Unit 1: Foundations of Palliative and End-of-Life Care

Ancient times

Care for the dying was provided by family, community, religious groups.

11th Century

Hospices in Europe - waystations for travelers and the dying during Crusades.

1960s

Modern Movement

Cicely Saunders (UK, 1967)

Elisabeth Kubler-Ross (USA, 1969)

Cicely Saunders (UK, 1967)

• Founder of modern hospice.

• Established St. Christopher's Hospice in London.

• Introduced concept of "Total Pain" - pain is not just physical, but psychological, social, and spiritual.

Elisabeth Kubler-Ross (USA, 1969)

Published On Death and Dying, introduced Five Stages of Grief, brought open discussion of death in the US.

1990

WHO first defined Palliative Care

2002 & 2020

WHO updated definition to include early identification and care beyond cancer patients

"Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with 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, psychosocial and spiritual."

WHO Definition of Palliative Care (2020)

Life

Biological existence, but also biographical - a story, relationships, meaning.

Living

The active experience of life. In palliative care, the goal is to help patients live until they die.

Dying

A process, not an event. A period of transition with physical, psychological, social, and spiritual changes.

Death

The irreversible cessation of all biological functions. Can be clinical, brain death, or social death (when a person is treated as if already dead).

Infants/Children

Death seen as unnatural, out of order. Causes grief with guilt. Concept of death develops gradually (irreversibility, non-functionality, universality).

Adolescents

Understand death as adults do but feel invincible. Struggle with identity, independence, unfinished future.

Young & Middle Adults

Death means loss of future plans, family responsibilities, productivity.

Older Adults

More expected but brings fear of prolonged suffering, loss of independence, being a burden, loneliness.

• Multiple comorbidities

• Polypharmacy

• Frailty and functional decline

• Cognitive impairment / Dementia

• Social isolation and elder abuse risk

• Ethical issues: Advance directives, DNR, autonomy vs. family decision-making (very relevant in Filipino culture)

End-of-life Issues Among Older Adults

Palliative care

• Affirms life and regards dying as a normal process

• Neither hastens nor postpones death

• Provides relief from pain and other distressing symptoms

• Integrates psychological and spiritual aspects

• Offers support to help patients live as actively as possible

• Offers support to help family cope during illness and bereavement

Palliative Care

Anytime during serious illness from diagnosis

Goal Improve QOL, with curative treatment

Hospital, clinic, home

End-of-Life Care

Last months/weeks/days of life

Comfort in final phase

Anywhere

Hospice Care

When curative treatment is stopped, prognosis <6 months

Comfort, peaceful death

Mostly home, hospice facility

• Relief of suffering

• Improve Quality of Life (QOL)

• Support decision-making

• Provide holistic, person-centered care

• Support family and caregivers

Goals of Palliative Care

Quality of Life

Subjective - what matters to the patient. WHOQOL: physical health, psychological state, social relationships, environment.

Pain

physical

Suffering

is total - when integrity of the person is threatened.

Pain & Suffering

Relieved by presence, meaning, and holistic care, not just medication.

1. Physical Symptom Management

2. Psychological and Emotional Support

3. Social and Family-Centered Care

4. Spiritual and Cultural Care

Holistic Person-Centered Care - The 4 Domains

Based on Saunders' Total Pain Model

Physical Symptom Management

Pain, dyspnea, nausea/vomiting, fatigue, constipation, anorexia, delirium. Use pharmacologic and non-pharmacologic measures.

Psychological and Emotional Support

Fear, anxiety, depression, anger, loss of control. Interventions: Active listening, therapeutic communication, counseling, presence, dignity therapy.

Social and Family-Centered Care

• Illness affects the whole family.

• Assessment: Family structure, roles, coping, resources, caregiver burden.

• Interventions: Family conferences, respite care, involve in care, financial referral, legacy activities, support for children.

Spiritual and Cultural Care

This is the most neglected but often the MOST important for the dying.

Religion

Organized system of beliefs, rituals, e.g., Catholic, Muslim, Iglesia, Born Again.

Spirituality

Search for meaning, purpose, connection, transcendence. Even atheists have spirituality. Questions like: "May kabuluhan pa ba ang buhay ko?" "Mapapatawad ba ako?"

• Meaninglessness, hopelessness

• Guilt, regret, feeling punished by God - "Baka pinaparusahan ako ng Diyos"

• Fear of death, fear of afterlife

• Feeling abandoned by God or faith community

• Unfinished business - need for forgiveness

Spiritual Pain / Spiritual Distress Manifestations:

FICA & HOPE

Spiritual Assessment - Tools

Faith

F in FICA

Importance

I in FICA

Community

C in FICA

Address

A in FICA

Sources of Hope

H in HOPE

Organized religion

O in HOPE

Personal Spirituality

P in HOPE

Effects on care

E in HOPE

• BE present.

• Active listening without judgment

• Facilitate rituals: rosary, anointing of the sick, prayer, reading Quran/Bible, music

• Refer to chaplain, priest, pastor, imam, spiritual counselor - do NOT impose your own religion

• Life review / Legacy work

• Facilitate forgiveness:

• Respect sacred objects, dietary restrictions, end-of-life rituals

Nursing Interventions (NON-pharmacologic) for Spiritual Care

Cultural Care

Culture shapes how we view pain, death, who decides, and grief.

• Family-centered decision making: ." Autonomy = family autonomy.

• Pakikisama & Hiya:

• Utang na loob:

• Bahala Na / Fatalism:

• Collusion / Conspiracy of Silence:

• Beliefs about pain:

• Death beliefs:

Filipino Cultural Values affecting End-of-Life

• Negotiate, don't confront. Build trust first.

• Include family in care conferences

• Never label culture as wrong. Respect, educate gently.

Culturally Sensitive Nursing Care

Patient & Family

Center of team, decision-makers

Doctor / Palliative Physician

Symptom management, goals of care

Nurse

Coordinator, bedside presence 24/7, symptom monitoring, advocate, educator

Social Worker

Financial, family dynamics, advance directives, resources

Chaplain / Spiritual Counselor

Spiritual distress, rituals, meaning

Psychologist / Counselor

Anxiety, depression, coping

Pharmacist

Pain medication titration, polypharmacy

PT / OT / Dietitian / Volunteer

Function, comfort, nutrition, companionship

Dying Person's Bill of Rights (Barbus, 1975)

Created to protect dignity. The 12 rights

12 Rights of Dying Person

1. Right to be treated as a living human being until I die.

2. Right to maintain hope, however changing its focus may be.

3. Right to be cared for by those who can maintain hope.

4. Right to express feelings about death in my own way.

5. Right to participate in decisions concerning my care. D. Rights of the Dying Person 1. Dying Person's Bill of Rights (Barbus, 1975) Created to

6. Right to expect continuing medical and nursing attention even though "cure" goals must be changed to "comfort" goals.

7. Right to not die alone.

8. Right to be free from pain.

9. Right to have my questions answered honestly.

10. Right to not be deceived.

11. Right to have help from and for my family in accepting my death.

12. Right to die in peace and dignity, without unnecessary prolongation of life.

Dignity

Respect privacy, avoid unnecessary exposure, keep patient clean, call by preferred name, respect values.

Autonomy

Right to self-determination. Informed consent

Advance Directives

Living Will, Advance Care Plan, Healthcare Proxy / Surrogate

Advance Directives, DNR (Do Not Resuscitate) / AND (Allow Natural Death), Withholding / Withdrawing futile treatment

Informed Decision-Making Issues in End-of-Life

Loss

Anything we value that is taken away - loss of health, role, independence, loved one.

Grief

Internal response to loss - emotional, physical, cognitive, behavioral, spiritual. What you FEEL inside.

Mourning

External expression of grief - culturally influenced. What you SHOW outside - crying, black clothes, funeral rites, 40 days.

Bereavement

Period after loss when grief and mourning occur.

Kübler-Ross Five Stages of Grief (1969)

Originally from interviews with DYING patients, not bereaved families.

Normal Grief Manifestations:

• Physical: Fatigue, chest tightness, SOB, palpitations, appetite/sleep disturbance

• Emotional: Sadness, guilt, anger, anxiety, relief (especially after long caregiving)

• Cognitive: Disbelief, confusion, preoccupation with deceased, hallucinations (hearing voice)

• Behavioral: Crying, social withdrawal, restlessness

• Spiritual: Questioning faith, searching for meaning

Factors Affecting Grief

• Nature of death: sudden vs. anticipated, traumatic, age of deceased

• Relationship: spouse, child loss = most intense

• Support system

• Culture and religion

• Previous losses and mental health

Anticipatory Grief

Before death occurs.

Complicated Grief

Prolonged >6-12 months, intense yearning, unable to function.

Disenfranchised Grief

Grief not recognized by society

Ambiguous Loss

Person physically present but psychologically absent or vice versa.

• Prepare family what to expect physically when dying:

• Encourage presence, saying goodbye, unfinished business.

Nursing Role - BEFORE Death

• Provide privacy, allow rituals, allow family to stay as long as they want, don't rush removal of body.

• Therapeutic communication:

Nursing Role - AT Time of Death

Nursing Role - AFTER Death (Bereavement Care)

• Follow-up call or visit after funeral

• Refer to support groups

• Assess for complicated grief - if not eating/sleeping/functioning after months, refer to counselor

• Remember: Bereavement support is part of WHO definition of palliative care - we care for family up to 1 year after death.