Week 15: Palliative Care

Palliative care

a holistic approach to care that focuses on the physical, emotional, social, cultural, and spiritual needs of both the patient and their family members across the illness trajectory

• can start right at the diagnosis of a serious disease/illness & can continue into the bereavement period for families

• delivered concurrently with disease-specific life-prolonging treatment

• can be delivered in any care setting

What are the primary attributes of palliative care?

• state of the art treatment tailored to the individual

• support the family unit/caregivers

• use an interprofessional team approach

Who makes up the palliative care team?

• chaplaincy

• social work

• nursing

• medicine

• pharmacy

• volunteers, expressive therapies, psych support

What are common palliative care services?

• individualized & patient-centered care

• cultural assessment

• physical assessment & management of symptoms + psych

• spiritual aid

• emotional aid

• medication management

• risk assessment tools

• care coordination & oversight of care transitions

• community partnerships + social services

• planning for end of life

• grief & bereavement support

True or false: 72% of US hospitals with 50 or more beds have palliative care programs

TRUE

True or false: 94% of hospitals with 300+ beds have palliative care teams

TRUE

True or false: 86% of 56 freestanding children hospitals with 50+ beds report having a pediatric palliative care team

TRUE

True or false: palliative care recognizes the multidimensionality of the illness experience

TRUE

What are secondary attributes of palliative care?

• promoting equitable access to quality palliative care and reduce health disparities for marginalized populations

• providing comprehensive, culturally sensitive, assessment & optimal management of physical and psychological symptoms

• elicit & advocate for pt wishes & preferences → pt care plan

• assist pts in advanced care planning (surrogate decision-maker & advanced directives)

• promote effective communication with team

• promote continuity of care

True or false: “there’s nothing more we can do” is often accurate in the healthcare setting.

FALSE → even when the burdens of treatment outweigh the benefits there is typically more we can do

True or false: there is ALWAYS more we can do for a patient & their family

TRUE → the care of the pt should never stop

True or false: palliative care & nursing practice have always been synergistic

True → they both alleviate suffering & work to prevent actual or potential problems + promote quality of life

What are nurses role in caring for seriously ill patients and their family?

• elicit goals of care

• assess, manage, coordinate care

• listen to pts & family

• bear witness

• communicate with all interprofessional members

• stay up to date on EBP

What are primary palliative care nursing competencies?

• advocate for & integrate palliative care for pts & families across their disease trajectory

• communicate effectively, respectfully, & compassionately with pts & families about care

• utilize evidence-based tools to perform holistic health assessments and address needs

• support pts, families, and team members with loss & bereavement

• demonstrate respect for person-centered care by aligning the plan of care w pt and their family values, beliefs, goals

• provide culturally sensitive care

What are important things to consider for chronic illness on pt and families?

• burden versus benefits

• prolonging life but promoting suffering?

Hospice care

• patient considered terminal with <6 months to live

• pt/family chooses not to receive aggressive, curative care

• focuses on “care” instead of “cure”

• expenses are covered by medicare, medicaid and most private health insurers

Palliative care overview

• ideally begins at the time of diagnosis of a serious illness

• no life expectancy requirement

• can be used to complement curative care

• expenses are covered by philanthropy, fee-for-service, direct hospital support & for pediatric patients its the ACA

What have studies shown for individuals who received early palliative care with standard oncology care?

• increased both quality of life & mood

• less aggressive care

• longer survival

Sutter health study

• fever hospitalizations, greater savings

• improved pt and family satisfaction

• 97% of enrollees completed ACP documents within 30 days

• fewer hospital days + hospice earlier + decrease cost

How does palliative care improve overall care?

• lowered hospitalizations

• lowered ICU admission

• palliative care triggers less ED visits and lower costs

True or false: we should use alternative terminology for “palliative care” as pts may assume we are giving up on them

TRUE

What are the eight domains of palliative care?

1. structure & processes of care

2. physical aspects of care

3. psychological & psychiatric care

4. social aspects of care

5. spiritual, religions, & existential aspects of care

6. cultural care

7. care of the pt nearing end of life

8. ethical and legal aspects of care

Structure and processes of care - 1st domain of palliative

• What is the palliative program structure where you work?

• How are referrals generated?

• What is the timeframe for referrals to be addressed?

• How to view previous palliative care notes/referral outcomes?

• Is palliative support available in all departments 24/7? On call? Normal hours only?

• What additional resources are available to you as primary nurse?

Physical aspects of care - 2nd domain

assess and manage pain, dyspnea, fatigue, anxiety, constipation, n/v, etc through established & validated tools

Psychological & psychiatric aspects of care - 3rd domain

• assessing & managing anxiety, depression, and normal reactions of pts/families to serious illness

• including the establishment of organized (planned) grief and bereavement tools

• provision of emotional and psychological support as appropriate

Social aspects of care - 4th domain

Goal: support pts & families by addressing social, practical, & relational needs

Key components = family dynamics, caregiver support, financial concerns, access to resources, cultural influences, social isolation

Nursing role = support systems & unmet needs assessment, connect families with social work/chaplaincy services, advocate for vulnerable pts, support family meetings

Spiritual, religious, and existential aspects - 5th domain

• understand & assess the multidimensionality of spirituality and religion, pt + family needs, religious practices, appropriate assessment, & provision of spiritual support

• spiritually may or may not include specific religious beliefs, but rather provides a philosophy or outlook that guides choices

• spiritual care requires the assessment & monitoring of a variety of aspects including life review, hopes, fears, purpose, meaning, guilt, community, beliefs about afterlife

Cultural aspects of care - 6th domain

• understanding and assessing the multidimensionality of culture

• appropriate assessment to assure decision making and preferences of a pt or family regarding the disclosure of information and truth-telling → ASK do not assume

• inquire about family dynamics & rituals → who is considered your “family”

• in the US, pts have the right to access healthcare services in their preferred language

Care of the patient nearing end of life - 7th domain

• recognize advanced illness to ensure communication & respect in planning use of time consistent with pts wishes

• proactive planning for end of life in terms of site, social, culture, spiritual

• ensuring attention to social, cultural, physical, & psychological needs at the end of life

• compassionate & appropriate post mortem care

• providing bereavement support to caregivers

Ethical & legal aspects of care: doing what’s right & documented - 8th domain

• Know the wishes, respect the voice → clarify goals & identify decision-maker

• advanced care planning → advanced directives, DNR/DNI, MI-POST

• understand ethical dilemmas

• nurses role = be a guide, normalize conversations, document clearly

Advanced Care Planning

a dynamic process involving many discussions whereby patients anticipate and discuss future health states and preferred treatment options

What are the 3 components of advanced care plans?

• delegating a surrogate decision-maker to make healthcare decisions should the patient lack decision-making capacity

• advanced directives

• orders to limit life-sustaining treatment (if pts goals)

True or false: advance care planning should begin upon initial assessment & continue to be addressed throughout the course of the illness

TRUE

True or false: it is important to think about advanced care planning now

TRUE → it is never too early but it can be too late (accidents, etc)

Who should be present during goals of care conversation?

• the patient/primary decision maker if pt doesn’t have capacity

• anyone the pt wants present

• primary attending/palliative care clinician

• key specialists

WHAT is the goal of care conversation?

• communicate pts overall healthcare status / prognosis

• elicit information about pt preferences

• provide support to pt and family

• make shared decisions

• ensure treatments & outcomes are in alignment with pts preferences

When is the goal of care conversation?

• treatment crossroads

• critical status changes

• uncertain outcomes

Where is the goal of care conversation?

bedside if pt can participate or in another space if not

HOW do we have a goals of are conversation?

• with a plan

• schedule the meeting & premeet to go over plan for meeting

• REMAP → reframe, expect emotion, map the future, align w/pt values, plan treatment

How many out-of-hospital cardiac arrest pts survive?

7.6%

10% with a bystander

What is the % of in-hospital CPR?

17%

With age, how does the % of CPR survival change?

• 6.7% for pts in 70s

• 2.4% for pts in 90s

What is % of CPR survival for pts with heart, lung, or liver disease?

<2% for 6 months

True or false: do not resuscitate does NOT mean do not treat

TRUE