Advance Care Planning

Transcription

1 Advance Care Planning

2 Table f Cntents Advance Care Planning Getting Started Medical Decisin Making Questins t Ask Yur Health Care Team Advance Directives Financial Planning Imprtant Financial Infrmatin Imprtant Dcuments/Items Key Cntacts Legacy Planning What Is Legacy Planning? Legacy Ideas Overcming Obstacles Spirituality and End-f-life Planning Funeral Planning Cping and Supprt Supprt fr Caregivers Hw t Prepare Children Additinal Supprt Appendix A - Patient Educatin Infrmatin Sheets Appendix B - Advance Directive Frms

3 Advance Care Planning

4 Advance Care Planning Advance care planning is a prcess that helps yu express yur values, gals and wishes as they relate t yur health care. This wrkbk will help yu think thrugh the types f care yu wuld like t receive at every stage f yur treatment. During the prcess, yu will be encuraged t discuss imprtant tpics with yur lved nes. Having advance care plans in place can prvide peace f mind abut future health care decisins, and it can reduce cnfusin r disagreement amng lved nes if yu cannt speak fr yurself. Yur lved nes will knw what yur preferences are and will be able t hnr them. The infrmatin in this wrkbk is general in nature and fr educatinal purpses nly. This dcument shuld nt be interpreted as legal advice. Please cnsult an attrney if yu are seeking legal advice. The Prcess Advance care planning is a prcess that invlves the fllwing steps: Thinking abut what is imprtant t yu Discussing yur values and gals Recrding this infrmatin Requesting that yur medical team and yur medical pwer f attrney hnr yur gals and wishes Reviewing this infrmatin peridically Yu may begin planning at any time at diagnsis r during r after treatment. At any pint, advance care planning expresses yur wishes in writing, ensuring that yur lved nes and yur medical team knw what yu want in the event yu cannt speak fr yurself. Advance care planning is made up f several parts. These parts include: Statement f values, gals and preferences fr health care Advance directives Financial planning Legacy planning Funeral planning Sme find this tpic difficult t think abut r discuss. This wrkbk is a step-by-step guide t making advance care plans. Take yur time reading this wrkbk. Read a sectin. Talk with yur lved nes. Talk with yur medical team. Think abut yur chices, and take it ne step at a time. If yu wuld like assistance as yu review and cnsider this material, please cntact yur scial wrk cunselr at

5 Getting Started This wrkbk is a guide thrugh the advance care planning prcess. This is nt a legal dcument. The first step in planning is reflecting n yur values, gals and wishes. Start by thinking abut yur beliefs and what is mst imprtant t yu. Cnsider yur thughts regarding yur health and yur hpes fr yur care, such as: What are yur fundamental beliefs abut life, medicine and health care? D yu believe that life shuld r shuld nt be prlnged thrugh extensive medical interventin? Please explain. Hw d yur spiritual r religius beliefs shape yur decisin making? Are there sme medical treatments that g against yur beliefs, and if s, what are they?

6 What Yu Value What is mst imprtant t yu if facing a serius illness, permanent disability r death? Order this list t reflect what is mst imprtant t yu (1=mst imprtant). Ability t speak t my lved nes Ability t live as lng as pssible Ability t cmmunicate in sme way even if I can t speak Ability t read, write r sing Ability t eat and taste Ability t walk Being awake and thinking fr myself Being free frm pain as much as pssible Maintaining as much cntrl ver my life as pssible Maintaining my dignity Other: Cncerns When yu think abut a serius illness, permanent disability r death, what is mst cncerning t yu? Order this list t reflect what is f mst cncern t yu (1=mst cncerning). Being in pain Lsing the ability t think Lsing the ability t cmmunicate Being a financial burden n lved nes Being a physical burden n lved nes Being an emtinal burden n lved nes Being remved frm life supprt t sn Being left n life supprt indefinitely Being unable t care fr my lved nes Leaving my lved nes behind Leaving my pets behind Other:

7 Here are sme additinal questins yu may cnsider when thinking abut the end f life: 1. What d yu cnsider t be a gd death? 2. When yu are clse t dying, where wuld yu prefer yur death take place? Hme Hspital Nursing hme Inpatient hspice Other: 3. Wh wuld yu like t be present at the time f yur death? Or wuld yu like t be alne? 4. What wuld yu like t have happen in the time (days r weeks) befre yur death? Visit with family and friends Travel t: Make a list f things I want t d r see befre I die Think abut relatinships and make amends where needed Wrk n a legacy activity such as creating a memry bk Other:

8 Medical Decisin Making Nw that yu have cnsidered yur values and beliefs regarding end-f-life care, yu can apply them t actual medical situatins. Keep in mind that while it is helpful t knw what yur preferences are, they may nt always be medically apprpriate. If yu are unable t speak fr yurself, yur legal next f kin may wrk with a dctr t make decisins regarding yur care and treatment. Let s cnsider three areas f decisin making: 1. Breathing supprt 2. Eating and drinking supprt 3. Cardipulmnary resuscitatin (CPR) Breathing Supprt Breathing supprt can be prvided in many ways. Sme ways are invasive, and sme are nn-invasive. Examples f nn-invasive breathing supprt include placing a shrt tube in yur nse, r a mask ver yur nse and muth, t deliver xygen. These can be used at hme and in the hspital. An example f invasive xygen supprt is intubatin. This is a prcess by which a tube is inserted thrugh yur muth and int yur airway. The tube is cnnected t a ventilatr which pushes xygen int yur lungs. A mre permanent type f intubatin is a trachestmy pening, whereby a cut is made directly int yur windpipe. While intubated r n a ventilatr, yu will nt be able t speak. Mst f the time, yu will be sedated. At times, yu may be able t cmmunicate in ther ways, such as by writing r using sign language. Als, t lessen anxiety while n a ventilatr, yur dctr may give yu medicine t calm yu. Sme f the risks f mechanical ventilatin may include infectin, lung damage, a cllapsed lung and/r sleepiness frm the medicines. Yur persnal values, gals and wishes will help yu decide what is mst imprtant t yu. After reviewing this infrmatin, what type f breathing supprt wuld yu wish fr? Intubatin Trachestmy Ventilatr D yu have ther thughts r questins abut breathing supprt? See Appendix A fr further infrmatin n this tpic.

9 Eating and Drinking Supprt Fd and fluids give ur bdies energy. If yu cannt eat r drink n yur wn, there are ptins fr artificial nutritin. Sme frms f artificial nutritin include ttal parenteral nutritin (TPN) and intravenus (IV) hydratin. TPN allws nutritin t be delivered directly int yur vein. IV hydratin delivers fluids nly int yur vein. A nasgastric tube, r NG tube, is a tube that ges thrugh yur nse and int yur stmach. It is usually used fr nly a shrt time. The mst invasive frm f artificial nutritin, hwever, is a G-tube r a J-tube. A G-tube is placed thrugh yur skin and int yur stmach. A J-tube is placed thrugh yur skin and int yur small intestine. A G- r J-tube wuld be used fr lng-term feeding if yu can n lnger swallw. Tward the end f life, these medical interventins may nt be as beneficial and may cause discmfrt and blating. At the end f life, yur bdy simply requires less fd and fluid and may becme unable t eliminate r prcess waste. Yur persnal values, gals and wishes will help yu decide. After reviewing these nutritin and fluid supprt ptins, what type f artificial nutritin and fluid supprt wuld yu wish fr? TPN shrt term TPN lng term IV hydratin G- r J-tube NG tube D yu have ther thughts r questins abut eating and drinking supprt? See Appendix A fr further infrmatin n this tpic.

10 Cardipulmnary Resuscitatin (CPR) If yur heart stps wrking r yu stp breathing, yur health care team will perfrm CPR. They will push n yur chest t pump bld thrugh yur heart and use a breathing mask t push air int yur lungs. The success f CPR can depend n a persn s verall health befre his r her heart r lungs stp wrking. CPR may wrk well t save the life f smene in a car accident r after trauma. Hwever, the chance f success is much less fr smene with advanced cancer r anther disease wh is n lnger respnding t treatment. It is imprtant t knw that even if CPR restarts yur heart r breathing, yur cnditin may still wrsen. Fr example, yu culd: Have permanent injuries, such as brain damage due t lack f bld flw and xygen t the brain Have damage t ther rgans, such as the kidneys, r brken ribs Be n a ventilatr Be in a cma Given this infrmatin, what are yur wishes fr CPR? See Appendix A fr further infrmatin n this tpic.

11 Questins t Ask Yur Health Care Team There are many ther pssible medical situatins fr yu t think abut. These may include treatment-related side effects, disability, r shifting gals f treatment frm curing yur cancer t managing yur symptms. The fllwing are sme questins that yu may want t ask yur dctr: What is the gal f my treatment? Is it t cure, cntrl r imprve my symptms? Will yu penly discuss treatment ptins and utcmes with me? Why is this treatment recmmended? Hw lng is treatment expected t last? Can I expect any permanent changes due t my treatment? What will my quality f life lk like if I cntinue treatment? What will my quality f life lk like if I discntinue r chse nt t pursue treatment? What are my alternatives if I discntinue r chse nt t pursue further treatment? Will treatment affect my future fertility? Will treatment affect my sex life? What help is available if I am in pain? Will yu help my family and me make decisins? Will yu help me get ther supprt I may need (scial wrk, chaplain, supprtive care)? Will yu let me knw when treatment is n lnger wrking? What is hspice care? Will yu supprt my decisin t transitin t hspice if I am nearing the end f my cancer treatment?

12 Advance Directives There are fur dcuments that will help yu cmmunicate yur wishes: Medical Pwer f Attrney, smetimes referred t as Durable Pwer f Attrney fr Health Care Living Will, als knwn as the Directive t Physicians and Family r Surrgates Out-f-Hspital D-Nt-Resuscitate Order Appintment fr Dispsitin f Remains The mst imprtant piece f advance care planning is talking abut yur wishes with yur family and lved nes. Include yur medical pwer f attrney in these cnversatins. Chse a time when everyne is calm and cmfrtable. Yu dn t have t cver every tpic. Simply start the cnversatin. Medical Pwer f Attrney When yu select a medical pwer f attrney, chse smene wh wuld best hnr, respect and fllw yur wishes. Als, be sure he r she is willing t take the respnsibility because, fr sme peple, it can be emtinally difficult. Share with him r her yur values and gals. This persn will have pwer t fllw yur wishes and make decisins when yu can t. The best way t avid cnflict is t maintain hnest cmmunicatin and cmplete yur advance directives in writing. Selecting a medical pwer f attrney may nt be an easy chice, but it is imprtant. It is especially imprtant fr individuals wh are separated, nt legally married r have mre than ne adult child. Once yu have selected yur medical pwer f attrney and he r she has agreed, yu can cmplete the required advance directive frms. (See Appendix B.) If yu have nt selected a medical pwer f attrney, mst states will designate smene based n a list f thse wh qualify as yur next f kin. Fr example, if yu are receiving care in the State f Texas, the legal next f kin is recgnized in this rder: yur spuse; any ne f yur adult children; either f yur parents; any ne f yur siblings; any ne f yur executrs f yur estate; and finally, any ne f yur adult next f kin in the rder named by law t inherit yur estate. This may nt be in line with yur wishes, s it is imprtant t cmplete yur advance directives in writing. In additin, cnsider hw much flexibility yu want t give yur medical pwer f attrney. Flexibility means allwing yur medical pwer f attrney t make decisins n yur behalf based n what is mst beneficial fr yu at the time, even if this is different frm what yu have expressed in the past. On page 2 f the Living Will frm under

13 Additinal Requests yu can dcument what level f flexibility, if any, yu want t give t yur medical pwer f attrney. Cnsider the fllwing: Ttal flexibility means that he r she culd change yur previusly stated wishes if medically apprpriate at that time. Sme flexibility means that there are sme wishes yu wuld nt want changed. Yu shuld dcument which specific wishes thse are. N flexibility means that he r she shuld hnr yur wishes withut any changes. Give cpies f yur advance directives t yur medical pwer f attrney and all medical prviders. Yu can update yur dcuments whenever yu wish. Be sure t replace any ld cpies with the new cpy. Living Will (Directive t Physicians and Family r Surrgates) A Living Will helps yu cmmunicate yur wishes abut yur medical care. It takes effect nly when yu are in the terminal phase f illness r injury. Parents may cmplete a Living Will fr a child under 18. If yu sign a Living Will, talk with yur dctr abut the directive and ask that a cpy be added t yur medical recrd. Out-f-Hspital D-Nt-Resuscitate Order An Out-f-Hspital D-Nt-Resusciate Order is an rder signed by a dctr. This frm allws the patient t refuse life-sustaining treatments when utside the hspital. If yu d nt have an Out-f-Hspital D-Nt-Resusciate Order and yur heart r lungs stp wrking prperly, health care prviders may d everything medically pssible t restart yur heart and help yu breathe. T shw that yu have an Out-f-Hspital D-Nt- Resusciate Order, yu must have an riginal r a cpy f the signed Texas Out-f-Hspital D-Nt-Resusciate Order r wear a special identifying necklace r bracelet. Please speak with yur health care prvider t btain this rder, and speak t yur scial wrk cunselr t btain infrmatin abut the necklace r bracelet. Appintment fr Dispsitin f Remains There are laws abut wh can make arrangements fr a persn after death. A medical pwer f attrney s appintment ends at the time f death. Yu may want t appint an agent t handle yur bdy. In Texas, there is a written dcument called Appintment fr Dispsitin f Remains. If n agent is appinted, the legal next f kin cntrls the remains. If yu wish fr a specific persn t handle yur funeral and ther final arrangements, it is in yur best interest t cmplete this dcument. Fr additinal infrmatin, please cntact yur scial wrk cunselr. See Apendix B fr Advance Directive Frms.

14 Financial Planning

15 Financial Planning Planning fr help with yur finances is imprtant as well. The fllwing wrksheets will help yu gather yur financial infrmatin and ther imprtant dcuments as yu prepare yur Last Will and Testament. They will als serve as a tl fr yur lved nes in the event f yur death. In additin t the medical advance directives, ther legal dcuments yu may cnsider cmpleting include a Durable Pwer f Attrney and a Last Will and Testament. A Durable Pwer f Attrney allws smene else t handle yur mney matters. State laws vary n Durable Pwers f Attrney. Yu may want t wrk with an attrney t cmplete these dcuments. Mst ffice supply stres carry general frms. Yu can als access legal dcuments frm nline legal vendrs. Signatures may require a ntary. A Durable Pwer f Attrney ends upn death; therefre, it is imprtant t cmplete yur Last Will and Testament in which yu appint an executr f yur estate wh will manage financial matters. A Last Will and Testament is a legal dcument that dictates yur final wishes abut yur persnal pssessins and yur dependents. It details wh will receive yur assets when yu die. As part f yur will, yu chse an executr fr yur estate. The executr carries ut the details f yur will and is the nly persn able t access yur medical recrds after yur death. If yu have yung children, cnsult an attrney in regards t issues f guardianship, custdy, trusts and any special circumstances. Yu may als use yur will t name a guardian fr yur children. Discuss yur intentins and appint a guardian wh yu wuld want t care fr yur children if yu are n lnger able r upn yur death.

16 Imprtant Financial Infrmatin Financial Assets and Lans Institutin Name Accunt Number Username and Passwrd Checking Accunt Savings Accunt Other Accunt Credit Unin Accunt Investments (Stcks r Bnds) Mutual Fund Accunts Retirement Accunts (401k, 403b, IRA) Pensins Mrtgages Credit Cards Persnal Lans Student Lans Health Insurance/ Health Savings Accunt Hmewner s Insurance/ Fld Insurance Car Insurance Life Insurance Lng-term Care Insurance Scial Security Card/ Statement Phne Bill Electric Bill Water Bill Gas Bill

17 Imprtant Dcuments/Items Imprtant Dcuments Lcatin Other Infrmatin Prperty Paperwrk (Huse Deed, Car Title) Safe Depsit Bx Military Paperwrk Institutin: Key lcatin: Bx#: Durable Pwer f Attrney Medical Pwer f Attrney Living Will Last Will and Testament/ Trusts Beneficiary Designatins fr Retirement Accunts Marriage License Divrce Decree Cemetery Plt Infrmatin Pre-arranged Funeral Plans Past Tax Returns Picture ID and Birth Certificate Key Cntacts Key Cntacts Cntact Name and Cmpany Cntact Infrmatin Emplyer Accuntant/ Financial Advisr Physicians Lawyer Spiritual Advisr Family/Friends

18 Legacy Planning

19 Legacy Planning What is Legacy Planning? When yu hear the wrd legacy, what cmes t mind? Multiple generatins within a family? Prperty passed n t heirs? Traditins and special memries? What thers will remember abut yu after yu are gne? All f these ideas are crrect, but there can be mre. Yur cancer diagnsis is nly ne aspect f yur life. Yu have cuntless ther characteristics, values, stries and things that yu may want peple t knw and remember yu by. Legacy wrk is the act f putting yur thughts, advice, values, wishes, etc. int actual items that yur lved nes can cherish year after year. Legacy wrk is nt abut death and dying; it s abut life and living. It s abut making cnnectins and sharing precius mments with the special peple in yur life. Legacy wrk can prvide a sense f purpse and meaning. It allws yu t participate in creating memries in the mst meaningful way fr yu and yur lved nes. Legacy Ideas LEGACY ACTIVITIES Written Audi/Visual Crafts Miscellaneus Letters Playlists Scrapbk/phtbk/ cllage Recipe bk Jurnals Prfessinal vides Family tree Heirlms/keepsakes Gratitude list Hmemade recrdings Quilt/blanket Traditins/rutines Pems Digital pht frame Artwrk Meaningful gift Blgs Slideshw Handprint/ftprint Organizatin/schlarship/ fund

20 LEGACY TOPICS (Categries t help guide fcus f legacy activities) Favrites Traditins Family histry Relatinships Childhd/adulthd Milestnes Accmplishments/achievements Lessns learned Gratitude Hpes and dreams Difficulties that were vercme Spirituality/religin Overcming Obstacles t Cmpleting Legacy Wrk Wrking n legacy prjects can be difficult at times. Yu may face any number f bstacles frm physical and emtinal challenges t time cnstraints. The fllwing is a list f cmmn bstacles peple face during legacy planning as well as helpful tips n hw t address thse bstacles. Appearance Yur appearance can affect hw yu feel abut yurself. Yu may want peple t remember yu when yu lked yur best, and yu may prefer nt t have pictures r vides taken f yu. Yur lved nes, hwever, will want t remember yur entire life and jurney. They will als remember yu fr mre than just yur appearance. Tip: Cnsider prjects that use writing, crafts, audi recrdings r pictures frm the past. Cultural/Spiritual Values There are varius cultures, religins and spiritual beliefs, and they all pssess their wn values and custms. Sme are pen t discussin abut death and dying, and even have celebratry rituals. Others prhibit any type f end-f-life planning. Tip: Reflect n yur persnal values and beliefs. Decide what yu are cmfrtable with. Speak with a lved ne r spiritual advisr abut yur thughts and feelings. Decreased Energy Lack f energy can be frustrating when yur mind is sharp but yur bdy cannt physically d what yu want it t. Yu may want t start wrking n legacy prjects while yu are still healthy. Tip: Listen t yur bdy. D as much r as little as yu feel up t ding. Sme days will be better than thers. Legacy activities d nt have t be cmpleted in ne sitting. Cmplete yur prject in pieces ver time, and cnsider invlving friends r family t help.

21 Feelings/Emtins A majr piece f legacy wrk is chsing what ur lved nes will remember abut us. This ften requires us t revisit the past. Ding s may bring up a variety f feelings, including happiness, sadness, guilt, jy, anger, lneliness, appreciatin r gratitude. All f these feelings are nrmal. Wrking thrugh them can bring healing. Tip: Fr sme peple, cmpleting a prject in ne sitting is ideal as it allws them t fcus and prcess thrugh everything at ne time. Others find it better t d the wrk in small pieces. Still, thers enlist the help f lved nes and make it a grup prject. Anther ptin wuld be t start legacy activities that are mre cncrete, such as the handprint r recipe bk. Inability t Talk Sme peple have a cnditin that impairs r alters their ability t speak. They may nt want t have their vice recrded. Tip: Cnsider making an audi recrding befre yu start treatment. If a change has already ccurred, lk fr audi f yur vice frm past vides (i.e., hme vides, wedding vide, etc.). Or create a vide where yu hld up psters with written messages. Yu may prefer t cmplete activities that invlve writing r ther crafts. Inability t Write Numbness, pain in the hands r feet, general weakness, fatigue any f these can make writing difficult. Tip: Chse prjects that invlve pht, audi r visual recrdings. Yu culd als dictate yur stries, letters, etc. Ding this may seem less persnal, but the wrds are still yurs and frm yur heart. Mental Status Illness, treatments and medicines can affect ur mind. Thughts may nt be as clear and easy t prcess. Tip: Ask yur medical team if there is a way t temprarily adjust yur medicines r treatment t increase clarity and awareness. If adjustments are nt pssible, cnsider activities (such as writing letters) that can be dne in small segments. This way yu can start r stp the activity as needed. Time Finding time fr anything utside f ur daily rutines may be a challenge. Tip: Schedule time n yur calendar fr legacy wrk. Spread ut prjects and set aside an hur r tw fr a cuple f weeks. Or yu might prefer t get it all dne at ne time and dedicate a day r tw.

22 Spirituality/End f Life

23 Spirituality and End-f-life Planning Yur gals, wishes and beliefs als extend t end-f-life planning. Spirituality can be expressed in many frms. At the end f life, many peple cnsult with a spiritual advisr r have certain rituals in which they wuld like t engage. What custms r rituals are imprtant t yu? What custms r rituals are imprtant t yu at the end f life? Wh is yur spiritual advisr? When nearing death, what specific things wuld yu wish fr? Peple: T nt die alne T be surrunded by family T be surrunded by friends Envirnment: T be surrunded by flwers T be in a well-lit rm T be in a warm place T be in a quiet place

24 T be surrunded by yur favrite scent f: T be surrunded by phtgraphs f: T have music playing frm: Lcatin: In my bed At hme Outdrs A relative s hme Hspital Hspice Nursing hme

25 Funeral Planning Fr mst peple, funeral planning is an unfamiliar prcess. Yu may want t cnsider pre-arranging funeral plans. It may be helpful t chse a funeral hme that can guide yu in all yur ptins and keep yur wishes n file. This will help t ease the burden n yur lved nes when they have t carry ut yur final wishes. It can decrease the financial and emtinal stress in the future. Cnsider persnalizing the service t hnr yur faith, military service r ther special requests. Funeral hme cntact infrmatin: I wish t be: Buried (Lcatin: ) Cremated (Ashes scattered? Y/N If yes, where? ) Other: Whle Bdy Dnatin Allws yu t dnate yur bdy fr medical research and educatin. Mst medical institutins have acceptance criteria. Check with yur lcal medical schl. Organ and Tissue Dnatin Allws yu t dnate certain rgans and/r tissue. This is als subject t the acceptance criteria f medical institutins. In Texas, fr example, yu may visit fr mre infrmatin r t register nline. I wish t be remembered with a (check all that apply): Funeral service Religius service Viewing Memrial service Celebratin f life Other:

26 Yu can persnalize yur service r celebratin by specifying details here abut the flwers, music, clthing, eulgists, slideshw, etc. Yu may chse t write yur wn bituary.

27 Cping and Supprt

28 Cping and Supprt Discussing advance care planning smetimes triggers an emtinal respnse. These are serius, thught-prvking tpics. What can yu d t cpe with cncerns if they arise? Take a break. Take yur time wrking thrugh this wrkbk. Put it dwn and g fr a walk. Jurnal abut yur thughts and feelings. Sleep n it. Have pen cmmunicatin that invlves yur family, lved nes r clse friends. Lean n yur supprts. Engage them in the prcess. Ask fr help. Talk t yur dctr, yur nurse r yur scial wrk cunselr and let them help yu. Seek infrmatin and be an active participant in yur health care. Make a t-d list and check tasks ff as they are cmpleted. Set realistic gals. Yu are nt alne. Scial wrk cunselrs are available t assist yu and yur lved nes. They can help talk yu thrugh sme f the decisins and prvide shrt-term cunseling. They can als facilitate family meetings and supprt grups. There is n cst t yu r yur lved nes. Cunseling services include: Advance care planning Adjustment t diagnsis and treatment Cping with life changes Crisis interventin Grief and lss Sexuality cunseling Family cunseling Specialized care prgrams: - CLIMB: Children s Lives Include Mments f Bravery - KIWI: Kids Inquire, We Infrm Bereavement and lss cunseling Relaxatin therapies

29 Fr Caregivers An advance care planning discussin can be emtinal. Remember, advance care planning is abut being prepared. Supprting Yur Lved One Yu can be a sunding bard. Yu can challenge yur lved ne s ideas in a nnjudgmental manner t make sure he r she is certain abut his r her decisins. Yu can als help yur lved ne maintain cntrl f his r her care. Yu can advcate n his r her behalf and serve as the medical pwer f attrney. Supprting Yurself Take time fr yurself and practice self-care. Set reasnable limits with yur lved ne. Gather yur wn thughts in regards t advance care planning. This may mean prcessing difficult feelings and cming t terms with pssibilities and utcmes. Find supprt in a trusted friend, a member f the clergy r yur scial wrk cunselr. Hw t Prepare Children Remember that children may nt ask questins utright abut cancer, but they may be thinking abut them and creating scenaris in their minds that may be wrse than reality. Hnest infrmatin abut what is happening is best and mdels the behavir that it s OK t ask and talk abut cancer. If yu haven t already, tell yur children abut yur cancer, and/r yur prgnsis, as apprpriate. Talk t yur children abut all f the peple wh will take care f them. Engage in legacy wrk with them. (Please see Legacy Planning sectin f this wrkbk.) Engage yur children in the advance care planning prcess as apprpriate.

30 Additinal Supprt Nw that yu have had the pprtunity t review and wrk thrugh this advance care planning wrkbk, yu can cntinue t use it t help manage decisins yu may be faced with in the future. Keep this wrkbk in a safe place where yur lved nes can access it as needed. Remember t update yur chices as yur needs change. Scial wrk cunselrs are available t assist yu with the fllwing: Help yu wrk thrugh yur emtins and feelings Help explain cncepts within this wrkbk Help yu cmplete sme f the legal dcuments Help cnnect yu with additinal resurces Fr further supprt and assistance, please cntact yur scial wrk cunselr at

31 Appendix A Patient Educatin Infrmatin Sheets Advance Care Planning: Shrtness f Breath Advance Care Planning: Tube Feeding and Ttal Parenteral Nutritin (TPN) Advance Care Planning: Hydratin (Fluids) Advance Care Planning: D-Nt-Rususcitate (DNR) Orders

32 Advance Care Planning Shrtness f Breath There may cme a time in yur cancer treatment when breathing becmes difficult, labred r uncmfrtable. Shuld this happen, yur dctrs, nurses and health care team will wrk with yu t decide the best treatment plan fr yu. What causes difficult breathing? There can be many reasns fr shrtness f breath. Fr patients with cancer, sme f the mre cmmn reasns include: Nt getting enugh xygen (lw bld xygen levels) Cancer f the lung r cancer that has spread t the lung Fluid arund the heart r lungs (which can smetimes be drained) Lung infectins/pneumnia Heart failure (when the heart is weak and cannt pump nrmally) Inflammatin f the lungs frm radiatin, medicatins r ther causes Bld clts in the lung Asthma r chrnic bstructive pulmnary disease (COPD) Generalized weakness, which can invlve the breathing muscles Anything that causes the abdmen t push up n the diaphragm, such as fluid r a tumr, and gives the lungs less rm t expand when breathing Hw is uncmfrtable breathing treated? Depending n yur gals f care and the reasn fr yur shrtness f breath, yur dctr will wrk with yu t chse the best treatments fr yu. These treatments may include, but are nt limited t, the fllwing: Antibitics fr pneumnia Medicatins t help rid the bdy f extra fluid Sterids fr inflammatin Breathing treatments fr asthma r COPD Exercise and therapy fr weak muscles Anticagulants fr bld clts Chemtherapy, radiatin treatment r surgery fr tumrs Oxygen fr lw bld xygen levels Advance Care Planning: Shrtness f Breath The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3930 Page 1 f 3

33 Why is xygen supprt needed? If yu are unable t take in enugh xygen by breathing n yur wn, the simplest way t get the xygen that yu need is thrugh tubes placed in yur nstrils r by a face mask that cvers yur nse and muth. This type f xygen can be given at hme, as well as in the hspital. If mre xygen is needed, hwever, than can be given thrugh a simple nasal tube r face mask, there are ther types f xygen supprt, such as high-flw xygen, nn-invasive ventilatin with CPAP r BiPAP, r intubatin and mechanical ventilatin. Chsing which type is best fr yu will depend n hw little r hw much xygen yu need. Yur health care prvider will talk with yu abut the differences between each type and which wuld be best fr yu. High-flw xygen: If yur xygen needs cannt be met by using a simple nasal tube, yu may get relief frm high-flw xygen, which is delivered thrugh a special tube placed in the nstrils. This type f xygen cannt be delivered at hme. Therefre, yu will need t stay in the hspital while receiving this treatment. Nn-invasive ventilatin with BiPAP r CPAP: If yu need this type f xygen supprt, the xygen will be delivered by a mechanical ventilatr (breathing machine). The xygen will be pushed thrugh a tightly fitted face mask that may need t be left n at all times. This can make eating and speaking difficult. This type f xygen supprt uses pressure t push xygen int the lungs. Intubatin and mechanical ventilatin: Usually, patients are intubated and placed n a ventilatr r breathing machine when they are in respiratry failure and cannt breathe entirely n their wn. The machine pushes xygen thrugh the intubatin tube that has been placed int the windpipe (r trachea) thrugh the nse r muth. Patients receiving this type f xygen are usually in the intensive care unit. If it is determined, hwever, that a ventilatr is needed fr a lng perid f time, a mre permanent kind f tube (trachestmy tube) will be surgically placed in the windpipe thrugh an incisin (cut) in the neck. While intubated n a ventilatr, yu will nt be able t speak and will need t cmmunicate in ther ways, such as by writing r using sign language. Als, t lessen any anxiety yu may have while n a ventilatr, yur dctr may give yu medicatin. Sme f the risks f mechanical ventilatin may include: Infectin Lung damage A cllapsed lung Sleepiness (caused by the prescribed medicines) A breathing machine des nt treat disease, but helps yu breathe while yur health care team tries t imprve yur physical cnditin. The gal is t wean yu ff the ventilatr as sn as pssible. Hwever, if yur lungs d nt get strng enugh s that yu can breathe n yur wn, yu may stay n the ventilatr permanently, unless yu and yur health care team decide t fcus nly n cmfrt. Advance Care Planning: Shrtness f Breath The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3930 Page 2 f 3

34 What kind f treatments shuld I get when breathing is difficult? When thinking abut different types f breathing treatments, it is imprtant t cnsider hw likely they are t fix what is causing the prblem as well as what side effects and cmplicatins they may cause. Yur plan f actin culd include any f the fllwing steps: Treating the underlying reasn fr shrtness f breath (e.g., antibitics fr pneumnia) Prviding xygen supprt fr lw xygen levels that cause difficult breathing Using medicines such as mrphine r piids, r ther measures (e.g., a fan blwing n the face), t relieve shrtness f breath It is imprtant t nte that sme treatments may keep yu in the hspital when yu wuld rather be at hme. If s, yu may want t d a trial perid f a treatment t see hw it wrks. If the treatment des nt wrk, yu and yur health care team can decide t stp the therapy and prvide treatments t keep yu cmfrtable as previusly discussed. Getting xygen supprt may r may nt help yu. That is why it is always best t have an pen cnversatin with yur health care team and lved nes abut the benefits and risks f xygen supprt. Learn the facts, and understand the prs and cns and hw they apply t yu. D nt hesitate t talk with yur dctr r nurse abut any questins r cncerns yu may have. Resurces Find additinal infrmatin n advance care planning, including vides n varius tpics, at Advance Care Planning: Shrtness f Breath The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3930 Page 3 f 3

35 Advance Care Planning Tube Feeding and Ttal Parenteral Nutritin (TPN) At times during yur cancer treatment, yu may nt be able t swallw well r take in enugh fd and liquids t meet yur bdy s needs. Depending n yur situatin, gals f care and treatment wishes, yu and yur health care team will decide if additinal feedings thrugh a tube r IV (int a vein), als knwn as artificial nutritin, may help yu. Artificial nutritin may be given by a tube placed in the fllwing ways: Thrugh the nse int the stmach Thrugh a cut in the skin and then int the stmach r small intestine Int a vein (intravenus r IV) The purpse f this dcument is t help yu decide, alng with yur health care team, if artificial nutritin is right fr yu. Hw des artificial nutritin wrk? When yur bdy receives feedings thrugh a tube, the liquid frmula is absrbed int the stmach and intestines, allwing yur bdy t take in the nutritin it needs. Befre yu begin treatment, yur health care prvider will talk with yu abut the differences between each type and which wuld be best fr yu. What is tube feeding? Tube feeding is a way t receive artificial nutritin thrugh a tube that is placed int yur stmach. The tube ges thrugh the nse r thrugh the skin in yur abdmen. A tube placed thrugh the nse int the stmach is called a nasgastric (NG) tube. This is usually a shrt-term way t place a tube. If the tube needs t be in place lnger, a tube may be placed thrugh the skin int the stmach (G-tube) r small intestine (J-tube). Usually, this prcedure des nt require surgery. What is ttal parenteral nutritin (TPN)? When feedings are given by IV, als knwn as Ttal Parenteral Nutritin (TPN), the IV tube is cnnected t a bag f liquid frmula which, in turn, flws frm the bag, thrugh a tube, int a vein. This methd wrks best when the bdy cannt absrb feedings thrugh the stmach r intestines. Fr TPN, patients receive a central venus catheter (CVC). A CVC is a tube that is usually placed int a large vein in the arm r under the cllarbne. A CVC is placed lng-term, but yu can have it remved later when it is n lnger needed. Advance Care Planning: Tube Feeding and Ttal Parenteral Nutritin (TPN) The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3941 Page 1 f 2

36 When is artificial nutritin helpful? Additinal feedings may be helpful when yu: Are preparing fr surgery Cannt eat after surgery Have wunds that need t heal Have a blcked bwel r bwel bstructin Cannt swallw because f a blcked esphagus Cannt swallw because f severe pain f the esphagus caused by radiatin, chemtherapy r infectin r fr ther reasns When shuld smene nt receive artificial nutritin? Artificial nutritin des nt wrk as well in peple whse bdies cannt use the nutritin prperly. This ften happens in the later stages f an illness, when the bdy begins t shut dwn. Cmfrt may be the primary gal f care at this time. Peple ften wrry that their lved nes will becme hungry and will need water r fd if it is nt given. Hwever, if hungry, patients usually becme full with a few sips f fluid r a few bites f fd. Shuld I receive artificial nutritin? Yur health care team will help yu chse what is best fr yur care. Getting feedings thrugh a tube may r may nt help yu. That is why it is always best t have an pen cnversatin with yur health care team and lves nes abut the benefits and risks f artificial nutritin. Learn the facts, and understand the prs and cns and hw they apply t yu. D nt hesitate t talk with yur dctr r nurse abut any questins r cncerns yu may have. Resurces Find additinal infrmatin n advance care planning, including vides n varius tpics, at Advance Care Planning: Tube Feeding and Ttal Parenteral Nutritin (TPN) The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3941 Page 2 f 2

37 Advance Care Planning Hydratin (Fluids) At different times during yur cancer treatment, yu may nt be able t swallw well r take in enugh liquids t meet yur bdy s needs. Depending n yur situatin, gals f care and treatment wishes, yu and yur health care team will decide if yu need additinal fluids thrugh a tube, als knwn as artificial hydratin. Fluids delivered thrugh a tube can enter the bdy in several ways: Int the stmach r intestine Int a vein (intravenus r IV) Under the skin int fatty tissue The purpse f this dcument is t help yu decide, alng with yur health care team, if artificial hydratin is right fr yu. Hw des artificial hydratin wrk? When yur bdy receives fluids thrugh a tube, the fluids are absrbed int the bld stream, allwing yur bdy t take in the liquids it needs. Befre yu begin artificial hydratin, yur health care prvider will talk with yu abut the different methds f hydratin and which will be best fr yu. Stmach (NG tube r G-Tube) r Intestinal Tube (J-Tube) When a tube is ging t be used nly fr a shrt time, it is usually placed thrugh the nse int the stmach. This is called a nasgastric (NG) tube. If yu will be getting fluids fr a lnger time, ther types f tubes that may be used are inserted thrugh the skin int the stmach (G-tube) r the intestine (J-tube). Usually, this prcedure des nt require surgery. IV Tube When fluids are given by IV, the IV tube is cnnected t a bag f fluids which, in turn, flws frm the bag, thrugh the tube and int a vein. If the need fr fluids is lng-term, hwever, patients usually receive a central venus catheter (CVC). A CVC is a tube that is usually placed int a vein in the arm r under the cllarbne. A CVC is placed lng-term, but yu can have it remved later when it is n lnger needed. Tube Under the Skin Int Fatty Tissue ( Clysis ) Patients may als receive fluids thrugh a tube placed under the skin int the fatty tissue. This is called hypdermclysis, r clysis fr shrt. The fluid is absrbed frm the fatty tissue int the bldstream. Advance Care Planning: Hydratin (Fluids) The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3932 Page 1 f 3

38 Clysis cannt give the bdy as much fluid as when fluid is given by an IV tube. This methd wrks best fr thse needing a mdest amunt f fluids. It is simpler, with fewer cmplicatins. Clysis cannt be given by all prviders, but can be prvided by sme hspices t patients under their care. Fr tubes placed by any f these methds, patients may receive fluids as needed r n a cntinuus basis (24 hurs a day). What are the benefits f artificial hydratin? Patients receive fluids thrugh a tube t prevent r treat dehydratin. Patients wh are dehydrated frm nt getting enugh fluid in may feel weak, dizzy r thirsty. These symptms may als happen fr ther reasns. Depending n the cause, symptms may r may nt be helped by fluids. Regardless, there are ther treatments available t address these symptms. What are the pssible cmplicatins? Listed belw are sme f the cmplicatins that may ccur frm artificial hydratin. Hwever, if yu experience any f the fllwing, yur healthcare prvider will treat yu as needed. Stmach (NG Tube r G-Tube) r Intestinal Tube (J-Tube) Nse and thrat sreness (fr tubes placed thrugh the nse) Skin sreness Tube misplacement Tube falling ut Tube clgging Tube leaking Infectin at the tube site IV Tube Sreness at the IV site Infectin at the IV site Infectins f the bldstream Bld clts at the IV site T much fluid, which may cause swelling r breathing prblems Tube Under the Skin Int Fatty Tissue (Clysis) Uncmfrtable swelling at the tube site Infectin at the tube site Advance Care Planning: Hydratin (Fluids) The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3932 Page 2 f 3

39 When shuld smene nt receive artificial hydratin? When the risks utweigh the benefits, yu may decide nt t receive additinal fluids. Artificial hydratin des nt wrk as well in peple whse bdies cannt use the fluids prperly. This ften happens in the later stages f an illness, when the bdy begins t shut dwn. Cmfrt may be the main gal f care at this time. Peple ften wrry that their lved nes will becme thirsty and need water if it is nt given. Mst peple in this situatin, hwever, are nt thirsty. If they are thirsty, they nly need very small amunts f fluids t their quench thirst, tgether with gd muth care t keep the muth clean and feeling refreshed. Shuld I receive fluids thrugh a tube? Yur health care team will help yu chse what is best fr yur care. Getting fluids thrugh a tube may r may nt help yu. That is why it is always best t have an pen cnversatin with yur health care team and lves nes abut the benefits and risks f artificial hydratin. Learn the facts, and understand the prs and cns and hw they apply t yu. D nt hesitate t talk with yur dctr r nurse abut any questins r cncerns yu may have. Resurces Find additinal infrmatin n advance care planning, including vides n varius tpics, at Advance Care Planning: Hydratin (Fluids) The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3932 Page 3 f 3

40 Advance Care Planning D-Nt-Resuscitate (DNR) Orders Our gal is t help patients live lnger and better; hwever, many treatments d nt wrk as well as we wish. Sme f ur patients apprach the end f their life while under ur care. The purpse f this dcument is t help yu: Think abut yur wishes and preferences Understand yur ptins Make health care and treatment decisins We realize that discussing end-f-life issues can be difficult. We value and respect yur decisins. We als want t make certain that yu are well infrmed and have the pprtunity t discuss yur wishes, questins and cncerns with yur family and health care team. Terms t Knw Cardipulmnary Resuscitatin (CPR) Dctrs and nurses perfrm CPR when the heart stps wrking r when the heart and lungs stp wrking. They will d the fllwing: Push n the chest bne t pump n the heart in an effrt t restart the heart Apply a breathing bag and mask t frce air int the lungs D Nt Resuscitate (DNR) This dctr s rder tells the health care team nt t perfrm CPR. In the hspital, a DNR rder lasts until a physician cancels the rder r the patient is discharged. In rder fr a patient nt t receive CPR, an rder must be written by the dctr n each admissin. Fr patients wh elect t have an ut-f-hspital DNR rder, the rder is permanent unless the patient cancels the rder. Patients with an ut-f-hspital DNR rder still need an in-hspital DNR rder when admitted t the hspital if the ut-f-hspital DNR status is t remain in effect. Quality f Life This is a persn s verall well-being. A number f factrs may affect quality f life, such as: Treatments and their side effects Hw well symptms are cntrlled Time spent with lved nes at hme r in the hspital Ability t engage in activities Advance Care Planning: D Nt Resuscitate (DNR) Orders The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3581 Page 1 f 4

41 Scial and spiritual issues Each persn has his r her wn view f what is an acceptable quality f life based n his r her thughts, feelings, values and gals. Resuscitatin Status An individual s resuscitatin status tells us whether that persn will receive medical interventins attempting t restart the heart, r heart and lungs, if they stp wrking. Talk t yur health care team t see hw effective CPR is likely t be in yur situatin. Breathing Machines (Ventilatin) A tube is placed thrugh the patient s muth int the windpipe, and a machine breathes fr them. This machine is called a ventilatr. Making the decisin abut DNR eased my fear abut what will happen. MD Andersn patient Peple n ventilatrs are ften heavily sedated, as if they are in a deep sleep. Cmmnly Asked Questins Why d we have DNR rders? DNR rders exist s that the health care team can prvide care that will help the patient. The intent is t help the patient and nt hurt him r her while respecting the patient s values. DNR rders give health care prviders clear instructins n hw best t care fr the patient depending n hw likely CPR is t bring him r her back t life and als depending n his r her values and gals. What are the risks and benefits f CPR? The success f CPR can depend n the persn s verall health befre the heart r lungs stp wrking. CPR may wrk well t save the life f smene in a car accident r a victim f a gunsht wund. The chance f success is smaller fr a persn with advanced cancer r wh has sme ther disease that is n lnger respnding t treatment. It is imprtant t knw that when CPR is effective in restarting a persn s heart r breathing, smetimes the persn s cnditin wrsens. Fr example, the persn culd: Have permanent injuries, such as brain damage, due t lack f bld flw and xygen t the brain Have damage t ther rgans, such as the kidneys Be left n a ventilatr fr the rest f his r her life Be left in a cma Advance Care Planning: D Nt Resuscitate (DNR) Orders The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3581 Page 2 f 4

42 What is a Living Will? A Living Will is a legal dcument that lets health care prviders knw a persn s health care wishes, in the event that the persn is unable t make chices fr him r herself. It is a part f a set f dcuments referred t as advance directives. Living wills may address tpics such as: Artificial feeding Dialysis (a prcess t clean the bld when the kidneys are nt wrking) The use f ventilatrs fr breathing Where a persn wuld like t spend final days What is the difference between a DNR rder and a Living Will? A DNR rder is signed by a physician and nly addresses the use f CPR in the event that a persn s heart stps wrking, r the heart and lungs stp wrking, and the persn is in the mments f dying. A living will is an expressin f preferences in certain health cnditins, but is nt a physician s rder. Als, a DNR rder nly addresses resuscitatin status; it des nt address brader preferences abut ther aspects f care. N matter what a persn s resuscitatin status is, all effrts directed at cmfrt are always cntinued. What happens if my heart, r heart and lungs, stp wrking when I am nt in the hspital? If this happens as an utpatient, emergency persnnel will perfrm CPR unless an ut-f-hspital DNR rder is in effect. In the State f Texas, an ut-f-hspital DNR rder needs t be signed by the dctr and patient r his r her representative if the patient is nt able t participate in health care decisin making. The patient needs t have the signed DNR frm, DNR bracelet r DNR necklace with him r her. Can I request a DNR rder? Yes, cnversatins abut DNR status are encuraged. At first, my family didn t want t talk abut the chance f me passing away, which made everything difficult t discuss. But then I explained t them what is imprtant t me. MD Andersn patient If I becme unable t decide fr myself, wh can request a DNR rder fr me? A medical pwer f attrney is a dcument that allws a patient t identify a specific persn t speak n his r her behalf shuld he r she becme unable t d s. If a medical pwer f attrney is nt cmpleted r available, the legal next f kin (spuse, parent r adult child) will be cntacted fr a decisin. Advance Care Planning: D Nt Resuscitate (DNR) Orders The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3581 Page 3 f 4

43 What will happen if my lved nes disagree abut a DNR rder fr me? Yu have the ultimate decisin-making authrity. Hwever, when a lved ne has participated in a discussin with the patient abut DNR chices, he r she is better able t understand and is mre likely t supprt the decisin. What will happen if I have n lved nes t apprve a DNR rder fr me? The state prvides a legal hierarchy f individuals t participate in health care decisin-making. If n such individual is lcated, tw physicians may place a DNR rder if they believe that CPR wuld nt help. It is imprtant fr a patient t discuss wishes with a health care prvider in advance. Des agreeing t a DNR rder mean, D nt treat? Des agreeing t a DNR rder mean that I will n lnger receive chemtherapy? N. A DNR rder nly addresses the use f CPR. If a health care prvider feels that chemtherapy r anther frm f medical care may help, the patient may still receive that treatment. Yu will always receive care directed at making yu cmfrtable. Smetimes my patients are afraid t ask questins abut DNR and endf-life issues. T ease that prcess, I speak abut it penly and hnestly. MD Andersn dctr Can I change my mind after agreeing t a DNR rder? Cnversatins abut DNR status are encuraged t allw care that is mst helpful t the persn in his r her particular health care situatin. Resurces Find additinal infrmatin n advance care planning, including vides n varius tpics, at Advance Care Planning: D Nt Resuscitate (DNR) Orders The University f Texas MD Andersn Cancer Center 2014 Patient Educatin 3581 Page 4 f 4