1. When the Time is Near Palliative Care Education For Front-line Workers
In First Nations Communities
cerah.lakeheadu.ca

2. The last hours of living
Over 90% of those who suffer a long illness will die
The last hours can be the most significant time of our lives
The last hours of living is the last opportunity to:
finish our business
create final memories
give final gifts
achieve spiritual peace
say good-bye

3. Think about…
The importance of final hours which are independent of the site of dying/death
Addressing physical, psychological, social, and spiritual needs
Skilled around-the-clock care
Anticipating medication, equipment, and supply needs
Ask if any of the participants have been present during someone’s last hours of living.
What did they see?
What did they hear?
What did they feel?
Anything significant stand out for them?
Care during the last hours of living is important. It may influence how those present perceive dying and may impact their grief experience.
People only die once, so this is the only opportunity given to provide this comprehensive care.

4. Caring in the last hours
If possible, the setting should allow loved ones private, 24-hour access without disturbing others
There is a need for regular reassessment of the patient’s condition and the family’s ability to cope with rapid and unexpected changes
Caregivers must respond quickly and modify plans especially when a dying person is at home if readmission to hospital is to be avoided
Ask the group who they would like to be present when the patient is dying.
Where would they like to be?
What do they think will be important to them at that time?

5. Who can receive palliative care in Canada?
Any person with a life expectancy of less than six months
Any person about whom you can say: “If she/ he died within the next year, I would not be surprised”
Any person with an incurable, progressive disease
Any person who elects a palliative or comfort- care approach
Examples of incurable progressive diseases include Alzheimer’s or congestive heart failure with severe challenges or MS or end-stage diabetes or cancer.
Palliative care is considered to be specialized care and is often considered to be quite costly so there are guidelines as to who can be accepted into a palliative program or service.
These guidelines are different depending on the program and location of the service.

6. What to expect weeks to months before death:
Social withdrawal, personal reflection, less communication or sometimes a desire to address old conflicts
Increased sleep and decreased intake of food and water
Postponing death until meaningful events occur
Saying good-bye, looking for permission to die, expressions of soul weariness (i.e. “I’m tired of living”)
Caring for the Terminally Ill: Honouring the Choices of the People, p
(CHPCA, 2008)
These are all signs that you might see weeks to months before someone dies. You may see one or all of these, or none depending on the individual.
It is not unusual for an individual to withdraw into themselves and away from people who love them when they are dying. This can be viewed as a conservation of energy or a realization of how isolating the journey of dying is for many people. This is often very difficult for families to understand or adjust to as they feel left out. Palliative care providers need to provide additional support at this time and normalize the experience for them.
Share an example of one of these signs from your experience or ask the participants what they have seen.
Encourage the participants to read pages in the Honouring the Choices book.

7. Communication with the individual who is unconscious
Plan ahead to reduce family distress(Caring for the Terminally Ill: Honouring the Choices of the People, p. 92)
Assume the individual who is unconscious can hear everything
Encourage families and friends to create an environment that is familiar and pleasant
Recognize touch as heightening communication
A common saying in palliative care “hope for the best but plan for the worst”
Some ideas to make the environment of an individual who is unconscious more pleasant are:
Music
Environmental sounds such as wind, water, etc.
Story telling
Gentle touch
Familiar blankets, pillows
If at home, soothing, familiar smells

8. Choices about eating & drinking
2/3 of individuals who are terminally ill experience a loss of appetite
The reduced need for food is a normal part of the dying process
Most individuals who are dying are not hungry or thirsty
Weight loss is expected in an individual who is dying
A dry mouth is also a common occurrence
Caring for the Terminally Ill: Honouring the Choices of the People, p
Eating and drinking choices can often be very challenging in end-of-life care.
So much of what we do is around food – we celebrate with food, we nurture with food, we comfort ourselves with food.
Often there is a concern that someone will “starve to death.”
Families need a lot of education and support around feeding issues.

9. If a person stops eating but is still taking in fluids:
S/he is able to live for weeks to months
Their feelings of hunger are blunted
Their mental function may remain normal until just before death
Sometimes families need to hear repeatedly that their loved one is not feeling any hunger while s/he is dying despite not having eaten for quite sometime.

10. If a person stops drinking…
S/he may typically live 1-3 weeks but in rare cases may live as long as 6 weeks
Dehydration results in a gradual loss of consciousness
Death while dehydrated may be more peaceful and comfortable than death with intravenous (IV) fluids
Good mouth care is an important part of comfort care
Families can take an active role in keeping their loved ones lips moist and mouth hydrated.
It is not unusual for palliative care nurses to teach families how to do this so they can take an active role here.

11. Reasons to recommend the use of tube feeding or IV fluids
Artificial nutrition and hydration can be used temporarily to support a person who may recover from a non-terminal illness
May improve comfort for individuals who express hunger or thirst
May be used to keep a person alert while awaiting a special visit or event prior to death
Client or family members’ religious beliefs or strong feelings may require continued use of these treatments until death
It is not unusual for loved ones to have questions about tube feeding or intravenous fluids.
In palliative care this issue is assessed on a case-by-case basis.
Families will need support around making decisions in these areas.

12. Reasons not to recommend tube feeding or IV fluids (1 of 2)
Can lead to increased lung secretions, shortness of breath, swelling, edema, and incontinence
Lack of IV fluids and tube feeding often results in a gradual, peaceful loss of consciousness
Artificial nutrition may prolong the dying process
Most dying people do not experience hunger or thirst

13. Reasons not to recommend tube feeding or IV fluids (2 of 2)
Restraints may be necessary to hold IVs or feeding tubes in place which may distress the person and/or family members
Tube feeding does not provide taste pleasure or social contact around meals

14. Some suggestions about making good decisions around eating and drinking
Evaluate the person for treatable causes of reduced intake such as depression, painful teeth, or other correctable problems
Consider a trial of an appetite stimulant
Acknowledge the emotional and social meanings of food
Recognize the naturalness of stopping eating and drinking at the end of life

15. Other physical changes
Sore mouth
Difficulty breathing
Skin problems
Feeling weak
Constipation
Not sleeping well and feeling tired
Caring for the Terminally Ill: Honouring the Choices of the People, p
These are some signs to be aware of during the dying process.

16. Delirium (1 of 3)
A disordered altered mental state that may present with hallucinations, agitation, paranoia, sleeplessness, confusion, moaning and groaning, incoherent speech and continual aimless physical activity
Caring for the Terminally Ill: Honouring the Choices of the People, p

17. Delirium (2 of 3) May occur in the last 12-24 hours of life
Makes the assessment of pain and symptoms extremely challenging
It can be devastating for families to watch their loved one in a state of terminal delirium
Some possible causes may include brain metastases, and renal and liver failure
Early onset of delirium should be investigated as some causes of delirium are reversible
If delirium does occur, the increased presence of the palliative care team is beneficial to both the family and the individual who is dying to reduce any anxiety through support and education.
It is often devastating for families to watch their loved one in this state.
Some causes of delirium are reversible and should be treated.

18. Delirium (3 of 3) Some suggestions
Educate yourself, staff, and families about the difference between pain and terminal delirium
Advocate on behalf of the client and their family
Do not abandon the client or their family Continued presence of staff may assist in maintaining a calm environment and supporting the family and client

19. Some changes when death is near
Coolness of the skin
Decreased alertness
Disorientation or delirium
Restlessness
Decreased intake food and water
Incontinence and/or decreased urine output
Changes in vital signs (i.e. pulse, blood pressure)
Changes in breathing patterns
Caring for the Terminally Ill: Honouring the Choices of the People, p
Many other physical changes may be present.
It is important to educate the family and caregivers about what is happening. They may have many questions at this time, and education about the last hours of living is very beneficial to most people. Often there are questions about someone being hungry or thirsty.
Please refer participants to the “Caring for the Terminally Ill” book pgs

20. Signs and symptoms hours/ minutes before death
Large fixed pupils
Inability to move
Faster but weaker pulse
Lowered blood pressure
Cheyne-Stoke respirations (increasing periods of time in between breaths)
“Death rattle” (noisy breathing due to collection of mucus in the throat)

21. Clinical signs and symptoms of death
Total lack of response to external stimulus
No muscular movement
No reflexes
No vital signs: breath/pulse/blood pressure
Caring for the Terminally Ill: Honouring the Choices of the People, p. 96
Sometimes it is important to explain what death looks like to families. It helps to reduce the anxiety in those caring for individuals who are dying.

22. When death occurs What to do if you think death has happened
Caring for yourself
Caring for the Terminally Ill: Honouring the Choices of the People, p
It is important to have a plan in place for when death occurs in the home.
Is there a specific protocol which is followed?
What happens in your community when an unexpected death occurs in the home?
Ask the group if there are any comments or questions at this time.