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:: Choices - End-of-life Care :: African American Caregivers :: Asian American Caregivers

When a person has a terminal illness, their options include aggressively seeking medical treatments; yielding to the disease, a combination of the two, or euthanasia. Ultimately the decision is very personal and requires intensive research into each of the options available.

Medical research and technology have lengthened our life span through advance knowledge of the progression and treatment of many diseases. With this knowledge, it may be possible to predict the outcome and complications of a specific disease and treatment plan. The many stages and associated complications associated with treatment can be very uncomfortable and the discomfort may or may not outweigh the benefits. Therefore, it is important to understand all the options, including palliative care, and then choose the path that is most compatible with the desired quality of life.

Hospice and palliative care are based on the premise that dying is a natural part of living and that each individual's dying process must be respected. Therefore, the goal is not to fight death but to provide emotional, physical and spiritual support to individuals and their families during the transition from life to death; to make the journey comfortable and the experience more meaningful.

Both medical and hospice care teams place great emphasis on the management of physical and emotional pain to improve the quality of life for the individual and their family during what could be a very difficult period. Euthanasia, or assisted suicide, means deliberately ending a person's life. The argument that euthanasia devalues human life is countered by the argument that it expresses compassion for the terminally ill person. With good management of physical and emotional pain there may be less need to consider euthanasia as an alternative.

Caregivers are often least prepared for the last hours of life. Their attention has been so focused on keeping their loved one comfortable, both physically and emotionally, that they may not notice the symptoms that indicate the final stage of the dying process. Being aware of these changes provides an opportunity to continue to effectively offer comfort to the individual, and to prepare for a final farewell.

For more information on Pain Management the Last Days and Hours of Living, read the "Basics of Caregiving" Chapter in The Caregiver Sourcebook, 2nd edition.

WHY KNOW?

1. Professionals reluctant to communicate openly
2. Professionals don't realize you don't know
3. Death seen as a failure
4. how to know when to call in family
5. How to know when not to call 911
6. Reduce anxiety
7. Maintains comfort and control for all involved

WHAT ARE THE SIGNS?

Time Frames are different for each individual ; physician and nurse are qualified to give better estimates regarding client
1. Change in heart and lung functioning (cardiopulmonary function)
a) decrease in blood pressure
b) respiration changes
(use Ferris' descriptions)
2. change in appearance
a) glassy eyes (one or more days)
b) mottled or blotchy skin on arms and legs (indicators
of decrease cardiopulmonary functioning)
(hour to a couple of days)
c) decrease urine output - days to a week or more
3. change in activity level
a) surge of energy
b) restlessness/inactivity
c) unresponsiveness

EMOTIONAL AND SPIRITUAL CHANGES

1. Withdrawal
2. Fear
a) of the dying process
b) of death as an idea
c) of what lies after death
3. Need to Talk
a) about the dying process
b) about unfinished business
c) how family will manage
d) things they are experiencing -
increasing death awareness
seeing those who have died before
regressing to childhood experiences and places
preparing for travel or change
seeing a special place
knowing the time of death
near death experience (NDE)
4. Needs for a peaceful death
a) physical comfort
b) reconciliation
c) special circumstances
d) give them what they need
5. Interventions for the Patient/Family

FOR THE PATIENT
a) physically
1. pain management ( reduces requests for
assisted suicide)
2. coordinate activities to meet patient's needs
3. adjust bedding, clothes etc. to meet
changing needs
4. adjust room environment to increase comfort
5. body care, positioning, respect,
confidentiality
6. nutrition - feeding, appeal, etc
7. hospice care
8. care plan regarding extreme measures (e.g.
feeding tubes etc.)
b)emotional/spiritual
1. talk, touch softly, reassure
2. soothing embiance (soft music)
3. life review
4. permission to die
5. inspirational literature, visitors, etc

FOR THE CAREGIVER
1. Changes
a) guilt for wanting death to come (relief from
caregiving strain)
b) changes in diet, sleep, energy
c) frustration
d) anger
e) numbness
2. Interventions
a)encourage self care
b) validate efforts
c) acknowledge all feelings
d) get support from identified sources

Source; Barbara Remakel and Michael Davis ; The Caregiver Connection, LLC; 1998