PediPathways provides various services
to its patients and their families.
Palliative
Care: Provides care to patients with
life limiting illness earlier in the course of the
disease process, while receiving active treatment
or before they are ready to elect the hospice care
benefit. The patient must meet all home health regulatory
requirements and have a documented illness to receive
care.
Palliative Care can be
provided in the home, or while the patient is in the
hospital. Your attending physician continues to be
involved with your care; the Palliative Care team
emphasizes supportive care while your attending physician
provides more aggressive treatment. Palliative Care
Services address discomfort caused not only by the
disease process itself, but also by curative treatments.
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Palliative
Care Services Team Members Are Able To:
- Consult with the patient's physician
for pain and symptom management
- Provide psychological consultation
related to issues dealing with the illness
- Help individuals interpret medical
information and consider treatment options
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Frequently
Asked Questions
Who can receive Palliative Care
Services?
Anyone with a serious illness, regardless of life
expectancy or treatment plan. It is also an alternative
for patients who are not emotionally or medically
ready for hospice services.
I
am interested in having the Palliative Care Services
team support my child, how do I get started?
A referral from your child’s physician is required
for Palliative Care Services to provide care. Depending
on the patients need, Palliative Care Services can
meet with you and your family the same day as the
referral is received.
Can
I have Home Health and Palliative Care Services at
the same time?
Yes, you may use both services at the same time.
How
long can I receive care?
This will depend upon your care needs. Palliative
Care Services are intended to be in consultation with
your regular physician.
PediPathways
Program
- Provides comprehensive and specialized
care for children and families.
- Realizes that a child with a life
threatening illness requires special care and
consideration. Children are not small adults.
- Cares for any child who has been
diagnosed with a life-threatening illness and
are undergoing curative care for their illness.
- Encourages the physician and family
to begin care early in the course of the illness,
to reap the benefits of the entire program.
- Uses the team approach in caring
for each child and family.
- Provides intermittent skilled nursing
visits with 24 hour on-call nurse for questions
and concerns.
The PediPathways
Pediatric Palliative Care Team Includes:
- Primary Care Physician(s)
- Patient
- Parents & Family
- Pediatric Medical Director
- Pediatric Care Coordinator
- Pediatric Nurse
- Social Worker
- Chaplain
The Goals of
PediPathways Pediatric Palliative Care Team Include:
- Comfort care that involves pain
relief and symptom control.
- Quality of life issues such as
making it possible for the child to attend school
if able, and family the freedom to take vacations
or schedule special trips.
- Assessing the need for specialized
equipment, supplies, and medications.
- Supporting the child and family
during the illness.
- Meeting the spiritual needs of
the child and family.
- Educating the family on pain and
symptom control.
- Offer resources for further assistance
when needed.
- Work closely with child’s
health care team.
- Provide 24-hour on-call assistance
for questions and concerns.
Who is appropriate
for the Pediatric Palliative Care Program?
Any child age 0 to 21 years old, who has been diagnosed
with an illness or condition that can be life threatening,
such as: cancer, severe genetic disorders of an organ
system (heart, lungs, kidneys, liver, etc.), neurological
degenerative diseases (Battens Disease, Spinal Muscular
Atrophy, etc.). In other words, any disease or condition,
including traumatic injury, which is considered life
threatening.
When should
Pediatric Palliative care begin?
Palliative care should be initiated at the time of
diagnosis. The pediatric team will assist with controlling
any pain or symptom that may arise, as well as provide
psychosocial and spiritual care. This early intervention
is essential to promote your child’s comfort,
as well as to provide spiritual and emotional support
to your child and family.
Will my
child continue to see the same doctor?
Yes, your child will continue to be treated as before,
with the addition of the expertise of the pediatric
team to assist with pain and symptom control, psychosocial
and spiritual needs.
Can my child
continue to attend school?
Yes, we encourage the child and family to continue
activities (school, vacations, etc.) to promote quality
of life.
How do we
get started in the PediPathways Pediatric Palliative
Care Program?
A written order (referral) or physician phone call
is all that is needed to be evaluated for the program.
How is the
Palliative Care Program paid for?
There is no charge to patient/family. At this time
donations and grants are used to help fund this program
Which program
is best for my patient?
Palliative Care
Program
Age 0—21 years old
New or recent diagnosis of a life– threatening
illness
Prognosis greater than 12 months
Diagnosed with a severe chronic debilitating disease
or condition
Would benefit from pain & symptom control
Receiving aggressive treatment aimed at cure/remission
Would benefit from psychosocial and spiritual
support
Hospice Program
Age 0—21 years old
Diagnosed with a life– threatening/ life
limiting illness
Prognosis less than 12 months
Would benefit from pain & symptom control
Receiving palliative treatments for comfort and
quality of life
Would benefit from psychosocial and spiritual
support
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Hospice
Care: Provides care to patients diagnosed with progressive
diseases. Our goal transitions from curing patients to relieving them
of pain and suffering. Hospice care is for any person who has cancer
or non-cancer illnesses. Both paths of care offer pain and symptom
management, assessment, consultation, and supportive services to the
patient and family.
Levels of Care
Routine Home
Hospice Care
PediPathways believes in bringing care to wherever you call
home. We strive to provide an environment of care that is comfortable
for our patients and their families. Often, this means providing care
in the patient's own home. Our team of professionals schedule regular
home visits to ensure that medical, social, and emotional needs are
met.
Continuous
Hospice Care
Sometimes a patient has a medical crisis that needs close medical
attention. When this happens, we can arrange for inpatient care, or
PediPathways staff can provide round-the-clock care in the home. When
the crisis is over, the patient can return to routine care in the
home.
Inpatient
Hospice Care
When pain or symptoms cannot be controlled at home, the patient might
be taken to a hospital or other inpatient care center. When the symptoms
are under control, the patient can return home.
Respite Care
Many patients have their own caregivers, often family members. When
caregivers need a rest from their care giving responsibilities, patients
can stay in a hospital or other inpatient care center for up to five
days.
Early Intervention Program
In response to a need identified by families in the community,
PediPathways has developed a specialized program to meet the
needs of an underserved population. These families have unborn
babies with a diagnosis/prognosis that is expected to be life
threatening/life-limiting after birth. Families have discovered
a great void in support services available during this emotionally
trying time.
Upon receiving test results, which
confirm a life-threatening condition, families have a small
window of time to decide the next course of action: whether
to continue with the pregnancy or terminate it. Those who chose
to continue with the pregnancy find themselves essentially alone
to prepare themselves and family members, including other children
in the family of the baby’s possible demise. Estrella's
Program has the expertise to assist parents through this process.
Families can turn to Estrella’s
Program of PediPathways for assistance. Together with a Nurse,
Social Worker and/or Chaplain, a plan will be developed to meet
the goals of the pregnancy and the anticipated brief life of
their baby |
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When a tragic event such as a sudden death
affects your school, neighborhood or home and children are involved,
our crisis intervention team will bring trained professionals to you
to provide counseling, support and information.
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Volunteers contribute greatly to the success
of PediPathways by providing direct patient support, encouragement
and/or valuable agency support by performing a variety of much needed
office tasks. It takes a whole team to provide comfort to the termnally
ill at the end of their lives. Volunteers in the program assist in
achieving PediPathways' goal of hope, relief and comfort.
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Eligibility
Criteria for Teen Involvement
Age: Our program is for high school
students, grades 9-12, approximately ages 14-18
Application/Screening: intake interview;
application, references, code of ethics, confidentiality statement,
publicity release
Parental consent
TB test (needs parental consent)
Hepatitis B test (not required, but
offered)
Completion of training: 18-hour Patient
and Family Support Training required for any volunteer who will
have direct contact with patients or families.
Transportation: Teens must have own
transportation to training classes and volunteer assignments
What kind
of training do you do with teens?
We offer two levels of training. The minimum
is a 3-hour orientation, which would prepare the teens to be involved
in support activities such as working in our office. For students
who wish to have direct patient and family contact, we require an
18-hour curriculum called Patient and Family Support Training. Topics
covered in the longer curriculum include communication skills, the
interdisciplinary team, personal loss awareness, ethics and patient
advocacy, information about standard precautions, special populations,
pain and symptom management and the volunteer's role in spiritual
care, psychosocial grief, and bereavement. Hospice nurses, social
workers, volunteer coordinators and other team members participate
in the training.
What kinds
of roles are available for the teen volunteers to play?
A large percent of teens would be actively
seeing patients or families and therefore are involved in some kind
of direct service. The remaining percent are doing special events,
office work and fund raising. Some of the teens do both kinds of activities
— see patients but also work in an office, do a fashion show.
Most volunteers are seeing patients and families in the home setting,
most of the time to support children in those homes. (I.e.: siblings)
We don't really have teens going into patients homes and providing
respite for a patient while the caregiver goes out, like the adults
often do. We never have teens transporting patients and families.
Due to auto liability restrictions, volunteers have to be 18 years
old to transport patients. However, may be asked to run errands for
our families.
For the first visit, the volunteer coordinator
or an experienced adult volunteer accompanies the teen volunteer.
This adult helps set the tone and establish what is expected from
the teen as well as confirming the family's needs and expectations
for the teen volunteer.
So in the home setting, it's mainly to
see a child in that home. Sometimes a teen volunteer will visit a
child who is being seen by a counselor through our bereavement services
because someone has died in his or her family. In these instances,
when teen volunteers are paired with one of these children, the teen
goes in to help with homework, play or just visit. The teen volunteer
is spending time together with the child as a friend.
What kind
of time requirement do you make on teen volunteers once they've been
trained?
We really work with the students and their
schedules. We do ask them to commit to going regularly, as in once
a week, to visit a patient. But depending on how the patient is doing,
and also the student's schedule, one week the student might spend
an hour, and the next week he or she might spend three. That's okay.
We work around the students' schedules, and also how the patient is
doing.
What kind
of documentation of patient contact do you expect of students?
When students make a visit, they fill out
a volunteer report form, just as our adult volunteers do. This document
then goes in the patients chart.
Many people find that puppets can help shy children express themselves.
The soft, life-like animal puppets can be a comfort for children
working through difficult times, and we have been told that our
puppets have helped some children to reveal their experiences
and emotions. |
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| Art provides children the opportunity to use
art materials for self-expression. Often, expressing what they
cannot say aloud.
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Love is the most important medicine and animals are nature’s
best source of affection. What is better than a friendly lick
on the face? These animals are trained to be calm, gentle, and
well mannered. The innocence of animals and their ability to love
makes them special, and sets pet support apart from any other.
When a child focuses on an animal for even a short period of time,
they are focusing on something other than themselves. |
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Our support group offers comfort and encouragement.
Grieving is hard work, drawing on our physical, intellectual, emotional
and spiritual resources. It is sometimes difficult to know what we
should expect from ourselves. Feelings of sadness can be overwhelming.
A group can be helpful as it is supportive and protective of your
individual experience.
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Bereavement services are offered to our
patients, their families, and primary caregivers prior to and following
a patient's death. We also provide grief counseling to schools or
groups that impacted by the child’s death. Members of our hospice
interdisciplinary team are trained to provide support to those grieving
a loss.
Bereavement care includes:
- Supporting the patient and family through the dying
process
- Developing coping abilities in the grieving process
- Strengthening family support systems
- Individual and group sessions
- Educational materials, referrals, and other
support information
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Our Lending Library has resources that
touch on many vital topics relating to end-of life care and support.
We also have information specifically geared for children and teens.
These resources are available to anyone who feels that they may be
of help to themselves or to someone they care about. To check out
a book or video, stop in at PediPathways main office:
44 Hancock St., North Quincy, MA 02171
Monday - Friday from 9:00 a.m. to 4:00
pm.
If you like what you see, consider making
a donation of money or books to support the replacement and purchase
of new resources for the library.
If you are unable to visit us to pick up
materials from the lending library, contact us to make arrangements
to check out items by mail. The borrowers pay for postage and provides
us with a deposit that is returned when the book/video is returned.
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Are you a caregiver or consumer?
Are you a hospice or palliative care professional?
If so, and you are looking for resources
that can answer your questions and help you be more effective in working
with people at the end of their lives, then look no further!
PediPathways Marketplace gives you on-line
access to the latest audio and video resources, books and educational
materials on hospice, palliative and end of life care.
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