NHPCO NewsLine Spring 2022 - 8

continued
Hospice and palliative care providers create a transformative experience for patients and families that differs significantly
from the experience of receiving care through a disease-focused model. A disease-focused approach involves curing the
disease or restoring to a previous health state. In the hospice and palliative care model, the experience for the patient
becomes that of a journey toward comfort, resolution, and life closure (rather than a forced march toward physical wellness).
In reflecting on what patients and families have taught us, the experiences of advanced illness, dying and bereavement
are much more than medical experiences. By helping to reduce all dimensions of suffering and reframe the end-of-life
experience, quality palliative care facilitates personal growth and meaning toward a more peaceful life closure.
A Model for End-of-Life Care
The Experience Model, which transforms end-of-life care, works best when the concept transcends all areas of an organization.
Figure 1
Patients
Families
Communities
i
c
r
e
Figure 1 depicts the relationships of all staff and volunteers to patients, families and
community members. In the center of the circle are the patients, families and
community members who direct our care and services. The next circle represents the
direct service staff and volunteers who provide the care and services. The outer-most
circle represents all other staff and volunteers who serve and support the direct
service staff and volunteers in providing optimal care.
How do we help to transform experiences for patients, families, and community
members; for the staff and volunteers who provide direct service; and for those who
create and maintain systems and resources that support the other two groups?
Transforming the Experiences of Patients and Families
As the family member of one patient shared: " What I appreciate about hospice is that you cared for her as the person she
had always been, not the patient she had become. "
Hospice and palliative care are uniquely different from the care
provided by other providers of health and human services. In contrast
to the more traditional disease-focused model that addresses the
physical dimensions of illness, the Experience Model is directed by the
patient's and family's individual goals and wishes as they adapt to
the effects of advancing illness, dying and bereavement.
We have learned from patients and families that this experience
involves not only a physical dimension but also psychological, social,
emotional, and spiritual dimensions. As an example, we know pain is
not only a physical problem. The physical dimensions of pain
simultaneously affect other dimensions as well, including the ability
to care for oneself, the quality of interactions with others, the sense
of well-being or disease, and the sense of spirituality. Like an
infant's mobile, this experience is dynamic. When one dimension is
affected, all other dimensions are involved. The experience is not
only " multidimensional, " it is " inter-dimensional. "
Therefore, quality hospice and palliative models of care must be
able to support and address all four dimensions-the physical,
interpersonal, spiritual and emotional.
Dame Cicely Saunders developed the " Total Pain " model in her
pioneering work that led to the creation of the modern hospice model
of care and St. Christopher's Hospice in London. This model is at the
foundation of hospice care today in the Twenty-first Century.
8
Newsline / Spring 2022
S
s
t
e
a
c
f
r
f
u
&
s
V
R
o
D
u
l
&s
i
n
r
r
t
m
e
e
e
e
d
t
s
r
v
t
W
o
y
e
h
P
r
o
t
e
v
C
e
a
S
r
S
s
c
i
e
s
e
o

NHPCO NewsLine Spring 2022

Table of Contents for the Digital Edition of NHPCO NewsLine Spring 2022