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From a Nurse's Perspective
Palliative Care
by
Denise Reinke, APRN, BC, AOCN
Oncology Nurse Practitioner, Sarcoma Program
University of Michigan
The word palliate means to alleviate or to moderate
intensity. In the context of cancer care, palliative care means to focus
medical care or treatment on preventing or relieving suffering associated
with serious illness. In the United States, palliative care can be a part of
medical care at various times during the course of an illness. Whether it is
during the time of treatment or when there are no options for further
treatment, relief or palliation of symptoms can be very important to
preserving one’s quality of life.
Those who are dealing with treatment for sarcoma may very
well understand the need for information on how to relieve symptoms
associated with their disease and/or treatment. Surgery, radiation, and
chemotherapy may impact one’s ability to do the activities that bring
pleasure and enjoyment to life. Therefore, having an understanding of what
can be done to palliate (relieve or reduce) symptoms can be very important.
Often times the healthcare team providing treatment for sarcoma will be able
to alleviate many of the symptoms related to the treatment and/or disease,
however, sometimes the symptoms may be particularly difficult to alleviate
and collaboration with other experts can provide the needed relief.
Increasingly, there are programs, such as the one described by Ms. Mattison
and Ms. Szakatis that offer patients and their families access to healthcare
professionals with expertise in managing symptoms.
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Palliative Care, “Actually there
is something we can do!”
A perspective from an inpatient
consultation service.
by
Debra Mattison, LMSW
Kathy Szakatis, APN
Adult Palliative Care Consultation Service
University of Michigan Health System
People with chronic illness often experience both
periods of stability and periods of decline over the course of an
illness. They may have a variety of treatments, surgeries and
hospitalizations over months and years. A time may come for some
when they may either say to themselves or hear from a health care
professional, “there is nothing else we can do.” This is a
belief that is often rooted in a focus on one’s physical body and a
belief that if health care cannot offer a procedure or treatment to
cure an illness or condition, that there are no care options and
“there is nothing else we can do.”
Palliative Care is a purposefully interdisciplinary
approach to care which challenges this narrow focus on the body and
the limits of looking at care as only being provided in the context
of doing something to the patient. Palliative Care teams
often consist of nurses, physicians, social workers and chaplains
who seek to use individual and collective expertise to look at the
mind, body and spirit needs of patients and their families as they
face life-limiting and life-threatening conditions. Palliative Care
teams focus on understanding a person’s values and goals, how they
define quality of life and how they want to spend their time, energy
and resources. They support hope and care throughout one’s life and
course of an illness and believe that the relief of suffering at all
level---mind, body and spirit---is care that we can always provide.
Patients should never have to make a choice between receiving care
and receiving no care. Care may range across a spectrum that
includes aggressive medical or surgical interventions aimed at
curing an illness to aggressive comfort focused care that provides
relief of suffering and distress to symptom management for a person
facing the end of life. Palliative Care is appropriate at all
stages of one’s illness from initial diagnosis to living with a
chronic illness to the end of life. Our team is often reminded that
although we can sometimes help by doing things to a patient,
e.g. tests, procedures, etc., there are times when these
interventions are no longer effective, but we can always focus on
the things we do for a patient. That something is called
“care!”
If you, a loved-one or one of your patients is facing
a life limiting or life threatening illness and your facility has a
Palliative Care team, consider the potential value of consulting
with them to assist you in discussing goals of care, helping with
complex communication and decision making around care decisions and
expertise in managing symptoms. |
Sometimes, palliative care and hospice care are used
interchangeably and this may result in confusion. Hospice care, most often
means a change in focus from treatment of a life-threatening disease to a
focus on relief of symptoms with an understanding that all possible
treatments to cure the disease have been exhausted. Palliative care is a
major focus of hospice care. Palliative care initially evolved from hospice
care, however, it has expanded to include the relief of symptoms associated
with curative treatment as well.
Through an initiative called the National Consensus Project,
five major US palliative care organizations have collaborated to publish
guidelines that provide a comprehensive description of what constitutes
quality palliative care. Initiatives of this nature have developed because
an increased number of people are living with chronic, debilitating and/or
life-threatening illnesses. Sarcoma can be a chronic and sometimes
debilitating, life-threatening illness and therefore relief of symptoms is a
very important goal.
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Some
Palliative Care Resources
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ESUN Copyright © 2007 Liddy Shriver Sarcoma
Initiative.
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