1.
0 Introduction to Terminal Illness Care
Terminal illness care, or end-of-life care, focuses on providing comfort, dignity,
and quality of life for patients with life-limiting conditions. The goal shifts from
curative treatment to palliative care—managing symptoms and providing
psychological, social, and spiritual support for the patient and their family.
2.0 Ways of Assessing a Terminally Ill Patient's Condition
Assessment is holistic, continuous, and patient-centered.
2.1 Physical Assessment:
(i) Pain: Use appropriate scales
(ii) Symptom Burden: Assess for nausea, dyspnea, fatigue, anorexia,
constipation, delirium.
(iii)Functional Status: Use tools like the Palliative Performance Scale (PPS)
or Karnofsky Performance Status to gauge mobility and self-care ability.
(iv) Skin Integrity: Monitor for pressure ulcers, especially in immobile
patients.
(v) Nutritional/Hydration Status: Observe oral intake, weight loss, signs of
dehydration.
2.2 Psychosocial & Emotional Assessment:
(i) Mood & Affect: Screen for anxiety, depression, and existential distress.
(ii) Cognitive State: Assess for delirium or dementia-related changes.
(iii)Coping Mechanisms: Evaluate patient and family coping strategies.
2.3 Spiritual Assessment:
(i) Use open-ended questions (e.g., "What gives your life meaning?" "How are
you finding peace during this time?").
2.4 Social & Practical Assessment:
(i) Support System: Identify primary caregivers and family dynamics.
(ii) Practical Needs: Assess financial concerns, caregiving needs, and living
arrangements.
3.0 Types of Terminal Illnesses
Terminal illnesses are progressive, incurable conditions. Common categories
include:
(i) Advanced Cancers: Metastatic carcinomas, glioblastoma, pancreatic
cancer.
(ii) End-Stage Organ Failure: Congestive Heart Failure (CHF), Chronic
Obstructive Pulmonary Disease (COPD), End-Stage Renal Disease
(ESRD), End-Stage Liver Disease.
(iii)Neurodegenerative Diseases: Advanced Alzheimer's/Dementia,
Amyotrophic Lateral Sclerosis (ALS), Parkinson's Disease.
(iv) HIV/AIDS (at advanced stages with complications).
(v) Other: Advanced stages of Cystic Fibrosis, Multisystem Atrophy.
4.0 Types of Terminal Care Activities
a) Physical Care:
(i) Symptom Management: Administering analgesics, antiemetics,
managing breathlessness.
(ii) Personal Hygiene: Assistance with bathing, oral care, grooming, and
toileting.
(iii)Positioning & Mobility: Regular turning, assisted movement, use of
support surfaces to prevent pressure sores.
(iv) Nutrition Support: Assistance with feeding, providing preferred foods,
managing dietary restrictions as per comfort goals.
b) Emotional & Psychological Support:
(i) Active Listening & Presence: Providing a compassionate, non-
judgmental presence.
(ii) Counseling & Life Review: Facilitating conversations about life, legacy,
and unresolved issues.
(iii)Support for Anxiety/Depression: Providing therapies or medications as
prescribed.
c) Spiritual Care:
(i) Facilitating contact with spiritual leaders.
(ii) Providing space for prayer, meditation, or rituals.
(iii)Discussing questions of meaning and purpose.
d) Care for the Family:
(i) Education: Teaching them how to provide care, what to expect.
(ii) Respite: Arranging temporary relief for caregivers.
(iii)Bereavement Support: Offering support before and after the patient's
death.
5.0 Steps for Carrying Out Terminal Care Activities
(Example: Administering Personal Hygiene)
A. Preparation:
(i) Knock & Announce: Respect the patient's privacy and autonomy.
(ii) Explain the Procedure: "Good morning, Mr. Doe. I'm here to help you
with a bed bath. Would that be alright now?"
(iii)Gather Supplies: Warm water, basin, soap, towels, clean linens, clean
clothes, barrier cream, gloves.
(iv) Ensure Environment: Warm, private, and comfortable.
B. Execution (With Compassion):
(i) Maintain Dignity: Expose only the area being washed. Use gentle,
respectful touch.
(ii) Assess & Observe: Note skin condition, any new pain points, or lesions
during care.
(iii)Encourage Independence: Allow the patient to do what they can (e.g.,
washing their face).
(iv) Communicate: Talk to the patient, not just about the task. Follow their
lead in conversation.
C. Completion:
(i) Ensure Comfort: Position comfortably, adjust bedding, offer a drink.
(ii) Tidy Up: Remove supplies, dispose of waste properly.
(iii)Document: Record the care given, any observations (e.g., "skin intact, no
redness"), and the patient's response.
6.0 Steps in Preparing a Terminal Care Report
Reports must be accurate, objective, timely, and confidential.
(i) Header: Patient Name, ID, Date/Time, Reporter's Name/Designation.
(ii) Subjective (What the Patient Says): Quote the patient's complaints or
feelings. E.g., "Patient stated, 'The pain in my back is a sharp 7 out of
10.'"
(iii) Objective (What You Observe/Measure): Vital signs, physical
assessment findings, behavior. *E.g., "BP 110/70.
(iv) Assessment (Your Clinical Interpretation): Summarize the
situation. E.g., "Increased pain related to disease progression."
(v) Plan/Interventions (Actions Taken/To Be Taken): Detail care given
and future steps. E.g., "Administered prescribed breakthrough morphine
5mg at 1400 hrs. Patient repositioned. Plan: Reassess pain in 30 min.
Inform team lead."
(vi) Evaluation/Outcome: Record the patient's response to
interventions. *E.g., "At 1430, patient reported pain decreased to 3/10,
appears more relaxed."*
(vii) Communication Note: Specify if family was updated or if a referral was
initiated.
7.0 Referral for a Terminally Ill Patient/Client
Timely referral connects the patient/family to needed resources.
(i) Identify the Need: Determine the gap in care (e.g., uncontrolled pain,
family distress, need for spiritual support, planning for home care).
(ii) Discuss with Patient & Family: Explain the purpose and benefit of
the referral. Obtain consent.
(iii) Select Appropriate Service:
(iv) Specialist Palliative Care Team: For complex symptom management.
(v) Hospice Care: For patients with a prognosis typically of 6 months or
less who forego curative treatment.
(vi) Social Worker: For financial, legal, or complex family dynamics.
(vii) Pastoral/Spiritual Care: For spiritual distress.
(viii) Bereavement Counselor: For anticipatory grief support.
(ix) Home Health Agency: For nursing or aide support at home.
(x) Initiate Formal Referral:
(xi) Contact the referral agency/service.
(xii) Complete required forms, providing key details: patient diagnosis,
prognosis, current needs, goals of care, and contact information.
(xiii) Facilitate & Follow Up:
(xiv) Share relevant patient records (with consent).
(xv) Schedule the initial appointment/visit if needed.
(xvi) Document the referral in the patient's record: date, reason, service
referred to, and by whom.