TRANSITIONAn ethnographic study of hospice in Savannah

2

STATEMENT OF PURPOSE ........................ 3

PARTICIPANT SELECTION ....................... 4

FOCUS .................................................... 5

METHODOLOGY ..................................... 6

SITE DESCRIPTION ................................... 9

ARTIFACTS .............................(See Folder)

FINDINGS ................................................ 7

CONCLUSIONS ..................................... 13

OPPORTUNITIES FOR DESIGN ............... 14

APPENDICES ......................................... 15• APPENDIX A_Introduction• APPENDIX B_Research Design• APPENDIX C_Unique Terminology• APPENDIX D_Interview Protocols• APPENDIX E_New Research Method

BIOGRAPHIES ....................................... 20• Contacts• Member Profiles

DISCLOSURE FORMS ....... (See Folder)

TABLE OF CONTENTS

3

Statement of Purpose

The purpose of this study is to explore barriers to using Hospice Savannah and their resources. Findings from this study will influence strategies that empower the local community to make informed decisions about hospice services.

The data gathered will ultimately pro-vide useful information for Hospice Sa-vannah as well as provide a foundation for PlayUp Savannah to create an instal-lation to promote community aware-ness of the non-profit organization.

STATEMENT OF PURPOSE

4

PARTICIPANT SELECTION

Scope

The project scope fo-cused on the decision-makers that facilitate use of hospice services.

How do people view death and grieving; how do they define hope, comfort, and peace within that context?

Family

What are the barriers to using Hospice Savannah

and their resources? How do we address them?

Community

t h i s b e l i eve

In times of crisis what is the decision-making process?

Who influences those decisions?

Health Professionals

What is Hospice Savannah’s core message?

A fourth research ques-tion exploring the core message of Hospice Savannah was not part of our primary focus, but was explored in depth by other re-search teams.

5

FOCUS

t h i s � be l i eve

Cultural ProbeAn alternative research method was incorporated to gather qualitative data regarding perceptions of death, dying, and grief. A Facebook group was created in an effort to reach and invite a vast number of potential participants in a one-week span. ��An article chosen from ThisIBelieve.org was linked and followed by three questions concerning relative points within the context of the article. �Participants were encouraged to listen to a brief recording or read the essay regarding a true story of personal loss and remembrance. ��Answers to the questions posed were surprisingly in-depth and rich with anecdotes regarding personal loss and significant life-experiences.

MM: Age 25motherStudent

JG: Age 24grandmotherStudent

KG: Age 61motherSocial Worker

DC: Age 41motherMedical Doctor

JB: Age 36Mother under Hospice car eServer

CL: Age 24Nurse

EW: Age 26Deceased relative, fatherStudent

6

METHODOLOGY

Methodology

Data was collected through passive and participant observation, photo and video documentation, and semi-structured interviews.

Affinitize

The data that emerged from the method-ologies were processed through affinitizing and modeling. The affinity diagram aided in identifying patterns of themes within the data.

Model

Interviews were transferred to cultural models while the cultural probe methods were affinitized and were modeled into empathy maps. We also modeled key quotes that helped solidify the interviewee perspectives by creating a customized model: Positions on Hospice. See Page 12.

7

SITE DESCRIPTION

Allow though our research did not focus specifically on a place, the Hospice house in Savannah helped us gain insight to the philosophy behind their services, and how might clients view their end of life experi-ence there. We also explored Camp Alo-ha and what methods are used to help children cope with death and grieving.

8

FINDINGS

Mothernamed KG durable power of health more than a decade

earlier�husband died when �KG was in college

Personal Professionalworked PT weekends for >10 yearsnow works full time; for >1 mo .school social worker >35 years

Hospital - �Process of careDoctor suggests hospice

Nurse repeats message

Doctor may re-enter �conversation if there’s tension

Social worker follows up

Family

Spokesperson�speaks for the familygenerally spouse or

eldest child

Husbanddisagrees with her end-of-life wisheslearned of hospice

through his aunt’s death

WG youngest son

seriously injured in car accident

LG oldest son�

had lived with her �as a caretaker

Patient�

In shock after initial �conversation with doctor

puts

fam

ily in

touc

h w

ith n

eces

sary

ser

vice

s

• trust, lack of• disagreement among family members�• initatiate conversation among children�

Brother (older)named durable power of attorneyexecutive who lives in california�

had been close with mother�Confirmed mother’s wishes, but

deferred to sister.

experience helped understand issues

Home• cleanliness• living arrangements• deteriorating health of primary caretaker

Hospice• began care at 6 mos. prognosis�• helped her “let go” of her mother

now works with older clients

KGinterviewee

wife of DGsocial worker at hospita lmother of two adult sons

current age 61

incre

dibl

e fe

elin

gs of

grat

itude

towa

rd

JBinterviewee

DAWNmother’s nurse

JOBinterviewee

HOSPICESAVANNAH

was staying at an

MOTHERhospice patient

has congestiveheart failure

been staying at Hospice House for 2 weeks

MEMORIALHOSPITAL

INDEPENDENTHOME FOR

THE ELDERLY

faxed mult

iple le

tters to

job e

xplai

ning J

B’s s

ituat

ion

became very sick &was transferred to

taking care of her mother

Afraid she would lose her job because of

absences in taking care of her mother

recommendedhospice

discu

ssion

with g

rief c

ouns

elor

mad

e he

r fe

el st

rong

er

9

FINDINGS

this believe

Cynthia Carter, MD

Doctor Hospice Savannah

PAIN GAIN

SEEHEAR

THINK/FEEL

SAY/DO

Since her Mother’s • passing from Colon Cancer back when she was in residency, she wishes she had known what she now knows about end-of-life care.

The job she has is not • depressing, in fact, she finds it incredibly rewarding.

Physician training, • specifically residency, spends too little time on Palliative and End-of-Life care.

She defends against accusations by • other doctors that her job is depressing because all her patients die, by stating other physician’s patients “die too.”

Most of what she does is Pain • Management and Palliative Care.

Unless people have had a • personal experience with a loved one or a friend, they don’t have any reason to seek out hospice care.

In medical care, usually • people know about medical fields and medical specialists through having needed them…the same is true with hospice care.

She claims she certainly • would have coped more effectively at the time had I had more knowledge of Hospice Care.

Patient’s and their Families often • complain as to why they didn’t use Hospice care sooner.

• Dr. Carter is well respected within • the hospice community.

• People are often misinformed about • what Hospice is as a service.

• She has heard some say “We • (Hospice Savannah) kill people”

• There are physicians from • other fields of medicine that continue to question how she manages practicing in such a “depressing” job.

Everyone Does not know about • Hospice.What they do know isn’t • accurate.Some do not know Hopsice exists • or what it means.Misconceptions include the idea • that Hospice “kills people”.

They think advancements in • technology can be used as “batteries” to keep people living...People often delay the use • of Hospice until it becomes too late.Physicians do not know enough • about Hospice so they fail to send more patients.

People need to • understand their Human Frailty, and make decisions based on quality of life not just working organs...

All healthy/young • people should fill out an Advanced Directive early and save the trouble of forcing their family members to make a critical desicion.

Physicians need to • realign their thinking with terminally-ill patients and what Hospice can do to help.

this believe

EMPATHY MAP

We used this method to organize and analyze the Facebook

responses to an essay written by a father whose infant son died.

PAIN GAIN

SEEHEAR

insanity

listen to music

grief is inappropriate

confusion about personal

grieving practice

sit shiva

not knowing

how to grieve

“settled account” with

loved one

comforted by the dead

imagine the dead as

present

fear of pain

comfort

depression

reflect

could have saved

the deceased (physically or

spiritually)

end of loved one’s

pain

distance = lack of physical support

look for lessons

learned

isolation in grief

happiness

being strong

read

feel guilty or

greedy for grieving

need for community

talk about

missing out on one’s

future

good memory/ lesson from loved one.

fair/unfair deaths

tell stories

unexpected “finish grieving”

ability to grieve in one’s

chosen way

talk about

deceased

afraid of losing

someone else

difficult experience =

empowerment

“coming out on the other side”

(enduring loss)

question ones action/

inaction

honesty/openness in

grief

show emotion

seeing dead body

grieving on your

schedule

cherish what you

have in life

create memory garden

Michael Jackson

& fans

“I am sorry”

(condolences)

value of life/birth

hide facts

burial

cover up/ clean up death

physical memorials (pictures,

etc.)

memory/ remembering

go to funeral

examples of grief

survivor stories

dance

hide emotion

wake/ funeral

sobbing/ crying

avoid eye contact

Jackie Kennedy (control)

silence

look for distraction/

escape

dreams of lost loved one

(very little)

prepare body for burial (orthodox jews)

parents/ family (models of

grief)

story of cause of death

should suppress emotion

share with friends,

family

disrespecting the deceased

chosen “tribal” network

THINK/FEEL

SAY/DO

DC Empathy Map

This Empathy Map illustrates the per-spective of Dr. Carter as a culmina-tion of her thoughts, actions, and views demonstrated by her account in an in-terview concerning her employer Hos-pice Savannah. Inspection of this map reveals the various challenges and successes she faces in her profession.

Cultural Probe Empathy Map

10

FINDINGS

MM’s cultural map tries to highlight the roles of different family members during his mother’s transition to hospice. There were dis-agreements on how his mother’s pain was managed and who the family believed would be most affected by the loss of his mother.

only 1 wk off

disagreed on amount of morphine

Mattinterviewee

coping after deathparties with friends

girlfriend as new female figure

current age 24

thinks about life milestones mom

will miss

hospice

in homemorphine

brought in big bedmedical equipmentoxygen3-4 visits/day

no grief services used

hurricane katrina

recentlots of visitors

in home

perceptions of death

too much reliance on religious faithwishes he would have faced reality

“can’t happen to us”

school/friends

parties take mind off

Mother

liver cancerdied 4 years agoLouisianain medical field

recent car accident worsened conditions

father

coped by dating shortly after death

in medical field:ultrasounds

Grandparentsmother’s parents

wanted ashes infamily crypt

doctor

recommendedhospice

hospiceworker

man, long hair“grim reaper”

to Matt

Brother 1

age 17

Brother 3

age 11

Brother 2

age 16

has down syndrome

tried all medical options (chemo, radiation)

wantedashesspread

strong

bond

last

wee

k of

life

beca

me

care

take

r

thought too much morphine

not beneficial,negative

perception

This Cultural Model addresses the limited con-nections JG has with hospice services by denot-ing the problem areas of communication that im-pede the accessibility of the service provided.

Jessica Grenoble

SCAD Graduate Student(Design Management)

FatherTrusts in God’s

Will

Mother

GrandfatherStill Alive after

Serious Surgeries

GrandmotherHospice Service

(Unspeci�ed)

Best FriendSCAD Student

FatherDies 3 Days After

Wife

StepmotherDies from Brain

Cancer

Hospital(Unspeci�ed)

Su�ered Serious IllnessHospitalized Intermittently

Close friend of hers and her family

Cared for her in comfort of home

She

had

brea

st c

ance

r bef

ore

Suggested transfer of ill Mother to Hospice

Won’t talk about Hospice Care

Believes it’s all about money, that doctors are a�liated with insurance companies...

Stood by her husband’s decision not to use Hospice

Won’t Talk about Hopsice Care

MM

JG

11

but opt for hospice because of realization that

HOSPICE SAVANNAH

CL-neuro nurse @ Memorial Hospital

-1.5 years experience-shadowed hospice worker for a

day during student nursing-works regularly with terminally ill

patients

HOSPITALTEAM-doctors

-hospice liaison-nurses

FAMILIES/PATIENTS-doctors

-hospice liaison-nurses

many reject hospice option at first

personally feels hospice is a good choice works within

that refers

provides patient & family comfort

• Religion

• Not Wanting to “Give Up”

• Misconceptions that Hospice is “the End”

why?

FINDINGS

Ex-Wifeuninvolved

EWAge 26

University/Las Vegas Grad (Antropology &

Visual Arts)

Melissa (Mom)Married 30 years

Teaches H.S MathGrief Care from

primary Dr.

Herbert (Dad)Age 82

Engineering Prof._Had colon cancer; Remission_Later had multisystem cancer

(liver, lungs)_Diea at home, mid March

_May name UNLV building after him.

Doctor_Original estimate, 6months, 3 years

_Revised estimate of 6 months

Hospitals

Rehab Hospital Bad

Veterans Hospital

Good_Woman suggested

Hospice

Adopted half brother

died, EW found out he ahd died when she was 22

DominiqueEW’s fiance

Belgian trauma nurse. Was headed back from his home when heard

about Dad’s death

Rosalymutual friend,

Hospice VolunteerFirst learned of hospice

through her

Half siblings (late 30’s-40’s)

Jay

Rumored drug history,Uninvolved,Melissa won’t talk to him,Single

John_Twin of JayBorn again christian,Against Hospice,kept trying to “save dad” spirituality,Put up images of Jesus,wanted full funeral,Single

NICKinvolved from a distance,Single,no Money to travel,wanted memorial

MARY

Worked in BangladeshHad MoneyMelissa wishes she had contributed moreLong term boyfriend

?

LucretiaVernon’s girlfriend

VernonAge 29 Full brother, student

Initia

lly w

ante

d ch

emo

Left

Hospice chemo decision to wife, left other health decisions to her

Told wife of illness, late feburary

Went to dr. when she was in school

frustrated Dad acting child lik

e

Had power of Attorney

Melissa’s Parents(EW’s grandparents.

EW says strong influencesDidn’t try to sway decision

Gave updates about stuff

Watches Amazing Race with Vernon, ha

d w

atc

hed

with

da

d

bought him home

from hospita

l (guilt)

Husband + Wife

Eylesia sa

ys mo

m isn

t we

ll, in de

nial about ?

“Aunt Sally”

Grandmother’s SisterDied 1 yr earlierrecent experience w/ deathGrandmother saw similarities between her death and Herbert’s.EW says she starved herself, after death of husband.

Told Elysia a/b cancer Feb10th

Told

EW the m

ost about Illness

EW’s cultural model highlights the complex family dynam-ic during the end of life process for her father. The Family creates the environment for which the patient must exist .

CL’s interview map was not as complex as the oth-er however it was able to offer insight on how much interaction nurses had with terminally ill patients. She also highlights the difference in roles of both the medical institution and a Hospice Savannah

12

Positions on Hospice

CL: Hospice is just so good, I wish that more families would utilize it.

JB: I’m just so grateful for this place, I really am.

EW: The decision against the hospice was because he still wanted to try chemotherapy.

JG: One of the doctors had suggested... ”Do you want to use hospice care?” Dad’s like, “No, she’s going to get over this.”

CC: We have to change the way people look at death ... death is like the enemy, and you’re taught that death is abnormal and you want to avoid that and you can’t ever stop trying to beat death.

KG: I had this conversation with my husband, because I know what I want, and I don’t think he’s so much in agreement with me. That’s why I need to get it on paper.

MM: Since they were giving her such high doses of the medication it was kind of like they were killing her quicker; they were controlling how she was going to die.

positive

negative

FINDINGS

The interview data is based on ques-tions concerning familiarity with hos-pice services.

13

Spheres of influence reinforce the patient’s wishes. When Hospice is at the center, each sphere supports that relationship.

Ideal Influence Structure

PATIENT

FAMILY

MEDICAL

HOSPICE

High Influence

Low Influence

No Direct Influence

Pare

nts Child

ren

Siblings Friends

Ho

spita

l

Socia

l Wo

rkers Nursing Homes

PATIENT+

HOSPICE

FAMILY

MEDICAL

COMMUNITY

Pare

nts Children Siblings Friends

Ho

spita

l

Socia

l Wo

rkers Nursing Homes

Current Influence Structure

COMMUNITY

CONCLUSIONS

The relationship between Hospice and client is essential to peace at the end of life. The following model depicts the current disconnect between hospice and reaching prospective patients. The ideal influence structure has influences some of the suggested design solutions.

14

DESIGN OPPORTUNITIES

PlayUp Savannah can help Hospice to establish early client relationships. Focusing on grief, encouraging early decisions and initiation of the con-versation about early decisions are some areas of suggested exploration.

PATIENT+

HOSPICE

PATIENT+

HOSPICE

FAMILY

Pare

nts

Children

Siblings

Friends

PATIENT+

HOSPICE

FAMILY

MEDICAL

Pare

nts

Children

SiblingsFriends

Ho

spita

l

Social

Wo

rkers

NursingHomes

FOCUS ON GRIEF: Everyone can relate to grief and loss, but no one can relate to death. In promoting Full Circle grief services, PlayUp Savannah can help Hospice Savannah develop relationships with patients before the need for hospice services. model: This I Believe

AN EARLY DECISION IS A GIFT TO YOUR FAMILY: A formal declaration of the patient’s wishes can prevent dispute at the end of life. Using positive language is important in conveying the benefit of advanced directives, transforming them from a burdensome subject into a benefit for the entire family. model: organ donation

SET THE TIME, SHAPE THE CONVERSATION: There are cultural norms and guidelines for initiating difficult medical or social conversations. Examples include parent/child

conversations about sex, first mammograms, etc. PlayUp Savannah can help Hospice Savannah by developing both the means and method for that interaction.model: “the talk,” medical screenings

15

INTRODUCTION

The following information provides an introduction to field research that will be conducted in the City of Savannah between April 7 and May 25, 2010 by (Alex Smith, Autumn Sanders, Billiejean Curvan, Colleen Heine, Erin Fenley), Industrial Design and Design Manage-ment graduate students at the Savan-nah College of Art and Design.

Research QuestionsOur research will be guided by the fol-lowing questions:

1. What is Hospice Savannah’s core message?

2. What are the barriers to using Hos-pice Savannah and their resources? (Community, perception, negative connotations, etc.) How do we ad-dress them?

3. How do people view death and grieving; how do they define hope, comfort, and peace within that con-text?

4. In times of crisis what is the decision-making process? Who influences those decisions?

Appendix A

MethodologyData will be collected through passive and participant observation, photo and video documentation, and semi-structured interviews.

Primary Contact InformationThis project is being conducted through the Industrial Design and De-sign Management department at the Savannah College of Art and Design. For additional information please con-tact Professor Christine Miller 912-508-1058.

16

RESEARCH DESIGN

Week 2 Week 3 Week 4 Week 10Week 9Week 8Week 7Week 6Week 5

Complete Phy-sician & Family

Interviews

Affinitize Interview info to identify patterns for

design aimProject Install-ment Proposal

Appendix B

Dying

18

INTERVIEW PROTOCOLS

Potential Protocol for Physicians & Families Project: Hospice Savannah

INDUS 711: Methods in Contextual Research

Team: Alex Smith, Autumn Sanders, Billiejean Curvan, Colleen Hiene, Erin Fenley

______________________________________________________________________________________

- 1 -

HEALTHCAREPROFESSIONALSPROTOCOL

OPENING:"Thankyoufortakingtimetotalkwithmeaboutyour

experiencewiththeHospicereferralprocess.I'mgoingtobe

askingyousomequestionsaboutyourexperiencewithhospiceandterminallyill

patients.

Q:HowdidyouinitiallylearnofHospiceServices?

• WereyouinSavannahwhenyoulearnedofHospice?

Q:Whendoingroundsatthehospitalhowlongdoyouspendwithyourterminally

illpatients?

• Howdoyouapproachyourvisitswithterminallyillpatients?

• Hastheamountoftimechangedwithinthespanofyourcareer?More/Less?

Q:Inyourcareerhaveyounoticedwhetherornotchangesininteractionwith

patientshaveaffectedreferralstohospice?

Q:Fromyourexperiencecanyoudescribetheprocessbywhichofhowaterminal

inpatienttransitionsfromyourcareintoHospiceCare?

• Isthereasethospitalorofficeprotocolyoumustfollowinordertotransition

patients?

Q:DoyoureferpatientstoaparticularHospice?

• Why?

Q:Howdoyoudecidewhichhospicetoreferthemto?

Q:HowwouldyoudescribeHospicecaretothepatientortheirfamilies?

Q:Arethereparticularcasesthatyourecallareactionfromapatientorfamilywhen

presentedwiththehospiceoption?

(We’dliketorenderinformationaboutthetypical/atypicalresponses,ideasabout

death/grief/dyingandbarrierstohospice)

Finalquestion:Isthereanythingyou'dliketosharethatwasn't

coveredinmyquestionstoday?

CLOSING:"Thankyouagainforyourtime.Isthereanyoneelseyou

wouldrecommendthatwetalkto?Iwanttomakesurewecoverallour

bases.

Family

Community

Health ProfessionalsAppendix D

19

SURVEY INSTRUMENTS

Cultural Probe

An alternative research method was incorporated to gather qualitative data regarding perceptions of death, dying, and grief. A Facebook group was created in an effort to reach and invite a vast number of potential par-ticipants in a one-week span.

An article chosen from ThisIBelieve.org was linked and followed by three ques-tions concerning relative points within the context of the article. Participants were encouraged to listen to a brief recording or read the essay regarding a true story of personal loss and re-membrance.

Answers to the questions posed were surprisingly in-depth and rich with an-ecdotes regarding personal loss and significant life-experiences.

Our society lacks the social aspect of coping with grief. Grieving has be-come a hidden personal experience. Individuals have not necessarily forgot-ten how to grieve; they have neglect-ed to share with one another in their grieving process. This diminished social grieving is unique to American culture. Many individuals are misinformed re-garding the grieving process and a positive perspective toward grieving is missing.

Appendix E

20

TEAM BIOGRAPHIES

MEET ALEX SMITH

Alex is a candidate for a Masters degree in the field of Industrial De-sign. He received a Bachelor of Arts degree from the University of Georgia in 2007, majoring in Speech and Com-munication. He is still in the process of developing his own design language, but particularly appreciates simplicity in function and style. He has always found interest in the human condition, the cognitive process, and logical reasoning.

MEET AUTUMN SANDERS

Autumn Sanders is currently an MA candidate in both Design Manage-ment and Graphic Design at the Sa-vannah College of Art and Design. Prior to attending SCAD, she studied journalism at Ohio University (Athens, OH) and worked at the St. Petersburg Times. Her work is characterized by in-depth questioning and attempting to understand her audience. She views ethnographic research rooted in an-thropology as essential to a design pro-cess that can be used in the develop-ment of both systems and objects. She recently interned with ReD Associates, an innovation consultancy with offices in New York and Copenhagen.

TEAM CONTACT INFORMATION

To contact any team member by e-mail or phone please see below:

Curvan, BilliejeanE-mail: bcurva20@student.scad.eduCell: 646-407-8836

Fenley, ErinE-mail: efenle20@student.scad.eduCell: 423-943-8376

Heine, ColleenE-mail: cheine20@student.scad.eduCell: 314-974-1293

Sanders, AutumnE-mail: asande21@student.scad.eduCell: 330-715-7207

Smith, AlexE-mail: asmith60@student.scad.eduCell: 239-877-6346

Professor Christine MillerTelephone: 912-508-1058

Savannah College of Art & DesignTelephone: 912-525-5100

21

TEAM BIOGRAPHIES

MEET BILLIEJEAN CURVAN

Billiejean is currently a candidate for her MA in the Design Management program at the Savannah College of Art and Design. She is a recent gradu-ate of Savannah College of Art and Design earning her B.F.A in Graphic Design. Prior to attending SCAD she attended Pratt Institute in NYC and earned her B.F.A in Film/Traditional Ani-mation. Throughout that time Billiejean has also worked as a Creative Recruit-er at Volt Services group and repre-sented the company on international projects. Billiejean pulls inspiration from her diverse background and intrigue of different cultures she’s encountered in her work and travel.

MEET COLLEEN HEINE

Colleen Heine grew up in St. Louis, Mis-souri and earned her B.F.A. in Visual Communication from the University of Kansas in 2002. After working as a de-signer for a small graphic design firm, she worked for seven years as Execu-tive Director of a not-for-profit music organization, Folk School of St. Louis. Colleen also played fiddle in a bluegrass band for several years be-fore moving to Savannah, Georgia in Spring 2010 to pursue a graduate de-gree in Design Management.

MEET ERIN FENLEY

Erin Fenley is a native of Johnson City, TN and holds a B.A. in Art Education from East Tennessee State University. Her professional career includes work as an art educator in public schools and non-profits, along with experience as an advertising agency art director. Erin is also a co-founder of the Little City Roller Girls flat-track roller derby team which currently has over 80 members ages 6-46. Now she skates in Savannah, Georgia and is seeking a graduate degree in Design for Sustain-ability at Savannah College of Art & Design.