Hospice Hospice
Patient Patient
& Family& Family
GuideGuide
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Primary Nurse: _________________________________________________
Social Worker: _________________________________________________
Spiritual Care Coordinator: ______________________________________
Hospice Personal Care Aide: ____________________________________
Supervisor/Team Manager: ______________________________________
Executive Director/Administrator: ________________________________
Notes/Questions/Reminders: ____________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
Contact Your Hospice Team
24 Hours/7 Days A Week
_______________
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Hospice Information
• Oce Hours and On-Call Guidelines
• About Hospice
• Your Hospice Team
• When to Call Your Hospice Team
• Frequently Asked Questions
• Resolving and Reporting Concerns
Clinical Information
• EPA Disposal of Controlled Substances
• Pain and Symptom Management
• Fall Prevention
• Infection Control
• Safety Information
• Emergency Preparedness Plan
• What to Expect at the End of Life
• What to Do at the Time of Death
Important Documents
• Hospice Email and Text Policy
• Notice of Nondiscrimination and
Accessibility Requirements
• Summary of Important Documents
• Authorization for Release of Information
• Notice of Privacy Practices
• Advanced Directives
• Informed Consent & Election of Benets
• Plan/Consent for Primary Caregiver
• Authorization for Payment
• Hospice Revocation Form
Information in this Guide
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Ask for the team member that you would like to speak with. The receptionist will contact that team
member and request that you be called back. Our team members are not allowed to give out their
direct contact numbers. If you need help immediately, ask the receptionist to connect you with the
RN supervisor, who will help you.
All Other Hours: Our triage service will route your call to an On-Call nurse or Administrator On Call.
This nurse has access to your medical record and will work with you right then and there to solve the
problem. If the problem cannot be solved over the phone, the nurse will contact our after-hours Hospice
RN, who will make a visit to your home. All calls are routed to the On-Call RN or Administrator On Call.
Oce Hours and On-Call Guidelines
There are many things that can be handled during normal business hours.
Simply call our oce. Some examples include:
Medication rells (unless you are running out) This is possible because we
work with your physician and we place many medications that you might
need, in your home. These medications can be used with instruction from the
hospice nurse.
Messages for your nurse: examples include needing supplies or inquiries
about your visits or a need to change visit time/day. Sometimes, there is a
need for a visit by the nurse, who will work with you to help the symptoms to
be handled so you can stay at home, in familiar surroundings with your family.
Calls for the social worker, spiritual care coordinator, or other team member
Lab results or lab work needs
Questions about the hospice aide or aide services
Hospice Information
• Oce Hours and On-Call Guidelines
• About Hospice
• Your Hospice Team
• When to Call Your Hospice Team
• Frequently Asked Questions
• Resolving and Reporting Concerns
Clinical Information
• EPA Disposal of Controlled Substances
• Pain and Symptom Management
• Fall Prevention
• Infection Control
• Safety Information
• Emergency Preparedness Plan
• What to Expect at the End of Life
• What to Do at the Time of Death
Important Documents
• Hospice Email and Text Policy
• Notice of Nondiscrimination and
Accessibility Requirements
• Summary of Important Documents
• Authorization for Release of Information
• Notice of Privacy Practices
• Advanced Directives
• Informed Consent & Election of Benets
• Plan/Consent for Primary Caregiver
• Authorization for Payment
• Hospice Revocation Form
A member of our hospice sta is available
to speak with you any time 24 hours/7 days a week.
Main Oce: __________________
In the unlikely event that you cannot reach us using the
main numbers, please call the Back-up Line: __________________
Our main oce is open: _____________________________________
If you need anything, please call us.
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About Hospice
What is Hospice?
Hospice is not a place, hospice is people. Hospice does not hasten death but strives to improve
your quality of life. Your care while on hospice is customized to meet your needs. The benet
provides for visits by a Registered Nurse, a Social Worker and a Spiritual Care Provider. Our hospice
also provides the services of a Hospice Aide. Your plan of care will be determined by the team’s
collaboration with you and your family members.
It is hospice’s job to make sure you are not in pain and that you get the medical, spiritual, social and
supportive care that you need. In addition to our care for you, hospice makes sure that your loved
ones receive the support they need during your time on hospice. You and your loved ones are at the
center of our circle of care Hospice is here to accompany you on your very personal journey.
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Hospice Levels of Care
There are dierent levels of care that hospices
can provide.
Routine Home Care
Most of your days on hospice will be what
Medicare refers to as Routine Home Care. It is
important to understand that “Home” is wherever
you reside, whether it be your own home, an
assisted living community or a long-term care
facility. Our hospice team members will provide
care for you intermittently in your home. The
frequencies of these visits will be dictated by the
care plan we develop with you and your family
as well as issues that may arise in your condition
and symptoms.
Short-Term Inpatient Respite Care
Sometimes your caregiver might need a few
days to rest. When this happens, we can place
patients into a skilled nursing facility or inpatient
hospice unit for up to ve (5) days. If respite care
is needed, your social worker and your nurse will
work together to help make this happen.
Short-Term General Inpatient Care
Hospice will do everything it can to keep you
comfortable and symptom free at home, but some-
times the measures that hospice can give you at
home are not enough to ease your symptoms.
When this happens, we will work to place you into
a hospital or skilled facility for more intense care
and monitoring. This level of care is only for a short
time and our goal is always to return you home as
soon, and as comfortable as possible. How long
you will remain on General Inpatient level of care
will be dictated by how quickly your symptoms can
be brought under control.
Continuous Care:
Sometimes there is a health crisis that requires
frequent medical interventions that are beyond the
routine care that a family member can provide.
When this happens, hospice can increase the
number of hours that a nurse spends in your home
at your bedside to get your symptoms under
control. Just like with general inpatient level of
care, the symptoms are what decides how long
this level of care will be needed.
What does hospice cover?
Medicare Part A (or Medicaid) covers your hospice
care in full. If you have private insurance, then the
terms of that policy will direct what is and isn't
covered. The following is what is covered by your
Medicare Hospice Benet:
• Intermittent physician, nursing, social work,
chaplain and hospice aide visits
• Medical supplies and devices needed
to care for your disease
• Medications that are related to your illness
and other illnesses as they relate to hospice
• Physical, Occupational and Speech therapy
related to your hospice diagnosis
• Dietary counseling
• Volunteer services
• Bereavement counseling for you
and your loved ones
About Hospice
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Your Medicare (Medicaid) Hospice Benet will NOT cover:
Treatment that is not palliative or included in the plan that you develop with your hospice team
Care provided by another hospice that is not arranged through this hospice
Ambulance services that are not part of the hospice plan or related to a level of care change
Medications that are not approved by the hospice or part of the plan of care
Medications that are not related to your hospice illness
Emergency room or any doctor visits that are not arranged by the hospice
Any inpatient care at a facility that is not a contracted partner with our hospice
Sitter or private duty nursing care
Lab studies, treatments or tests that are not arranged for and approved by hospice
Room and Board
If you have a private insurance carrier, they will often cover the same things as Medicare,
but sometimes the process for reimbursement may be dierent than Medicare’s processes.
Our team will review your insurance plan with you so that you understand what you are
responsible for and how to access all of your hospice benets.
We will never refuse care to anyone because they cannot pay for it. If you have no insurance
or Medicare/Medicaid, our social worker will work with you to complete a nancial assessment
and help you navigate this process.
About Hospice
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Your Hospice Team
Primary Care Nurse:
Your primary care nurse is also called your “Case
Manager”. The Case Manager is a registered
nurse who is responsible for directing your
overall plan of care. The nurse will manage any
pain or other symptoms, order medications and
supplies, and communicate with your doctor and
the rest of the team. Your primary nurse will
come and see you at least every 14 days, but
typically nurses will see you more often. The
frequency of your nurse visits will be dictated by
your symptoms and the care plan we have
developed together.
Social Worker:
Our social workers are trained to provide coun-
seling, help with end-of-life planning, identify
community resources and provide emotional
support. Based on your needs and the needs of
your family, the social worker will come visit at
least once a month, or more often if needed.
Spiritual Care Coordinator:
The Spiritual Care Coordinator (SCC) is respon-
sible for helping meet your spiritual needs.
Maintaining the highest respect for your belief
system, our SCC’s provide spiritual counseling.
Our spiritual care coordinators will also collabo-
rate with your religious/spiritual community and
leaders to help you receive any support or visits
that might be needed. The SCC will visit once a
month or more often if you need it. Visits may
include life review, exploration of religious or
spiritual beliefs, singing of hymns, and the
reading of prayer and/or scripture.
Hospice Aide:
Hospice Aides are specially trained and certied
individuals who will help you with personal care
or activities that you can no longer do for your-
self, such as bathing, dressing, feeding, moving,
and positioning, as well as activities that are not
part of a traditional healthcare setting such as
painting nails or playing music. Our aides work
under the supervision of your case manager and
can only perform the duties designated by the
nurse. Hospice aides are not allowed to give
medications. The nurse case manager will
determine how often the aide needs to come
and visit.
Volunteer/Volunteer Coordinator:
The Volunteer Coordinator is the team member
who is responsible for nding and training
volunteers. All hospice volunteers are considered
"unpaid employees" and they have all of the
same background checks and tests as our
employees. Volunteers oer a variety of special
services for you and your family. If you are
interested in having a companion volunteer, let
your nurse or social worker know, or call our oce.
Bereavement Coordinators:
Bereavement care is a required part of all
hospice programs and will be provided to your
family for at least thirteen months. We hire
specialized teammates who are trained to
provide grief support through mailings, calls,
visits and support groups. While one individual
is usually identied as being the primary person
for bereavement, all persons in the family can
receive bereavement services.
Physicians:
Our hospice medical director, contracted physi-
cians, employee physicians, nurse practitioners
and your attending physician are all part of the
hospice team caring for you. These members of
the team are integral in managing symptoms or
other medical concerns. Our doctors and nurse
practitioners can make visits and order treatments
if needed as allowed by your place of residence.
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Any time there is a change in our patient’s condition, we want to know.
Here are some examples of when you should call us:
• Increased pain or pain that isn’t getting better with medication
• An increase in temperature to over 100 degrees, or a noticeable fever
• Rapid heartbeat (pulse) that is faster than normal
• Any change in mental alertness (excessive sleepiness, new or increased confusion,
hallucinations, diculty waking up)
• Change in skin condition (change in color, redness, new open areas or broken skin)
• Swelling that is increased or unusual
• No urination for 24 hours
• No bowel movement or colostomy drainage for 48 hours
• Nausea, vomiting or diarrhea that isn’t stopping
• Having trouble swallowing medications, foods or uids
• Sudden diculty breathing or shortness of breath
• Any fall or injury
If you or anyone in your household is suspected of being, or tests positive for, COVID-19.
This list is not a list of every possible change that can happen – if at any time you feel
concern, give us a call so we can help!
When to Call the Hospice Team
Your hospice team knows that it can be frightening when there are changes in yours or
your loved one’s condition. Our goal is to reduce your stress and help make caregiving
less dicult. There are times that a simple phone call can help and there are times that
someone from our team may need to come visit.
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How will things get to me and my family?
How you receive your medications and supplies will depend on where you call home. If you
are in your family home, your medications may be delivered by an overnight service or
picked up from your local pharmacy. In an assisted living community or long-term care
facility, you will receive your medications seamlessly with your routine medications.
Any equipment needed for your care in your family home will be delivered by the company
that is contracted with the hospice. The team will help to arrange a time that is convenient
for you and your family, as someone must be home to accept the delivery.
Supplies may arrive by an overnight service or delivered by a member of the hospice team.
Does the entire hospice team have to come to my house?
Our regulations from the Centers for Medicare and Medicaid Services, which are the same
regulations that most commercial insurers follow; require that you and the entire hospice
team meet within 5 days of the admission. Meeting with everyone on the team will help you
to understand all the services that are available to you and will help us to develop a plan
that will meet your needs. We encourage you to use the services of the entire team, but
that decision is always yours. To remain on hospice, Medicare does require that your nurse
must visit and assess you at least every 2 weeks.
What happens if I change my mind about being on Hospice?
You may decide that hospice services are not for you. This may be because you have
decided to opt for curative care or for no reason at all. You can withdraw your consent
or “revoke” your hospice benet at any time. The date that you sign and date the
“revocation” papers, will be the last date of your hospice care and you will once again be
able to access your Medicare Benet for your hospice diagnosis. You can always call us
again if you change your mind. If your condition still qualies you for hospice care and your
physician agrees, you can once again access your hospice benet.
What if my condition improves?
Sometimes the extra care delivered by hospice is just what the patient needs for their
condition to improve. Medicare uses a specic list of symptoms or diagnostic ndings to
continue hospice care. If your condition improves, you may be discharged from hospice
services. You will have a right to appeal that decision. Hospice will explain that process
fully if this situation should ever arise. Just as when you revoke hospice services, you will
retain your Medicare coverage and can come back to hospice, if your physician agrees and
you meet the required criteria.
Can I give a gift to my hospice team member?
The best way you can thank our employees or volunteers to make a charitable donation by
contacting our main oce.
Frequently Asked Questions
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Step 1
• Talk about the problem with the nurse case manager assigned to you.
Most problems can be taken care of at this level. Be specic about what the
problem is and what you think a solution might be.
Step 2
• Call the supervisor/team manager of your home care team and request
an investigation. You should receive an immediate response, but in some
instances, Investigations may take a few days. You should hear back
on the progress of the investigation within 48 hours and a resolution within
5 business days.
Step 3
• If your problem continues, please call the Executive Director/Administrator
at __________________________.
If you do not receive adequate satisfaction, please know that at any time, it is
your right to report your concern to the state hotline. The purpose of the state
hotline is to answer your questions and to address complaints about local
home health and hospice programs.
Resolving and Reporting Concerns
Being able to make decisions about care and being able to speak about concerns or
complaints about care is very important. The hospice team members want to know if at
any time our care is anything less than exceptional. When something comes up, we ask
that you take the following steps.
State Regulatory Agency contact information:
____________________________
____________________________
____________________________
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EPA Disposal of Controlled Substances
* Other technologies which provide additional options for disposing of medicines have been developed.
https://www.fda.gov/media/109727/download
Link to search DEA Authorized Collector
in your community:
https://apps2.deadiversion.usdoj.gov/
pubdispsearch/spring/main?execution=e1s1
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Taking Medication
Your doctor and your nurse will work together
to make you as pain free as possible. It is
important that you follow the directions that
are given to you on taking pain medicine. It is
proven that the best way to control pain is to
“stay ahead” of the pain. This means you
should take your pain medicine even if you
are not feeling pain at the time it is due. This
will stop the pain from becoming severe.
Drowsiness
It is normal to feel more tired or sleepy when
you start a new medication or have an in-
crease in your dose. Usually this will only last
two to three days until your body adjusts to
the medicine. Some people sleep a lot when
they start a new pain medication because
pain is exhausting, getting relief from that
pain lets the body get the rest it needs.
Addiction
Many people fear taking narcotic medicines
for pain because they are worried, they will
become addicted. Please do not let this fear
prevent you from having a good quality of life.
While you may require increasing does of
medication to get the same relief, it is be-
cause your body adjusts to the medication
and needs require increasing doses for the
same relief. This is called tolerance.
Morphine and Pain
Many people are afraid of morphine because
they believe that it is a “last resort” or that it
will cause them to die. Morphine is not a last
resort drug; in fact it is one of the best drugs
that we can use to manage your pain with
less side eects and it is quick and easy to
adjust. Studies have shown that most of the
fears that people have about morphine are
not true but are myths. If you have any fears
or questions about morphine, ask your nurse
for more information.
Narcotics and Side Eects
Some common side eect of narcotics last
just the rst few days, this includes sleepi-
ness, nausea and itching. This is important to
know because we can help overcome these
symptoms. In addition, we don’t want to
mistake the initial itching caused by the
narcotic for an allergy. Please talk to you
nurse if you have any of these symptoms. If
we can manage these side eects for the rst
few days of treatment you should nd that
they resolve.
Constipation
The most troublesome long-term side eect
of narcotics is constipation. It is important to
stick to the regimen prescribed for you to
prevent constipation as it will be a side eect
for the duration of your treatment with narcot-
ics. If you do not have a bowel movement for
2 days, please be sure to call your case
manager.
Methods of Medication
If you can no longer swallow, there are many
ways for you to still take your medicine.
Some of the best ways to take medicine are
under to tongue, skin patches, through a
needle or rectally, through a special catheter.
Pain and Symptom Management
Sometimes hospice patients will have pain, but this should not be considered “normal”.
Most often, pain means that we need to change medications or try something new. Your
hospice team is going to ask about pain and symptoms on every visit. Please don’t delay
in reporting any new pain, any change in pain or any new or increased symptoms. We
want to be sure to always keep you/your loved one comfortable.
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For patients who are not
able to talk or who are con-
fused, can rate pain using
the following scale: 0-2
resting, 3-4 restless, 5-6
grimacing with movement,
7-8 thrashing or pulling
away with movement 9-10
thrashing, moaning or crying out.
It can be helpful for you to keep a pain journal and record when your pain is worse and better.
You can also record what makes it better and what makes it worse. All of this information helps
your care team make sure you are getting what you need.
SHORTNESS OF BREATH
Some diseases can cause patients to experience shortness of breath. There are many medications
that can help with this condition and your doctor and nurse will work with you to nd the right
treatment. Some helpful hints if you are having shortness of breath:
• Elevate the head of your bed
• Use oxygen if it has been prescribed for you
• Use a fan on lowest setting to blow cool air directly on your face
• Call your hospice team if you feel short of breath or anxious, they can instruct you
on these interventions or how to use the oxygen if it is your rst time
NAUSEA AND NUTRITION
Some conditions or medications can cause
nausea, and this will aect the ability to eat. Eating
is an important part of most cultures, and feeding
our loved ones is a non-verbal way that we
communicate our love. It can be dicult when
someone is not interested in food or cannot eat.
It is common to not feel hungry when you are
ill. The body knows how many calories it needs,
and when a person is mostly lying in bed, they
will be less hungry. Most hospice patients will
have some symptoms that aect their appetite or
nutrition: nausea, vomiting, shortness of breath,
chronic pain, diarrhea or constipation. Treating
the underlying cause is the rst step. Sometimes
medications can help to reduce symptoms that
lead to decreased appetite. Sometimes it is hard
to nd a food that the patient can eat. Be patient,
this is not because they don’t appreciate what is
being oered, but their disease is impacting them.
Swallowing Diculty
• We have a dietitian on our team who can make
suggestions about what type of diet would be
best. If you would like more information or help
with nutrition, ask your nurse if you can see the
dietitian.
• Thick liquids are easier to swallow as are softer
foods.
• Pineapples, citrus and cranberry juices can
be eective in breaking up mucous. Avoid milk
products if thick secretions are a problem – there
are several milk substitutes available that can
be used.
Decreased Appetite
• Frequent small snacks are easier to eat than
large meals.
• Fortied drinks (shakes made with ice cream
and smoothies) can provide increased calories.
Pain and Symptom Management
MEASURING YOUR PAIN
It is important that you measure how much pain you are having so that your doctor and nurse can
make sure you are taking the right kind and amount of medication. We use dierent pain scales to
look at how bad your pain is:
No Pain Mild, annoying
pain
Nagging,
uncomfortable
troublesome
pain
Distressing,
miserable
pain
Intense,
dreadful,
horrible
pain
Worst possible,
unbearable,
excruciating
pain
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• Don’t restrict eating – eat whatever you want
when you want it. Listen to what your body is
telling you.
Nausea
• Eat small frequent meals
• Avoid greasy or heavy foods. Bland diets are
often easier to tolerate. Fruit juice, applesauce,
bananas, chicken noodle soup and crackers
are all good choices if you are nauseous.
• Drink between meals, clear liquids that are cool
in temperature.
• Ice pops and Italian ice are easier to tolerate.
• Toast, crackers and plain baked potatoes are a
good choice.
• After you eat, stay upright for at least two hours
to prevent acid reux.
• Take prescribed medication for nausea as
directed by your hospice team. Most often it is
better to “get ahead” of the nausea in the same
way we did with pain.
Dry mouth/Sore Throat
• Chew your food thoroughly and take small bites.
• Cold foods, popsicles and iced foods can help.
Ice chips are an eective way to get uids in.
• Straws can help with swallowing.
• Creamy foods are another good choice:
pudding, creamy soup, ice cream….
• Avoid soda and carbonated drinks, acidic juices
(orange, pineapple), salty food and spicy foods.
These can make matters worse and make it
harder to eat.
BOWEL MANAGEMENT
There are many reasons that hospice patients
get constipated. Some medications (especially
narcotics) can cause constipation. Decreased
activity, diet changes and decreased uids can
also be contributing factors. Diarrhea can be the
result of your disease or your medications too.
Untreated, diarrhea and constipation can cause
other problems, so it is important to share any
bowel changes with your hospice team as soon
as they occur.
Drink lots of liquids and increase your ber intake.
Set a bowel schedule and try to move your
bowels at the same time of day, every day.
Keep a bowel log and note if your stool is
changing or if you are missing days.
Take any medications for your bowels as
prescribed – if you are taking medications for
constipation and you get loose stool, call your
hospice nurse rst for more direction – do NOT
stop taking your medication.
Call hospice if you:
Don’t have a bowel movement for two days.
Have abdominal distension or bloating.
Are unable to move your bowels despite
feeling the urge.
Have pain in your rectum when you move
your bowels.
Are passing or oozing liquid after not
moving your bowels for two or more days.
Pain and Symptom Management
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Falls happen for many reasons. There are
some things that make it more likely that
someone will fall.
• Vision or hearing loss
• Prior history of falls
• Use of aids such as canes or walkers
• Poor nutrition or dehydration
• Certain medications
• Being over 65 years old
• Conditions like slippery oors or loose rugs
Our Goal: To help you prevent falls!
In the Bathroom
• Raised seats and
safety frames make it
easier to get up from
the toilet.
• A hand-held shower
head, shower chair
and handrails reduce
falls – your hospice
nurse can help decide what you need.
• Add non-skid adhesive strips to the oor of
your shower/tub.
• Use soap-on-a-rope or liquid soap to prevent
bending over to pick up dropped items
Lighting
• Replace dim or
burned out bulbs
with bright,
soft-white lights.
• Use night lights or a
ashlight when you
walk at night.
• Make sure lights are
easy to turn on and o and that switches are
easy to reach.
• Keep things you use often within easy reach.
• Keep ashlights (with spare batteries)
available in more than one location.
Clear Hallways and Stairs
• Remove clutter,
especially from
hallways
and stairways
• Use handrails while
using the stairs
• Place non-skid
treads on stairs
• Use bright reective tape
on the edges of steps
Floors
• Remove scatter rugs
and throw rugs
• Use non-skid treads
or double-sided tape
under area rugs
• Keep oors free
from clutter
• Wipe up any spills
right away
• Make sure oors aren’t slippery – avoid wax
and polish that can lead to slips
Other
• Keep the things you use often at waist height,
so you can reach them easily
• Select furniture with arm rests to help you get
up and sit down
• Always keep your phone within reach
• Dizziness and weakness can happen quickly,
move from lying to sitting to standing slowly
to give your body time to adjust to your new
position.
When Our Patient Falls
If you are not able to get your loved one back
into the bed, connect with your facility sta for
assistance.
They will call us immediately so our nurse can
determine if the patient is safe, needs to be seen
or needs to go to a hospital.
Fall Prevention
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Here are some things that patients and caregivers can do
to prevent infection:
• Wash your hands before touching medication or changing bandages.
• Use best practices when washing hands: use hot water and soap, and make sure you wash
long enough to sing “happy birthday” twice. Wash up to your wrists, between your ngers
and under ngernails.
• Keep supplies in a clean, dry place o the oor –
let your team know when supplies are low.
• If supplies are wet or dirty, do not use them.
• Throw dirty bandages/dressing away in a sealed plastic bag and put it in the trashcan.
• Needles, blades and other sharp objects should be placed in a proper container – ask your
nurse to provide one if you require needles as part your treatment.
• Keep pets, children and bugs away from open wounds and clean supplies.
• If a wound requires special nursing care we may instruct you on how to reinforce a dressing if
the weather doesn’t allow us to get to your home.
PRECAUTIONS FOR WIDELY SPREAD INFECTIONS OR PANDEMIC
• To assure the health and safety of patients and sta, all patients will be screened prior
to their visit with hospice sta.
• The initial screening will be over the phone before your hospice team visits.
•The screening questions are about possible symptoms you are having or your exposure
to individuals who are infected. These symptoms include fever, cough, shortness of
breath or sore throat. Additional screening questions may be added depending on the
presenting symptoms of the infection. Based on the outcome of the screening the
hospice will follow CDC guidelines regarding in person visits and will utilize telehealth
visits when appropriate, to further prevent spread of the infection.
•For in person visits the temperatures of the patient and care givers will be checked.
You can be assured that your hospice team will use all appropriate infection control
precautions during your visit.
•It is important to note that our sta will be screened with the same questions and
temperature checks as our patients to assure early identication of any new exposure.
Infection Control
INFECTION CONTROL
Anyone can carry germs and viruses that cause disease and infection. This is why it is
important that everyone takes steps to stop infections. Handwashing is the best way to
prevent the spread germs and wearing gloves helps as well.
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Safety in the Home
Fire:
• Call 911 and have a
plan on how to exit
your home.
• Use smoke and
carbon monoxide
detectors.
Electric Safety:
• Use grounded plugs
whenever available
(three prongs).
• Do not use items with
frayed cords/broken
plugs.
• Limit the number of
items in a single plug
(extension cords and multi-outlet adaptors).
Poison Control
Safety:
• Keep medications,
poisons and cleaning
supplies away from
children and confused
patients.
• In the event of an
accidental swallowing of these items call 911 or
poison control center at 1-800-222-1222.
Oxygen Safety:
Oxygen can lessen
your symptoms and
can improve your
quality of life,
but it is also a very
combustible
substance that can be
very dangerous and
explode easily if not stored properly. We strongly
advise that you follow all these points closely:
• Never smoke, allow smoking, or have open
ames within 10 feet of the oxygen.
• Use your oxygen only as it is prescribed – the
ow rate should only be changed when a nurse
or doctor directs you.
• Do not use anything that can spark near
oxygen, this includes gas stoves with a
spark ignition.
• Keep oxygen concentrators away from the
wall to allow air to ow properly.
• Plug concentrators into grounded outlets
(three prongs).
• If you lose power, use your oxygen tanks and
notify your hospice team.
• Make sure any tanks you have are stored in a
stand to prevent rolling/falling.
• Store tanks away from direct sunlight and heat.
Remember to keep the “Oxygen in Use” sign
posted on your door and in the locations that
the oxygen company places them.
EMERGENCY PREPARATION
Here are some guidelines to follow in the event of an event that could limit our ability
to visit you or get you supplies:
• Always let your nurse know if you are getting low on medication – you should keep
four days supply on hand always.
• We may give you supplies or oxygen before you need to use them. This is because
sometimes symptoms start when least expected and then you will have what you
need as soon as you need it!
Remember: We are always just a phone call away and we are dedicated to
taking care of you. Please call us with any questions/concerns.
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Emergency Preparedness Plan
Floods
In the event of a ood
warning, it is important
that you have a plan in
place. If an evacuation is
issued, you need to be
prepared to leave your
home. Notify your
hospice team where you are going, along with
contact information. Here are some tips from
www.ready.gov/ - you can get more information by
visiting their website:
• Turn on your TV/Radio to receive the latest
updates.
• Know where to go - you may need to reach
higher ground quickly.
• Build or restock your emergency preparedness
kit: ashlights, batteries, cash and rst aid
supplies.
Prepare Your Home:
• Move important items upstairs if possible, and
secure outdoor furniture.
• Disconnect electrical appliances and do not
touch electrical equipment if it is in standing
water – this can cause electrocution.
• If instructed, turn o gas and electricity at the
main switch/valve.
Tornadoes
If you are under tornado
warning, seek shelter
immediately. Most injuries
associated with high
winds are the result of
ying objects, so protect
your head.
• Go to a pre-designated area such as a safe
room, a small windowless interior room on the
lowest level possible; the basement or below
ground is best. Move away from corners, doors,
windows and outside walls. Move as close to
the center of the building as possible. Get under
a sturdy table and cover your head and neck
with your arms, cover your body as you are able
to with heavy blankets, pillows, etc.
• If the resident is bedbound, try to move them as
far away from windows as you can. Use heavy
blankets to protect their head and face as much
as possible.
• Do not open windows.
• Do not go outside until the danger has passed.
• If you are in a trailer, vehicle or mobile home get
out immediately and nd a sturdy structure or
lie at in the nearest ditch and cover your head.
Do not try to out-drive a tornado or shelter
under an overpass or bridge. Get as low as
possible.
If an evacuation is issued, you need to be
prepared to leave your home.
Winter Storms
Many winter storms
are accompanied by
dangerously low
temperature and can
cause power outages
that last for days. As with
all other disasters, make
sure you have your
emergency kit in place and have a plan.
Pay attention to the TV/radio so you know
what is coming.
• Stay indoors during the storm.
• Drive only if absolutely necessary.
• Walk carefully - icy walkways can lead to falls
and injuries.
• Avoid overexertion by shoveling snow.
• Prepare your house for a power outage – have
lots of blankets available.
• Wear loose layered clothing, mittens are warmer
than gloves.
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Hot Weather
• Never leave anyone
alone in a parked car
with the windows up.
• Stay indoors as much
as possible.
• Drink lots of water, even if
you’re not thirsty. Limit alcoholic beverages.
• Closely monitor local TV/radio stations for
updates.
• Dress in loose tting, lightweight and
light-colored clothing, wear a wide brimmed
hat if outdoors.
• Stay on the lowest oor out of the sunshine.
• Avoid the use of salt tablets.
Seek medical attention if you feel any signs of
heat related illness: heavy sweating, muscle
cramps, excessive fatigue, weakness, dizziness,
headaches, nausea or fainting.
Hurricane
Be prepared when a
hurricane is coming.
Listen to local TV/radio
for updates. If an
evacuation is issued, you
need to be prepared to
leave your home. If you
must leave your home, let your hospice team
know where you are going. Have your emergency
kit ready. Close storms and shutters if you can
and stay away from windows. Follow ood
directions in the event of ooding. Charge your
cell phone 6 – 8 hours prior to the storm’s arrival.
Turn your refrigerator or freezer to the coldest
setting and open only when necessary. If you lose
power, food will last longer. Keep a thermometer
in the refrigerator to be able to check the food
temperature when the power is restored.
Emergency Kit
for the Home
Keep a kit with the following
items in case you have a
weather emergency:
• Battery-powered radio
• Water in clean milk/
soda bottles
• Batteries
• Medications
• Lamps and ashlights
• Extra blankets
• Food that doesn’t require heating
• Valid ID
• Manual can opener
• Home Hospice Folder
Shelter Supply Kit
If you need to evacuate to a
shelter or another location,
it is important to bring the
following and notify your
hospice team:
• Two-week supply of
medications
• Medical supplies and oxygen
• Any equipment that you need (walker,
wheelchair, cane, etc.)
• Bedding
• Sleeping solution (air mattress, cot, sleeping bag)
• Lightweight folding chair
• Extra clothing, hygiene supplies, glasses, hear-
ing aides (with batteries)
Important papers – including your hospice
home folder
• Valid Id with current name and address
Most shelters have electricity, so bring
your electrical devices with you (oxygen
concentrator).
Search for open shelters by texting SHELTER
and a Zip Code to 43362 (4FEMA).
Ex: Shelter 01234 (standard rates apply)
Learn more by visiting:
http://www.disasterassistance.gov/
Emergency Preparedness Plan
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Copyright © 2018 All Rights Reserved Hospice Insights
Preparing for the End of Life
The dying process is dierent for everyone, but there are some things that you can expect to see.
Physically, the body begins to shut down which starts as a slowing of normal functions. Emotionally,
socially and spiritually, most people will begin to withdraw from their attachments to living. It may
seem like your loved one is pulling away as they begin their transition.
It is dicult to estimate someone’s life expectancy – it seems that each person has some control over
when and how they pass on. Some people want a room full of family, others want to be alone. It is very
dicult for your care provider to tell you when the nal moment will occur. At times individuals seem to
get "stuck" in the dying process because they have a task to complete before they are able to let go.
Sometimes people need to repair a broken relationship, or they may need to resolve a spiritual
concern through confession or last rites. Some individuals need to be given permission to go from
their family. Dr. Ira Byock, in his book The Four Things That Matter Most (2014), says that the four
things that people need to say and/or hear at the end of their life are: “please forgive me”, “I forgive
you”, “thank you” and “I love you”. You can help your loved one transition by sharing these thoughts if
they are needed in your situation.
Our goal during this time is to help you and your family be prepared for what is going to happen
so it isn’t frightening. We will closely monitor for pain and other symptoms to ensure comfort.
Our supportive care team will help identify anything that your loved one may need for closure. The
following sections are general descriptions of some of the changes that you may see as your loved
one begins their transition.
What to Expect at the End of Life
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Physical Changes and Care Tips
The body will go through many changes as the end nears;
1. Cool Extremities: The person’s extremities become increasingly cool as circulation slows.
Skin may change color and become purplish and splotchy – this is called “mottling”. Blankets that
are soft and comfortable can help – do not use an electric blanket.
2. Increased Sleeping: Near the end of life, people sleep more. Some people stop
communicating, become unresponsive and dicult to rouse. This is a normal change. The last
sense a person loses at the end of life is hearing, so speak softly, gently and honestly to them.
Hold their hand and be present. Don’t talk about them as if they aren’t there, assume they can
hear everything you are saying – they probably can.
3. Confusion: Your loved one may become disoriented or confused. They may not
remember people or know the day or time. Using a white board with the date, day and time can
help. Identify yourself by name before you speak if they are not responsive, or if they are confused.
Speak normally, clearly, and truthfully. Always explain what you are doing: “it’s time to take your
medication so you don’t have pain.”
4. Incontinence: Loss of bowel and bladder control at the end of life is a normal. Keep your
loved one clean and dry, use barrier creams as your nurse directs. Your hospice nurse can also
oer suggestions on how to protect the bed and keep your loved one comfortable and preserve
their dignity.
5. Congestion: Some patients sound like they have gurgling uid in their chest when they
breath. This is not uncomfortable for them, but it can be very disturbing for the caregiver. This is a
normal change as the person loses the ability to swallow and cough. Suction makes the secretions
worse and is not recommended. Turn their head to the side, wipe their mouth with a clean, moist
cloth. Your nurse can recommend medications if the congestion is severe.
6. Decreased Intake: Near the end, most people lose interest in eating and drinking.
The body knows what it needs and will naturally slow intake as metabolism slows. Do not force
food or uids if your loved one is not interested, as this can cause additional problems and can
increase discomfort. Ice chips, ice pops, or a cool moist cloth to the forehead may be comforting.
Remember to keep their mouth clean with swabs and to keep their lips moist.
7. Decreased Urine: With decreased intake and reduced kidney activity, your loved one
may make less urine. Urine may become very dark in color as well. If you are concerned about an
infection or a clogged catheter, contact your hospice nurse.
8. Change in Breathing Pattern: At the very end of life, breathing typically changes to
an irregular pattern with increasingly longer periods between breaths. You may observe periods
of rapid followed by shallow breathing known as "Cheyne-Stokes" breathing. This is due to
decreased circulation and is very common. Elevating the head of the bed, turning them to their
side and holding their hand can bring comfort.
9. Elevated Temperature: As the body’s uid levels decline, the patient may have an
elevated temperature. A cool moist cloth to the forehead can help with comfort. Ask your
hospice nurse for other suggestions.
What to Expect at the End of Life
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Emotional/Spiritual/Mental Changes Care Tips
While the body undergoes end of life changes, the person is also completing important work on a
spiritual and social level. Often these emotional and spiritual changes can be seen by caregivers.
1. Giving away belongings and making funeral plans: Some people want to keep some control over
their life through the end. Giving belongings away is one way that the person can express love and make
their wishes known. Many people want to participate in planning for their funeral, others may not want to
discuss it. Although these discussions can be very hard for families to go through, it is important to let
your loved one do what they need to in order to have closure and as much control as they need at the
end of their life.
2. Decreased socialization: Near the end, some people tend to withdraw from their larger social circle.
They may want to be with only a select few individuals, maybe just one. If you are not part of this smaller
circle, it does not mean you are not important to the person, it means that you have already completed
your tasks with your loved one. If you are with your loved one near the end it is important to arm their
life, give support and oer permission for them to let go.
3. Withdrawal: The person may become less responsive and withdraw into themselves. They may enter
a coma-like state. This is the beginning of letting go and moving on. The last sense to leave a person is
hearing, so continue to talk with your loved one, hold their hand and say what you need to say.
4. Visual and Multisensory experiences: Your loved one may see and speak to people who have
already passed. They may say that they’ve been to a place or seen things that are not visible to you.
This is not a hallucination, nor is it a reaction to drugs; it is a common part of the dying process. Do not
contradict what they are saying or discount their experience. You can arm them and explain that this is
natural. If you or your loved one is frightened by these visual experiences, remember that this is very
normal and there is much we don't understand about the dying experience.
5. Restlessness: Near the end of life, people may make repetitive motions such as picking at
the air or linens/clothes. This can be a sign of decreased oxygen or a sign of unresolved or
unnished business that is preventing the person from letting go. Do not try to stop these
motions or interfere. Your hospice team members can help identify what is happening and
can oer suggestions on how to help. Some other things that might be helpful include
speaking to the person in a calm, quiet and soothing voice, lightly massaging their forehead,
recalling favorite memories or places, reading or playing music. Reassure your loved one
that it is okay to let go.
6. Communication and Permission: Your loved one may say things, make gestures or
ask for things that seem unusual. They may want to be reassured that you are ready to
let them go. Often people at the end of life will talk about wanting to go home, or
somewhere else that doesn’t seem to make sense. Give them permission.
Let them know that you will be alright. Say the words that you need to say
– give them permission to go.
7. Saying Goodbye: This is the nal gift of love that you can give and
receive. You can lie in bed with them and hold them, sit at the bedside
and hold their hand or simply be present – there is no wrong way to
say goodbye. Say everything that you need to say, share memories if
you want to. There is no need to hide your sadness or tears, they
express your love and help you let go. I love you, I forgive you,
please forgive me, thank you and Goodbye…
What to Expect at the End of Life
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Timeline for
End-Of-Life Changes
The dying process is dierent for everyone.
The following timeline serves as a general guide for
when you may see some changes in your loved one:
One to Three Months
• Decreased desire for food
• Increased desire for sleep
• Withdrawal from people and the environment
One to Two Weeks
• Even more sleep
• Confusion
• Restlessness
• Vision-like experiences
• Change in temperature, respiration, pulse,
and blood pressure
• Congestion
• No longer eating
Days or Hours
• Surge of energy
• Decreased blood pressure
• Glassy, teary eyes
• Half-opened eyes
• Irregular breathing
• Increased restlessness
• Cold, purple, blotchy feet and hands
• Weak pulse
• Decreased urine output
Minutes
• Gasping like breaths
• No awakening
How You Will Know
When Death Occurs
Dying may take hours or days.
No one can predict the time of death,
even if the person is exhibiting typical
end-of-life signs and symptoms. This
can sometimes cause fatigue and
confusion for loved ones. Even if you
are prepared for the dying process, you
may not be prepared for the moment of
death. It may be helpful for you and
your family to discuss just what you
would do at that moment.
Death is not a medical emergency for a
hospice patient. Nothing must be done
immediately. The signs of death include:
no breathing, no heartbeat, loss of
bowel or bladder control, no response,
eyelids slightly open, eyes xed on one
spot with no blinking, jaw relaxed,
mouth slightly open. Sometimes the
patient may expel air like a sigh, this is
not breathing so don’t be frightened.
Call your hospice team and a RN will
come, provide nal care for your loved
one, and take care of next steps.
What to Do at the Time of Death
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Hospice Email and Text Policy
If a hospice patient/family or primary caregiver chooses to communicate with a hospice sta person via
email or text message, our agency will take reasonable care to secure the transmission and storage of
any of these communications. However, once the agency transmits an email to that person, the agency
is not responsible for ensuring that (i) the email/text is not received or viewed by anyone other than the
intended person, (ii) the email reached the intended person, (iii) the intended recipient maintains the
security or the condentiality of the email/text. Our agency disclaims all liability arising from or related to
(i), (ii), (iii).
Further, if the hospice client elects to communicate with the hospice via email or text, the agency cannot
and does not guarantee (i) when that sta member will receive the message, (ii) when that sta person
will be able to review and respond to the email/text. Please do NOT use email/text to communicate with
any sta person in the event of an urgent issue, rather, call the hospice numbers provided in the front of
this handbook. The agency disclaims all liability arising from or related to (i) and (ii).
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Copyright © 2018 All Rights Reserved Hospice Insights
NOTICE OF NONDISCRIMINATION and ACCESSIBILITY REQUIREMENTS
Discrimination is Against the Law. Our hospice complies with applicable Federal laws and
does not discriminate, exclude, or treat people dierently on the basis of race, color, national
origin, age, disability, or sex.
Our hospice provides free aids and services to people with disabilities to communicate
eectively with us, which include qualied sign language interpreters, and written information
in other formats and languages, such as large print, audio, accessible electronic formats, etc.
We also provide free language services to people whose primary language is not English. This
includes qualied interpreters and information written in other languages.
If you need these services, call our main number. If you believe that our hospice has failed to
provide these services or discriminated in another way on the basis of race, color, national
origin, age, disability, or sex, you can le a grievance.
You can le a grievance in person or by mail, fax, or email. If you need help ling, we are
available to assist you. You can also le a civil rights complaint with the U.S. Department of
Health and Human Services, Oce for Civil Rights, electronically through the Oce for Civil
Rights Complaint Portal, available at https://ocrportal.hhs.gov/ocr/portal/lobby.jsf or by mail
or phone at:
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Room 509F, HHH Building Washington, D.C. 20201
1-800-368-1019, 800-537-7697 (TDD)
Complaint forms are available at http://www.hhs.gov/ocr/oce/le/index.html.
Ethics and Compliance
Our hospice strives to act responsibly and ethically. Our sta, volunteers, patients and families
are an important part of our goal towards compliance with our values, ethical standards, state
and national regulations. If you have any concerns about your care or the behavior of any of
our sta or volunteers, please call our main number and ask for our Executive Director/
Administrator, or other management team member, aording all involved the opportunity to
resolve any issues.
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Summary of Important Information
PATIENT RIGHTS AND RESPONSIBILITIES
This explains your rights, responsibilities, and explanation of hospice services.
RELEASE OF INFORMATION
Your medical record is strictly condential and protected by federal law. We may release
protected health information as explained in our Notice of Privacy Practices in order to carry
out treatment, payment and/or health care operations. Protected health information may be
received or released by various means including telephone, mail, fax, etc.
NOTICE OF PRIVACY
This notice describes how medical information about you may be used and disclosed and how
you can get access to this information.
ADVANCE DIRECTIVES
You should tell us if you have an advance directive so that we may obtain a copy to allow us to
follow your wishes. We will provide you care whether or not you have completed an advance
directive but having one will assure that your wishes are always followed.
HOSPICE ELECTION, CONSENT & ACKNOWLEDGEMENT
To receive hospice services under the Medicare Hospice Benet, the patient (or his/her
authorized representative) must elect hospice care by signing an election statement. Some
items, services and drugs may not be covered by hospice because they are not related to your
hospice diagnosis. When this determination is made, in most cases these items/services/ drugs
will continue to be covered through your standard Medicare plan. As a Medicare beneciary,
you have the right to appeal the decision of the hospice agency regarding non-covered items.
This decision is usually made when the hospice has determined that they are not related to
the terminal illness and related conditions. You have the right to contact the Medicare
Beneciary and Family Centered Care-Quality Improvement Organization (BFCC-QIO) for
immediate assistance.
As part of the admission process, we ask for permission to treat you, to release
information relative to your care and to bill and collect payments directly from
your insurer.
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Summary of Important Information
NOTIFICATION OF HOSPICE NON-COVERED ITEMS
Some items, services and drugs may not be covered by hospice because they are not related to
your hospice diagnosis. When this determination is made, in most cases these items/services/
drugs will continue to be covered through your standard Medicare plan. If you request the
addendum described below, it is important to share it with your other healthcare providers to
assist in making treatment decisions.
COVERED SERVICES ADDENDUM
Hospice covers treatments related to your hospice diagnosis. You may have some expenses
that are related to co-existing conditions but are not related to your hospice diagnosis. You may
request an itemization of these expenses at any time during your hospice care. If you request
this information on admission, the hospice must provide it within 5 days. If you decide that you
want this later in your hospice admission, it will be provided to you within 72 hours.
Please note that if you obtain equipment, supplies or services without coordinating with the
hospice, you will be responsible for their cost.
PRIMARY CAREGIVER PLAN CONSENT
Provisions for alternate caregiver if one should be necessary.
RIGHT TO IMMEDIATE ADVOCACY
As a Medicare beneciary, you have the right to appeal the decision of the hospice agency
regarding non-covered items. This decision is usually made when the hospice has determined
that they are not related to the terminal illness and related conditions. You have the right to
contact the Medicare Beneciary and Family Centered Care-Quality Improvement Organization
(BFCC-QIO) for immediate assistance.
AUTHORIZATION FOR PAYMENT
We will bill Medicare or your insurer directly for the services which we provide to you.
You authorize us to collect payments on your behalf.
HOSPICE REVOCATION
You choose to revoke your election of the hospice benet under the Medicare/Medicaid benet.
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Patient Rights and Responsibilities
Hospice Services:
Hospice is a coordinated health care program whose mission is to meet the unique physical, emotional, and
spiritual needs of patients and their families who are facing advanced illness and loss. This care is available
24 hours a day, 7 days a week, in both home and facility-based settings. With a focus on enhancing quality
of life, care is directed by an interdisciplinary team consisting of the patient/family, medical professionals and
chaplain. Volunteers are oered for respite or companionship as needed. Bereavement care is available to
anyone in the community who has recently experienced the loss of a loved one.
As a patient, you have the right to:
1. Exercise your rights as a patient of hospice at any time.
2. Not be subjected to discrimination or reprisal for exercising your rights.
3. Be treated with courtesy, dignity respect – this includes your property.
4. Voice grievances (or complaints) regarding treatment or care that is (or fails to be) furnished and the
lack of respect for property by anyone who is furnishing services on behalf of the hospice and have your
complaints addressed.
5. Receive eective pain management and symptom control from the hospice for all conditions relates to
your illness.
6. Be involved in developing your plan of care and be informed of any changes before they happen.
7. Refuse care or treatment.
8. Choose your attending physician.
9. Have a condential clinical record, privacy in your care, and be able to review your clinical record
according to HIPAA standards.
10. Be free from mistreatment, neglect, or verbal, mental, sexual, and physical abuse, including injuries of
unknown sources, and misappropriation of your property.
11. Receive information about the services covered under the hospice benet.
12. Receive information about the scope of services that the hospice will provide and specic limitations on
those services.
13. Be free from discrimination.
14. Restrict visitors and follow guidelines set by a facility, local, state and/or federal agencies during a pandemic.
15. Receive information in a way that you understand.
16. Make healthcare decisions, including the right to make advanced directives and be notied on the
agency’s policy on advanced directives.
17. Be notied, in writing, if services are going to be discontinued, in advance of that happening.
18. Receive information on any nancial responsibilities that you may have before you receive services.
As a patient, you have the responsibility to:
1. Participate in developing a plan for your care and modifying it as your condition or needs change.
2. Provide Hospice with accurate and complete health information.
3. Remain under a doctor’s care while receiving Hospice services.
4. Assist Hospice sta in developing and maintaining a safe environment in which your care can be provided.
5. Informing the hospice if you have changes made to any medications, treatments or plans during the course
of your time on hospice.
Hospice Hospice
Patient Patient
& Family& Family
GuideGuide