Services and Practical Care
to find a hospice provider
Thinking about the end of life can be upsetting and emotionally overwhelming.
However, preparing for and making choices about end-of-life care, while
extremely difficult, can offer survivors and families a sense of relief
and control. Such planning can be reassuring for everyone involved.
Knowing what lies ahead can help reduce fears of the unknown.
Most communities have more than
one hospice organization. Ask the survivor’s healthcare team or
a social worker to help you find out what hospice care is available in
your community and how to arrange for it.
The National Hospice and Palliative
Care Organization (NHPCO) has a state-by-state directory of hospice providers
on its website, www.nhpco.org.
You may also receive assistance by calling the NHPCO “HelpLine” toll-free
at 800-658-8898. In addition, the Pancreatic Cancer Action
Network’s Patient and Liaison Services (PALS) Associates can provide you
with resources to find hospice care in your area. PALS Associates
are available toll-free at 877-272-6226 or by email at email@example.com
M-F 7am-5pm Pacific Time.
Who provides hospice
Hospice care is a team effort. A team of trained healthcare professionals,
including hospice physicians, hospice registered nurses, home health aides,
social workers, chaplains and grief counselors, work with caregivers to
care for the survivor and guide families throughout the hospice journey.
Each person performs a unique set of duties aimed at improving quality
of life for the pancreatic cancer survivor.
If home hospice care is provided, the key person on the hospice team is
the primary caregiver. The primary caregiver may be a spouse, partner,
parent, child, sibling, relative, friend or privately hired person. Most
likely this is the person who has been with the survivor throughout the
cancer journey, someone trusted and with whom the survivor feels completely
comfortable. Caregivers do many things including: giving medication, continually
monitoring changes in the survivor’s condition, preparing meals and helping
with all aspects of personal care. The primary caregiver works closely
with the hospice staff to keep the survivor as comfortable as possible.
Serving as a caregiver can be extremely rewarding. Many partners, family
members or friends who have helped with caregiving find it very satisfying
and would not have chosen any other option. However, caregiving is also
a considerable responsibility that is both physically and emotionally
demanding. Talk with your loved one and make sure you are both prepared
for the challenges ahead. Hospice may not work for all families or situations.
If a pancreatic cancer survivor does not have a primary caregiver, the
hospice team will assist the individual in finding available community
resources and support.
Affording Hospice Care
Most health insurance companies have a hospice benefit that
pays for all or most of the costs associated with hospice care.
This means that families usually pay very little and often nothing for
end-of-life care. Contact the survivor’s health insurance provider
for specifics on coverage.
Some insurers that provide a
hospice benefit include:
- Medicare - The Medicare Hospice Benefit
- Medicaid (in most states) – The Medicaid Hospice Benefit
- TRICARE (military health system)
- Some private insurance companies
If the pancreatic cancer survivor
does not have or qualify for any form of health insurance, some hospices
can still provide care at little or no cost. Talk with several
hospice organizations to learn what is available. For assistance
in finding hospice services available in your area, contact the PALS Program
toll-free at 877-272-6226 or email firstname.lastname@example.org.
PALS Associates are available M-F 7am-5pm Pacific Time.
Some costs are not covered by
health insurance when hospice care is given in a retirement home or nursing
facility. In this situation, the cancer survivor is responsible
for paying for rent, meals, and some routine care services that are provided
by nurses and health aide workers who are employed by the retirement or
Hospice can help with practical care, covering everything from insurance
and other financial matters to light housekeeping and routine chores.
The people who provide these practical services are housekeepers, social
workers and volunteers.
The hospice social worker can also help with many practical concerns including:
- explaining and helping to complete advance directives (see below),
- identifying and explaining insurance benefits
- explaining what services hospice benefits pay for
- setting up a system for staying organized
- linking the survivor, caregivers and family to community resources
- arranging for respite care that gives caregivers time off
- contacting friends and relatives
- assisting with funeral arrangements
Most hospice organizations have trained volunteers to help survivors and
their families. Volunteers may be available to:
- help with household chores and responsibilities
- run errands
- help with child care
- perform light housekeeping duties
- stay with the survivor while the caregiver takes time to rest
What are advance directives
and why are they important?
Advance directives give survivors the control and legal ability to state
exactly how they want to be cared for and who they want to make decisions
for them if they become unable to communicate their wishes. When survivors
are no longer able to discuss medical options with their healthcare teams
or their families, advance directives make their wishes known. Advance
directives may specify the types of medical support that a survivor does
and does not want, including the use of feeding tubes, breathing machines
and cardiopulmonary resuscitation (CPR).
Advance directives include documents such as a “Directive to Family and
Physicians” (more commonly known as a “living will”), a “Medical Power
of Attorney,” and a “Do Not Resuscitate” (DNR) order. These documents
can be prepared at the survivor’s request and must be signed by the survivor
before they are given to physicians. The survivor decides what provisions
will be included in each document. However, if the survivor is incapacitated
and not able to clearly communicate his or her wishes when hospice care
is needed, then certain family members can prepare these documents on
the survivor’s behalf.
A “Do Not Resuscitate” (DNR) order is an advance directive that states
that no life-saving medical procedures, including CPR, are to be used
if the heart or breathing stops. The use of CPR on survivors with advanced
pancreatic cancer may reduce quality of life and prolong the dying process.
Hospice staff and the survivor’s physician can arrange a discussion of
the benefits and risks of CPR and a DNR order so that an informed decision
can be made.
Hospice professionals support the survivor’s right to make their own decisions.
Survivors are not required to have a DNR order to receive hospice services.
If a survivor wants to have a DNR order, hospice staff can help make the
If advance directives have not been completed at the time of hospice admission
and the survivor would like to complete them, the staff can help to arrange
for and finalize these documents. Each option will be clearly explained
so that the survivor can make informed decisions. Advance directives and
DNR orders can be changed by the survivor at any time. In all cases, creation
or modification of advance directives must be initiated by the survivor,
not by the hospice or healthcare teams.
In addition to the hospice team, legal advisors can help finalize details
of the survivor’s advance directives.
The information and services provided by the Pancreatic Cancer Action Network, Inc. are for informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment. If you are ill, or suspect that you are ill, see a doctor immediately! The Pancreatic Cancer Action Network does not recommend nor endorse any specific physicians, products or treatments even though they may be mentioned on this site. In addition, please note that any personal information you provide to the Pancreatic Cancer Action Network's associates during telephone and/or email consultations may be stored in a secure database to assist the Pancreatic Cancer Action Network, Inc. in providing you with the best service possible. Portions of the constituent data stored in this database may be used to inform future programs and services of the Pancreatic Cancer Action Network, Inc., and may be provided in aggregate form to third parties to guide future pancreatic cancer research and treatment efforts. The Pancreatic Cancer Action Network, Inc. will not provide personal identifying information (such as your name or contact information) to third parties without your advanced written consent. 111230