Preventive Ethics - The Foundation of Palliative Care. Constance Dahlin, ANP, FAAN Clinical Director Palliative Care Service Massachusetts General Hospital Boston, MA. Introduction.
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Constance Dahlin, ANP, FAAN
Palliative Care Service
Massachusetts General Hospital
43 yr old female trainer. Married with 2 sons 7 and 9. Diagnosed with lung cancer and pemphigoid characteristics. Receives chemotherapy. Becomes weaker with more shortness of breath. Still able to parent her boys. Develops acute respiratory distress and admitted to ICU with poor prognosis. Offered a tracheotomy which she accepted. Recovers and becomes active for next 6 months, going to son’s baseball games. Declines but stays at home.
62 yr old female with 5 year history of ALS. Married 40 years with 3 children and 4 grandchildren. Developed weakness and diagnosed with ALS after 1 year. For 3 years, experienced continued weakness. Finally becomes more short of breath , begins to use oxygen at night and progressed to continuous BiPap. Declines trach or g-tube . Develops difficulty swallowing. Chooses to have no further treatment. Declines and is at home.
A sense of control - site, further treatments, who is in attendance
A sense of dignity and privacy - respect for decisions
A sense of relief from pain and symptoms - state of the art pain and symptom control
Robert Smith BMJ 2000
A sense of information for decisions - informing of realistic choices
A sense of finishing business - life review, closure with family and friends
An ability to die without unnecessary prolongation - respect for choices about advanced care issues
Robert Smith BMJ 2000
The use of life prolonging therapies even when outcome is poor, particularly in academic settings.
-Should “everything be offered” because it is available.
Dying is expensive as people are dying in hospitals and long term care facilities. This issue of rationed health care has emerged. What is prolonging of life versus prolonging of death.
Regional and setting variation in acceptance of death and dying.
Often patient wishes are unknown or not honored.
May feel pressured to receive therapies they don’t want.
Don’t know they can decline treatment even if they have sought assistance from the ED.
Don’t know about home services or have poor coverage for end of life care.
All the cases have issues that call for proactive attention
How to discuss specific or hypothetical?
When do we discuss
First visit or along the way – Context based on relationship
1. Open end questions are essential
2. Lack of agenda can help open discussion
3. Keeping discussion open by owning thoughts to make it less threatening
F = Feelings related to fears and concerns of illness
(Concerned, fears, feelings)
I = Ideas and explanations of the cause
(Ideas about what, think might be going on, what it means)
F= Functioning on daily life
(Affecting your life, change in routine)
(Expect, hope, expectation)
43 yr old trainer with lung cancer
Declined hospice as she felt it implied giving in to the disease and she wanted her sons to remember she fought hard to stay alive and never gave up
Caregivers respected her wishes and values
Died at home with home health care
62 yr old with ALS.
Had hospice for 6 months.
Then decided her quality of life is poor and decides to stop her BiPap.
Hospice nurse and palliative care nurse utilized protocol for home withdrawal of life sustaining technology with family at her side.
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