Four Societal Mandates of Hospice
1) Terminally ill persons should have access to appropriate care that attends to body, mind and spirit.
2) Death should not be a taboo subject.
3) Medical technology needs to be applied more judiciously.
4) Patients have the right to be involved in their own treatment decisions
Hospice Care Challenges the Following Beliefs
- Cure at any cost” syndrome.
- Patients being denied the truth of their conditions.
- The continued use of aggressive treatments well beyond when there was any hope that they would make a difference.
- Increased pain and suffering related to the withholding of pain medication due to fears of addiction.
- Lack of priority on keeping patients comfortable.
Hospice is derived from the Latin words hospes, meaning ???? and hospitium, referring to ????
host and guest
an inn or place of refuge for travelers
Core characteristics of American hospice care included;
- home care
- control of symptoms
- emotional and spiritual counselling for the patient and loved ones
- bereavement support
Role of the Nurse in Hospice Care
- assigned as case-manager
- Visits patient and family more regularly than other members
- Guide the symptom management process with a focus of relief on pain and other non-pain symptoms.
The Growth and Change in Hospice Care Over Time
- Initially almost all hospice patients had cancer.
- Eventually patients with other diagnoses were admitted into programs
Barriers to Accessing Hospice Care
- Limited time frames depending on program i.e. patient must have six months or less to live.
- Space available and financial status of family
- Family members may not be able to afford to take time off to care for a dying family members.
Blocking communication strategies can become a bad habit
Normalizing statements that dismiss the patient’s concerns
Offering premature advice
Giving false reassurance
Passing the buck (playing the blame game)
Jollying along
Becoming task focus and spending less time with the patient
Avoiding and/or abandoning the patient
Gibb’s Reflective Cycle (1988)
Description What happened?
Feeelings
What were you thinking and feeling?
Evaluation
What was good and bad about the experience?
Analysis
What sense can you make of the situation?
Conclusion
What else could you have done?
Action Plan
If it arose again, what would you do?
Death: Birth to Age 2 to 4
Cannot differentiate between death and separation
Believe death is reversible
Experience separation anxiety
Concerns expressed by crying
Don’t understand finality of death
Death: Age 4 to 6
Come to understand that death is final and irreversible
Death equivalent to sleep or going on a trip
May believe they are responsible for death
Anxiety about separation and sleep
Death: Age 7 to 11
Understand that death happens to everyone and that it is irreversible
Realistic understanding of the causes of death
Death: age 12-teen
Abstract understanding
Death may be seen as heroic or tragic
Death associated with old age
Dislike showing emotions
Death Interventions for Preschoolers – Ages 3 to 5
- Support the parent to support the child and help them understand the child’s need to be close to them.
- Explain death in simple terms and be open to answering questions.
- Recognize that the expression of strong emotions may frighten the child.
- Use play, drawing and artistic expression for the child to share thoughts and feelings.
- Prepare for the fact that the child may regress in several areas of functioning.
- Refer children who appear to have persistent difficulty i.e. excessive fears, aggressiveness, difficulty separating and problems with A.D.L.’s
- Use of age appropriate literature
Death Interventions for Children Aged 6 to 8 years
- Children at this age react with intense feelings of anger, anxiety, fear and sadness.
- Parental support is central.
- Care-givers need to join with the parents to inform them of when the death of the child, other parent or sibling is imminent.
- Support them in sharing controlled emotions so that children are not overwhelmed.
- Encourage continued involvement in developmentally appropriate activities i.e. school, playing with friends.
- Encourage participation in traditional rituals.
- Children will move between active grieving and the distraction of normal routines.
- Communicate with school personnel.
- Counselling referrals for children who show persistent anxiety, depression, low self-esteem and/or thoughts of suicide.
Death Interventions for Children Aged 9 to 11 years
- Children this age understand the implications of terminal illness.
- Give information about diagnosis and prognosis ASAP.
- Encourage participation in care-giving.
- Involve teachers and encourage involvement in after school activities.
- Encourage participation in death rituals and plan for ways to remember the lost loved one after death.
- Encourage returning to regular routines.
- Referrals for counselling for children who do not return to previous levels of functioning in school, activities and peer relationships.
Death Interventions for Adolescents Aged 12 to 14 Years
- Conflicting needs for greater independence from parents at a time of increased need for help and support from family.
- Emotional withdrawal is developmentally appropriate.
- Allow to assist with care-giving but do not make tasks too burdensome.
- Assist with the expression of grief through talk, music, silence, participating in normal activities together.
- Allow choice re: involvement in rituals after death..
- Support desire to return to normal activities.
- Set limits on destructive behavior.
- Refer for counselling teens with clinical depression, suicidal thoughts, fears and phobias, refusal to attend school, withdrawal, use of substances to cope, aggressive behavior, regression and somatic symptomatology.
Death Interventions for Adolescents Aged 15 to 17 ye
- Growing empathy and deepening personal relationships increase the comprehension of the impact of death and loss.
- Inform fully of illness and prognosis.
- Anticipate some withdrawal from day to day functioning.
- Discuss ways they can help.
- Let them choose how they will involve themselves in death rituals.
- Anticipate intense mourning and help them to understand the grieving process.
- Communicate with the school.
- Anticipate conflicts around responsibilities and the need for greater independence.
- Help them identify a positive legacy of the deceased person.
- Counselling referrals for severe symptoms i.e. extreme withdrawal, depression, destructive acting out, aggression, school and eating problems.
