Death and Dying

Question 1

Why?

Answer 1

• Death & dying is NORMAL
• ALL are affected
• Talk about it
• You did nothing wrong!

Question 2

Physical changes months before death

Answer 2

Increased fatigue and weakness
Increased care needs
Decreased food intake
Peripheral edema

Question 3

Emotional/ Spiritual changes months before death

Answer 3

Starting to withdraw from people
Decreased energy for visits
Increased dependence on others for care

Multiple losses causing grief:
- Loss of security
- Loss of body image
- Loss of self-esteem
- Loss of the future and dreams
- Loss of/change in faith and beliefs

Attempts to “make meaning” of their illness

Question 4

Physical changes 1-2 weeks before death

Answer 4

Increased sleep
Increased moments of confusion
Increased periods of restlessness
Changes in temperature (hot and cold)
No/poor appetite – softer foods only
Changes in pain (increase or decrease)
Increased difficulty swallowing
Loss of muscle tone
Skin breakdown and loss of skin integrity

Question 5

Emotional/ Spiritual changes 1-2 weeks before death

Answer 5

Vision-like experiences
Continued withdrawal
Statements of goodbye
Planning funerals and giving away belongings
Dependence continues to increase – full nursing care often required
Memory exploring
Feelings of fear, anger, low mood
Increased questions around death and what they can expect

Question 6

Physical changes days/ hours before death

Answer 6

Sudden surges of energy
Decreasing blood pressure and weak pulse
Glassy eyes, open/half-open
Breathing changes: apnea, Cheyne-Stokes respirations, agonal breaths
Cold peripheries, blueness, and mottling
Increased restlessness – “picking” at the air with hands
Decreased urine output and dark urine
Fluids only/No fluid intake/Dysphagia
Wasting – notable on the temples
Non-responsive or unrousable to voice/sound/touch stimuli
Increased secretion build-up causing a “death rattle”

Question 7

Emotional/ Spiritual changes days/ hours before death

Answer 7

Increased moaning/groaning
Increased confusion
Speaking to those who have passed before them
Speaking about past memories
Symbolic language around “travelling” and “time”
Hallucinations

Once the patient enters the terminal phase and becomes increasingly unresponsive, the focus of emotional/spiritual support often shifts to the family/caregivers and how they are coping.

Question 8

Physical changes at death

Answer 8

Heart stops
Breathing ceases
Pupils become fixed and dilated
Body becomes pale and waxen as blood settles
Body temperature drops
Muscles and sphincters relax (after 4-6 hours, will stiffen with rigor mortis)
Eyes remain open/jaw falls slack

Question 9

Emotional/ Spiritual changes at death

Answer 9

Families need to be educated on what to do once their loved one dies:
Support for families needed
Rituals may need to be performed
Families/loved ones are encouraged to spend time saying goodbye
There is no need to rush the process
When ready, families would call a doctor/hospice and then undertakers

Question 10

What do we need to do?

Answer 10

Talk about it!
Family meeting
Where and how does the patient want to spend their last days?
What is most important to them?
Support: Home based care/Hospice/Community/MDT/Spiritual care
Normal for families to be angry/frustrated/sad/relieved

Question 11

Rituals / Honouring the death of a patient

Answer 11

Lighting a candle / minute of silence / prayer / memory wall
Talk about it
Counselling/debriefing
Difficult cases: Debriefing with team
It is NORMAL to be affected by a patient’s death!