voicing my choices
TRANSCRIPT
A Planning Guide forAdolescents & Young Adults
Voicing My CHOICES.
g Gents & Young Adults
2
I, _______________________________, askthat my family, my doctors, my friends, and my health care providersfollow my wishes as communicated in this booklet. This booklet is onlyto be used in the case I can no longer communicate my wishes myself.
My SIGNATURE: __________________________________________My Date of Birth: ______________________________________________
Address: _____________________________________________________
Phone: __________________________ Today’s Date:________________
Witness Statement:I, the witness, declare that the person who signed oracknowledged this booklet is known to me, that he/she signed thisbooklet based on his/her own thoughts, wishes and desires, and thathe/she is of sound mind and no duress, or undue influence.
Signature of Witness # 1 Signature of Witness # 2
Printed Name Printed Name
Address Address
Notarization (If required by the state you live in)
Voicing My CHOICES.
SSAMSAMPLE
PLEEL___________________
__________________________
__________________________
_____ Today’s Date:________
ents, declare that the person whois booklet is known to me, that/her own thoughts, wis
is of sound mind and no duress, o
AMture of Witness # 1
SAName
SANotari
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When living with a serious illness thereare often things in life that are out of yourcontrol. Voicing My CHOICES gives you away to express something very important ‒your thoughts about how you want to becomforted, supported, treated, andremembered.
This booklet was developed based onfeedback from young people living with aserious illness. There are no right or wrongways to answer the items in Voicing MyCHOICES. You can complete as much oras little of this booklet as you would like.There are boxes to check if you agree withcertain items, and there is also space toexpress your thoughts in your own words.
At the end of the booklet, thereare some blank pages. On thesepages, feel free to share any
additional thoughts and wishes notcovered in this booklet. You can alsouse these pages to write a letter(s) tofriends or family members.
Please keep in mind that the topicscovered in this book can sometimesbe difficult or confusing to think about.Your healthcare providers are available tohelp explain terms and/or procedures thatyou may not understand or may havequestions about.
Additionally, there is a glossary of termsthat may provide clarification for you onpage 15. Any term underlined in bluethroughout this booklet is defined inthe glossary.
ContentsMy Signature, page 2My Comfort, page 4My Support, page 5
My Medical Care Decisions, page 6My Medical Treatment, page 7
My Family/Friends To Know, page 8My Spiritual Thoughts, page 9My Rememberance, page 10
My Belongings, page 11My Voice (Letters), page 12
Glossary, page 15
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I want treatment to help me, if I:☐ Look sad☐ Am irritable/frustrated☐ Look nauseated☐ Look confused☐ Look like I am having a hard time breathing☐ Am cold or hot
If I am in pain, I would like:☐ My doctor to give me enough medicineto relieve my pain, even if that meansI will not be awake enough to interactwith my friends or family.
Or,
☐ To receive medications to reduce mypain but I do not want to be too sleepyor drowsy. I want to be awake enoughto interact with my friends and family.
Other things that are important to me are:☐ If I am not able to get to the bathroom intime, please change my clothes and sheetsright away so that I am always clean.
☐ If friends are coming to visit, please dressme, comb my hair and do whatever else isneeded to help make me look like myself.
☐ Massages whenever possible as long asthey do not cause me discomfort.
☐ To be bathed.
☐ To have music playing in my room.
☐ To have my favorite foods available.
☐ To be read to.
Sometimes people can feel very uncomfortable when they are ill.For example, they might have pain, become sleepy or not feel like themselves.It is important for others to know how you want to be treated and what willmake you feel more comfortable, especially if you become very ill and cannotexpress your wishes on your own.
My favorite music/food is:
The kinds of books, stories, or readings I like, are:
Other thoughts I have about treating my pain, or helping to make me comfortable, are:
I would also like:
How I Want To Be Comforted
If I look like I am uncomfortable in the following ways: (Please check all that apply)
These are a Few of the Comforts Important to Me
5
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My Choice
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How I Would Like To Be Supported
Whether you are in the hospital or at home, when you are feeling badly or are very ill, theremay be times when you want people around you, or you may prefer to not have visitors present.
(Please check all that apply)☐ I do not want to be alone.☐ I would like my family to be with me whenever possible.☐ I would like my friends to be with me whenever possible.☐ I would like visitors whenever possible. ☐ Please always ask me before visiting. ☐ If I am sleeping when someone comes to visit, I would like to be woken up.
The people I want with me are:
I especially want these people with me when:
The things that I would find comforting to have in my room are:
If people are very upset or crying, I would like them to:
☐ Share their feelings with me ☐ Visit me at another time ☐ Other:
When the end of my life is near, I would like:
☐ To die at home ☐ To die at the hospital ☐ Other:
My Choice
My Voice
So I Don’t Feel Alone
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Who I Want to Make MyMedical Care Decisions
If I Cannot Make Them On My OwnThere might be a time when you cannot make medical decisions for yourself. If this happens, it might be necessary for someone else to speak with the doctors and make decisions about your medical care. This person, called a healthcare agent,would make sure that your thoughts or wishes are respected.
Things To Consider When Choosing a Healthcare Agent: It can be helpful to choose someone who knows you well,cares about you, lives nearby, and can make difficult decisions.If you are under the age of 18, your parents/ guardians will have legal rights to make decisions, so the person yourecommend can be your parents/guardian or someoneyou would like your parents/guardians to work with.
Remember: � Your healthcare agent must be at least 18 years old.� Your healthcare agent cannot be your doctor or any of your other health care providers, nor can it be an employee of any your health care providers.
� To talk to the people you are choosing to make sure that they agree to follow your wishes.
The person(s) I want to make healthcare decisions for me is/are:
Name Name
Address Address
Phone Phone
If this person(s) I chose above are somehow unavailable, others who can make healthcare decisions for me are:
Name Name
Address Address
Phone Phone
To allow or refuse:☐ Tests☐ Medicines☐ Surgeries☐ Other care that can helpkeep me alive
☐ Medication(s) or procedure(s)to help with pain
☐ Stop previously started treatment☐ Donate usable organs and/ortissue of mine if it can help others
Act on my behalf to:☐ Hire and/or fire any healthcare worker I may need to takecare of me
☐ See and approve release ofmy medical records
☐ Apply for Medicaid, Medicare,or insurance benefits for me
☐ See my personal files, like bankrecords, to access necessaryinformation
☐ Perform any necessary legal action(s)
Arrange for:☐ Hospital or hospice admission☐ Admission to a facility in anotherstate to get the care I need or tocarry out my wishes
☐ Hospital discharge to take mehome
I give my health care agent permission to make these choices for me about my medical care or services. (Please check all that apply)
☐ My healthcare agent is alsoallowed to make decisions basedon conversation(s) we have hadabout my wishes and whathe/she believes my wishes to be
Other things I wish my health care agent to do are:
6
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If my doctor and another health care provider decide thatI have permanent and severe brain damage and I am notexpected to get better, and life support treatment wouldonly delay the moment of my death:
☐ I want to have a natural death
☐ I want to try life support treatment if my doctorbelieves it could help my symptoms
☐ I want to try life support treatment no matter what
Describe here if you want to have certain forms of life-support treatment, but not others, or if you wish tostate other conditions in which you would want, or not want, life-support treatment:
Other decisions I would like respected:
If my doctor and another health care provider bothdecide that I am close to death and likely to die within ashort period of time, and life support treatment wouldonly delay the moment of my death:
☐ I want to have a natural death
☐ I want to try life support treatment if my doctorbelieves it could help my symptoms
☐ I want to try life support treatment no matter what
when you are very ill and not able to speak for yourself, it will be importantfor your health care agent to know whether you would choose to try life-support treatment.
Life-support treatment means any medical procedure, device or medication used to try tokeep you alive. It can include: medical devices put in you to help you breathe(tracheotomy/mechanical ventilation); an artificial pacemaker to help maintain your heart-beat; food and water supplied by medical device (tube feeding); cardiopulmonaryresuscitation (CPR); major surgery; blood transfusions; dialysis; antibiotics; blood pressuremedications and anything else meant to keep you alive.
In place of life-support treatment, you may make the decision to allow a natural death, inwhich life-support treatments that prolong the dying process are not used, and everythingpossible is done to provide comfort and support.
In Case of An EmergencyIf you have an event in which your heart stops beating oryou stop breathing, you have the option to allow a naturaldeath by indicating you would like a Do Not Resuscitate(DNR) Order to be written on your behalf. If you would liketo try CPR, or advanced cardiac life support, it is important
that your health care agent and your medical team know.A DNR Order does not effect any treatment you wouldotherwise be getting. Check with your doctor to talkmore about the DNR Order.
The types of LifeSupport Treatment
I Want, or Do Not WantIf a time comes
7
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☐ Get along ☐ Take care of themselves ☐ Take care of one another☐ Respect my wishes, decisionsand choices even if they don’tagree with them
☐ Get counseling or find asupport group for themselvesand/or my siblings if they are having a hard time
I want my family to know that I am thankful for their love and support. I am especially thankful for:
I want my friends to know that I am thankful for their love and support. I am especially thankful for:
If I have hurt or upset any of my friends, family or others, I wish to be forgiven for:
When I have been hurt or upset by my family, friends, or others, they should know I forgive them for:
These are the things that are important to know about me:
The things that give me strength are:
The things that give me joy are:
It is important to me that my family/friends:My Choice
My Voice
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What I Would Like My Family and Friends
to Know About Me
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My SpiritualThoughts and Wishes
Not everyone has a religion or spiritual beliefswith which they feel connected. Others find great comfort in a faith or a belief system. On this page, you can write down your own thoughts on religion and spirituality, discuss your wishes and indicate what brings you the greatest comfort, in case you are not able to express these wishes for yourself.
☐ I would not like to have spiritual/religious activities incorporated into my care.☐ I would like to have spiritual/religious activities incorporated into my care. (Please check all that apply)
☐ I would like people to come pray with me.
☐ I would like members of my religious/ spiritualcommunity to be told about my illness and Iwould like them to pray for me.
☐ I would like members of my religious/spiritualcommunity to visit me.
☐ I would like a hospital-based religious leader such as a chaplain, rabbi, priest or pastor to visit me while I am sick.
☐ Every day
☐ Once a week
☐ Just when I ask
MMy Choice
9
My VoiceThe words, music, and/or activities I find comfort from are:
People from my religious community that I would like to come visit me are:
Based on my personal beliefs, I would like people to talk about death or the afterlife as:
The spiritual objects (such as prayer beads, holy books, or figurines) that I would like to have with me are:
Other spiritual thoughts or wishes that I would like to share with my family and/or friends: SAMPLE
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How I Wish To BeRemembered
I would like: ☐ To be buried ☐ An open casket☐ To be cremated ☐ A closed casket
☐ To donate my body to science ☐ To be an organ donor
☐ A limited autopsy☐ A standard autopsy☐ A research protocol autopsy☐ I would like my healthcare agent to make the autopsy decision
The clothes that I would like to be wearing (for service/cremation/burial) are:
The items that I would like to be with me are:
The music/food I want at my service are:
The people I would like to be present are:
I would like these readings at my service:
I would like these other arrangements at my service:
If my family or friends want to make contributions or donations I would like them to go to:
If it is more comfortable, you maychoose to let others decide about afuneral, a memorial service, andcaring for your body after death.Or you can use these pages to voiceyour preferences.
My Remembrance
☐ The type of service(s) I would like are:
☐ Funeral☐ Memorial service☐ Celebration of my life
☐ I prefer not to be a part of planning my service.☐ I prefer to plan my service. (Please check all that apply)
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Clothes: Pets:
Games: Books:
Art: Music:
Photographs: Phone:
Computer: Other electronics:
Furniture: Money/savings:
How I would like to be remembered on my birthday:
How I would like to be remembered on other important days:
When people ask about me, please say the following:
Special Days
People in your life will always love you and think about you. There may bespecial ways that you want to distribute your belongings and be remembered,especially on certain days such as your birthday, holidays or any other day that isimportant to you. This is a page to detail any wishes that you have for how youwould like to be remembered for the years after you are gone.
As with the other pages, take your time filling this out. Your family andfriends will appreciate knowing what you desire and how you would like to beremembered so that they can fulfill your wishes and know that by doing so, theyhave your special approval.
Other belongings:
The person I would feel most comfortable going through my belongings is:
This is How I Would Like To Share My Belongings:
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Artificial PacemakerA small battery-operated mechanicaldevice, which uses electrical impulsesto keep the heart beating regularly.They can be internal (surgicallyimplanted) or external (attached withwires to the skin). Pacemakers areusually only for temporary use.
Autopsy A standard autopsy is a medicalprocedure that consists of a thoroughexamination of your body to determinethe specific cause of death or toevaluate any disease or injury. Thereare 3 types of autopsies: 1) a limitedautopsy (a specific part of the body orbody system); 2) a full autopsy (studiesmost organs); and 3) a ResearchProtocol Autopsy (conducted forresearch purposes).
Blood TransfusionThe process of transferring blood or anyof its components into the bloodstreamof a person who has lost blood becauseof illness, an accident or surgery.
Body/Tissue DonationYou can choose to donate either yourwhole body, or some of your tissue formedical research and education afterdeath.
Brain DamageAn injury to the brain caused by traumato the head, infection, hemorrhage(bleeding), inadequate oxygen, orother complications, which results insignificant loss in brain functioningor consciousness.
Burial The act of placing a body into its finalresting place. An urn or specialcontainer can be used to store remainsfrom cremation.
Cardiopulmonary Resuscitation (CPR)An emergency procedure performed ona person who has no pulse and hasstopped breathing. CPR consists ofexternal cardiac massage and artificialrespiration (breathing) in an attempt torestore circulation of the blood andprevent death or brain damage.
Celebration of My LifeA gathering of your family/friends thatis planned to honor and celebrate yourlife. Some choose to have a gatheringyearly or just once after their death.
Closed Casket When the casket is closed at a funeralso that those present do not viewthe body.
ComaA state of unconsciousness, lastingmore than 6 hours, in which a personcannot be awakened, fails to respond toexternal stimuli, including pain andlight, lacks a normal sleep-wake cycle,and does not initiate voluntary actions.
CremationThe process of reducing the body byintense heat. Cremated remains aretypically placed in a container (urn) andcan be placed or buried at memorialsites or kept by relatives/friends. If youchoose to be cremated, it is still possibleto have a viewing of your body (opencasket) before the cremation process.
DialysisA medical treatment in which anartificial filtering system removeswaste from the blood, performingthe functions of the kidneys if theyare not working.
Feeding TubesA medical device used to providenutrition to patients who cannot obtainnutrition on their own.
FuneralA ceremony used to mark a person’sdeath. A person’s body is typically at thefuneral.
Healthcare AgentThe person chosen, legally named, ordesignated under state law to makehealthcare decisions on behalf of aperson who is no longer able to makehis or her own decisions.
Healthcare ProvidersA person or organization that provideshealthcare in any way, including:doctors, nurses, administrators, andother staff who are affiliated with yourcare or your care facility.
HospiceAn organization or facility that providescare for the terminally ill focused onpalliation (comfort) when curativetreatment is no longer an option.Hospice care involves medical care, painmanagement, and emotional/spiritualsupport. It can be provided inpatient oroutpatient and focuses on maintainingquality of life and symptom control.
InsuranceA program used to assist with costsof healthcare.
Insurance BenefitsPayments or compensation providedto assist with costs of healthcare.
Life-Support Treatment Any treatments used to maintain thevital functions of the body in order tosustain the life of someone who iscritically ill or injured.
Mechanical VentilationThe medical procedure used to aid orreplace breathing when someone isunable to breathe on his or her own.A machine called a ventilator forcesair into the lungs via a tube that isinserted in the nose or mouth anddown the windpipe.
Medicaid A federal system of health insurancefor those requiring financial assistance.
MedicareA federal system of health insurance forpeople over age 65, or qualified youngpeople with disabilities.
Natural DeathWhen life-support treatments are notused and everything possible is done toprovide comfort and support.
Memorial ServiceA service or ceremony performed tohonor a deceased person. The body orcremated remains are typically notpresent. More than one memorialservice can be held.
Open Casket When the casket is left open during afuneral in order to allow for a viewing.A mortician at the funeral home willprepare and dress the body for viewing.
Organ DonationThe removal of the tissues (organs)of the body from a person who hasrecently died to a living recipient inneed of a transplant.
TracheostomyA surgical operation that creates anopening into the trachea (windpipe)with a tube inserted to provide apassage for air in order to helpsomeone breathe.
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Department of Health & Human ServicesNational Institutes of HealthNational Institute of Mental HealthNational Cancer Institute
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