Download When A Patient Dies

Grieving When An ALS
Patient Dies
Presented by
The Respiratory Agency
Sandra Johnson RRT NPS
When the End is Near
Topics to consider when long term patients are in decline:
• Caregivers need to be aware when a patient is nearing the end of life
• Diagnosis with terminal outcomes that are not always imminent
• Family dynamics play a role in stress and grief
• Coping with loss
• Preparing for Death
What is Mortality?
• the state or condition of being subject to DEATH
Terms we use for Loss
• Grief: the physical, psychological, spiritual, cognitive, and behavioral
responses to the perceived threat of a loss.
• Mourning: the outward expression of grief
• Bereavement: the state of having suffered a loss
Terminal Illness
• Terminal illness is a disease that cannot be cured or adequately
treated and that is reasonably expected to result in the death of the
patient within a short period of time.
• It indicates a disease that will soon progress until death with near
absolute certainty, regardless of treatment.
Elisabeth Kübler-Ross defined
Five Stages of Death
• Denial
• Bargaining
• Depression
• Anger
• Acceptance
Stages of Grief
• Are a process by which people cope after a loss
• Can also be present in anticipatory grief.
• Anxiety, dread, guilt, helplessness, hopelessness, and feeling
overwhelmed are also common.
• Anticipatory grief is not simply normal grief begun earlier.
What is Anticipatory Grief?
• This is a response to the awareness of a life-threatening or terminal
illness in oneself or a significant other, as well as the recognition of
the associated losses.
When does it occur?
• Happens when you know there will be a loss, but it has not happened
yet.
• Occurs when a person or their loved ones are diagnosed with a
terminal illness. And they have time to prepare.
• It is not like bereavement after a death, this grief is experienced by
the person who is ill, as well as other family members.
• The process has a defined beginning and a definite end.
• It can include a period of hopefulness when the disease is being
managed effectively.
Potential losses associated with Illness
• Loss of body control
• Loss of hopes and dreams
• Loss of employment/finances
• Loss of independence and control
• Loss of feeling of self-worth
• Loss of role in the family
• Loss of love
• Loss of stability and security
Many Factors Can Influence the Intensity of
Anticipatory Grief
• Family relationships
• The role in the family that the ill member plays..i.e. their importance
• Changes in the quality of life for the family since diagnosis
• Length of the illness and the burden of caregiving
• How the family copes with sorrow, change, and loss
• The ability of family members to communicate thoughts, feelings, and
needs to each other
Other Factors that Influence Grief
• How much support the family receives from relatives, friends, the
community
• The family’s cultural, ethnic, and religious background
• Health of other family members
• Stressful situations in the family such as financial problems, strained
relationships, single parent households.
What happens to Family Relationships?
• Family relationships can change under the stress of living with a
person with a terminal disease.
• Diseases like ALS have the power to strengthen healthy family
relationships or shatter the already weakened ones.
• Because of the constant changes in abilities, roles, and physical
appearance of the ALS patient, the family feels increased pressure
and stress as well as helpless and hopelessness.
Family Reactions to prolonged illness
• Sometimes a patient receives an inaccurate prognosis or their
condition deteriorates faster than expected.
• In some cases if the person dies too soon, the family feels angry and
deprived of the time they expected.
• In other cases the person survives long past predicted expectations,
and the family can feel excessive fatigue and stress, which may lead to
feelings of resentment and guilt.
Symptoms of Anticipatory Grief
The emotions that accompany Anticipatory Grief are similar to
those that come with loss. But they may change minute to
minute or day to day. Some days may be really hard while
others are good days with filled with hopefulness.
More Symptoms of Anticipatory Grief
• Sadness and tearfulness
• Fear- not just fear of death, but fear of the coming changes
• Irritability and anger-both in the patient and the caregivers
• Loneliness-intense loneliness, unlike grief after a loss. This feeling can
cause guilt because it is not socially acceptable to express this
anticipatory grief it can lead to feelings of isolation for the patient or
the family.
Waiting to Die or for a loved one to Die
Feelings that may surface in both the patient and the caregivers:
• The desire to talk- To someone, or anyone, who will listen and
understand without judgement.
• The anxiety- Living in a life and death reality can heighten anxiety and
result in physical symptoms like tremors or shaking.
• The guilt- Wanting the patient to be free from pain or to just pass
away can create great feelings of guilt.
• The fear- Not being ready for the actual moment of death to occur.
Allowing Yourself to Feel Loss
• Accept that feeling grief before or after the patient dies is NORMAL.
• Express your emotions in healthy ways like journaling or creative
projects to commemorate the patient.
• Stay connected by joining a group or a “Walk for ALS” drive.
When you are alone with your thoughts
• Take care of yourself
• Get rest and relax
• Remember that you are not alone
• Feeling relief is normal
• Allow yourself time to grieve.
• Everyone responds to death differently
• Remember that you grieve because you care.
Questions?
1. What is anticipatory grief?
2. What is the term for a disease that will soon progress until death with
near certainty, regardless of treatment?
3. How do the changes in the appearance and abilities of the ALS patient
affect the family?
4. What are some of the losses that occur with long term illnesses like ALS?
5. What can you do to lessen the grief when a patient dies?
Evaluation
• Did this lesson meet your expectations?
• What information did you find of value?
• Did you feel that the topics covered were useful?
• Was this information helpful in caring for terminal patients?
• Was there anything you would add?