core

Characteristics of Palliative Care Philosophy

and Delivery

Interdisciplinary care

Excellent communication between patients, families, health care providers

Services provided concurrently with or independent of curative/life-prolonging care

Hopes for peace and dignity are supported throughout the course of illness and pre-post dying process

NCP, 2013

Core

Barriers to Quality Care at the End of Life

Failure to acknowledge the limits of medicine

Workforce that is too small to meet demands

Lack of training for healthcare providers

Hospice/palliative care services are poorly understood

Lack of payment models linked to quality measures

Rules and regulations

Denial of death

CAPC, 2015; NHPCO,2014a & 2015

Core

Lessons Learned in Managing Barriers

Give providers “the language”

Build collaborative relationships with palliative care

team

Institute automatic triggers for palliative care

consult

Lindvall et al., 2014

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Prognostication Is Difficult: Can Cause

Confusion as to When to Initiate Palliative Care

Consists of 2 parts: Foreseeing (estimating prognosis)

Foretelling (discussing prognosis)

Performance status Karnofsky – ECOG poor predictors, multiple

symptoms, biological markers (e.g. albumin)

“Would I be surprised if this patient died in the next

6 months?”Hui, 2011; Lynn et al., 2007

Core

Stop and Consider

Which of the following patients could

benefit from palliative care?

A. 64-year-old with congestive heart failure,

hypertension and diabetes

B. 32-year-old with acute myelogenous

leukemia

C. 57-year-old with newly diagnosed

amyotrophic lateral sclerosis

D. 76-year-old with Parkinson’s disease

Core

Section III: Resources for Making the Case to

Provide Excellent Palliative Care

Changes Must Be Made: Development of Standards to

Guide Practice

Institute of Medicine (IOM)

National Consensus Project (NCP) for Quality Palliative

Care

National Quality Forum (NQF)

The Joint Commission

American Association of the Colleges of Nursing (AACN),

Competencies and Recommendations for Education

Undergraduate Nursing Students (CARES)

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Core

NCP and NQF: 8 Domains of Palliative Care

Structure and processes of care

Physical aspects of care

Psychological and psychiatric aspects of care

Social aspects of care

Spiritual, religious, and existential aspects of care

Cultural aspects of care

Care of the patient at the end of life

Ethical and legal aspects of care

NCP, 2013

Core

Nursing & Medical Organizations That Support

Palliative Care

American Association of

Nursing (AACN)

American Association of

Critical Care Nurses

(AACN)

Hospice & Palliative

Nurses Association (HPNA)

Oncology Nursing Society

(ONS)

American Academy of

Hospice & Palliative

Medicine (AAHPM)

American Heart

Association(AHA) &

American Stroke

Association (ASA)

American Society of

Clinical Oncology (ASCO)

NURSING MEDICINE

Core

Pivotal Study

Population: patients with metastatic non-small cell

lung cancer

Design:

½ received palliative care and standard oncology care

½ received standard oncology care only

Conclusion: Those who received early palliative

care along with standard oncology care

Increased both quality of life and mood

Less aggressive care

Longer survival Temel et al., 2010

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Core

Does Palliative Care Improve Care, Decrease

Hospitalizations & Save Money?

Sutter Health: Advanced Illness Management (AIM)

for those with serious illnessImproved home care, leading to less ER visits

Improved patient, family, physician satisfaction

54% fewer hospital admissions

80% reduction in ICU days

26% reduction in inpatient LOS (2 days)

52% decrease in clinic visits, 60% increase in hospice enrollment

Result: Saving>$700 per member/month

Hughes & Smith, 2014

Core

Earlier Palliative Care Consults:

Larger Cost-Saving Effect

Palliative care consult within 6 days of

admission: Savings $1,312

Palliative care consult within 2 days of

admission: Savings $2,280

This is equivalent to a 14% and 24%

reduction, respectively, in the cost of hospital stay

May et al., 2015

Core

What about Costs for Medicare and Medicaid

Patients?

The seriously ill constitute only 5-10% of patients

(more than ½ of the nation’s total healthcare costs)

10% of Medicare beneficiaries with 5 or more co-

morbid illnesses (2/3 of total Medicare spending)

The 4% of the sickest Medicaid beneficiaries (48% of

total program spending)

76% of the national Medicaid budget goes to acute

hospital services, the most expensive setting of care

Palliative care could decrease these expendituresCAPC, 2016

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Core

Payment for Hospice and Palliative Care

HOSPICE

Medicare

Medicaid

Most private health

insurers

PALLIATIVE CARE

Philanthropy

Fee-for-service

Direct hospital support

Core

Physical

Functional Ability

Strength/Fatigue

Sleep & Rest

Nausea

Appetite

Constipation

Pain

Psychological

Anxiety

Depression

Enjoyment/Leisure

Pain Distress

Happiness

Fear

Cognition/Attention

Quality of

LifeSocial

Financial Burden

Caregiver Burden

Roles and Relationships

Affection/Sexual Function

Appearance

Spiritual

Hope

Suffering

Meaning of Pain

Religiosity

Transcendence

http://prc.coh.orgQuality-of-Life Model

Core

Hope for the Best…Prepare for the Worst

Hope for the best

Review treatments that may prolong life and

relieve suffering

Prepare for the worst

What would be left undone?

Who would make decisions if you could not make

them?

What would your wishes be regarding aggressive

treatments, such as resuscitation? Quill et al., 2014

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Core

Maintaining Hope in the Midst of Death

Cotter & Foxwell, 2015

Experiential processes

Spiritual processes

Relational processes

Rational thought

processes

Remember the

caregiver

Core

Tools and Resources for Palliative Care

Assessment Tools

Physical symptoms

Emotional symptoms

Spirituality

Quality of life

Caregivers outcomeshttp://prc.coh.org

Core

Role of the Nurse in Improving Palliative Care

Some things cannot be “fixed”

Use of therapeutic presence

Maintaining a realistic perspective

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Core

Extending Palliative Care Across Settings

Nurses as the constant

Expanding the concept of healing

Becoming educated

Joint Commission Advanced Certification in

Palliative Care

Core

Final Thoughts…..

Quality palliative care addresses quality-of-life

concerns

Increased nursing knowledge is essential

“Being with”

Importance of interdisciplinary approach to

care

Core

“… touching the dying, the poor, the lonely,

and the unwanted according to the grace

we have received, and let us not be

ashamed or slow to do the humble work.”

-Mother Teresa

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MODULE 3

SYMPTOM MANAGEMENT

Core Curriculum

Core

Section I: Introduction

Essential Elements of Symptom Management

Assess, plan, intervene, evaluate

Ongoing assessment and evaluation

Requires interdisciplinary teamwork

Reimbursement concerns (affordable options)

Research is needed

Coyne et al., 2015

Core

Symptoms and Suffering

Symptoms create suffering and distress

Psychosocial intervention is key to complement

pharmacologic strategies

Need for interdisciplinary care

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Core

Symptom Management in the Older Adult

May have several symptoms with multiple co-

morbitities

Majority of hospice diagnoses are non-cancer related,

associated with heavy symptom burden

Congestive heart failure (CHF)

Chronic obstructive pulmonary disease (COPD)

Dementia

Other

Social isolation

Core

Common End-of-Life Symptoms

Respiratory

Dyspnea, cough

GI

Anorexia/cachexia, constipation, diarrhea, nausea/vomiting,

xerostomia

Psychological

Depression, anxiety, post-traumatic stress disorder,

delirium/agitation/confusion

General/Systemic

Fatigue/weakness, wounds, seizures, sleep disturbances,

lymphedema, and urgent syndromes

Core

Section II: Respiratory Symptoms

Dyspnea

Cough (at a glance)

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Core

Dyspnea: Overview and Incidence

Subjective experience

Most reported symptom

Promotes disability, poor quality of life, and

suffering

Balkstra, 2015; Dudgeon, 2015

Core

Causes of Dyspnea

Major pulmonary causes

Major cardiac causes

Major neuromuscular causes

Other causes

Core

Causes of Dyspnea

Major pulmonary causes

Major cardiac causes

Major neuromuscular causes

Other causes

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Core

Vignette #7 : Symptom Assessment

Core

Treatment of Dyspnea

Treating symptoms or underlying cause

Pharmacologic treatments

Opioids

Nonopioids

Dudgeon, 2015; Hui et al., 2016; Quill et al., 2014

Core

Treatment of Dyspnea

Treating symptoms or underlying cause

Pharmacologic treatments

Opioids

Nonopioids

Dudgeon, 2015; Hui et al., 2016; Quill et al., 2014

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Core

Symptom at a Glance: Cough

Overview

Causes

Management

Treatment of underlying causes

Suppressant

Dudgeon, 2015

Core

Section III: GI Symptoms

Anorexia/cachexia

Constipation

Diarrhea

Nausea/vomiting

Xerostomia (at a glance)

Core

Section III: GI Symptoms

Anorexia/cachexia

Constipation

Diarrhea

Nausea/vomiting

Xerostomia (at a glance)

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Core

Causes of Anorexia and Cachexia

Primary cause: under investigation

Disease related

Psychological

Treatment related

Wholihan, 2015

Core

Assessment of Anorexia and Cachexia

Physical findings

Impact on function and QOL

Calorie counts/daily weights

Lab tests

Skin breakdown

Wholihan, 2015

Core

Treatment of Anorexia and Cachexia

Dietary consultation

Medications

Parenteral/enteral nutrition

Odor control

Counseling

Smeltz, 2016

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Core

Constipation

Infrequent or difficult passage of stool

Frequent symptom in palliative care

Prevention is key

Core

Causes of Constipation

Disease-related (e.g. obstruction,

hypercalcemia, neurologic, inactivity)

Treatment-related (e.g. opioids, other meds)

Core

Assessment of Constipation

Bowel history

Abdominal assessment

Digital rectal assessment

Medication review

Economou, 2015

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Core

Treatment of Constipation

Medications

Other approaches

Prevention

Economou, 2015

Core

Diarrhea

Frequent passage of loose, nonformed stool

Effects (e.g. fatigue, caregiver burden, skin

breakdown)

Core

Diarrhea



breakdown)

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Core

Diarrhea



breakdown)

Core

Treatment of Diarrhea

Treat underlying cause

Dietary modifications

Hydration

Pharmacologic agents

Core

Nausea and Vomiting

Common in advanced disease

Assessment of etiology is important

Acute, anticipatory, or delayed

Chow et al., 2015;

Lynch, 2016

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Core

Treatment of Diarrhea

Treat underlying cause

Dietary modifications

Hydration

Pharmacologic agents

Core

Causes of Nausea and Vomiting

Physiological (GI, metabolic, CNS)

Psychological

Disease-related

Treatment-related

Other

Core

Assessment of Nausea and Vomiting

Physical exam

History

Lab values

Dehydration

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Core

Pharmacologic Treatment of Nausea and

Vomiting

Anticholinergics

Antihistamines

Steroids

Prokinetic agents

Other

Core

Non-Drug Treatment of Nausea and Vomiting

Distraction/relaxation

Dietary

Small/slow feeding

Invasive therapies

Core

Symptom At a Glance: Xerostomia

Dry mouth

Difficulty in mastication, swallowing, and

speech

Can be caused by medications, radiation, and

systemic diseases

Blush & Larsen, 2015

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Core

Section IV: Psychosocial Issues

Depression

Anxiety

Post-Traumatic Stress Disorder (PTSD)

Delirium/agitation/confusion

Core

Depression

Ranges from sadness to suicidal

Often unrecognized and undertreated

Occurs in 25-77% of terminally ill

Distinguish normal vs. abnormal

Should not be dismissed

Cluster

Fulcher, 2014; Pasacreta et al., 2015

Core

Causes of Depression

Disease-related

Psychological

Medication-related

Treatment-related

Social issues

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Core

Assessment of Depression

Situational factors/symptoms

Previous psychiatric history

Other factors (e.g., lack of support system, pain)

Pasacreta et al., 2015

Core

Suicide Assessment

Risk factors for suicide

History of declining functionality

Psychiatric evaluation

Core

Pharmacologic Interventions for Depression

Goal: Focus on symptom control

Antidepressants (e.g. Amitryptiline- may take 4-6

weeks to be effective)

Steroids (e.g. Dexmethasone)


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Core

Non-Pharmacologic Interventions for

Depression

Promote autonomy

Grief counseling

Draw on strengths

Use cognitive strategies

Core

Anxiety

Subjective feeling of apprehension

Often without specific cause

Categories of mild, moderate, severe

Core

Causes of Anxiety

Physiological changes

Medications and substances

Pre-existing anxiety pre-diagnosis

Uncertainty

Risk factors

Gatto et al., 2016;


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Core

Assessment of Anxiety

Physical symptoms

Cognitive symptoms

Questions for assessment

APA, 2013

Core

Pharmacologic Interventions for Anxiety

Benzodiazepines

Antipsychotics

Antidepressants

Core

Nonpharmacologic Interventions for Anxiety

Empathetic listening

Assurance and support

Concrete information/warning

Relaxation/imagery

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Core

Nonpharmacologic Interventions for Anxiety

Empathetic listening

Assurance and support

Concrete information/warning

Relaxation/imagery

Core

Symptom at a Glance:

Post-Traumatic Stress Disorder (PTSD)

PTSD is characterized by persistent/severe reaction to a traumatic eventCombat

Terrorist attacks

Sexual or physical assault

Accidents

National/natural disasters

Symptom clustersAvoidance

Re-experiencing the event

Hyperarousal

Implications for EOL

Core

Delirium/Agitation/Confusion

Delirium - Acute change in cognition/awareness

Agitation or withdrawal - Accompanies delirium

Confusion - Disorientation, inappropriate

behavior, hallucinations

Heidrich & English, 2015

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Core

Delirium/Agitation/Confusion: Causes

Medications

Infection

Hypoxemia

Bladder distention

Unrelieved pain

Other

Core

Delirium/Agitation/Confusion: Assessment

Physical exam

History

Spiritual distress

Other symptoms

Heidrich & English, 2015

Core

Delirium/Agitation/Confusion: Treatment

Maintain Safety

Pharmacologic

– Neuroleptics

– Monitor for side effects, withdrawal

– Eliminate non-essential/contributing medications

Reorientation

Relaxation/distraction

Hydration

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Core

Section V: General/Other Symptoms

Fatigue (at a glance)

Wound

Seizures

Sleep disturbances (at a glance)

Lymphedema (at a glance)

Urgent syndromes

Core

Symptoms at a Glance: Fatigue

Subjective, multidimensional experience of

exhaustion

Core

Symptoms at a Glance: Fatigue

Subjective, multidimensional experience of

exhaustion

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Core

Assessment of Wounds

Characteristics

Pain

Psychosocial

Caregivers

Core

Treatment of Injuries

Frequent position changes

Injury cleaning

Dressings

Provide analgesia

Seek consultation

Prevention is key

Seaman & Bates-Jensen, 2015

Core

Dilemma: Assessing/Treating Injuries or

Wounds in Patients with Life-Limiting Illness

Assess underlying cause

What are the goals of care?

Is it realistic that the wound will heal?

Prevent further pressure injuries/ulcers/wounds

Manage pain and odor

Pressure injury (ulcer) may indicate organ failure

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Core

Seizures

Definition

Causes

Infections

Trauma

HIV

Tumors

Medications

Metabolic imbalances

Core

Assessment for Seizures

Manifestations

Aura

Mental status changes

Sensory changes

Physical exam

Labs

Core

Treatment for Seizures

Limit trauma

Anticonvulsant treatments

Phenytoin

Phenobarbital

Lorazepam, diazepam

Levetiracetam

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Core

Symptom at a Glance: Sleep Disturbance

Affects quality of life for both the patient and

caregiver

Assessment

Management

Core

Symptom at a Glance: Sleep Disturbance

Affects quality of life for both the patient and

caregiver

Assessment

Management

Core

Symptom at a Glance: Lymphedema

Chronic, progressive swelling due to failure of

lymph drainage

Patients at risk

Side effects

Assessment

Management

Fu & Lasinski, 2015

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Core

One Final Reminder: Be Aware of Symptoms

of Urgent Syndromes

Superior vena cava obstructions

Pleural effusion

Pericardial effusion

Hemoptysis

Spinal cord compression

Hypercalcemia

Bobb, 2015

Core

Conclusion

Multiple symptoms are

common

Coordination of care with the

interdisciplinary team

Use drug and nondrug

treatment

Patient/family teaching and

support

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MODULE 4

ETHICAL ISSUES IN PALLIATIVE

CARE NURSING

Core Curriculum

Core

Sound Familiar?

36-year old wife and mother of 3 refuses further

chemo for stage 4 ovarian cancer. Husband insists

chemo continue.

58-year old man with ALS refuses ventilator and peg

tube placement.

78-year old woman with dementia and Parkinson’s

rushed to ER from nursing home without attention

being paid to her advance directive. Family is furious

that she is now on a ventilator.

Core

Sound Familiar? (cont)

Patient confides in you that he does not want any

further hospitalizations/treatment for stage 4 prostate

cancer, as he knows he will bankrupt his family.

Oncologist insists on clinical trial.

52-year old woman with heart and renal failure +

diabetes has been admitted to the hospital 4 times in

as many months. You have asked the cardiologist for a

palliative care consult—she refuses.

32-year old man with sickle cell disease, begs you to

help him commit suicide so he can be free from pain.

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Core

Responding to Ethical Issues in Palliative Care

Ethical dilemmas emerge daily

Changes in social/family systems have added to

complexity of care

Advances in technology

Landmark cases influence legal/ethical history

Attention to help patients make fully informed

decisions

Core

Common Ethical Dilemmas in Nursing

Euthanasia, assisted suicide, and aid in dying

Prolonging life: balancing benefits vs. burdens

Nursing care and Do Not Resuscitate (DNR) and

Allow Natural Death (AND) decisions

Forgoing nutrition and hydration

Registered nurses’ roles and responsibilities in

providing expert care and counseling at the end of life

Core

Clinical Practice Guidelines

Domain 8: Ethical/Legal Aspects of Care

Goals, preferences, and choices are respected

Palliative care program identifies,

acknowledges, and addresses complex ethical

issues

Provision of palliative care occurs in accordance

with professional, state, and federal

laws/regulations

NCP, 2013

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Core

Standards of Professional Nursing Practice

Scope of practice & standards of care

Codes of ethical conduct

Guidance for responsible end-of-life / palliative

practice

ANA & HPNA Standards

Core

Organizational Ethics

Mechanisms to resolve ethical issues:

Ethics consultation

Ethics committees

Core

Ethical Principles

Autonomy: Making one’s own decision

Beneficence: Intending to do good

Nonmaleficence: Intending to do no harm

Justice: Providing equal access

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Core

Issues of Communication and Shared

Decision-Making

Disclosure Confidentiality

Informed consent

Decision-making capacity

Core


Decision-Making: Marginalized Patients

Decision-making capacity for marginalized groups

Patients with dementia/mental illness

Patients with developmental disabilities

Prisoners

Core


Decision-Making: Laws, Acts, & Documents

Patient Self-Determination

Act

Advance Care

Planning

Natural Death Acts

Advance

Directive

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Core


Decision-Making: Laws, Acting, & Documents

(cont.)

Durable Power of Attorney for HealthCare/Healthcare Proxy

Surrogate

Court-Appointed Guardians

Core

Physician/Provider Orders for Life-Sustaining

Treatment (POLST)

Standardized medical orders

Specific types of life-sustaining treatment

Applicable in life-limiting disease states

A legal document and part of medical record

Travels with the patient

Honored across all care settings

POLST/MOLST/MOST/POST/SMOST/TPOPP

California HealthCare Foundation, 2011;

The California Coalition for Compassionate Care, n.d.

Core

Preventive Ethics

Proactively prevent occurrence of conflicts

Early identification of issues

Knowledge of the natural history of many

illnesses

Understand wishes

of patient/family

Attention to culture

and spirituality

Build communication skills

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Core

Facilitating Ethical and Legal Practice

The Four Box Method

Quality of

Life

Patient

Preferences

Clinical

Indications

Contextual

Features

Jonsen et al., 2015

Core

Case Study:

72-year-old woman with COPD and renal failure

Lives at home alone, has no living relatives

Refuses workup for dialysis

Forgetful regarding taking medications

Fallen twice in 4 months; has dyspnea

Retired x10 years and on Medicare

Concerns regarding this case?

Core

Stop and Consider: Common Fears and Pitfalls

to Avoid

Fears:

“Shooting the

messanger”

Responding incorrectly

Eliciting strong

emotional responses

Not knowing how to

respond correctly

Crying

Anxiety

Pitfalls:

Promising something

you can not deliver

Giving information

when you do not have

all the facts

Reassuring prematurely

Coyle & Kirk, 2016

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Core

Conclusion

Ethical discernment, discourse, decision-making

Address values and understanding of needs

Advocate for patient/family rights

Work closely with other disciplines

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MODULE 6

COMMUNICATION

Core Curriculum

Core

Section I: Overview of Communication

Core

Communication

Terminal illness is a family experience

Imparting information, so individuals may make informed decisions

Requires interdisciplinary collaboration

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Core

Three Journeys Affected by Communication

(or Lack Thereof)

Isolated Journey

Absence of hospice/palliative care

Rescued Journey

Rescue from isolated journey through referral to

hospice/palliative care

Comforted Journey

Palliative care, later to hospice

Wittenberg-Lyles et al., 2011

Core

Patient/Family Expectations

Build rapport

Be honest

Elicit values and goals

Keep family and patient

informed

Communicate with the team

Take time to listen

Provide safe spaceDahlin & Wittenberg, 2015;

Seccareccia et al., 2015

Core

Communication Across the Illness Trajectory

Establishing relationship and sharing

diagnosis/treatment options

Maintaining the connection, exploring goals of

care, and being present

Providing comfort, sharing community resources,

planning funeral rituals, supporting colleagues

McHugh & Buschman, 2016

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Core

Communication with Patients/Family

Ask how much patient/family want to know

Initiate family meetings

Be aware that illness can strengthen or weaken

relationships

Base communication with children on

developmental age

Core

Barriers to Communication

Fear of mortality

Lack of experience

Avoidance of emotion

Insensitivity

Sense of guilt

Desire to maintain hope

Core

Barriers to Communication (cont.)

Fear of not knowing

Disagreement with decisions

Lack of understanding culture or goals

Role relationships

Personal grief issues

Ethical concerns

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Core

Myths of Communication

Communication is deliberate

Words mean the same to sender/receiver

Verbal communication is primary

Communication is one way

Can’t give too much information

Core

Caregiver Assessment Questions

What else is going on?

What is it like at home?

Is the care you are

providing interfering

with your work?

Financial needs?

Who holds the

insurance?

What is most

important/meaningful to

you?

Fears/worries?

What do you hope for

your family?

What kinds of needs do

you have?

Support systems?Dahlin & Wittenberg, 2015;

Goldsmith, 2016

Core

Verbal and Non-Verbal Communication

Includes body language, eye contact, gestures,

tone of voice

80% of communication is nonverbal

Dahlin & Wittenberg, 2015;

Wittenberg-Lyles et al., 2013

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Core

Cultural Considerations

Culture pervades/invades human behavior

Hierarchical structure

Cultural humility

Neubauer, 2016

Core

Guidelines for Encouraging Conversation

Setting the right atmosphere

Does the patient/family want to talk?

Attentive listening

Dahlin & Wittenberg, 2015

Core

Communication: Stages of the Nurse-Patient

Relationship

Initial/introductory phase

Working phase

Termination

Dahlin, 2016

2/20/2020

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Core

Attentive Listening

Encourage them to talk

Be silent

Share your feelings

Avoid misunderstandings

Don’t change the subject

Take your time in giving advice

Encourage reminiscing

Create legaciesDahlin & Wittenberg, 2015

Core

Mindfulness and Presence

Acknowledging vulnerability

Intuition

Empathy

Being in the moment

Serenity and silence

Requires:

du Pre′ & Foster, 2016; Wittenberg-Lyles et al., 2013

Core

Listening Exercise

2/20/2020

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Core

Section II: Communication Techniques: Giving

“The Words”

Core

Communication Techniques/ Examples in

Palliative Care

Build trust

“Warning shot”

“ I regret that I have some

difficult news to share with you”

Acknowledge emotions

“I see this is very upsetting to

you”

Legitimize normalcy of

reaction

“Anyone receiving this news

would be upset”

What is under the emotion?

“What worries you the most?”

Empathy

“I can not imagine how

overwhelming this is”

Strengths/coping

“Where do you find your

strength?”

Use silence

Quill et al., 2014

Core

Communication Techniques/ Examples in

Palliative Care (cont.)

Check that your message

has been heard

“What have we not talked

about today that is important

to you?”

Use the “D” word

“Because you are so ill, I

believe you are dying.”

Expect conflict

Summarize/restate your

understanding

“Let me double-check that I

understand what you said.”

Provide support

“I am here to work with you

and support you.”

Use nonverbals

Quill et al., 2014

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Core

Articulating Empathy: NURSE

Naming

Understanding

Respecting

Supporting

Exploringhttp://www.vitaltalk.org/sites/default/files/quick-guides/NURSEforVitaltalkV1.0.pdf

Back et al., 2008

Core

Communication Strategies to Facilitate End-of-

Life Decisions

Initiate end-of-life discussions

Use words such as “death” and “dying”

Maintain hope

Clarify benefits and burdens

Core

Thought of a Tatoo?

Norals & Smith, 2015

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Core

“I’m Sorry” versus “I Wish”

“ I’m sorry” should be used with great caution

Can be misinterpreted as being aloof, showing pity, or

taking responsibility for outcome

“I wish” statements demonstrates empathy,

but also addresses limits of treatment(s)

“I really wish we had better treatments for your

disease.”

Quill et al., 2014

Core

Communicating the Unexpected Death

Presence is vital

Be clear regarding the cause of the death

“I have some difficult news to share”

Be available to discuss the course of events

Normalize the grief

Provide access to psychological support

Dahlin & Wittenberg, 2015;

Quill et al., 2014

Core

Section III: The Interdisciplinary Team and

Family Members

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Core

Healthcare Professionals Influence

Communication Outcomes

Behaviors and communication style

Lack of personal experience with death and dying

Fear of not knowing the answer

Lack of understanding patient’s and family’s

end-of-life goals

Language barriers

Core

Family Meetings

Patient may attend

Family members

Appropriate clinicians (best to include primary care along with palliative care)

Goal to enhance communication

Core

Family Meetings: When the Patient Has

Developmental Disabilities

Identify unspoken wishes

Invite others to assist with decision-making

Listen, talk, develop trust and rapport

Introduce advance directives early

Recognize differences and similarities

Gentry, 2016

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Core

Family Meetings: Video

Family Conferences for Serious Illness: A Clinician’s

Guide

http://vitaltalk.org/clinicians/family

Core

How Do I Articulate the Way Palliative Care

Can Help?

Improved clinical care

More efficient use of resources

Better care coordination

Cost avoidance

Core

Timing For Conversation is Critical

A good time to talk?

Is there a need to talk?

Has someone else from the interdisciplinary

team already spoken with the patient/family?

Is there an “overload” of information?

Is patient experiencing pain/other symptoms?

Caregiver may be exhausted

Dahlin & Wittenberg, 2015

2/20/2020

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Core

Team Communication

Intra-team communication is vital, especially

between RN and MD

Should be collaborative

Should be effective and frequent

Document

Expect conflicts

Core

When You Have a Team of More Than One,

Expect Conflict

Pay attention to conflict

Find a nonjudgmental starting point

Listen

Identify what the conflict is

Brainstorm options

Look for options

Not all conflicts can be resolved

http://www.vitaltalk.org/sites/default/files/Defusing_Conflicts_V1.0_0.pdf

Back & Arnold, 2005; Dahlin & Wittenberg, 2015

Core

Communication with Physicians Who Are

Unfamiliar with Palliative Care

Honor the relationship physicians have with their

patients

Maintain professional relationship

Be specific about the reasons for the “ask.”

“The nurses on the medical unit state that Mrs. James has

pain and dyspnea.”

“ Mrs. James’ daughter believes her mother's functional

status is declining.”

Palliative care can support the work of attending

physicians

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Core

Communication Vignette: Speaking with

Physician Refusing Palliative Care For

Patient

Core

Summary

Communication is complex

The ultimate objective is to advocate for the

patient’s wishes

Patients and their families must be involved in

communication

Nurse to promote communication among team

members, patients and family

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Core

MODULE 8

FINAL HOURS

Core Curriculum

Core

Section I:

Preparing for a Good Death

The important role of the nurse

Hydration?

Resuscitation?

Hasten death request?

Core

Preparing for Death

Everyone dies

Advance care planning

Recognizing the transition to active dying

Care for the dying

Post death care

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Core

The Nurse, Dying and Death

Nurses provide support to staff,

patients/families

Interpersonal competence

Being present

“Bearing witness”

Interdisciplinary care

Core

Describe a Recent Death You Have Observed

What went well?

Were the patient and family’s wishes honored?

Describe any cultural traditions that were honored.

Was pain controlled, as well as other symptoms?

Was interdisciplinary care evident?

What could have been improved?

What issue(s) could have been prevented?

Are there policies/procedures that need to be developed to

provide better direction?

Core

Open, Honest Communication

Convey caring, sensitivity, compassion

Provide information in simple terms

Patient awareness of dying

Maintain presence

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Core

Dying is an Individualized, Personal

Experience

There is no typical death

Patient preferences

Nurses advocate for choices

Setting of death

Support

Psychological and emotional considerations

Core

What About Artificial Nutrition & Hydration at

End of Life?

Perceptions of “starving to death”

Hydration does not decrease “dry mouth”

Patients who fasted to end their lives experienced

peaceful death

Gabriel & Tschanz, 2015; HPNA, 2011a;Prince-Paul & Daly, 2015

Core

Resuscitation

No advance planning

Unrealistic beliefs regarding survival

Family presence during resuscitation

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Core

Discontinuation of Dialysis

When should dialysis be discontinued?

When burdens outweigh benefits and/or,

When dialysis is no longer prolonging life or

only prolonging death

Core

Organ/Tissue Donation

Regulations

Talking to the family about organ/tissue

transplantation

What can be donated?

Core

Hastened Death Request

Statement made by patient

Progressive incurable illness

Judgment not impaired

Intervention to cause death more immediately

than if illness took its natural course

Assisted suicide/dying

Clinician-assisted

Stopping eating and drinking

Other means

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Core

Psychosocial Changes

We only die once

Fear of dying

Feelings of loss

At end of life, patient may be more introspective

Core

Spiritual Considerations When Death is

Imminent

Core

Case Study: Gail

62-year-old woman diagnosed with stage IV ovarian

cancer 16 months ago

Admitted to the hospital with a bowel obstruction,

cachexia, and dehydration 1 week ago

3 adult sons

Divorced

“Spiritual,” but not affiliated with any religion

Served in the Army for 20 years

Home hospice

2/20/2020

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Core

Section II: Frequent Symptoms Associated

with Imminent Death

Core

Two Roads to Death

NORMAL

THE USUAL

ROAD

THE DIFFICULT

ROAD

Sleepy

Semicomatose

Lethargic

Comatose

Seizures

Myoclonic Jerks

Mumbling Delirium

HallucinationsTremulous

Confused

Restless

DEAD

Obtunded

NCI, 2016

Core

Physical Symptoms Vary

Confusion,

disorientation, delirium

vs. unconsciousness

Weakness and fatigue

vs. surge of energy

Drowsiness, sleeping

vs.

restlessness/agitation

Physical

considerations:

Fever

Bowel changes

Incontinence

Decreased intake

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Core

Most Common Symptoms in Final Days of Life

Dyspnea

Terminal Secretions

Delirium

Myoclonus

Core

Pain During the Final Hours of Life

Changes in level of consciousness may make

assessment and management of pain challenging.

If self-report is not possible, behavioral cues, proxy

report, analgesic trials

What is causing the pain?

Core

Opioids

Dosing of opioids given during last hours based on appropriate assessment and reassessment.

Dose may be decreased or increased

Consider other routes:

Oral

Rectal

Subcutaneous

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Core

What About the Principle of Double-Effect?

Is it morally permissible?

Intent

There will always be a last dose.

Core

National Comprehensive Cancer Network

(NCCN): Guidelines for Treating Pain Weeks to

Days Before Death

Titrate to comfort

Recognize and treat

toxicities

Analgesia vs. reduced

LOC

Use equianalgesic

dose conversions

Consult

Consider sedation for

refractory pain

Core

Controlled Sedation at End of Life

All possible etiologies and treatments

Education of patient/family regarding goals and

outcomes

Interdisciplinary team approach

Medications

Consider:

2/20/2020

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Core

Symptoms of Imminent Death

Decreased urine output

Cold and mottled extremities

Vital sign and breathing changes

Delirium / confusion

Restlessness

Core

The Death Vigil

Family presence

Common fears

Opportunities for nurses

Core

Case Study: Gail (cont)

Gail is now unconscious

Pain assessment

Reassurance to family

Death rattle

Concerns about dehydration

2/20/2020

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Core

Section III: Bereavement Care

Core

Care Following Death

Communication with the family

Prepare family for next steps

Technical tasks

Core

Care and Respect of the Body

Reflects importance and value of the patient

Respect family rituals

Allow family to provide physical care

Comb hair

Wash face/body

Hold hand, kiss, hug

Berry & Griffie, 2015

2/20/2020

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Core

Bereavement Support

Follow up

Other staff

Bereavement services

Core

Death of a Parent….Remember the Children

Be aware of the developmental stage of the child

Communicate openly and honestly

Children need opportunities to ask questions

Questions should be answered in terms that they

can comprehend

Core

Case Study: Gail (cont)

Gail died the next day with her husband and 3 sons

at her bedside

Bereavement care

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12

Core

Relias Vignette #6:

Loss/Grief/Bereavement

Core

Conclusion

Family members will always remember the last days,

hours, and minutes of their loved one’s life. Nurses

have a unique opportunity to be invited to spend

these precious moments with them and to make

those moments memorable in a positive way.

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1

MODULE 7

LOSS, GRIEF, & BEREAVEMENT

PART I: OVERVIEW

Core Curriculum

Core

Sound Familiar?

Susan, a single mom: Her only son was killed in a

motor cycle accident

Joshua and Heather: Their 21-year old daughter

committed suicide

Martin: Partner died of a heart attack

William: Wife of 60 years died from complications

of diabetes

Core

You Know These Stories Well

You witness similar deaths frequently

You see much grief

There are times you witness moral distress

How do you process all the grief?

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Core

Definitions

Loss: Absence of an object, position, ability, or

attribute

Grief: Reaction to a loss

Bereavement: Provides dispensation from usual

activities for a variable period of time.

Mourning: Refers not so much to the reaction to the

loss but rather to the process of integrating the loss

into everyday life.

Corless, 2015

Core

Overview of Loss, Grief, and Bereavement

Patient, family, and nurse all experience losses

Each person grieves in his/her own way

An interdisciplinary approach is vital

Core

Nurse’s Role

Assess the grief

Assist the patient with grief

Support survivors

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Core

A Grief and Bereavement Program is a Core

Component of the Palliative Care Program

Interdisciplinary team

On-going reassessment

On-going support staff

Complicated grief risk(s)

Intensive support and prompt referrals

Bereavement services available at least 12 months after

death of loved one

Culturally and linguistically appropriate information

Respect of developmental, cultural, and spiritual needsNCP, 2013

Core

What are Patients Basic Needs at the End of

Life?

Control physical symptoms

Shelter

Assistance with elimination and hygiene

Nourishment, fluids, if possible

Companionship

Recognition of their continued existence

McHugh & Buschman, 2016

Core

The Grief Process

Both loss and growth can occur—but distress

will still be experienced

Emotional ‘waves’/oscillation is normal and

expected

Grief? Or depression?

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Core

Types of Grief

Anticipatory Grief

Acute Grief Normal Grief

Complicated Grief

Disenfranchised Grief

Corless 2015; Shear, 2015

Core

Grief Assessment

Begins at time of admission or diagnosis

Should be ongoing to detect complicated grief

Corless, 2015

Core

Beyond Kübler-Ross: New Perspectives on

Death, Dying, and Grief

Kübler-Ross taught about listening and

humanizing care

Evidence of “individual pathways” vs. “stages.”

40 years later, dying is different

More chronic illness with prolongation of life via

technology

2/20/2020

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Core

Core

Section II: Factors Influencing the Grief

Process in Families

Survivor personality

Coping skills, patterns

History of substance abuse

Relationship to deceased

Spiritual beliefs

Type of death

Survivor ethnicity and culture

Core

Bereavement Care: Opportunities for Nurses

The reaction of the survivor to the death of a

family member or close friend.

The adjustment to a life without the deceased

family member of close friend.

Be aware of cultural characteristics.

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Core

“Transitions of Fading Away”

Redefining

Burdening

Struggling with paradox

Contending with change

Searching for meaning

Living day to day

Preparing for death

“The dimensions do not occur in linear fashion; rather, they are

interrelated and inextricably linked to one another.”

Steele & Davies, 2015

Core

Caregiving: The Human Toll

Caregivers are an extension of the healthcare

workforce- they work 24/7

Most patients have “family” caregivers

Multiple and varied duration, different involvement

Average involvement- 8.8 hours/day

Over 4 years of caring + 14-24 months during treatment

Provide at least 70-80% of the physical care at home

van Ryn et al., 2011

Core

What Do Family Caregivers Want When They

Are Grieving?

Loved one’s wishes honored

To be included in decision-making

Practical help

Honesty

To be listened to

To be remembered

Know they did all they could possibly do

Northouse & McCorkle, 2010

2/20/2020

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Core

Grief Assessment of Family Members

A general health checkup and assessment of somatic symptoms

Ability to maintain work and family roles

Major changes in presentation of self?

Assessment of changes resulting from the death and the difficulties with these changes

Assessment of social networks

Corless, 2015

Core

Need for Further Assistance?

Clinically depressed?

Prolonged deep grief?

Extreme grief reaction?

Self-destructive behavior?

Increased use of alcohol and/or drugs?

So preoccupied with the deceased that they exclude others?

Lack of social support?

Corless, 2015

Core

Grief Interventions for Survivors: Listen to

Their Story

Provide presence

Engage in or use active listening, touch, silence,

reassurance

Identify support systems

Use bereavement specialists & resources

Normalize & individualize the grief process

Actualize the loss & facilitate living without

deceased

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Core

Everyone Has a Story

View this video from the Johns Hopkins Breast

Center, which holds transformational weekend

retreats for stage IV breast cancer survivors:

https://www.youtube.com/watch?v=Bg02G2a7uHo

(12 minutes, 45 seconds)

Core

Children’s Grief

Based on developmental stages

Can be normal or complicated

Symptoms unique to children

Core

Bereavement Interventions for Children,

Parents, and Grandparents

Recognize developmental stage of child

Refer to support groups

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9

Core

Grief Support Should Be Provided in a Variety

of Ways

On-line support

Bibliotherapy

Individual counseling

Group support

Community support

Rituals

Core

Completion of the Grieving Process: Is It

Possible?

Grief work is never

completely finished

Healing occurs when

the pain is less

Letting go

Core

Case Study

Susan, age 54, is a caregiver to her partner Tom, age

72.

They have lived together for 6 years.

Tom was diagnosed with ALS 2 years ago.

His disease is progressing rapidly and he has just

returned home after 4 weeks in the ICU.

He is now on a ventilator.

Susan is exhausted, she can’t sleep or eat.

They have little community/family support.

2/20/2020

10

Core

Section III: The Nurse: Prevention of

Compassion Fatigue

Nurses witness:

Medical futility

Prolongation of suffering

Denial of palliative care

services

Nurses experience:

Moral distress

Core

Sound FamiliarYou just finished a long day

and you were supposed to

join friends at the pool for

water aerobics. You decide

you are too tired, so you drive

through McDonald’s for a

quick dinner.

Your oldest son plays

basketball on his junior high

team. The season is almost

over, and you have yet to go

to a game, because of other

commitments.

Instead of looking at what is

around you (trees, blue sky,

and a few birds passing by)

you are stressed because

traffic is jammed.

Your boss has called you in

twice over the past 2 months

because patients/families

have reported your rude

behavior.

You haven’t been away on

vacation in over 5 years.

Core

Hazards in the “Helping Professions”

“Everyone who cares about patients is at risk of

eventually being injured, to a greater or lesser

extent, by the hazards of frequent encounters

with illness, injury, trauma, and death—not

because we did something wrong, but because

we care. Ironically, those who are burned out,

worn down, fatigued, and traumatized tend to

work harder.”

Fox et al., 2014

2/20/2020

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Core

Cumulative Loss

Core

Occupational Stress in Hospice and

Palliative Nursing

Workload Control Reward

Community Fairness

Vachon, 2011

Values

Core

A Word About “Bullying”

Repeated mistreatment and

abusive conduct that is

threatening, humiliating, or

intimidating, work sabotage,

or verbal abuse

27% stated that they have

had past or present

experience with being the

victim of workplace bullying

72% of the American public

are aware of workplace

bullying

72% of employers deny,

discount, encourage,

rationalize or defend it

Bosses are the majority of

bullies

Institutions must have a

robust approach to address

bullying and harassment

and provide policies and

access to confidentially

report these behaviors

WBI, 2014

2/20/2020

12

Core

A Word About “Bullying”

Repeated mistreatment and

abusive conduct that is

threatening, humiliating, or

intimidating, work sabotage,

or verbal abuse

27% stated that they have

had past or present

experience with being the

victim of workplace bullying

72% of the American public

are aware of workplace

bullying

72% of employers deny,

discount, encourage,

rationalize or defend it

Bosses are the majority of

bullies

Institutions must have a

robust approach to address

bullying and harassment

and provide policies and

access to confidentially

report these behaviors

WBI, 2014

Core

Self-Awareness:

Being Proactive With Caring for Ourselves

Attention

Acknowledgment

Affection

Acceptance

Fox et al., 2014

Core

Leading by Example

“Administrators set the tone for the organization. It is

vital that they provide a workplace where people are valued

for not only what they can do for the institution, but what

they can contribute in their homes, the next generation, and

to communities. Understanding the importance of being well-

rounded, taking time off for reflection and rest, and caring for

needs outside of the institution are valuable traits of an

administrator. “Malloy et al., 2013

2/20/2020

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Core

Factors Influencing the Nurse’s Adaptation

Professional education

Personal death history

Life changes

Support systems

Vachon et al., 2015

Core

Conclusion

Nursing care does not end with

the death of a patient

Nurses must recognize and

respond to their own grief

Bereavement care is

interdisciplinary care

Nurses must role model excellent

care