It s all about living palliative medicine
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It’s All About Living: Palliative Medicine. By Jacqueline A. Carrillo, MSN, FNP-BC DNP Candidate. Disclosure. No relevant financial disclosures to report. What is Palliative Care?. What it is NOT? Not- limited to End-of-Life Care Not- synonymous with Hospice

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It s all about living palliative medicine

It’s All About Living: Palliative Medicine


Jacqueline A. Carrillo, MSN, FNP-BC

DNP Candidate


  • No relevant financial disclosures to report

What is palliative care
What is Palliative Care?

  • What it is NOT?

  • Not- limited to End-of-Life Care

  • Not- synonymous with Hospice

  • Not- elimination of curative care

Palliative care
Palliative Care

  • NOT

    • “giving up”

    • “accelerating death”

    • “in place of” curative or life-prolonging care

    • the same as hospice

  • IS

    • Evidence based medical treatment

    • Vigorous care of pain and symptoms through illness

    • Care that patients may want at the same time as treatment to cure or prolong life

It s all about living palliative medicine

Hospice Care

Life Prolonging Care

Life Prolonging


Hospice Care



Palliative Care



Conceptual Shift



It s all about living palliative medicine

Palliative Care Model

Hope for cure, life extension, a miracle…

Individualized blending of care directed

at underlying illness


physical, emotional, social, and spiritual

needs of child and family

with continuous reevaluation and adjustment

End-of-life care

Bereavement care

Hope for comfort, meaning…

Types of services






Goals of palliative care
Goals of Palliative Care

  • Enhance Quality of Life - Connection of multiple services

  • Decrease Suffering of Patient and Family- Bereavement

  • Promote Life Care Plans - Understanding Choices

Types of palliative care patients
Types of Palliative Care Patients

  • Chronic, complex conditions (CCC)

  • Potentially Life-threatening or life-limiting conditions

  • Pain

  • Symptom Management

Where does death occur
Where does death occur

  • Less than ___ die at home

  • ____ received invasive treatment with 3 days of death

  • Less than ____ have discussed Advanced Directives with anyone

Areas of domain for the aprn
Areas of Domain for the APRN

  • Clinical Judgment

  • Scientific Knowledge

  • Professionalism

  • Education and Communication

  • Evidence-Based Practice, Quality Improvement and Research

  • Systems Based Practice

Clinical judgment
Clinical Judgment

  • Assessments – HPI, Pain and Symptoms, ROS, Spiritual History, Social History, dysphagia, depression, grief, functional, dementia, other specialty assessments

  • Physical Examination – including intermittent changes

  • Advanced Care Planning – Health Care Surrogate, Advance Directive, Medical Orders for Life Sustaining Treatment

  • Information Sharing – Patient, family, cultural considerations and language sharing

Clinical judgment continued
Clinical Judgment (continued)

  • Diagnosis and Planning – risk/benefits/burden, considerations of outcome of potential “standard” orders

  • Intervention and Evaluation – education is part of treatment, resource identification, consider settings and realistic ability to implement intervention, goals of each

Aprn expertise and symptom management
APRN Expertise and Symptom Management

  • Pain

  • Dyspnea

  • Fatigue

  • Nausea and Vomiting

  • Depression

  • Thrush

  • Edema

Symptom management pain
Symptom Management- Pain

  • Nonpharmacologic

    • Relaxation: imagery, meditation, biofeedback, hypnosis

    • Distraction, control, choices

    • Body work: massage, healing touch, acupuncture

    • Expressive therapy: art, dance/ movement, play, music

    • Heat/ cold

    • Hypnotherapy

    • Biofeedback

    • Yoga

    • Reflexology

    • Spiritual care

Scientific knowledge
Scientific Knowledge

Use of Advanced Skills

Palliative care referral serious chronic illness
Palliative Care Referral - Serious, Chronic Illness

  • Patient/Family request for comfort care

  • Request for hospice information/ appropriateness

  • Patient or Family psychological or spiritual distress

  • Declining ADL’s

  • Weight Loss

  • Multiple Hospitalizations

  • Difficult Symptom Control

  • Uncertainty of Prognosis/Goals of Care

Palliative care referral serious chronic illness1
Palliative Care Referral- Serious Chronic Illness

  • Mechanical ventilation in patient with

    • Metastatic cancer and declining function

    • Moderate to severe dementia

    • One or more chronic disease with poor functional status at baseline

    • Family Distress impairing surrogate decision making

  • DNR Conflicts

  • Use of Tube Feeding or TPN in cognitively impaired or seriously ill patients

  • Limited social support and a serious illness

  • Multi-organ failure

  • Long hospitalization or 2 or more ICU admissions within same hospitalization


Suffering is a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted. It lasts until the threat is gone or integrity is restored.

The meanings and the fear are personal and individual, so that even if two patients have the same symptoms, their suffering would be different.

Eric Cassel, MD


Professionalism as aprn s and palliative care
Professionalism as APRN’s and Palliative Care

  • Ethics- Principles

    • ANA Code of Ethics for Nurses “The aims of nursing actions are to protect, promote and optimize health; prevent illness and injury; alleviate suffering ANA, 2010

    • The goal of hospice and palliative nursing “is to promote and improve the patient’s quality of life through relieve of suffering along the course of the illness” (HPNA, 2014)

  • Scope, Standards and Guidelines

    • Federal and State Definitions of APRN

    • Definition of Hospice and Palliative Nursing (NBCHPN, HPNA)

    • Advanced Certification in Hospice and Palliative Nursing

Professionalism and survivorship
Professionalism and Survivorship

  • Self-Care and Support

    • Reduce/Mitigate stress points

      • Role clarity, budget, etc

      • Exposure to death, crisis, stress, care many find uncomfortable

    • Time Strategies for Self Care

      • Away from work, new projects, team activities, education, control over daily schedule and time management

  • Leadership and Self-Development

    • Moving the profession of nursing forward in changing clinical practice, education, quality and research, advocate, mentor, collaborator, administrator, case manager and consultant

Education and communication
Education and Communication

Information is a never ending resource


  • WHAT

    • Palliative Care goals, services, functions

    • Disease/illness in relation to the patient and potential progression

    • Treatment benefits/burdens from physical, psychological and SOCIAL perspectives

    • Advance Directives/Goals of Care

  • WHO

    • Patients

    • Families

    • Health Care Teams

    • Healthcare Communities

    • General Public



Advanced Skills

Compassionate Listening

Mindful Presence

Mindful Care

Relationship Based Care

  • Conversations after Bad News – (cure, extent of life, quality and symptomology)

  • Maintaining trust, hope, boundaries and compassion

  • Cultural preferences

  • Conflict Resolution

  • Timely, genuine, honest

  • Attention to terminology

Narrative as intervention
Narrative as Intervention

  • Making & Supporting relationships

  • Situational Identity

  • Social Roles

  • Dignity

  • Constructing meaning/ understanding losses

  • Identity “I am…”

  • Legacy

  • Spirituality


Situational Identity


If it is offered it should be done

If there is love, they would want to stay with us as long as possible

  • Am I a good patient?

  • Am I doing what my family wants?


Social Roles/ Dignity


Treatment is the only way to prolong life

You need to have decisions made for you now

Don’t give up.

We don’t want others to see

Go “down fighting”

  • Am I seen as a fighter? Maintaining roles?

  • Is my life seen as complete?

  • How will I be remembered?

  • How will I die?

It s all about living palliative medicine

The Plan for Repeated Decisions

Key Decisions for Long-Term Health Problems to Aid in Goal-Making: Long and Short Term

Maximize Quantity of Life

(More Time in One’s Life)

Prioritize Which Goal ?

Grave Health Problem

Maximize Quality of Life

(More Life in One’s Time)

Palliative Care often times increases both Quality and Quantity

Partially developed from Jackson, V. Massachusetts General Hospital

Evidence based practice
Evidence-Based Practice

  • Evidence Based Guidelines

    • National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Care, Third Ed.

    • National Quality Forum A National Framework and Preferred Practices for Palliative and Hospice Care Quality (2006)

    • National Comprehensive Cancer Network Guidelines for Palliative Care. (2013)

  • Evidence-Based Practice

    • Cochrane Library

    • Agency for Health Research and Quality (AHRQ)

    • Institute for Healthcare Improvement (IHI)

    • National Consensus Project for Quality Palliative Care (2013) Clinical Practice Guidelines for Quality Palliative Care, Third Ed

    • NIH, NINR

Quality improvement
Quality Improvement

Seek Certification

The Joint Commission Advanced Certification for Palliative Care ( )

Be an Advocate in Policy Making Environments

(HPNA Ambassadors)

  • Quality Improvement

    • Leadership

    • Implementing/utilizing evidence-based tools

    • Performance Measurements (Performance Measurement Coordination Strategy for Hospice and Palliative Care.


  • Hospice and Palliative Nurses Association. 2012 Research Agenda 2012-2015. (

  • Hospice and Palliative Nurses Association. 2012a Role of Hospice and Palliative Nurses in Research. Pittsburg, PA: HPNA (

  • Responsibilities

    • Promote, participate and develop, disseminate

  • Research Areas

    • Nursing Discipline Specific

    • Palliative Specialty

  • Activities

    • Critical analysis, critique, interpretation, review

    • Implementation, incorporation

Systems based practice

Systems Based Practice

It’s All About Living

Systems based practice1
Systems Based Practice

  • Continuum of Care

  • Across all settings

  • Inter-related specialties

  • Strategies to promote quality

  • Incorporate influences of culture, spirituality and finances

  • Resource Access and Utilization

    • Stewardship of resources

    • Population Considerations

    • 24/7 Access?

Care team models
Care Team Models

  • Collaboration

  • Mandated by CMS

  • No one model

  • Can be led by APRN’s and/or MD’s.

  • Possible team members

    • Social Workers, Chaplains, PT/OT/ST, RN’s, NA’s, NP’s, MD’s, CNS’s,

Benefits to patients

  • Offering a total approach to caring for patients being treated for serious illnesses and their families.

    • Increase relief of illness induced suffering (pain [30%], dyspnea [80%], anxiety [35%], fatigue [60%], pain [75%], N/V [60%], constipation [75%], diarrhea [90%])

    • More prepared for decision-making/options [75%]

Wolfe et al JCO 2008

Palliative care1