Download - A Good Death - SXSW Future15 session
DESIGNING A GOOD DEATH
NAVIT UX DESIGN
WORK AT HUGEDEATH NARRATIVE
NANCY CRUZAN 1957-1990
“I was fantasising about my own death, I started thinking what my funeral would be like and what music would be played, I was at that level of insanity.”
Billy Corgan
INTRO TO DEATH
THE RESEARCH
CONVERSATIONS
PROTOTYPING MORTALITY
DEATH WORKERS
EMBALMING
SUSTAINABLE DEATH
POST-MORTEM DATA
EVALUATION
HEALTH CARE POWER OF ATTORNEY
NOTE: YOU SHOULD USE THIS DOCUMENT TO NAME A PERSON AS YOUR HEALTH CARE AGENT IF YOU ARE COMFORTABLE GIVING THAT PERSON BROAD AND SWEEPING POWERS TO MAKE HEALTH CARE DECISIONS FOR YOU. THERE IS NO LEGAL REQUIREMENT THAT ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY. EXPLANATION: You have the right to name someone to make health care decisions for you when you cannot make or communicate those decisions. This form may be used to create a health care power of attorney, and meets the requirements of North Carolina law. However, you are not required to use this form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare your own health care power of attorney, you should be very careful to make sure it is consistent with North Carolina law. This document gives the person you designate as your health care agent broad powers to make health care decisions for you when you cannot make the decision yourself or cannot communicate your decision to other people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and other health care decisions with your health care agent. Except to the extent that you express specific limitations or restrictions in this form, your health care agent may make any health care decision you could make yourself. This form does not impose a duty on your health care agent to exercise granted powers, but when a power is exercised, your health care agent will be obligated to use due care to act in your best interests and in accordance with this document. This Health Care Power of Attorney form is intended to be valid in any jurisdiction in which it is presented, but places outside North Carolina may impose requirements that this form does not meet. If you want to use this form, you must complete it, sign it, and have your signature witnessed by two qualified witnesses and proved by a notary public. Follow the instructions about which choices you can initial very carefully. Do not sign this form until two witnesses and a notary public are present to watch you sign it. You then should give a copy to your health care agent and to any alternates you name. You should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina Secretary of State: http://www.nclifelinks.org/ahcdr/ 1. Designation of Health Care Agent. I, _____________________, being of sound mind, hereby appoint the following person(s) to serve as my health care agent(s) to act for me and in my name (in any way I could act in person) to make health care decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order named. A. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone: B. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone: C. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone:
STATE OF NORTH CAROLINA HEALTH CARE POWER OF
ATTORNEY COUNTY OF __________________ NOTE: YOU SHOULD USE THIS DOCUMENT TO NAME A PERSON AS YOUR HEALTH CARE AGENT IF YOU ARE COMFORTABLE GIVING THAT PERSON BROAD AND SWEEPING POWERS TO MAKE HEALTH CARE DECISIONS FOR YOU. THERE IS NO LEGAL REQUIREMENT THAT ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY.
EXPLANATION: You have the right to name someone to make health care decisions for you when you cannot make or communicate those decisions. This form may be used to create a health care power of attorney, and meets the requirements of North Carolina law. However, you are not required to use this form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare your own health care power of attorney, you should be very careful to make sure it is consistent with North Carolina law. This document gives the person you designate as your health care agent broad powers to make health care decisions for you when you cannot make the decision yourself or cannot communicate your decision to other people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and other health care decisions with your health care agent. Except to the extent that you express specific limitations or restrictions in this form, your health care agent may make any health care decision you could make yourself. This form does not impose a duty on your health care agent to exercise granted powers, but when a power is exercised, your health care agent will be obligated to use due care to act in your best interests and in accordance with this document. This Health Care Power of Attorney form is intended to be valid in any jurisdiction in which it is presented, but places outside North Carolina may impose requirements that this form does not meet. If you want to use this form, you must complete it, sign it, and have your signature witnessed by two qualified witnesses and proved by a notary public. Follow the instructions about which choices you can initial very carefully. Do not sign this form until two witnesses and a notary public are present to watch you sign it. You then should give a copy to your health care agent and to any alternates you name. You should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina Secretary of State: http://www.nclifelinks.org/ahcdr/
1. Designation of Health Care Agent. I, _______________________________, being of sound mind, hereby appoint the following person(s) to serve as my health care agent(s) to act for me and in my name (in any way I could act in person) to make health care decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order named. A. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________ B. Name: _____________________________ Home Telephone: __________________________ Home Address: _____________________________ Work Telephone: __________________________ ___________________________________________ Cellular Telephone: __________________________ C. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________
Body Disposition Authorization Affidavit — Page 1 of 2
BODY DISPOSITION
AUTHORIZATION AFFIDAVIT
STATE OF TEXAS § KNOW ALL PERSONS BY THESE PRESENTS: COUNTY OF § I, ___________________________ (print name), based on the authority of the Texas Health and Safety Code, §711.002(g), upon my oath make the following declaration and directive concerning the disposition of my body after my death: I declare that it is my wish and I hereby authorize and direct that, upon my death, my remains be (initial one box): Cremated
Interred at a cemetery or on private property
Interred at a mausoleum
Donated to medical science; if this disposition is not possible because no medical or research facility will accept my body, I direct that my remains be (initial one box):
Cremated
Interred at a cemetery or on private property
Interred at a mausoleum
Other disposition as specified:
_________________________________________________________________________________
_________________________________________________________________________________
Other disposition as specified: ________________________________________________________________________________________
________________________________________________________________________________________
Signature of Declarant: ______________________________________ Date: _____________________________ Printed name of Declarant: ____________________________________
BEFORE ME, the undersigned notary public for the State of Texas, personally appeared
__________________________, the Declarant in this Body Disposition Authorization Affidavit, who upon
his/her oath made the foregoing declaration(s), including placing his/her initials in the boxes he/she choose on this
the _______________ day of _________________________, 20_____.
____________________________________________________ Notary Public for the State of Texas My commission expires: ________________________________
Funeral Consumers Alliance of North Texas
2875 E Parker Rd, Plano TX 75074, 972-509-5686, [email protected]
MAY BE REPRODUCED FOR PRIVATE USE ONLY. NO COMMERCIAL USE IS APPROVED.
HEALTH CARE POWER OF ATTORNEY
NOTE: YOU SHOULD USE THIS DOCUMENT TO NAME A PERSON AS YOUR HEALTH CARE AGENT IF YOU ARE COMFORTABLE GIVING THAT PERSON BROAD AND SWEEPING POWERS TO MAKE HEALTH CARE DECISIONS FOR YOU. THERE IS NO LEGAL REQUIREMENT THAT ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY. EXPLANATION: You have the right to name someone to make health care decisions for you when you cannot make or communicate those decisions. This form may be used to create a health care power of attorney, and meets the requirements of North Carolina law. However, you are not required to use this form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare your own health care power of attorney, you should be very careful to make sure it is consistent with North Carolina law. This document gives the person you designate as your health care agent broad powers to make health care decisions for you when you cannot make the decision yourself or cannot communicate your decision to other people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and other health care decisions with your health care agent. Except to the extent that you express specific limitations or restrictions in this form, your health care agent may make any health care decision you could make yourself. This form does not impose a duty on your health care agent to exercise granted powers, but when a power is exercised, your health care agent will be obligated to use due care to act in your best interests and in accordance with this document. This Health Care Power of Attorney form is intended to be valid in any jurisdiction in which it is presented, but places outside North Carolina may impose requirements that this form does not meet. If you want to use this form, you must complete it, sign it, and have your signature witnessed by two qualified witnesses and proved by a notary public. Follow the instructions about which choices you can initial very carefully. Do not sign this form until two witnesses and a notary public are present to watch you sign it. You then should give a copy to your health care agent and to any alternates you name. You should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina Secretary of State: http://www.nclifelinks.org/ahcdr/ 1. Designation of Health Care Agent. I, _____________________, being of sound mind, hereby appoint the following person(s) to serve as my health care agent(s) to act for me and in my name (in any way I could act in person) to make health care decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order named. A. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone: B. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone: C. Name: Home Telephone: Home Address: Work Telephone: Cellular Telephone:
STATE OF NORTH CAROLINA HEALTH CARE POWER OF
ATTORNEY COUNTY OF __________________ NOTE: YOU SHOULD USE THIS DOCUMENT TO NAME A PERSON AS YOUR HEALTH CARE AGENT IF YOU ARE COMFORTABLE GIVING THAT PERSON BROAD AND SWEEPING POWERS TO MAKE HEALTH CARE DECISIONS FOR YOU. THERE IS NO LEGAL REQUIREMENT THAT ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY.
EXPLANATION: You have the right to name someone to make health care decisions for you when you cannot make or communicate those decisions. This form may be used to create a health care power of attorney, and meets the requirements of North Carolina law. However, you are not required to use this form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare your own health care power of attorney, you should be very careful to make sure it is consistent with North Carolina law. This document gives the person you designate as your health care agent broad powers to make health care decisions for you when you cannot make the decision yourself or cannot communicate your decision to other people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and other health care decisions with your health care agent. Except to the extent that you express specific limitations or restrictions in this form, your health care agent may make any health care decision you could make yourself. This form does not impose a duty on your health care agent to exercise granted powers, but when a power is exercised, your health care agent will be obligated to use due care to act in your best interests and in accordance with this document. This Health Care Power of Attorney form is intended to be valid in any jurisdiction in which it is presented, but places outside North Carolina may impose requirements that this form does not meet. If you want to use this form, you must complete it, sign it, and have your signature witnessed by two qualified witnesses and proved by a notary public. Follow the instructions about which choices you can initial very carefully. Do not sign this form until two witnesses and a notary public are present to watch you sign it. You then should give a copy to your health care agent and to any alternates you name. You should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina Secretary of State: http://www.nclifelinks.org/ahcdr/
1. Designation of Health Care Agent. I, _______________________________, being of sound mind, hereby appoint the following person(s) to serve as my health care agent(s) to act for me and in my name (in any way I could act in person) to make health care decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order named. A. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________ B. Name: _____________________________ Home Telephone: __________________________ Home Address: _____________________________ Work Telephone: __________________________ ___________________________________________ Cellular Telephone: __________________________ C. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________
Body Disposition Authorization Affidavit — Page 1 of 2
BODY DISPOSITION
AUTHORIZATION AFFIDAVIT
STATE OF TEXAS § KNOW ALL PERSONS BY THESE PRESENTS: COUNTY OF § I, ___________________________ (print name), based on the authority of the Texas Health and Safety Code, §711.002(g), upon my oath make the following declaration and directive concerning the disposition of my body after my death: I declare that it is my wish and I hereby authorize and direct that, upon my death, my remains be (initial one box): Cremated
Interred at a cemetery or on private property
Interred at a mausoleum
Donated to medical science; if this disposition is not possible because no medical or research facility will accept my body, I direct that my remains be (initial one box):
Cremated
Interred at a cemetery or on private property
Interred at a mausoleum
Other disposition as specified:
_________________________________________________________________________________
_________________________________________________________________________________
Other disposition as specified: ________________________________________________________________________________________
________________________________________________________________________________________
Signature of Declarant: ______________________________________ Date: _____________________________ Printed name of Declarant: ____________________________________
BEFORE ME, the undersigned notary public for the State of Texas, personally appeared
__________________________, the Declarant in this Body Disposition Authorization Affidavit, who upon
his/her oath made the foregoing declaration(s), including placing his/her initials in the boxes he/she choose on this
the _______________ day of _________________________, 20_____.
____________________________________________________ Notary Public for the State of Texas My commission expires: ________________________________
Funeral Consumers Alliance of North Texas
2875 E Parker Rd, Plano TX 75074, 972-509-5686, [email protected]
MAY BE REPRODUCED FOR PRIVATE USE ONLY. NO COMMERCIAL USE IS APPROVED.
(6) Artificial nutrition and hydration: Arti!cial nutrition and hydration must be provided, withheld or withdrawn in accordance with the choice I have made in paragraph (5) unless I have checked and initialed one of the boxes below: Check Initial
___ I want arti!cial nutrition regardless of my condition.
___ I do NOT want arti!cial nutrition regardl ess of my condition.
___ I want arti!cial hydration regar dless of my condition.
___ I do NOT want arti!cial hydration regardless of my condition.
THE PROBLEM
1. THE DENIAL OF DEATH“...The idea of death, the fear of it, hunts the humans animal like nothing else; it is a
mainspring of human activity. Activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.”
Ernest Becker
Six Out Of 10 People Say They Feel Intimidated Talking To Their Families About End-of-life Decisions.
Source: California Healthcare Foundation survey
2. THE CURRENT FORMS
“Dying is more than a set of problems to be solved. The nature of dying is not medical, it is experiential.”
Ira Byock
I, HEREBY APPOINT AS MY HEALTH CARE AGENT TO MAKE ANY AND ALL HEALTH CARE DECISIONS FOR ME, EXCEPT TO THE EXTENT THAT I STATE OTHERWISE. THE PROXY SHALL TAKE EFFECT ONLY WHEN AND IF I BECOME UNABLE TO MAKE MY OWN HEALTH CARE DECISIONS.
THE CHALLENGE
WHY DOES IT MATTER?
Source: Mount Sinai School of Medicine study
Medicare recipients spend during the five years before their death averaged about:
$39,000 Individuals
$66,000 Long-term illnesses
$51,000Couples
HIGH COST OF END OF LIFE CARE
THE SOLUTIONS
CAN DEATH BE GOOD?
1. COMPLEXITY VS. SIMPLICITY
2. VISUALIZED INFORMATION
3. CONVERSATIONAL TONE
Lack of design thinking
1. COMPLEXITY VS. SIMPLICITY
A PDF TOOLKIT
DID YOU KNOW?
� � More than 68,000 patients are on the national organ transplant waiting list. Each day, 13 of
them will die because the organs they need have not been donated. Every 16 minutes, a new
name will be added to that waiting list.
� � Organs you can donate: Heart, Kidneys, Pancreas, Lungs, Liver, Intestines.
� � Tissue you can donate: Cornea, Skin, Bone Marrow, Heart Valves, Connective Tissue.
� � To be transplanted, organs must receive blood until they are removed from the body of the
donor. Therefore, it may be necessary to place the donor on a breathing machine temporarily or
provide other organ-sustaining treatment.
� � If you are older or seriously ill, you may or may not have organs or tissue suitable for
transplant. Doctors evaluate the options at or near the time of death.
� � The body of an organ donor can still be shown and buried after death.
Tool #5
After Death Decisions
to Think About Now
Name & Date_______________________________________
After the death of a loved one, family and friends are often left with some tough decisions. You
can help ease the pain and anxiety by making your wishes—about burial, autopsy, and organ
donations—clear in advance.
1. Do you want to donate viable ORGANS for transplant? (Circle one)
Yes
Not sure
No If Yes, check one:____ I will donate any organs.
____ Just the following: _______________________________
2. Do you want to donate viable TISSUES for transplant? (Circle one)
Yes
Not sure
No If Yes, check one:____ I will donate any organs.
____ Just the following: ____________________________
Attention! If you circled Yes for either of the above, be sure to write this into your health care
Advance Directive. You may also fill out an organ donor card or register as an organ donor when
you renew your driver’s license. But be sure to tell your proxy and loved ones. Make sure they will
support your wishes. Even with an organ donor card, hospitals will usually ask your proxy or
family to sign a consent form.
ORGAN AND TISSUE DONATION
A GOOD DEATH TOOLKIT
TITLE
INFO
STATISTICS
SOURCE
OPTION 1 OPTION2
tHIS IS WHERE THE QUESTION GOES
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Lack of visualization to display complex information
2. VISUALIZED INFORMATION
USA CREMATION TRENDS 2011
Source: The Nebraska Coalition for Compassionate Care and the Nebraska Hospice and Palliative Care Association, (NHPCA) 2010 end-of-life survey .
Cremations 1035,074
Deaths 2,464,392
% of death cremated 42.0%
Source: AHRQ Healthcare Costs and Utilization Project (HCUP) Nationwide Inpatient Sample (NIS) 2009 data.
245,000Home HealthCare
30,700 Hospital
8,100,000babies
NUMBER OF PATIENTS IN THE U.S WHO RECEIVE TUBE FEEDING
ATTITUDE TOWARDS ADVANCE DIRECTIVES
Source: The Nebraska Coalition for Compassionate Care and the Nebraska Hospice and Palliative Care Association, (NHPCA) 2010 end-of-life survey .
93%
Want Have
20%
The current content lacks a humanizing aspect. It feels cold, clinical, and not conversational.
3. CONVERSATIONAL TONE
WHAT IFyou are in severe discomfort most of the time
(such as nausea, diarrhea).
Want Treatment
Do notWant Treatment 2 3 4 51
LIVING WILLWhich of the following do you fear the most
near the end of your life?
OR OR ORBeing in pain To be aloneLosing the ability to think
Being a financial burden on loved ones
CREATING CONVERSATIONS WHERE CONVERSATIONS
ARE TABOO.
NAVIT [email protected]
@navit_keren