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FAQ about End-of-Life Experience and Care The Four Things That Matter Most Landmarks and Taskwork for the End-of-Life Promoting Excellence in End-of-Life Care
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| DyingWell.org |
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Introduction A developmental framework outlined below occupies the center for much of my work and many of my writings. The concept of personhood and a model of life-long human development can be applied to understand the nature of suffering, as well as to comprehend experiences of enhanced well-being occasionally reported by dying patients.
Although symptom management is the first
priority for palliative care, it is not the ultimate
goal. True person and family-centered care strives
not only to ensure comfort, but also to improve
quality of life and preserve opportunities for
people who are dying and for their families to grow
through times of illness, caregiving and
grief.
The
specific characteristics of personal experience with
advanced illness, dying and grieving vary widely
from person to person. The conceptual framework and
the language of life-long development effectively
encompasses the broad range of human phenomenology
related to these experiences – from severe
suffering on the one hand, to a sense of profound
well-being on the other.
Building
from a foundation of human development within child
psychology, education and pediatrics, I have worked
to extend and apply life-long human development as a
theoretical basis for the studying of end-of-life
experience and shaping clinical care.
The
specific work that a person has need for, or
interest in, doing as they confront life’s end
will vary. A
person’s individuality is
not diminished by recognition of elemental commonalities within the human condition as life
ends. Issues of life completion and life closure are
available to each individual – and one need
not await serious, life-limiting illness for these
issues to have relevance. The end-of-life developmental landmarks and the taskwork that subserves them are intended to represent predictable personal challenges as well as important opportunities of persons as they die. I have provided the “working set” of developmental landmarks and taskwork below as an example of how this construct can be applied.
This "working
set" of developmental landmarks and tasks
evolved from notes that I kept in trying to make
sense of clinical challenges in a way that would
inform caring interventions. The actual landmarks
and taskwork delineated invite refinement and
modification. The general developmental approach can
provide a valuable map to clinicians through the
treacherous landscape of the dying experience and
end-of-life care. Importantly, within this model one need not sanitize nor glorify the experience of life's end to think of a person as having died well or, similarly, as having achieved a degree of wellness in their dying. Personal development is rarely easy. The touchstone of dying well -- the sense of growing individually or together in the midst of dying -- is that the experience is of value and meaningful for the person and their family.
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| Landmarks | Taskwork |
| Sense of completion with worldly affairs | Transfer of fiscal, legal and formal social responsibilities |
| Sense of completion in relationships with community |
Closure of multiple social relationships (employment,
commerce, organizational, congregational)
Components include: expressions of regret, expressions of forgiveness, acceptance of gratitude and appreciation Leave taking; the saying of goodbye |
| Sense of meaning about ones' individual life |
Life review
The telling of "one's stories" Transmission of knowledge and wisdom |
| Experienced love of self |
Self-acknowledgment
Self-forgiveness |
| Experienced love of others | Acceptance of worthiness |
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Sense of completion in relationships with family
and friends
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Reconciliation, fullness of communication and closure
in each of one's important relationships.
Component tasks include: expressions of regret, expressions of forgiveness and acceptance, expressions of gratitude and appreciation, acceptance of gratitude and appreciation, expressions of affection Leave-taking; the saying of goodbye |
| Acceptance of the finality of life - of one's existence as an individual |
Acknowledgment of the totality of
personal loss represented by one's dying and
experience of personal pain of existential loss
Expression of the depth of personal tragedy that dying represents Decathexis (emotional withdrawal) from worldly affairs and cathexis (emotional connection) with an enduring construct Acceptance of dependency |
| Sense of a new self (personhood) beyond personal loss | Developing self-awareness in the present |
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Sense of meaning about life in
general
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Achieving a sense of awe
Recognition of a transcendent realm Developing/achieving a sense of comfort with chaos |
| Surrender to the transcendent, to the unknown - "letting go" | In pursuit of this landmark, the doer and "taskwork" are one. Here, little remains of the ego except the volition to surrender. |
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