PDF version - National Hospice and Palliative Care Organization

Our practice is to follow the
patient’s expressed wishes. If
the patient has been interacting,
but does not answer a particular
question, we interpret this as
“I don’t know,” and then stop
the process. If the patient is
unresponsive, we rely on advance
directives. In the absence of
advance directives, we identify
the legal decision-maker
according to our policy.
We conclude the conversation
by explaining what to expect
from us, what might be needed
from them, and who will be their
contact persons at our program.
Our admitting nurse then notifies
the receiving team to anticipate
this complex case, and arranges
for a social worker and chaplain
to meet the patient and family to
assess the psycho-social-spiritual
aspects of their lives and the
implications for care.
This is the time to clarify who is
considered “family.” Is the patient
legally married to one partner,
but currently living with another
who has assumed that role? Does
the staff at the patient’s long-term
care facility consider themselves
family and want to be informed
of the patient’s care at every stage
of decline? If there is complex
care to be rendered, is there
someone who is willing and able
to assist in a caregiving capacity?
If so, who will be training them?
What exactly are the orders and
instructions for that care?
Finally, does your organization’s
policies and procedures support
the care that is needed and
requested? During our review of
the case, a nursing director or
chief clinical officer reviews all
policies that apply to the patient’s
situation. Any questions that
surface from this review must
then be addressed.
In Practice:
The Case of Jimmy
Jimmy was a 32-year-old man
with Down Syndrome, whose
multiple medical conditions had
brought him to a terminal state.
He had been a long-term resident
of a group home that cared for the
developmentally disabled until
his care required admittance to
the area hospital. The group home
and hospital were about 150 miles
away from his parents’ home,
which was located in our service
area. Now, given his illness,
his parents wanted to have him
closer to them.
Pages and pages of records about
Jimmy arrived at our hospice for
review. The physician and staff at
our hospice house reviewed every
page, looking for clues about the
best way to manage his care. We
learned that Jimmy was in fourcontinued
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A nursing director
or chief clinical officer
reviews all policies
that apply to the
patient’s situation.
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