DESIGNING A GOOD DEATH

NAVIT UX DESIGN WORK AT HUGE DEATH 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. STATE OF NORTH CAROLINA HEALTH CARE POWER OF ATTORNEY EXPLANATION: You have the right to name someone to make health care decisions for you when you 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 STATE OF TEXAS ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY. COUNTY OF BODY DISPOSITION cannot make or communicate those decisions. This form may be used to create a health care power of AUTHORIZATION attorney, and meets the requirements of North Carolina law. However, you are not required to use this AFFIDAVIT 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. KNOW ALL PERSONS BY THESE PRESENTS: EXPLANATION: You have the right to name someone to make health care decisions for you when you This document gives the person you designate as your health care agent broad powers to make health cannot make or communicate those decisions. This form may be used to create a health care power of care decisions for you when you cannot make the decision yourself or cannot communicate your decision Texas Health and Safety wishes attorney, and meets the requirements of North Carolina law. However, you are not required to use this I, ___________________________ (print name), based on the authority of the You should discuss your Code, concerning life-prolonging measures, mental health to other people. 711.002(g), upon my oath make the following declaration and directiveand other health care decisions with your health care agent. Except to the extent that you form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare treatment, concerning the disposition of my body your own health care power of attorney, you should be very careful to make sure it is consistent with North after my death: I declare that it is my wish and I hereby authorize and specific limitations or restrictions in thisbe express direct that, upon my death, my remains form, your health care agent may make any health care Carolina law. (initial one box): decision you could make yourself. This document gives the person you designate as your health care agent broad powers to make health care This form does not impose a duty on your health care agent to exercise granted powers, but when a decisions for you when you cannot make the decision yourself or cannot communicate your decision to other Cremated power is exercised, your health care agent will be obligated to use due care to act in your best interests people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and Interred at a cemetery or on private property and in accordance with this document. other health care decisions with your health care agent. Except to the extent that you express specific Interred at a mausoleum limitations or restrictions in this form, your health care agent may make any health care decision you could Donated to medical science; if this disposition is not possible because no medical or research facilityis intended to be valid in any jurisdiction in which it is presented, make yourself. This Health Care Power of Attorney form will 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. accept my body, I direct that my remains be (initial one box): but places outside North Carolina may impose requirements that this form does not meet. Cremated If you want to use this form, you must complete it, sign it, and have your signature witnessed by two Interred at a cemetery or on private property qualified witnesses and proved by a notary public. Follow the instructions about which choices you can Interred at a mausoleum 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 Other disposition as specified: should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina _________________________________________________________________________________ Secretary of State: http://www.nclifelinks.org/ahcdr/ 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 Other disposition as specified: you sign it. You then should give a copy to your health care agent and to any alternates you name. You 1. Designation of Health Care Agent. should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina ________________________________________________________________________________________ Secretary of State: http://www.nclifelinks.org/ahcdr/ 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, Signature of Declarant: ______________________________________ Date: _____________________________ in the order named. 1. Designation of Health Care Agent. I, _______________________________, being of sound mind, hereby appoint the following person(s) to serve as A. Name: Printed name of Declarant: ____________________________________ 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 Home Address: decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order BEFORE ME, the undersigned notary public for the State of Texas, personally appeared named. A. Name: _____________________________ Home Address: _____________________________ ___________________________________________ B. Name: Home Telephone: _________________________ __________________________, the Declarant in this Body Disposition Authorization Affidavit, who upon Home Address: Work Telephone: _________________________ his/her oath made the foregoing declaration(s), including placing his/her initials in the boxes he/she choose on this Cellular Telephone: _________________________ the _______________ day of _________________________, 20_____. B. Name: _____________________________ Home Telephone: __________________________ Home Address: _____________________________ Work Telephone: __________________________ ___________________________________________ Cellular Telephone: __________________________ C. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________ C. Name: Home Address: ____________________________________________________ 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, info@fcant.org MAY BE REPRODUCED FOR PRIVATE USE ONLY. NO COMMERCIAL USE IS APPROVED. Body Disposition Authorization Affidavit Page 1 of 2 Home Telephone: Work Telephone: Cellular Telephone: Home Telephone: Work Telephone: Cellular Telephone: Home Telephone: Work Telephone: Cellular Telephone:

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. STATE OF NORTH CAROLINA HEALTH CARE POWER OF ATTORNEY (6) Artificial nutrition and hydration: Artificial 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: EXPLANATION: You have the right to name someone to make health care decisions for you when you 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 STATE OF TEXAS ANYONE EXECUTE A HEALTH CARE POWER OF ATTORNEY. COUNTY OF BODY DISPOSITION cannot make or communicate those decisions. This form may be used to create a health care power of AUTHORIZATION attorney, and meets the requirements of North Carolina law. However, you are not required to use this AFFIDAVIT 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. KNOW ALL PERSONS BY THESE PRESENTS: EXPLANATION: You have the right to name someone to make health care decisions for you when you This document gives the person you designate as your health care agent broad powers to make health cannot make or communicate those decisions. This form may be used to create a health care power of care decisions for you when you cannot make the decision yourself or cannot communicate your decision Texas Health and Safety wishes attorney, and meets the requirements of North Carolina law. However, you are not required to use this I, ___________________________ (print name), based on the authority of the You should discuss your Code, concerning life-prolonging measures, mental health to other people. 711.002(g), upon my oath make the following declaration and directiveand other health care decisions with your health care agent. Except to the extent that you form, and North Carolina law allows the use of other forms that meet certain requirements. If you prepare treatment, concerning the disposition of my body your own health care power of attorney, you should be very careful to make sure it is consistent with North after my death: I declare that it is my wish and I hereby authorize and specific limitations or restrictions in thisbe express direct that, upon my death, my remains form, your health care agent may make any health care Carolina law. (initial one box): Check Initial decision you could make yourself. This document gives the person you designate as your health care agent broad powers to make health care This form does not impose a duty on your health care agent to exercise granted powers, but when a decisions for you when you cannot make the decision yourself or cannot communicate your decision to other Cremated power is exercised, your health care agent will be obligated to use due care to act in your best interests people. You should discuss your wishes concerning life-prolonging measures, mental health treatment, and Interred at a cemetery or on private property and in accordance with this document. other health care decisions with your health care agent. Except to the extent that you express specific Interred at a mausoleum limitations or restrictions in this form, your health care agent may make any health care decision you could Donated to medical science; if this disposition is not possible because no medical or research facilityis intended to be valid in any jurisdiction in which it is presented, make yourself. This Health Care Power of Attorney form will ___ accept my body, I direct that my remains be (initial one box): but places outside North Carolina may impose requirements that this form does not meet. Cremated If you want to use this form, you must complete it, sign it, and have your signature witnessed by two Interred at a cemetery or on private property qualified witnesses and proved by a notary public. Follow the instructions about which choices you can Interred at a mausoleum 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 Other disposition as specified: should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina _________________________________________________________________________________ Secretary of State: http://www.nclifelinks.org/ahcdr/ I want artificial nutrition regardless of my condition. 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 Other disposition as specified: you sign it. You then should give a copy to your health care agent and to any alternates you name. You 1. Designation of Health Care Agent. should consider filing it with the Advance Health Care Directive Registry maintained by the North Carolina ________________________________________________________________________________________ Secretary of State: http://www.nclifelinks.org/ahcdr/ I, _____________________, being of sound mind, hereby appoint the following person(s) to serve as my ___ I do NOT want artificial nutrition regardl ess of my condition. ________________________________________________________________________________________ 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, Signature of Declarant: ______________________________________ Date: _____________________________ in the order named. 1. Designation of Health Care Agent. ___ I, _______________________________, being of sound mind, hereby appoint the following person(s) to serve as A. Name: Printed name of Declarant: ____________________________________ 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 Home Address: decisions for me as authorized in this document. My designated health care agent(s) shall serve alone, in the order BEFORE ME, the undersigned notary public for the State of Texas, personally appeared named. A. Name: _____________________________ Home Address: _____________________________ ___________________________________________ I want artificial hydration regar dless of my condition. B. Name: Home Telephone: _________________________ __________________________, the Declarant in this Body Disposition Authorization Affidavit, who upon Home Address: Work Telephone: _________________________ his/her oath made the foregoing declaration(s), including placing his/her initials in the boxes he/she choose on this Cellular Telephone: _________________________ the _______________ day of _________________________, 20_____. B. Name: _____________________________ Home Telephone: __________________________ Home Address: _____________________________ Work Telephone: __________________________ ___________________________________________ Cellular Telephone: __________________________ ___ Home Telephone: Work Telephone: Cellular Telephone: C. Name: Home Address: ____________________________________________________ Notary Public for the State of Texas Home Telephone: Work Telephone: Cellular Telephone: Home Telephone: Work Telephone: Cellular Telephone: I do NOT want artificial hydration regardless of my condition. C. Name: _____________________________ Home Telephone: _________________________ Home Address: _____________________________ Work Telephone: _________________________ ___________________________________________ Cellular Telephone: _________________________ My commission expires: ________________________________ Funeral Consumers Alliance of North Texas 2875 E Parker Rd, Plano TX 75074, 972-509-5686, info@fcant.org MAY BE REPRODUCED FOR PRIVATE USE ONLY. NO COMMERCIAL USE IS APPROVED. Body Disposition Authorization Affidavit Page 1 of 2

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?

HIGH COST OF END OF LIFE CARE Medicare recipients spend during the five years before their death averaged about: $39,000 Individuals Source: Mount Sinai School of Medicine study $51,000 Couples $66,000 Long-term illnesses

THE SOLUTIONS

CAN DEATH BE GOOD?

1. COMPLEXITY VS. SIMPLICITY 2. VISUALIZED INFORMATION 3. CONVERSATIONAL TONE

1. COMPLEXITY VS. SIMPLICITY Lack of design thinking

A PDF TOOLKIT 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 wishesabout burial, autopsy, and organ donationsclear in advance. ORGAN AND T ISSUE DONATION D ID 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 b ody 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. 1. Do you want to donate viable ORGANS for transplant? (Circle one) Yes Not sure No 2. If Yes, check one: ____ I will donate any organs. ____ Just the following: _______________________________ 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: ____________________________

A GOOD DEATH TOOLKIT INFO TITLE tHIS IS WHERE THE QUESTION GOES OPTION 1 OPTION2 STATISTICS 245,000 SOURCE

2. VISUALIZED INFORMATION Lack of visualization to display complex information

USA CREMATION TRENDS 2011 Deaths Cremations % of death cremated 2,464,392 1035,074 42.0% Source: The Nebraska Coalition for Compassionate Care and the Nebraska Hospice and Palliative Care Association, (NHPCA) 2010 end-of-life survey .

NUMBER OF PATIENTS IN THE U.S WHO RECEIVE TUBE FEEDING Hospital 245,000 Home HealthCare 30,700 babies 8,100,000 Source: AHRQ Healthcare Costs and Utilization Project (HCUP) Nationwide Inpatient Sample (NIS) 2009 data.

ATTITUDE TOWARDS ADVANCE DIRECTIVES Want Have 93% 20% Source: The Nebraska Coalition for Compassionate Care and the Nebraska Hospice and Palliative Care Association, (NHPCA) 2010 end-of-life survey .

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

WHAT IF you are in severe discomfort most of the time (such as nausea, diarrhea). Want Treatment 1 2 3 4 5 Do not Want Treatment

LIVING WILL Which of the following do you fear the most near the end of your life? Being in pain OR Losing the ability to think OR Being a financial burden on loved ones OR To be alone

CREATING CONVERSATIONS WHERE CONVERSATIONS ARE TABOO.

NAVIT KEREN navitush@gmail.com @navit_keren