Hospice Hospice

Patient Patient

& Family& Family

GuideGuide

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

_______________

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

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.

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.

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

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

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.

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.

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

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:

____________________________

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

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.

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

• 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

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

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.

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.

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.

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

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

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

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

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

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).

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.

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.

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.

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