HospiceHandbook

The Hospice of Santa Cruz County offices are staffed from 8:00 am to 5:00 pm Monday through Friday. Nurses are available by phone 24 hours a day, 7 days a week and can make visits as needed.

Calling After HoursAfter 5:00 pm calls are received by our answering service. They will take your name and number, then have the nurse call you back. We are committed to responding promptly to your needs. If the nurse has not called you back within 15 minutes, please call again.

When the nurse calls, please have ready the names of medicines the patient is taking and the time the last dose was given. The nurse may give you telephone advice. If the advice does not work within a reasonable time, please call us again to let us know. If the problem cannot be resolved by phone, the nurse may decide a visit is needed.

Call Hospice If… We want to hear from you if you feel the need for help, advice, or support. Our Hospice nurse will make a visit if there is a change in the patient’s condition. Please call us if any of the below happen:

• Anunexpectedchangeintheperson’scondition• Injuryfromafall• Uncontrolledpain• Shortnessofbreaththatisnotrelievedwiththemeasuresinthishandbook• Nauseaorconstipationthatisnotrelievedwiththemeasuresinthishandbook• Questionsaboutmedications• Bladderpressureorpainifthepersoncan’turinate• Bleeding• Seizure• Agitationthatcan’tbecalmedwiththemeasuresinthishandbook• ProblemswithanIV,medicationpump,orcatheter• FeelingthepersononHospiceneedstogotothehospital• Believingtheperson’sheartorbreathinghasstopped• Anytimeyouarefeelingunsureaboutchangesandneedsupport

Call Hospice FirstRemember, in an emergency involving the person on Hospice, always call Hospice, not 911. Theremayberaretimeswhenthepersonneedstogotothehospital,butjustaswithotherinsurance, if Hospice does not approve it, you may be responsible for the bill.

(831) 430-3000

Contacting Hospice

2

The Hospice Care TeamMeet Your Hospice Team ...........................................................................................................4

Comfort CareControlling Pain .........................................................................................................................8Managing Other Discomforts ...................................................................................................11Bathing .....................................................................................................................................13Personal Care ...........................................................................................................................14Oral Hygiene ............................................................................................................................15Protecting Against Infection .....................................................................................................16Medical Equipment ..................................................................................................................16

Emotional & Spiritual ConcernsEmotional Concerns .................................................................................................................17Caring for the Spirit .................................................................................................................18Children in the Family ..............................................................................................................18Care for the Caregiver ..............................................................................................................18Accepting Limits ......................................................................................................................18Grief Support Services ..............................................................................................................19

Practical MattersMedications .............................................................................................................................20Personal Planning Checklist .....................................................................................................21Advance Directives ...................................................................................................................22BasicHomeSafety ....................................................................................................................23Disaster Preparedness ...............................................................................................................24Options for Help with Caregiving ............................................................................................25Insurance Coverage for Hospice ..............................................................................................25Complaint Procedures ..............................................................................................................26Ways to Give ............................................................................................................................27

Additional InformationPatient Rights and Responsibilities ...........................................................................................28Privacy Practices .......................................................................................................................30

We also encourage you to visit the Caregiver Support section of our websitewhere you will find more helpful information on each of these topics.

www.HospiceSantaCruz.org

CO

NT

EN

TS

3

Table of Contents

YOU

HospiceAide

Volunteer

HospiceDoctor

Chaplain

SocialWorkerNurse

Su

p p o r t S y S t em

Your Hospice Team

Nurse: _________________________________________________________________

Social Worker: ___________________________________________________________

Doctor: _________________________________________________________________

Hospice Aide: ___________________________________________________________

Chaplain/Spiritual Counselor: ______________________________________________

Volunteer: _______________________________________________________________

(831) 430-3000EN

TE

RIN

G H

OS

PIC

E C

AR

E

4

Hospice of Santa Cruz County professionals work as a team to support you. Your Hospice team may include a nurse, social worker, Hospice aide, chaplain, Hospice doctor, and volunteer. Youareatthecenterofthisteam.Ourgoalistoprovideexpertcareandsupporttoaddressyour medical, emotional, and spiritual needs at this important time. Your needs and preferences will determine which team members play a role in your care, although a nurse and social worker see everyone on Hospice care. Your Hospice team members will make periodic visits. They will schedule their visits ahead of time with you or your support person. Your regular doctor is still involved in your care and will guide us in decisions about your medications and treatments.

Meet Your Team

PRIMARY NURSE A registered nurse is assigned to every person on Hospice. This “primary nurse” oversees care and communicates with the other team members to arrange needed treatments and services. The nurse will:

• Makevisitstocheckonyou.Thesevisitsmaybeonceaweekorseveraltimesaweekdepending on your needs at the time.

• WorkwithyourdoctorandtheHospicedoctortoprovideneededtreatmentsinordertokeep you as comfortable as possible.

• Arrangeforanyneededmedicineorhomemedicalequipment.• Teachthepeoplesupportingyouhelpfultipssotheybecomemorecomfortableand confident in caring for you at home.

Sometimes a nurse other than your primary nurse may see you if you need a visit at a time when she or he is not scheduled. The nurses will communicate with each other and the other team members to stay up to date on your care needs.

MEdICAl SOCIAl WORkERA medical social worker is also assigned to every person on Hospice. She or he helps with many matters that may come up for the person facing illness and their support people. The social worker may:

• Helpfindsupportivecommunityresources.• Helpwithfinancialconcernssuchasgovernmentbenefits,disability,andfinancialand

estate planning.• Provideorarrangeindividualorfamilycounseling.• Helpwithfillingoutadvancehealthcaredirectivesorotherpaperwork.• Helpwitharrangingcareinoroutofthehomeifnecessary.• Assistinplanningfinalarrangements.

Like all the team members, the social worker will call ahead to schedule visits. If you need to

EN

TE

RIN

G H

OS

PIC

E C

AR

E

5

Your Hospice Team

talktoasocialworkeratanyothertime,justcallusandwewillmakesureyougetthesupportor information you need.

HOSPICE AIdEYournursemaysuggestaHospiceaidetohelpwithyourcare.Hospiceaidesareexpertsatgivingsafeandrespectfulpersonalcare.VisitsfromtheHospiceaidearedecidedonbythenurse and you or your support person, based on your needs and preferences. As much as possible, the same aide will support you. The Hospice aide may:

• Helpwithbathing,shampooing,anddressing.• Changebedlinensandhelpwithlightchores.• Teachthepeoplesupportingyouskillsforcaringforyouathome.• Preparealightmeal.

HOSPICE CHAPlAIN/SPIRITUAl CARE COUNSElOR Hospice chaplains, who are also called spiritual care counselors, provide support according to your wishes and unique beliefs. They provide a calming presence at a time when you may be exploring life’s meaning and purpose, self-worth, love, forgiveness, and questions about what is next. Some people explore these questions through religion and some in other ways. Our Hospice chaplains/ spiritual care counselors are knowledgeable about a wide range of religious and spiritual traditions and can help you and those close to you with:

• Caringlisteningandemotionalsupport.• Exploringquestionsaboutmeaningandpurpose.• Guidedmeditationforrelaxationorpainrelief.• Prayersandblessings.• Musicandsinging.• Arrangingcontactorvisitswithotherclergy.• Helpwithfuneralormemorialplanning.

A chaplain will call to you to describe how she or he can be of support.

HOSPICE dOCTORHospice doctors are specialists in medical care that focuses on keeping you as comfortable as possible. This includes treating pain or any other discomforts that you may have. Our doctors are available at all times to the nurses and your own doctor to talk over medical problems that may come up along the way. As part of the Hospice team, they will review your case regularly. Occasionally when a house call is needed, one of the Hospice doctors may visit you.

EN

TE

RIN

G H

OS

PIC

E C

AR

E

6

VOlUNTEER VISITOR Hospice volunteer visitors are specially trained people from the community who bring a listening ear, a caring heart, and an extra pair of hands to support you and those caring for you. They provide practical help as well as warmth, friendship, and understanding. Some ways they can help are:

• Providecompanionshipandemotionalsupport.• Readorsharemusicorotheractivitiesyouenjoy.• Provideachanceforthosecaringforyoutogooutorrest.• Assistwithrunningerrands,suchasshoppingorwalkingthedog.• Helppreparealightmeal.

A typical volunteer visit lasts 2 to 4 hours, one day a week, usually on the same day and time every week. Evening and weekend volunteers are also available. If you need to cancel your volunteer visit, please call us as soon as possible and we will contact the volunteer for you.Your social worker or nurse will ask you if you would like a volunteer to visit you. If you first decide you don’t want one but later change your mind, you may request one from the nurse or social worker at any time. You may also call our office to arrange it. The volunteer will call you to confirm a start time and date.

GRIEF SUPPORT STAFFGrief support is available at no charge to family and friends for a year following a Hospice death. Our Grief Support Department staff and volunteers are specially trained to provide support to those who have experienced the loss of a loved one. We also provide grief support services for children and teens during the illness if there is a need for support at that time. Your social worker or chaplain will provide more information about how these services can help.

EN

TE

RIN

G H

OS

PIC

E C

AR

E

7

Your comfort is our highest priority, and that includes making sure you are as free of pain as possible. Not all people on Hospice care will have pain, but you can be assured that our goal is to quickly and effectively address any pain you do have.

Communicating about Pain Getting help for pain will be easier if you can describe it as clearly as possible. One way to do this is by using a “0 to 10” scale. With this scale, 0 = no pain and 10 = worst possible pain. This rating helps the nurse and doctor know how best to treat your pain.

Other facts to tell the nurse about your pain include:

• Whereisthepain?• Whendiditstart?Wasittriggeredbyanything?• Whatdoesitfeellike?Burning?Sharpandstabbing?Dullandaching?• Doesanythingmakethepainbetter?Worse?• Doesitaffectyourappetiteoryoursleep?

Many people downplay the pain they feel. They may not want to complain or appear weak. Theymaythinkthattheyjusthavetolivewiththepainortheymayhavefearsabouttakingpain medication. Try to speak openly about your pain and any worries you may have about medication. This will allow your Hospice team to address your particular needs and concerns. Remember, we want you to be as comfortable as possible, keeping your own goals and values in mind.

CO

MF

OR

T C

AR

E

8

Controlling Pain

NOPAIN

0NO HURT

2HURTS LITTLE BIT

4HURTS LITTLE MORE

6HURTS EVEN MORE

8HURTS WHOLE LOT

10HURTS WORST

0 1 2 3 4 5 6 7 8 9 10

None Mild Moderate Severe

WORSTPOSSIBLE

PAIN

PAIN RATING SCALE ©Mosby

Ways Caregivers Can Judge Pain in Someone Who Is Not Speaking If you are caring for someone who is not speaking, it is still possible to get an idea of whether theyareinpainandifso,howmuch.Usethequestionsbelowandratehowtheyaredoingineachofthefiveareas.Circlethenumbernexttothedescriptionthatfitsbest.Thenaddupallthe circled numbers for a total score. This is the person’s pain scale rating.

Whatkindofmooddoesthepersonseemtobein?0.Smilingorrelaxed1.Anxiousorirritable2. Near to tears or crying

Whatistheperson’smovementlike?0. Normal1. Restless or pacing, or less movement that usual2. Not moving, rigid, or seemingly afraid to move

Isthepersonmakingsounds?0. None or usual sounds 1. Whimpering or moaning2. Crying out, screaming, or loud moaning

Whatistheexpressionontheperson’sface?0.Relaxedandcalm1. Sad, tense, or frowning2. Wincing or grimacing

Whatistheperson’sbodylanguage?0.Relaxed,normal1. Tense, guarding 2.Fetalposition;jumpswhentouched;strikingout

Total score: _______

Adapted from Kaiser Permanente Northern California Home Care & Bedford Vet Admin

Geriatric Research Center nonverbal pain scales

CO

MF

OR

T C

AR

E

9

Medication for PainDifferent people respond to or prefer different pain medications. The Hospice team will work with the person on Hospice and their caregivers to find the most helpful medications. Pain medication most commonly comes in the form of pills, liquids, patches, and suppositories. Somestrongermedicationsmaycausedrowsinessforafewdaysasthepersonadjuststothem.The person may also be catching up on sleep lost due to pain. After a few days the drowsiness lifts. The nurse will check in to see how well the medication is working and if the dose needs to bechanged.Almosteveryonetakingopioidmedicationswillalsoneedlaxativestokeepthemfrom becoming constipated.

Helping Pain Medication Work Pain medication works best when it is taken on a regular schedule. We don’t want to wait until the person begins to hurt so much that the pain gets out of control. If the person can be kept pain-freebytakingthemedicationeveryfourhours,forexample,thenwewanttogivethemedicationeveryfourhourseveniftheyarenotyetfeelingpainwhenthetimeforthenextdose comes around.

Theremayalsobetimeswhenthepersonwillhavepainbeforethenextdoseisdue.Gettingonthe right schedule can take some time, and medication needs can also change over time. Reporting to the Hospice nurse how the person is doing with pain medication will help us best treat the pain.

Other Ways to Relieve Pain There are other ways to help lessen pain. These may be used along with pain medication. Some methodsincludeapplyingheatorcoldnearthepainfularea,massage,meditation,relaxationexercises,orguidedimagery.YourHospicenurseorchaplaincangiveyoumoreinformationabout these methods.

Call Hospice if:- Pain is not controlled by any of the above measures- You have questions about medication- You need reassurance

CO

MF

OR

T C

AR

E

10

CO

MF

OR

T C

AR

E

11

MANAGING OTHER dISCOMFORTSOur focus on physical comfort includes responding to other physical changes that may be causingdiscomforttothepersononHospicecare.Belowaresomechangescaregiversmayseeand some tips for responding to them.

Shortness of BreathIllness can sometimes cause difficulty breathing or shortness of breath. This can cause the person tofeelveryanxious.Ifthishappens,herearesomethingsthatcanhelp:

• Makesuretheenvironmentiscalmandthatyouspeakcalmly.• Helpthepersonsitupbyraisingtheheadofthebedorusingextrapillows.It’seasierto

breathe sitting up. • Sitcalmlynexttothepersonandbreathewiththem,slowinganddeepeningyourbreathingsothattheycanhearandfollowyourexample.

• TalkwithyourHospicenurseaboutotherwaystohelpeasebreathing,includingmedication.

Call Hospice if:- Shortness of breath gets worse- The above methods don’t help- You hear bubbling or gurgling in the upper airways- You need reassurance

NauseaNausea can be caused by illness, medications, constipation, odors, or other factors. The suggestions below may bring some relief:

• Noticewhenthenauseahappens.Sometimesthereisapatternthathelpsinfiguringoutthe cause.

• Raisethepatient’sheadwithpillowsorbyraisingtheheadofthebed.• Keeptheairintheroomasfreshaspossible.• Tryclearliquidssuchasbroth,tea,orgingeraleuntilthenauseasettlesdown.• Encouragethepersontoeatslowly.Sometimessmall,frequentmealsarebetterthana

few large ones. After meals, have the person sit up for an hour or two if possible.• TalkwithyourHospicenurseaboutotherpossibleremedies.

Call Hospice if:- Nausea lasts for more than a few hours- You are vomiting and nothing helps- The medication you are taking for nausea is not working - You need reassurance

CO

MF

OR

T C

AR

E

12

ConstipationConstipation can be caused by decreased activity, diet changes, and medications. Prescription pain medications often cause constipation. This is not a reason to avoid pain medicine, but it does need attention. Ideally, the person on Hospice care will have bowel movements at least every2-3days.Thisistrueeveniftheyarejusttakingliquids.Letyournurseknowifithasbeen longer.

Here are some ways to prevent and treat constipation:• Givethepersonmorefluids,iftheywantandcantakethem.• Givethepersonmorefreshfruitsandvegetables,iftheywantandcaneatthem.• Tryaddingbran,prunes,orprunejuicetothediet.• TalkwiththeHospicenurseaboutstoolsofteners,laxatives,andsuppositoriesifchanges

to diet and adding liquids do not give relief.

Call Hospice if:- You have not had a bowel movement in 3 days- You have loose, runny stools- The medication to help constipation is not working - You need reassurance

AnxietyFeelings of worry, nervousness, tension, or uneasiness can come up for a person who is ill. This can lead to trouble sleeping, irritability, shortness of breath, and other discomforts. The suggestions below may bring some relief:

• Noticeifthereisapatternofwhentheanxietycomesupandwhathelpscalmit.• Keeptheenvironmentcalmbylimitingvisitors,playingsoftmusic,ortalkingquietly.• Massagetheperson’sarm,back,hand,orfoot.• Trybreathingexercises,prayer,meditation,orrelaxationexercises.TheHospicesocial

worker or chaplain/spiritual counselor can offer ideas.

Call Hospice if:- Theanxietyisgettingworse- Youneedtotalkwithsomeoneaboutfearsorissuesthataremakingyouanxious- You need reassurance

CO

MF

OR

T C

AR

E

13

BATHING BathinghelpsthepersonreceivingHospicecarefeelrefreshedandcanalsohelpkeeptheskinfrom becoming sore or irritated. At some point, the person may need help bathing. At first, the caregiver may want to give a sponge bath in a chair at the sink. Later, a bed bath may work best. Either way, make sure to provide privacy.

Offertoletthepersonwashtheirownfaceandprivateareaiftheyareable.Keepthemcoveredwith a towel or bath blanket as much as possible. Belowaresomeotherhelpfulsuggestions.YourHospiceAidecangiveyoumoretipsabouthow to give a safe and comfortable bath.

What You Will Need: • Towelsandwashcloths• Cleansinglotionormildsoap• Asinkorbasinofwarmwater(alargekitchenpotwillworkifyouareatthebedside)• Lotion• Cleanpajamas• Gloves(ifcleaningurineandstoolfromskinorifthepersonhasopensores)

How: • Ifmovingispainfulfortheperson,givethempainmedicationatleastanhourbeforethe

bath.• Makesuretheroomiswarmenoughtoavoidbecomingchilled.Haveextratowelsoraflannelsheethandy.

• Provideprivacyduringthebath.• Usesoaporcleanserslightly,andonlyonareaswhereneededbecauseofodor,perspira-

tion, or drainage. • Rinsethewashclothoften.• Replacethewaterwithfresh,warmwaterasoftenasneeded.• Startwiththefaceandworkyourwaydownward,finishingwiththefeet.• Rinseandpatdryasyougo,keepingtherestofthebodycovered.• Beasgentleaspossible.• Applylotiontotheskin.

CO

MF

OR

T C

AR

E

14

PERSONAl CARE At a certain point, the person on Hospice care may need help with changing and cleaning when they can no longer use the toilet. Needing this kind of help may be embarrassing for them. The caregiver can do much to help them feel less uncomfortable.

Bematter-of-factandalwaysshowrespecttowardstheperson.Puttheirprivacyanddignityfirst. Imagining how you would feel in the same situation can help you be sensitive to their needs. Close the door whenever possible and ask visitors to step outside of the room during personalcare.Thisincludeswhenthepersondoesnotappeartobeconscious.(OftenpeopleonHospiceareawareoftheirsurroundingsbutdonotshowit.)

Never show disapproval when the person wets or soils. Refer to the pad as a “brief” or “pad” rather than a “diaper.”

The skin may be delicate, so check every two hours or so to see if the pad needs changing. Dur-ing changing, check the person’s skin. Let the Hospice nurse know about any skin changes you notice. Apply powder or lotion as needed. Your Hospice aide or nurse can help you with this part of care.

What You Will Need: • Padorbrief• Washclothandwarmwater• Powderorlotion• Gloves• Plasticbagfordisposal

How: • Closecurtainsanddoorsandaskvisitorstostepoutoftheroom.• Washyourhandsandputongloves.• Letthepersonknowwhatyouaredoingevenifyoudon’tthinktheyareaware.• Keeptheperson’supperbodycovered.• Removethesoiledpadorbriefandanysoiledclothing.• Cleananddrythearea.Cleansefromfronttobackandturnthewashclotheachtime.• Removegloves.• Checktheskin.• Applylotionsorpowder,ifneeded.• Applythecleanpadorbriefandclothing.• Properlydisposeofsoileditemsandothersupplies.• Washyourhands.

CO

MF

OR

T C

AR

E

15

ORAl HYGIENECleansing the mouth is an important part of comfort care. At some point the caregiver may need to help with this. The mouth may be dry, and if the person is not eating or drinking regularly,theywillneedevenmoremouthcare.Brushtheteethorcleansethemouthtwiceaday if possible.

What You Will Need: • Softtoothbrushandtoothpaste• Smallbowl• Coolwater• Drytowel

How: • Washyourhandswithsoapandwater.• Havethepersonsituptopreventchoking.Putadrytowelundertheirchin.• Givethepersonasipofwatertomoistentheinsideofthemouth.• Useasmallamountoftoothpasteandbrushtheteethandgumsgently.• Havethepersonspitintothebowlandrinsewithcoolwater.

If regular brushing is not possible, your Hospice nurse or aide will show you how to cleanse the mouth using foam swabs.

Relief for a dry Mouth: • Offerlemondropsorotherhard,tartcandy.(Onlywhenthepersoniswideawakeandthereisnoriskofchoking.)

• Giveicechips.• Offeracool,wetclothtothemouth.• Artificialsalivacanbeboughtatthedrugstore.Ithasapleasanttasteandcanbe

sprayed into the mouth. • Asmallmistbottlewithwatercanalsobeusedtomoisteninsidethemouth.• Lipsalveorpetroleumjelly(Vaseline)canbeusedtoprotectthelipsfromcracking.

CO

MF

OR

T C

AR

E

16

PROTECTING AGAINST INFECTION When giving care at home, it’s important for caregivers to protect themselves and the person they are caring for from infection. Following the guidelines below will help ensure this.

Hand Washing The most important thing you can do to keep infection from spreading is to wash your hands often. This includes before and after making food, after blowing your nose, coughing or sneezing, after using the toilet, and before and after giving hands-on care. Lather with soap and scrub your hands well for at least 20 seconds. Rinse and dry them well, using clean, dry towels. You can also use a hand sanitizer that contains at least 60% alcohol.

GlovesKeepdisposablegloveshandyintheroomwhereyouwillbegivinghands-oncare.Glovesare needed if you will be changing dressings, handling bedpans, urinals, or pads, or coming in contactwithbloodorotherfluids.Washyourhandsbeforeandafterusinggloves.Letsomeonefrom your Hospice team know if you need gloves.

Clean-up Weargloveswhenhandlingfluidsandspills.Cleanupanybodyfluidsorspillsonsurfaceswithhot, soapy water. If possible, disinfect with a solution of 1 part bleach to 10 parts water. Put soiled tissues, dressings, bandages, disposable pads, and gloves in a plastic bag. Place this bag in a second bag and tie or tape it closed before putting it in the garbage.Collect contaminated laundry in a plastic bag. Wash it separately in hot water and detergent. If you hand wash a small contaminated item, wear gloves.

NeedlesIf the person you are caring for uses needles, dispose of them in a tough, puncture-resistant plasticcontainer.Anemptybleachbottleworkswell.Besuretoscrewthelidontightly.Generally, Hospice will supply you with a container for needle disposal. Talk to your nurse if you have questions about using it properly.

MEdICAl EqUIPMENT At some point, the person receiving care may benefit from having some medical equipment in the home. These items can make care safer and easier and add to the person’s overall comfort. Hospice of Santa Cruz County can arrange the delivery of any items that you and the nurse or doctor feel would be helpful. These items are covered as part of your Hospice benefit and include:

• Hospitalbed• Walker• Portablecommode• Showerchair• Wheelchair

Your Hospice nurse will talk with you about equipment that may be helpful in your situation.

EM

OT

ION

Al

& S

PIR

ITU

Al

CO

NC

ER

NS

17

Emotional Concerns

Serious illness can bring a sense of uncertainty and open up a wide range of emotions. This is true for the person on Hospice care as well as those close to him or her. For the person on Hospice, feelingsmaybeverymixed.Theremaybefear,sadness,loss,anger,orguilt.YourHospiceteamunderstandsthesefeelingsandknowsthateveryoneisuniqueintheirexperience.Theirexpertiseandsupportcanbeveryusefulinhelpingpeoplesortouttheirfeelings.LetyourHospice social worker know if you could use some emotional support. He or she can also provide a family or group meeting to help people talk through feelings and concerns together.

An Emotional Checklist for Those on Hospice Care • Clarifyyourgoalsbyasking,“Whatismostimportanttomenow?”

• Letothersknowhowtheycanhelpyouandbeclearaboutwhatyou’dliketodoforyourself.

• Beawareofpeopleandactivitiesthatdepleteyourenergy.Aftervisitingwithsomeoneordoingatask,askyourself“Didthatexperiencetakemyenergy,ordiditgivemeenergyandleavemyheartlighter?”

• Considerawrittenreminiscenceaboutyourlife.AskyourHospicesocialworkeraboutworkbooks that can serve as a guide for recording your memories, thoughts, and feelings.

• Considerwritingletters,bothfornowandasawaytoshareinfutureoccasions,suchasthe marriage of one of your children.

• Findnewwaystospend“qualitytime”asyougothroughphysicalandemotionalchanges in your relationships.

EM

OT

ION

Al

& S

PIR

ITU

Al

CO

NC

ER

NS

18

CARING FOR THE SPIRIT Seriousillnesscanbebothacrisisandanopportunity.Theremaybeadesiretoreflectonmemories,joysandsorrows,regretsandaccomplishments.Questionsandconcernsaboutfaith,purpose, love, and forgiveness are common. Talking about your spiritual concerns, sharing your faith rituals, or reconnecting with traditions from your past can be helpful and may bring comfort. Our Hospice chaplains, also called spiritual care counselors, are trained as ministers for all faiths. If you feel you or those close to you would benefit from this kind of support, talk with your Hospice chaplain/spiritual care counselor about how they can help.

CHIldREN IN THE FAMIlY When a family member has a serious illness, children sense the changes and need to understand whatishappening.OurGriefSupportProgramincludesexpertsinhelpingchildrenandtheirfamilies deal with illness and loss. Talk with your Hospice social worker or chaplain/spiritual care counselor if you would like more information about our children’s grief program.

CARE FOR THE CAREGIVER Caring for someone who is very ill can be physically and emotionally demanding. In addition, somecaregiversareoftenjugglingotherdutiessuchaswork,chores,caringforothersinthefamily,or their own health needs. Caring for yourself may be challenging, but it is very important.

What You Can do:• Takeadeepbreathseveraltimesaday.Deepbreathingbringsmoreoxygentoeverycell

and can refresh both body and mind.• Gooutsideforafewminutes,smellandfeelthefreshair.• Takeawalkorsitinyourgarden.• Ifyouhaveanexerciseroutine,trytoadheretoit,asthiscanhelpdecreasestress,and

boost energy.• Liedownfor20minutesorsitinareclinerwithyourfeetup.• Drinkplentyofliquids,especiallywater.• Eatawell-balanceddietatregularintervals.• Determineifvisitsarehelpfulorcausemorestress.KnowthatitisOKtoaskpeopleto

limit their visits. Talk to your Hospice social worker if you find this hard to do.

ACCEPTING lIMITSRemember that we all have limits to the amount of stress we can carry. If you have many duties related to caring for the person on Hospice, try to pay attention to signs that you may be getting exhaustedorreaching“burnout.”Thesesignsinclude:

• Beingtiredallthetimeandunabletogetenoughrest• Beingpronetoillnessoraccidents• Impatience,irritability,oranger• Foggythinkingandlossofenjoymentinotheractivitiesorhobbies• Lossofcontactwithfriendsandusualsocialactivities

EM

OT

ION

Al

& S

PIR

ITU

Al

CO

NC

ER

NS

19

Talk with your Hospice social worker if you find that this description fits your situation. She or he will be able to provide supportive suggestions.

There also may come a time to accept limits in your relationship with the person you are caring for. If the relationship has been difficult in the past, it’s natural to hope that things can now be repaired.Butpeoplegenerallydon’tchangetheirbasicpersonalitiesjustbecausetheyareill.Wemustacceptthattherearesomethingsthatwemaynotbeabletofixorchange.Bychangingour response to the person, it sometimes changes the way they react to us.

Talking with your Hospice social worker or chaplain/spiritual care counselor about this may bring support and comfort.

GRIEF SUPPORT SERVICES HospicecareextendsbeyondtheHospicestaytoincludeayearofgriefsupportforthosecloseto the person on Hospice. Grief is a very individual matter. Some may pass through it quickly, and others can find it painful and overwhelming. Hospice of Santa Cruz County offers supportive phone calls, grief support newsletters, individual counseling, support groups, and remembrance celebrations, as well as books and other materials for adults, children, and teens. Our services are available in English and Spanish. Talk with your social worker if you would like to learn more about this source of support.

PR

AC

TIC

Al

MA

TT

ER

S

20

MEdICATIONS

Giving MedicationsYour Hospice nurse will put together a medication folder to help you keep track of medication and dosages. The tips below will help you manage medications:

• Makesureyouarestockedwithmedicationbeforeweekendsandholidays.• Storeallmedicationstogether,awayfromchildren,inacool,dryplaceunlessdirected

otherwise.• Ifamedicationdoesnotseemtobeworking,contacttheHospicenursetoevaluatethedose.• Donotchangedosesorscheduleswithouttalkingtothenursefirst.• Storemedicationsintheiroriginalcontainers.• Medicationsshouldonlybetakenbythepersonforwhomtheywereprescribed.

disposing of Medications Families are often concerned about leftover medications. Medicines must not be thrown in the trash or disposed of in the toilet or sink. Hospice of Santa Cruz County’s policy is to follow all state and federal laws about proper disposal of controlled drugs such as narcotics. Your Hospice nurse will provide you with a kit for disposing of controlled medications along with instructions on how to use it.

Other medicines can be disposed of at any of the convenient take-back sites around Santa Cruz County. Your Hospice nurse can give you a list of current drop-off sites. You can also find the listatwww.sharpmedsolutions.orgorbycalling(831)454-2160.

PlANNING AHEAdMany people on Hospice have practical questions about “getting their affairs in order.” Thinking and planning ahead about these matters can help give peace of mind. The following check list can be useful in thinking through some of these matters. Your Hospice social worker can go through this list with you and provide suggestions in needed areas.

Practical Matters

PR

AC

TIC

Al

MA

TT

ER

S

21

Important documents to complete and compile now AdvAnce directive

Filloutanadvancehealthcaredirective(seemoredetailedinformationbelow).CompleteaPOLST(PhysicianOrderforLife-SustainingTreatment)formwithyourdoctororHospiceteammemberandpostonrefrigerator.

trust/WillContact your attorney for advice. If you need legal help, or if there is no will, you can contact the Santa Cruz CountyBarAssociationlawyerreferralserviceat(831)425-4755oremailsccbar@sbcglobal.net.

FunerAl PlAnningContact the mortuary of your choice to finalize arrangements for services.

list oF Key PeoPle to contActPhone numbers or e-mail addresses for friends, colleagues, relgious community members, and other people you would like notified.

imPortAnt PAssWordsPutpasswordsforATMs,computers,phones,email,andonlineaccountsinasafeplace.Besurethatsomeoneyou trust knows where they are.

imPortAnt documents to gAther· Insurance policies· Account location and numbers for important bills, loans, mortgages·Completelistofallpersonalproperty(realestate,stocks,bonds)·Safedepositboxandkeylocation· List of employer benefits· Certificate of military discharge if applicable

Records to update after a deathcredit cArds

Call the credit card customer service department to cancel or change the name on accounts.

heAlth insurAnceContact your insurance provider to change or terminate coverage. Notify doctors and dentists to cancel or rearrange future appointments.

veterAn’s AdministrAtionContacttheVABenefitsDepartment(800)827-1000.Youmusthavemilitaryservicerecordswhenyoucontact them.

utility comPAniesElectric, gas, water, telephone, cable, cell phone: you may need to have the name changed or the services adjustedorterminatedonalloftheseutilities.

Auto insurAnce/registrAtionNotifytheautoinsurancecompanyforadjustmentstopremiumsorcancellations.ContacttheDMVtotransfer titles of vehicles.

liFe insurAnce/retirement BeneFitsContact your insurance company directly for filing claims and investigating benefits. Contact the Human ResourcesDepartmentorPlanAdministratorforinformationonpensions,IRAs,403(b)or401(k)accounts.

BAnK Accounts/sAFe dePosit Box/security BroKersMany financial institutions require a copy of the Trust/Will or Death Certificate to make account changes.

sociAl security Generally the funeral home will contact Social Security for you, but you will need to contact them regarding anychangeofbenefitsorclaims(800)772-1213.

Personal PlanningChecklist

PR

AC

TIC

Al

MA

TT

ER

S

22

AdVANCE dIRECTIVESAn advance directive form puts your wishes about your health care in writing. It lets your family, doctor, and others involved in your care know your wishes if you become unable to communicate for yourself. In addition to insuring that your wishes will be respected, filling out an advance di-rective takes some of the weight off the shoulders of loved ones; they don’t have to guess about what you would have wanted.

An advance directive has two parts. In the first part you can name a person to be your “healthcare agent.”Thispersoncanlegallymakehealthcaredecisionsonyourbehalf.(TheagentisalsocalledaDurablePowerofAttorneyforHealthCare.)Inthesecondpartyoucannamethetreatmentsyouwould and would not want, and under what circumstances. This includes things like feeding tubes, ventilators, and CPR.

Thinking It OverDeveloping an advance directive involves thinking about what you would want for yourself and then talkingthoseideasoverwithpeopleyoutrust.Whatwouldbeyourhighestpriority?Itmightbetobefreeofpain,ortonotbeonaventilator(breathingmachine),ortoavoidgoingintothehospital.

Choosing an AgentWhen choosing an agent, you should consider people over 18 years old who know you and who you believe will honor your values and wishes, even if your wishes are different from theirs. The agent must be willing to accept this responsibility, be available, and be strong enough to ask questions and stand up for you.

Sometimes people assume that a spouse will automatically be recognized as the spokesperson forapatient.ButinCaliforniathereisnolegalorderforwhocanmakehealthcaredecisions.In some cases family members may disagree about the patient’s care.

Theagentyouchoosemaybeafamilymember,afriend,orevenyourattorney.Butitcannotbe the owner or operator of a care facility where you live or one of your health care providers, unless the person is related to you or is a co-worker.

Your Hospice social worker can answer any questions you may have about filling out an advance healthcare directive.

PR

AC

TIC

Al

MA

TT

ER

S

23

BASIC HOME SAFETY As your daily routines change, it’s a good idea to review your environment and daily activities to make sure your home is as safe as possible. Talk to your Hospice nurse or social worker if you would like more information about safety in your home.

Preventing Falls PeopleonHospiceservicesareexpectedtobecomeweakerastimegoeson.Thesechangescanputthematriskforfalls,whichareupsettingandcancauseinjuries.Thereareimportantthingsyou can do to prevent falls:

• Clearpathwaysofclutter• Removerugsortackthemdown• Usenightlightsinthebedroom,bathroom,andhallways• Usegrabbarsintheshower,tub,andtoiletareas• Putanon-skidmatinthetuborshower• Encouragestandingupslowlyaftereatingorresting• Ifgettingthepersontothebathroomisbecomingdifficult,tryabedsidecommodeinstead• Ifawalkerorcanehasbeenprescribed,useit• Payspecialattentiontosafetywhensomeonestartstakinganewmedication,asthismaycauseslowedreflexesordizziness

• Askforhelpwhenneeded

Moving and liftingAvoidinjurybypayingattentiontosomebasicguidelineswhenmovingorliftingthepersonyou are caring for.

• Don’ttrytomoveanyoneifthereareanydoubtsaboutdoingitsafely.• Ifthereisahospitalbed,moveittoacomfortableworkingheight.• Wearcomfortable,low-heeledshoesandkeepthefeetshoulderwidthapart.• Whenlifting,bendyourkneesandusethemusclesinyourarmsandlegs,notyourback.Don’tjerksuddenly;useasmooth,fluidmotion.Standascloseaspossiblewithyour toes pointing to the direction you want to move the person. Don’t twist your body to turn.

• Wheneverpossible,useasheetunderthepersontoliftorturn.

PR

AC

TIC

Al

MA

TT

ER

S

24

dISASTER PREPAREdNESSIntheeventofadisaster,suchasafloodorearthquake,HospiceofSantaCruzCountywillcontactpatients according to their needs. In the case of a large-scale disaster, your Hospice team would probably not be able to keep their regular visit schedules. However, we would make every effort to stay in contact with you. Here are some general steps you can take to be better able to cope in a disaster.

disaster Supplies kit• Ideallyyoushouldkeepatleastaweek’ssupplyofwater,food,medication,andmedical

supplies on hand. Each person in the household needs about a gallon of water a day. Food should be nonperishable, either packaged or canned. Make sure to have a non-electric can opener on hand.

• Keepanextrapairofglasses,abattery-poweredradio,aflashlight,andplentyofbatteriesinyourkit.Youmayalsowanttoputinanextrasetofcarkeys.

• Haveasupplyofcashinsmallerdenominationbillsandacreditcard.• Considerthespecialneedsofinfants,theelderly,ordisabledfamilymembersbyincluding

things like a pacemaker serial number or infant diapers and formula.

Home Preparations• Fastenshelvessecurelyandboltbookcasestothewall.Putlargeheavyobjectsonlower

shelves and don’t hang mirrors or pictures over beds.• Securethewaterheaterwithathinmetalstrapscrewedtothewallstuds.• Learnhowtoshutoffwater,gas,andelectricity.• Youmaywanttoarrangeforafriendorneighbortocheckonyouincaseofadisaster.

If You Have to Evacuate• Listentoabattery-poweredradioforthelocationsofemergencyshelters.• Wearsturdyshoesandprotectiveclothing.• Takeyourdisastersupplieskit.• Lockyourhouse,andifthereistime,letothersknowwhereyouaregoing.Youcanputasignonthedoornotingwhereyouexpecttobe.

• Youmaywanttomakeplansforcareofpetssincetheyprobablywillnotbeallowedinpublic shelters.

• Shutoffutilitiesifinstructedtodoso.• Checkwithlocalauthoritiesforsafetravelroutes.

PR

AC

TIC

Al

MA

TT

ER

S

25

OPTIONS FOR HElP WITH CAREGIVINGThere are times when caregiving help is needed beyond what family or friends are able to provide.TheHospicesocialworkercanoffersuggestionsandexplainoptionsforgettingadditional help with care. These may include:

• Assistanceputtingtogetherasupportnetworkandplanforcaregivingathome• Alistofprofessionalcaregiverswhocanbehiredtohelpinthehome• Informationaboutresidentialcareorassistedlivingfacilities• Informationaboutnursinghomeoptions

Your Hospice social worker and nurse can provide information about options to help with care and determine what is right for your situation.

INSURANCE COVERAGE FOR HOSPICEMedicare, Medi-Cal, all California HMOs and many private insurances provide Hospice coverage. Hospice of Santa Cruz County provides care to all Hospice-qualified patients who need it, regardless of ability to pay.

MedicareAnyonewithMedicarePartAisentitledtotheMedicareHospiceBenefit,whichcovers100%of the medical costs associated with Hospice of Santa Cruz County. This includes visits from all Hospice team members, medications, equipment, and supplies related to the terminal diagnosis. Other things that Medicare covers are short stays in nursing homes for caregiver relief and brief hospital stays when the Hospice authorizes it.

When Hospice of Santa Cruz County becomes the provider of care, all services, medications, and procedures must be pre-authorized by Hospice of Santa Cruz County. Like an HMO, we contract with specific providers for services, medications, and equipment we can’t provide directly. To make sure that contracted services are used, we must authorize and approve of charges. We will bill Medicare, Medi-Cal, and private insurance for Hospice services. If you arrange for treatment or equipment on your own, you may have to pay for it.

While on Hospice care, you will continue to use original Medicare to get care for any medical needs that aren’t related to your terminal illness. Your Hospice care team can provide more information on this if needed.

Occasionally, a person becomes very stable or improves to the point where they no longer meet the Medicare or insurance company criteria for Hospice care. If this happens, we may discharge the patient from service until we are needed again. Any patient has the option to leave the Hospice program at any time, for any reason. A Medicare patient who decides to go off Hospice is always entitledtoresumeservicelater.FormoreinformationondetailsoftheMedicareHospiceBenefit,talk with your Hospice social worker or go to the patient and family portal of our website.

PR

AC

TIC

Al

MA

TT

ER

S

26

Senior HMOsAnyonewhohasjoinedaseniorHMOcanstillreceiveHospicecarethroughMedicare.Thesenior HMO will continue to provide care for any medical conditions not related to the Hospice qualifying diagnosis; Medicare will provide for the Hospice coverage.

Medi-CalTheMedi-CalHospiceBenefitcoversvirtuallythesameservices,medications,andproceduresrelatedtotheterminalillnessastheMedicareHospiceBenefit.

Private InsuranceMost private insurance policies also cover Hospice care, although coverage varies from plan to plan. Hospice of Santa Cruz County verifies insurance coverage on all patients and will advise you what is or isn’t covered by your insurance.

Patients, family members, or caregivers who have a complaint about the care received from HospiceofSantaCruzCountyshouldnotifytheChiefExecutiveOfficerbyphoneorinwriting:

ChiefExecutiveOfficer,HospiceofSantaCruzCounty940 Disc DriveScottsValley,CA95066(831)430-3000

TheChiefExecutiveOfficerwillinvestigatethecomplaintinsuchawayastorespectthetotalconfidentiality of the person who submits it.

Complaints may also be filed with the Department of Public Health. The name and address of the office are provided below.

Department of Public HealthLicensing and Certification100 Paseo de San Antonio, Suite 235San Jose, CA 95113(408)277-1784or(800)554-0348(hotline)

Complaint Procedure

PR

AC

TIC

Al

MA

TT

ER

S

27

“How Can I Give Back?” It is a question that we often hear from grateful families that we’ve had the honor to serve. Here are a few ways you can help to ensure that all members of our community have access to quality, compassionate end-of-life care.

• MakeapersonaldonationtoHospiceofSantaCruzCountyintheformofcash,stockorlifeinsurance.

• IncludeHospiceofSantaCruzCountyinyourestateplansandpleasenotifyusofyourintention so we can personally thank you.

• DesignateHospiceofSantaCruzCountytoreceivememorialdonations.Youmaywishtoaddthe following line to your announcements:

Giftsinmemoryof(yourlovedone’sname)canbemadetoHospiceofSantaCruzCountybymail: 940 disc drive scotts valley, cA 95066 or online: hospicesantacruz.org

• AddaplaqueonourmemorialwallorredwoodgroveatourCenterforCompassionateCarein honor of your loved one.

• IncludeHospiceofSantaCruzCountyinyourcompany’smatchinggiftorworkplacegivingprogram.

Each Gift Makes a differenceWhile the core services that Hospice of Santa Cruz County provides are covered by Medicare and most private insurances, our organization must raise over $1 million each year so that we can provide further services benefitting patients and families. Generous community donations allow us to support an array of programs, including:

• CareforthosewithoutinsuranceorwithlimitedinsurancetocoverHospicecare

• Griefsupportservicesforadults,teens,andchildren

• TransitionalcareservicesforthoseconsideringHospicecare

• SpecializedHospiceservicesformilitaryveteransinourcommunity

For more information about giving, please contact us at (831) 430-3033Online donations can be made at www.hospicesantacruz.orgDonations can be mailed to: hospice of santa cruz county 940 disc drive, scotts valley, cA 95066Donationsaretaxdeductible(TaxID#94-2497618)

Thank you for the privilege of serving you and for considering a donation to Hospice of Santa Cruz County.

Ways to Give

Ad

dIT

ION

Al

IN

FO

RM

AT

ION

28

NOTICE OF PATIENT’S RIGHTSAs a person receiving services from Hospice of Santa Cruz County, you have the right:

• Tobefullyinformed,asevidencedbyyouoryourappointedrepresentative’sacknowledgmentprior to or at the time of admission, of these rights and of all rules and regulations governing patient contact;

• Tobefullyinformed,priortooratthetimeofadmission,ofservicesavailablefromHospice including the scope of those services and specific limitation on those services; and of related charges, including any charges for services not covered;

• Tochooseyourattendingphysician,asavailable;

• Tobefullyinformedbyaphysicianofyourmedicalcondition,unlessmedicallycontraindicated, and to be afforded the opportunity to participate in the planning of your medical treatment, including pain and symptom management;

• Torefusetreatmenttotheextentpermittedbylawandtobeinformedofthemedicalconsequences of such refusal;

• TobeadvisedofwhatHospiceservicesaretoberenderedandbywhatdiscipline,e.g.registered nurse, counselor, chaplain, etc.;

• Tobeadvisedinadvanceofanychangeintreatment;

• TobeassuredconfidentialtreatmentofpersonalandclinicalrecordsandtoapproveorrefusetheirreleasetoanyindividualoutsidetheHospice,exceptinthecaseoftransferto another health facility, or as required by law or third-party payment contract;

• Tobetreatedwithconsideration,respectandfullrecognitionofdignityandindividuality,including privacy in treatment and in care for personal needs;

• Tobefreefrommistreatment,neglectorverbal,mental,sexualandphysicalabuse,includinginjuriesofunknownsource,andmisappropriationofyourproperty,andtobeinformed that corporal punishment is prohibited;

• Tobeinformedbythelicenseeoftheprovisionsofthelawregardingcomplaintsandprocedures for registering complaints confidentially, including, but not limited to, the address and telephone number of the local district offices of the California Department of Public Health;

• Tobeinformedoftheprovisionsofthelawpertainingtoadvancedirectives,includingwithdrawal or withholding of treatment and/or life support;

• Tobeassuredthatthepersonnelwhoprovidecarearequalifiedthrougheducationandexperiencetocarryouttheservicesforwhichtheyareresponsible;

• Todescribepatient/familyresponsibilitiesinwritingandobtainreceiptthatthisinformationhas been received;

• TobeinformediftheHospiceisnotMedicarecertifiedandtobeinformedwheretoobtain information regarding Medicare Hospice benefits;

Additional Information

• Tovoicegrievancesregardingtreatmentorcarethatis(orfailstobe)providedandlackof respect for property by anyone who is providing services on behalf of Hospice of Santa Cruz County.

No program or employee of a program shall discriminate or retaliate in any manner against any patients or family or any employee on the basis or for the reason that the patient or family has presented a grievance or complaint, or has initiated or cooperated in any investigation or proceeding of any government entity relating to care, services, or conditions of the program.

NOTICE OF PATIENT’S RESPONSIBIlITIESAs a person receiving services from Hospice of Santa Cruz County, you have the responsibility:

• Toremainunderadoctor’scarewhilereceivingagencyservices

• Toprovidetheagencywithacompleteandaccuratehealthhistory

• Toparticipateinyourplanofcare

• Toobtainmedications,supplies,andequipmentorderedbyyourphysicianiftheycannotbe obtained or supplied by HSCC

• Toaccepttheconsequencesforanyrefusaloftreatmentorchoiceofnoncompliance

• Toprovideasafehomeenvironmentinwhichyourcarecanbegiven.Intheeventthatconduct occurs such that your or the staff’s welfare or safety is threatened, service may be terminated

• Tocooperatewithyourdoctor,agencystaff,andothercaregivers

• Totreatagencypersonnelwithrespectandconsideration

• Toadvisetheagencyofanyproblemsordissatisfactionwithourcare,withoutbeingsubjecttodiscriminationorreprisal

• Tosigntherequiredconsentsandreleasesforinsurancebillingandprovideinsuranceand financial information as requested

• Tonotifytheagencywhenunabletokeepappointments

• Toinformtheagencyofanyadvancedirectivesoranychangesinadvancedirectivesandprovide HSCC with a copy

• Tonotifytheagency,withaminimumof24hoursnoticeifpossible,ofanychangesofresidence or phone number

Ad

dIT

ION

Al

INF

OR

MA

TIO

N

29

Ad

dIT

ION

Al

IN

FO

RM

AT

ION

30

NOTICE OF PRIVACY PRACTICESWe understand that as a patient of Hospice of Santa Cruz County, you may be concerned about how your medical and health-related information may be handled. We are committed to safeguarding privacy and confidentiality for those we serve. This notice describes how medical information about you may be used and disclosed and how you can access this information.

Use and disclosure of Health InformationHospiceofSantaCruzCounty(“Hospice”)mayuseyourhealthinformationforpurposesofproviding you treatment, obtaining payment for your care, and conducting health care operations. Hospice has established policies to guard against unnecessary use and disclosure of your protected health information.

The following is a summary of the circumstances under which and purposes for which your health information may be used and disclosed.

To Provide Treatment: Hospice may use your health information to coordinate care within Hospice and with others involved in your care, such as your attending physician, members of the Hospice interdisciplinary team, and other healthcare professionals who have agreed to assist Hospice in coordinatingcare.Forexample,physiciansinvolvedinyourcarewillneedinformationaboutyour symptoms in order to prescribe appropriate medications. Hospice may also disclose your health information to individuals outside Hospice involved in your care including designated family members, pharmacists, suppliers of medical equipment, or other health care professionals.

To Obtain Payment: Hospice may use and disclose your protected health information to other providers so that they may bill and collect payment for treatment and services they provided to you.Forexample,yourhealthinsurermayrequirethatpriorapprovalforyourcarebeobtainedwithanexplanationofneedforHospicecareandtheservicesthatwillbeprovidedtoyou.

To Conduct Health Care Operations: Hospice may use and disclose health information for its own operations in order to facilitate the function of Hospice and as necessary to provide quality care to all of Hospice’s patients. Health care operations include such activities as:

• Qualityassessmentandimprovementactivities• Activitiesdesignedtoimprovehealthorreducehealthcarecosts• Protocoldevelopment,casemanagement,andcarecoordination• Professionalreviewandperformanceevaluation• Trainingprogramsincludingthoseinwhichstudents,trainees,orpractitionersinhealth

care learn under supervision• Trainingofnon-healthcareprofessionals• Accreditation,certification,licensing,orcredentialingactivities• Reviewandauditing,includingcompliancereviews,medicalreviews,legalservices,and

compliance program• Businessplanninganddevelopmentincludingcostsmanagementandplanningrelated

analyses and formulary development• BusinessmanagementandgeneraladministrativeactivitiesofHospice• ResolvinggrievanceswithinHospice• Complyingwiththisnoticeandwithapplicablelaws• FundraisingforthebenefitofHospice

For example, Hospice may use your health information to evaluate staff performance, combine your health information with other Hospice patients in evaluating how to more effectively serve all Hospice patients, disclose your health information to Hospice staff and contracted personnel for training purposes, use your health information to contact you as a reminder regarding a visit, or contact you as part of general fundraising and community information mailings (unless you tell us you do not want to be contacted).

For Appointment reminders: Hospice may use and/or disclose your health information to contact you as a reminder that you have an appointment for a home visit. Contact could be throughvariousmeans(e.g.telephone,answeringmachinemessage,email).

For treatment Alternatives: Hospice may use and/or disclose your health information to tell you about or recommend possible treatment options or alternatives that may be of interest to you.

For Fundraising Activities: Certaininformationaboutyou(e.g.names,address,phonenumber,datesyoureceivedcare)maybeusedinordertocontactyouoryourfamilytoraisemoneyforHospice. If you or your families do not want to be contacted, notify the Hospice Privacy Office at the address given below and request that your information be removed from our contact lists. Your request may include removal of your information from a specific fundraising campaign or from all fundraising campaigns. Your decision not to be contacted will not affect your treatment or the payment required of you. And, you have the right to change your decision at any time and be added back to the contact lists.

Ad

dIT

ION

Al

INF

OR

MA

TIO

N

31

Ad

dIT

ION

Al

IN

FO

RM

AT

ION

32

For Business Associates: There are some services provided in our organization through contracts withbusinessassociates.Forexample,wemayuseacopyservicetomakecopiesofyourmedical record. When we hire companies to perform these services, we may disclose your healthinformationtothesecompaniessotheycanperformthejobwe’veaskedthemtodo.To protect your health information, however, we require the business associate to appropriately safeguard your protected health information.

For individuals involved in your care or Payment for your care: Hospice may share your health information with a family member or other person identified by you who is involved in your care or payment for your care. We may tell your family or friends your condition. In addition, we may disclose medical information about you to an entity assisting in disaster relief efforts so that your family can be notified about your condition and location. If you do not want information about you released to those involved in your care, please notify the Hospice Privacy Office. Following an individual’s death, we may continue to disclose certain health information to family, friends, and others who were involved in the care or payment for care of the individual. Additionally, the use and disclosure of an individual’s health information is only limited to a period of 50 years following their death.

Federal privacy rules allow the agency to use or disclose your health information without your consent or authorization in a number of special circumstances as described below.

When legally required: Hospice will disclose your health information when legally required to do so by any federal, state or local law.

When there are risks to Public health: Hospice may disclose your health information for public activities and purposes in order to:

• Preventorcontroldisease,injuryordisability,reportdisease,injury,vitaleventssuchasbirthor death, and the conduct of public health surveillance, investigations and interventions

• Reportadverseevents,productdefects,totrackproductsorenableproductrecalls,repairs and replacements and to conduct post-marketing surveillance and compliance with requirements of the Food and Drug Administration

• Notifyapersonwhohasbeenexposedtoacommunicablediseaseorwhomaybeatriskof contracting or spreading a disease

• Notifyanemployeraboutanindividualwhoisamemberoftheworkforceaslegallyrequired

to report Abuse, neglect or domestic violence: Hospice is allowed to notify government authorities if Hospice believes a patient is the victim of abuse, neglect, or domestic violence. Hospice will make this disclosure when specifically required or authorized by law or when the patient agrees to the disclosure.

to conduct health oversight Activities: Hospice may disclose your health information to a health oversight agency for activities including audits, civil administration or criminal investigations, inspections, licensure or disciplinary action. Hospice, however, may not disclose yourhealthinformationifyouarethesubjectofaninvestigationandyourhealthinformationis not directly related to your receipt of health care or public benefits.

in connection with Judicial and Administrative Proceedings: Hospice may disclose your health informationinthecourseofanyjudicialoradministrativeproceedinginresponsetoanorderofthecourtoradministrativetribunalasexpresslyauthorizedbysuchorderorinresponsetoasubpoena, discovery request, or other lawful process, but only when Hospice makes reasonable efforts to either notify you about the request or to obtain an order protecting your health information.

For law enforcement Purposes: As permitted or requested by state law, Hospice may disclose your health information to a law enforcement official for certain law enforcement purposes as follows:

• Asrequiredbylawforreportingcertaintypesofwoundsorotherphysicalinjuriespursuantto the court order, warrant, subpoena or summons or similar process

• Forthepurposeofidentifyingorlocatingasuspect,fugitive,materialwitnessormissingperson

• Undercertainlimitedcircumstances,whenyouarethevictimofacrime• ToalawenforcementofficialifHospicehasasuspicionthatyourdeathwastheresultof

criminal conduct, including criminal conduct at Hospice • Inanemergencytoreportacrime

For lawsuits and disputes: If you are involved in a lawsuit or dispute, we may disclose your health information in response to a court or administrative order. We may also disclose your health information in response to a subpoena, discovery request, or other lawful process by someone else involved in the dispute.

to coroners and medical examiners: Hospice may disclose your health information to coroners andmedicalexaminersforpurposesofdeterminingyourcauseofdeathorforotherduties,asauthorized by law.

to Funeral directors: Hospice may disclose your health information to funeral directors consistent with applicable law and, if necessary, to carry out their duties with respect to your funeral arrangements. If necessary to carry out their duties, Hospice may disclose your health information prior to and in anticipation of your death.

Facilitating Patient request for organ, eye, or tissue donation: Hospice may use or disclose your health information to organ procurement organizations or other entities engaged in procurement, banking or transplantation of organs, eyes or tissue for the purpose of facilitating the donation and transplantation.

Ad

dIT

ION

Al

INF

OR

MA

TIO

N

33

Ad

dIT

ION

Al

IN

FO

RM

AT

ION

34

For research Purposes:Undercertaincircumstances,yourhealthinformationmaybeusedordisclosedforresearchpurposes.BeforeHospicedisclosesanyofyourhealthinformationforsuchresearchpurposes,theprojectwillbesubjecttoanextensiveapprovalprocess.Wemay,however,usemedicalinformationaboutyouinpreparingtoconductaresearchproject,forexample,tolookforpatientswithspecificneedsaslongasthemedicalinformationrevieweddoes not leave our entity.

in the event of a serious threat to health or safety: Hospice may, consistent with applicable law and ethical standards of conduct, disclose your health information if Hospice, in good faith, believes that such disclosure is necessary to prevent or lessen a serious or imminent threat to your health, safety, or to the health and safety of the public.

For specified government Functions: In certain circumstances, the federal regulations authorize Hospice to use or disclose your health information to facilitate specified government functions relating to military and veterans, national security and intelligence activities, protective services for the president and others, medical suitability for determinations and inmates and law enforcement custody.

For Workers’ compensation: Hospice may release your health information for Worker’s Compensation or similar programs.

Authorization to Use or disclose Health InformationOther than stated above, Hospice will not disclose your health information other than with your written authorization. If you or your representatives authorize Hospice to use or disclose your health information, you may revoke that authorization in writing at any time. If you revoke your permission, Hospice will no longer use or disclose your health information for the reasons covered by your written authorization. Hospice is unable to take back any disclosures already made with your permission. Hospice is required to retain records of the care provided to you. Specific cases that require written authorization are the following:

marketing: Authorization is required before we may use your health information for marketing purposes. If Hospice is to receive remuneration in connection with the marketing, Hospice must inform you of such as part of the authorization information.

sale of health information: The sale of your health information is allowed for certain purposes. Authorization is required before we may sell your health information. If Hospice is to receive remuneration in connection with the sale, Hospice must inform you of such as part of the authorization process.

research: For research purposes, certain uses of your de-identified health information are permitted without your authorization. In cases where the use does not allow de-identification, yourauthorizationisrequired.Strictrulesexisttogovernsuchuse.

Your Rights with Respect to your Health InformationYou have the following rights regarding your health information that is maintained by Hospice:

right to request restrictions: You may request restrictions on certain uses and disclosure of your health information. You have the right to request a limit on Hospice’s disclosure of your health information to someone who is not involved in your care or the payment for your care. However, Hospice is not required to agree to your request in all cases. You may request and Hospice must comply with a request for restriction not to disclose your health information to your health plan where you have paid for the treatment fully out-of-pocket. However, there areconditionsandexceptions.Ifyouwishtomakearequestforrestrictions,pleasecontacttheHospice Privacy Office to obtain a written request form.

right to receive confidential communication: You have the right to request that Hospice communicatewithyouinacertainway.Forexample,youmayaskthatHospiceonlyconductcommunications pertaining to your health information with you privately, with no other family members present. If you wish to receive confidential communication, contact the Hospice Privacy Office. Hospice will not ask you to provide any reasons for your request and will attempt to honor your reasonable requests for confidential communications.

right to inspect and copy your health information: You have the right to inspect and/or receive a copy of your health information. If you request an electronic copy of your health record, Hospice will provide you a copy of the portion of your record that we maintain electronically in the form or format you request, if it is readily producible. Any portion of your record that we do not maintain electronically will be provided to you in a paper format. You may request us to “transmit” the electronically maintained health information to a third party, provided that third party is clearly identified along with the desired mode of delivery.

A request to inspect or receive a copy of records containing your health information must be made in writing to the Hospice Privacy Office. If you request a copy of the information, Hospice may charge a fee for the costs of copying, mailing, electronic media, or other supplies associated with your request. Hospice will respond to you within 30 days of receiving your written request. There are certain situations in which Hospice is not required to comply with your request. Underthesecircumstances,Hospicewillrespondinwritingstatingwhyyourrequestwillnotbegranted and describing any rights you have to request a review of the denial.

right to Amend health care information: You or your representative has the right the request that Hospice amend your records, if you believe that your health information is incorrect or incomplete. That request may be made as long as the information is maintained by Hospice. A request for an amendment of records must be made in writing to the Hospice Privacy Office. Hospice may deny the request if it is not in writing or does not include a reason for the amendment. The request may also be denied if your health records were not created by Hospice, if the records you are requesting are not part of Hospice’s records, if the health information you wish to amend

Ad

dIT

ION

Al

INF

OR

MA

TIO

N

35

Ad

dIT

ION

Al

IN

FO

RM

AT

ION

36

is not part of the health information you or your representative are permitted to inspect and copy, or if, in the opinion of Hospice, the records containing your health information are accurate and complete.

right to an Accounting of disclosures: You have the right to receive a written list of certain disclosures Hospice has made of your protected health information. You may ask for disclosurestobemadeuptosix(6)yearsbeforeyourrequest.Hospiceisrequiredtoprovidealistingofalldisclosuresexceptforthefollowing:

• Fortreatment• Forbillingandcollectionofpaymentforyourtreatment• ForHospicehealthcareoperations• Occurringasabyproductofpermittedusesanddisclosures• Madetoorrequestedbyyouorthatyouauthorized• Madetoindividualsinvolvedinyourcare,orfordisasterreliefpurposes• Allowedbylawwhentheuseand/ordisclosurerelatestocertainspecializedgovernment

functions or relates to correctional institutions and in other law enforcement custodial situations

• Aspartofalimitedsetofinformationwhichdoesnotcontaincertaininformationthatwould identify you

Thelistwillincludethedateofthedisclosure,thename(andaddress,ifavailable)ofthepersonor organization receiving the information, a brief description of the information disclosed, and the purpose of the disclosure. To request this list or accounting of disclosures, you must submit your request on the appropriate form which can be obtained by contacting the HospicePrivacyOfficeattheaddressonthenextpage.

right to receive a Paper copy of this notice of Privacy Practices: You or your representative has the right to an additional copy of this Notice at any time, even if you have received this Notice previously. To obtain an additional copy, please contact Hospice’s Privacy Office. You may also obtain a copy of the current version of Hospice’s Notice of Privacy Practices at our website: www.hospicesantacruz.org

duties of HospiceHospice is required by law to maintain the privacy of your health information and to provide you or your representative the Notice of its duties and privacy practices. Hospice is required to abide by the terms of this Notice as may be amended from time to time. Hospice reserves the right to change the terms of its Notice and to make the new Notice provisions effective for all health information it maintains. If Hospice changes its notice, Hospice will provide a copy of the revised Notice to you or your appointed representative. You or your personal representative hastherighttoexpresscomplaintstoHospiceandtotheSecretaryoftheDHHSifyouoryourrepresentative believes that your privacy rights have been violated. Any complaints to Hospice shouldbemadeinwritingtotheHospicePrivacyOffice.Hospiceencouragesyoutoexpressany concerns you have regarding the privacy of your information. You will not be retaliated against in any way for filing a complaint.

Contact PersonHospice has designated the Privacy Officer as its contact person for all issues regarding patient privacy and your rights under the Federal Privacy Standards.

Effective DateThis notice is effective September 23, 2013

IF YOU HAVE ANY qUESTIONS REGARdING THIS NOTICE,

PlEASE CONTACT:Privacy Office

Hospice of Santa Cruz County940 Disc Drive

ScottsValley,CA95066(831)430-3000x372

37

Ad

dIT

ION

Al

INF

OR

MA

TIO

N

NO

TE

S

38

Notes & Questions

NO

TE

S

39

Notes & Questions

Serving you from two locations: The Mary & richard Solari cenTer for coMpaSSionaTe care

940 Disc Drive, Scotts Valley, CA 95066

The WaTSonville cenTer for coMpaSSionaTe care

65 Nielson St., Suite 121, Watsonville, CA 95076

(831) 430-3000www.hospicesantacruz.org