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A Good Death - SXSW Future15 session

Date post: 11-Aug-2014
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The emotionally complex experience of End of Life (EoL) planning can be confusing and legal paperwork like DNR forms and living wills carry a morbid stigma, leaving many of us unwilling to proactively seek out information to complete the process. Preparing for the inevitable shouldn’t have to be so daunting, so what if there was an easy, digital solution to make the planning experience more comfortable, transparent, private, and informative? This presentation addresses three major problems that exist with current options for EoL planning and will focus on the solutions provided by the project A Good Death, a unique interactive digital toolkit designed to help you easily and comfortably explore and plan for your own EoL experience.
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DESIGNING A GOOD DEATH
Transcript
Page 1: A  Good Death - SXSW Future15 session

DESIGNING A GOOD DEATH

Page 2: A  Good Death - SXSW Future15 session

NAVIT UX DESIGN

WORK AT HUGEDEATH NARRATIVE

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NANCY CRUZAN 1957-1990

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INTRO TO DEATH

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THE RESEARCH

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CONVERSATIONS

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PROTOTYPING MORTALITY

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DEATH WORKERS

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EMBALMING

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SUSTAINABLE DEATH

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POST-MORTEM DATA

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EVALUATION

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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.

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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.

Page 18: A  Good Death - SXSW Future15 session

THE PROBLEM

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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

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Six Out Of 10 People Say They Feel Intimidated Talking To Their Families About End-of-life Decisions.

Source: California Healthcare Foundation survey

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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

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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.

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THE CHALLENGE

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WHY DOES IT MATTER?

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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

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THE SOLUTIONS

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CAN DEATH BE GOOD?

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1. COMPLEXITY VS. SIMPLICITY

2. VISUALIZED INFORMATION

3. CONVERSATIONAL TONE

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Lack of design thinking

1. COMPLEXITY VS. SIMPLICITY

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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

Page 32: A  Good Death - SXSW Future15 session

A GOOD DEATH TOOLKIT

TITLE

INFO

STATISTICS

SOURCE

OPTION 1 OPTION2

tHIS IS WHERE THE QUESTION GOES

ë¼È�wW�>���Íȼ�È����>�`��×`¼>È����>¼i��i`�W>��ȼi>È�i�È¿�È�>È�>���Õ�>�§i¼¿���È��¼iWi�Ôi��Íȼ�È����©v��`ª�>�`��×`¼>È����©yÍ�`¿ª�Õ�i��È�i×�>¼i�������{i¼�>M�i�È��È>�i�È�i��M×���ÍÈ�¬

�Èȧ]ÅÅÕÕÕ¬W>¼��{��v�¬�¼{

245,000���¿§�È>�

Page 33: A  Good Death - SXSW Future15 session

Lack of visualization to display complex information

2. VISUALIZED INFORMATION

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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%

Page 35: A  Good Death - SXSW Future15 session

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

Page 36: A  Good Death - SXSW Future15 session

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%

Page 37: A  Good Death - SXSW Future15 session

The current content lacks a humanizing aspect. It feels cold, clinical, and not conversational.

3. CONVERSATIONAL TONE

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WHAT IFyou are in severe discomfort most of the time

(such as nausea, diarrhea).

Want Treatment

Do notWant Treatment 2 3 4 51

Page 39: A  Good Death - SXSW Future15 session

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

Page 40: A  Good Death - SXSW Future15 session

CREATING CONVERSATIONS WHERE CONVERSATIONS

ARE TABOO.

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NAVIT [email protected]

@navit_keren


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