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4/3/2018

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MNHPC 28th Annual Conference | April 8-10, 2018 www.mnhpcconference.org

Primary Palliative Care in Every Setting: The

Challenge Nancy Joyner, MS, CNS-BC, APRN, ACHPN®

Nancy Joyner Consulting, P.C.


• Distinguish primary palliative care from specialized palliative care.

• Identify seven major skills that can be utilized in primary palliative care.

• Develop a strategy to incorporate primary palliative care in your community.

Objectives


First, What is Palliative Care?

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• Patient- and family-centered care

• Optimizes quality of life

• Anticipate, prevent, and treat suffering throughout the continuum of illness or injury

• Through the provision of holistic person-centered care (physical, intellectual, emotional, social, and spiritual)

• Support autonomy through informed decision-making

• Includes care of the dying, i.e., hospice care.

• Provided by inter-professional teams -recognize and address the breadth of patient and family needs

• Palliative care is by its very definition team-based care

Defining Palliative Care NCP,2013, ANA,2017


Palliative (Latin): To Cloak or Cover, to alleviate,

“to reduce the violence of”

“ An approach which improves the quality of life of patients and families facing life threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.”

(www.who.int/en)

What is Palliative Care?

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• Provides relief from pain and other distressing symptoms.

• Affirms life and regards dying as a normal process.

• Intends neither to hasten or postpone death.

• Integrates the psychological and spiritual aspects of patient care.

• Offers a support system to help patients live as actively as possible until death.

(www.who.int/en)

WHO Definition of Palliative Care (cont)

Palliative Care: YOU Are a Bridge (Original from the MN Network of Hospice and Palliative Care, now Getpalliativecare.org)


• 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

(ELNEC,2017)

Characteristics of Palliative Care Philosophy and Delivery

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Current Practice of Hospice and Palliative Care

Palliative Care Model

(Ferris et al, 2001)

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“Modern

Medicine” Hospice

Palliative

Care

Physical

Functional Ability

Strength/Fatigue

Sleep & Rest

Nausea

Appetite

Constipation

Pain

Psychological

Anxiety

Depression

Enjoyment/Leisure

Pain Distress

Happiness

Fear

Cognition/Attention Quality of Life

Social

Financial Burden

Caregiver Burden

Roles and Relationships

Affection/Sexual Function

Appearance

Spiritual

Hope

Suffering

Meaning of Pain

Religiosity

Transcendence

http://prc.coh.org 1


• Nurses often the constant

• Expanding the concept of healing

• Becoming educated

• Primary (generalist) Palliative Care – Physician, Providers – APRNs, RNs – LSW – Chaplains

Extending Palliative Care Across Settings

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What is Primary Palliative Care?


• Essential palliative care services

• Deliver high-quality primary palliative care to all patients

• Integrated in routine medical care

• Improve symptom burden, quality of life, and patient & caregiver satisfaction

Primary Palliative Care


• Comfort-Management of disease-related complications, pain and symptom control, psychological and spiritual care, care of the dying

• Communication- Informed coordination of care or continuity.

• Choices- Information, time-limited trial with goals

• Control- Patient-centered, shared decision making, capacity versus substitute decision making

Features of Primary Palliative Care – The 4 C’s of Palliative Care

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Primary • Basic management of pain & symptoms • Basic management of depression & anxiety • Basic discussions about prognosis, goals of treatment, suffering, code

status

Specialty • Management of refractory pain or other symptoms • Management of complex depression, anxiety, grief, existential distress • Assistance with conflict resolution regarding goal or methods of

treatment- within families, between staff & families, among treatment teams

• Assistance in address cares of near futility, non-beneficial (Quill & Abernathy, 2013)

Skill Sets for Primary and Specialty Palliative Care


1. Assessment and Management Pain & Symptoms - nausea, vomiting, dyspnea, anxiety, impaired sleep, xerostomia

2. Communication, Goals of Care Planning and Shared Decision Making

3. Advance Care Planning

4. Appropriate Palliative Care and Hospice Referral

5. Care at the End-of-Life

6. Caregiver support

7. Care Coordination/Continuity of Care

(

Top Palliative Skills for Primary Palliative Care


• Pain and Symptom Assessment and Management

• Relieve distress and suffering

• 2nd Domain- National Consensus Project (Eight Domains of Palliative Care)

• Quality of Life Factors

• Intensity

• How do they affect the person’s ability to function

• Resources: – National Comprehensive Cancer Network (NCCN) Guidelines

– HPNA E-Learning and Position Statements

– MNHPC resources

First- To Comfort Always

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• Preparation

• Skills

• Information requested versus information known

• Risks, Benefits, Burdens and Expected Outcomes

• Hope versus Truth Telling

• Disease Trajectories

#2 Important Conversations

ELNEC, 2017


• Explore available treatments

• Benefits vs burdens, expected outcomes

• Emergency interventions

• Code status discussions

• Goals of Care Planning

• Facilitating Family Meetings

(CHF, 2015)

Prognosis, Treatment Options and Implications of Treatment

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Maintaining Hope and Truth Telling • Balance between maintaining hope /truth telling • Hope may change • Ask "What are your hopes for the future?" • Discuss upcoming events they wish to participate in – a wedding, birth,

trip, etc.- options of plan A and B based on health. • Encourage the patient to make short, medium, and long range goals

with an understanding that the course of terminal illness is always unpredictable.

• Support the patient in recognizing and grieving their possible losses. • Utilize “I wish…” statements -– “I wish there was more we could do for

your disease but what if time may be getting short? • Review patient values & wishes- what matters most

(Warm & Weissman, 2015, Guila, 2017)

Advance Care Planning-More than a Form • Advance Care Planning

– Life Long Process

– Discussion

• Patient’s understanding- diagnosis, prognosis

• Patient’s values, goals, preferences

• Patient’s options

– Documentation

-Healthcare Directives- agent, living will

-Code Level – inpatient/ out of hospital

-POLST Care Continuum Toolkit:www.polst.org/toolkit

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How Much Can We Share?

• What is their understanding

• What do they want to know- how much?

• Team approach

• Generalization

• Neutral value

Patient Wishes for Healthcare

Advance Care

Planning

POLST

The Process

HCD

A facilitated, on-going process

A patient-directed document

Physician orders that translates patients wishes into medical orders

Our Role in the POLST Paradigm

• Maximum Communication

• Education

• Clarification

• Team and family conferencing

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What is Hospice? • Middle ages “way-” - station for pilgrims • Life as a journey • A service delivery system • Provides palliative care • Limited life expectancy, terminal illness • Requires comprehensive biomedical,

psychosocial, and spiritual support • Supports patient through the dying process • Supports family through the dying and bereavement process

#4 Appropriate for Palliative Care or Hospice?


• Living not about dying

• Quality of life vs. focus on quantity

• Comfort-pain, symptoms, distress management

• Conversations

• Living well

• Preparing for dying

• Avoiding missed opportunities- closure

( Milone-Nuzzo et al,2015, Gibson,2016

Hospice is about


• Getpalliativecare.org

• Hospice conversations Hospice Enrollment

Introducing Hospice to Patients & Families

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Coverage Indications, Limitations, and/or Medical Necessity

1. A. Physician’s Certification-be determined to have a terminal illness (prognosis is a life expectancy of six months or less if the terminal illness runs its normal course)

“Would you be surprised if

your patient died in the next 6 months”

(NHPCO.org website)

Coverage Indications (cont.)

1. B. Clinical variables – Primary diagnosis – Secondary and other diagnoses

– Co-morbidities- presence & severity of significant COPD, CHF, ischemic cardiomyopathy, diabetes, neurologic disease, renal failure, cancer, AIDs or dementia

– Additional indications 1. C. Clinical Decline • Nutrition • Function/Performance

– Karnofsky scale – ECOG scale – Palliative Performance Scale

(medicare,gov, nhpco.org)

General Hospice Criteria CMS regulations Local Coverage Determinations (LCDs)

• Objective disease progression

• Increased hospitalizations, emergency room visits or physician visits

• Intractable symptoms

• Recurrent infections or fever

• Worsening clinical status

• Refractory edema or plural

effusion

• Inability to perform activities of daily living (ADL) plus decline in performance status

• Malnutrition, refractory weight loss

• Ascites

• Co-morbidities

( Milone-Nuzzo et al,2015, Gibson,2016 , medicare,gov, nhpco.org).

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Coverage Indications (cont. p 3)

2. Patient’s Wishes (or Surrogate)

• To stop treatment

• Not to return to hospital

• Seeking Comfort Cares Only

3. Must elect hospice care by signing an election statement

( Milone-Nuzzo et al,2015, Gibson,2016 , medicare,gov, nhpco.org).

Hospice Levels of Care ( Milone-Nuzzo et al,2015, Gibson,2016 , medicare,gov, nhpco.prg).

1. Routine home care 2. Continuous home care 3. Inpatient respite 4. General Inpatient (GIP)/Short Term Inpatient (STIP) Change in level of care requires: • Discussion with IDT • Patient/family agreement • Changes in status and in plan of care • Physician order • Explicit documentation in the record • Vigilance and visits while patient in facility


• Signs and symptoms of impending death are recognized and communicated

• As patients decline, team introduces or reintroduces hospice

• Signs/symptoms of approaching death are developmentally, age, and culturally appropriate

#5 Care at the End of Life (Domain #7 National Consensus Project

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Dying is an Individualized, Personal Experience

• There is no typical death

• Patient preferences

• Team advocate for choices

– Setting of death

– Support

• Psychological and emotional considerations

How Culture Influences Serious Illness, Dying and Death

Culture affects:

Views of death

Social customs

Relationships

Decision-making

Preparing for a Good Death

• The important role of the team

• Hydration?

• Resuscitation?

• Hasten death request?

• Palliative sedation?

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Preparing for Death

• Everyone dies

• Advance care planning

• Recognizing the transition to active dying

• Care for the dying

• Post death care

Open, Honest Communication

• Convey caring, sensitivity, compassion

• Provide information in simple terms

• Patient awareness of dying

• Maintain presence

Two Roads to Death

NORMAL

THE USUAL ROAD

THE DIFFICULT ROAD

Sleepy

Semicomatose

Lethargic

Comatose

Seizures

Myoclonic Jerks

Mumbling Delirium

Hallucinations

Tremulous Confused

Restless

DEAD

Obtunded

ELNEC, 2017

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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

Most Common Symptoms in Final Days of Life

• Dyspnea

• Terminal Secretions

• Delirium

• Myoclonus

Symptoms of Imminent Death • Decreased urine output

• Cold and mottled extremities

• Vital sign and breathing changes

• Delirium / confusion

• Restlessness

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Care Following Death, Respect of the Body

• Communication with the family

• Prepare family for next steps

• Technical tasks • 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

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

Bereavement Support • Anticipatory grief

• Continuum through dying and death (immediacy)

• Bereavement period of 13 months (hospice)

• Social, spiritual cultural aspects of care • Follow up

– Other staff – Bereavement services

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Ongoing Remembrance Family members will always remember the last days,

hours, and minutes of their loved one’s life. Healthcare professionals have a unique opportunity to be invited to spend these precious moments with them and to make

those moments memorable in a positive way.


Study of 475 family members 1-2 years after bereavement • Loved one’s wishes honored • Inclusion in decision processes • Support/assistance at home • Practical help (transportation, medicines, equipment) • Personal care needs (bathing, feeding, toileting) • Honest information • 24/7 access • To be listened to

#6 Care for the Caregiver

What Matters Most? • Defining their own goals for care

• Focus on quality or quantity?

• Encouraging family & patient to say important things- the last one

• Spiritual Care is extremely important

• Life review, telling stories, and giving permission to laugh

• Giving the patient found meaning in the life that is ending?

• Leaving a legacy

• Reconciliation

• Who’s missing from the picture ?

• Important phone calls

• Final wishes (video, Parent’s Wish on YouTube) (David, D., 2010)

https://youtu.be/klGEDaGEd5I

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A Parent’s Wish


• Goals of Care Discussions

• The Bridge Philosophy

• The Patient Advocate

• The Third arm of a triangle

• Choices of Opt in/Opt Out- Explore all options

• Time Limited Trial

#7 Care Coordination/ Continuity of Care

Patient

Provider Advocate


1. Time-based model- based on chronological criterion

2. Provider-based (palli-centric) model which discusses primary, secondary and tertiary palliative care

3. Issue-based (onco-centric) model which illustrates the advantages and disadvantages of the solo practice, congress and integrated care approaches

4. System-based (patient-centric) model which emphasizes automatic referral based on clinical event

(Hui & Bruerra, 2015)

Models of Integration for Primary Palliative Care Delivery

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Discussion:

What are Strengths in your community?

What Resources are present?

What Model would work?

Individual Community Strengths and Resources


Ahia, CL & Blais, CM. (2014). Primary Palliative Care for the General Internist: Integrating Goals of Care Discussions into the Outpatient Setting. Ochsner Journal 14(4):704-711

ANA (2017). Call for Action: Nurses Lead and Transform Palliative Care. http://www.nursingworld.org/MainMenuCategories/ThePracticeofProfessionalNursing/Palliative-Care-Call-for-Action/Draft-PalliativeCare-ProfessionalIssuesPanel-CallforAction.pdf

ASCO. (2015). Panel Recommends Primary Palliative Care Services for Medical Oncology Practices. https://www.asco.org/about-asco/press-center/news-releases/panel-recommends-primary-palliative-care-services-medical

IOM. (2014). Dying In America Report.

California Healthcare Foundation (CHF). (2015). Weaving Palliative Care into Primary Care: A Guide for Community Health Centers. https://www.chcf.org/wp-content/uploads/2017/12/PDF-WeavingPalliativeCarePrimaryCare.pdf

References


Ceronsky, L. (2017). What’s New in Community Based Palliative Care ? MNHPC presentation.

End-of-Life Nursing Education Consortium (ELNEC) – Core. (2017). American Association of Colleges of Nursing, Washington, DC and City of Hope, Duarte, CA. www.aacnnursing.org/ELNEC

Hui, D. ,Bruera , E.(2015). Models of integration of oncology and palliative care. - http://apm.amegroups.com/article/view/6316/7816

MNHPC Rural Palliative Care website. Quill, TE & Abernathy, AP. (2013). Generalist plus Specialist Palliative Care- Creating a More Sustainable Model. NEJM 368: 1173-1175.

Wheeler, MS. (2016). Primary Palliative Care for Every Nurse Practitioner. JNP 1a 2(10): 647-653.

References (cont)

http://www.nursingworld.org/MainMenuCategories/ThePracticeofProfessionalNursing/Palliative-Care-Call-for-Action/Draft-PalliativeCare-ProfessionalIssuesPanel-CallforAction.pdf
















https://www.asco.org/about-asco/press-center/news-releases/panel-recommends-primary-palliative-care-services-medical



















http://www.aacnnursing.org/ELNEC

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