making sense of end of life - a myhealth design research project

MAKING SENSE OF END OF LIFE: !

A MyHealth DESIGN !RESEARCH PROJECT!

Nisha Haji - @nishahaji Service Design Toronto

Oct 20 2015

ABOUT ME: !Community Service Designer

Social change/impact needs to be grounded in the experience that people have of a space and place. Community - Co-creation/Inclusion/Place Service - Public Service/Social Impact/Systems Thinking Design - Creative/Iterative/Process

A secure e-health innovation platform that will

give Canadians access to their medical records and empower them to become more active in

managing their own health.

Applies a “lab” and service design method to five use-case scenarios, including End of Life.

ABOUT MyHealth, MaRS:

The project aimed to:

1.  Better understand the patient experience 2.  Identify insights related to the experience 3.  Establish design principles to guide interventions and co-creation

METHODOLOGY SECONDARY RESEARCH •  Advocacy group reports, •  Service provider guides and •  Academic research PRIMARY RESEARCH INTERVIEWS

3 Primary care givers 2 Palliative care physicians 1 Community palliative care nurse …Over 2 months

PRIMARY CARE GIVERS

Recently experienced the loss

of a loved one, gave memorable details about the patients

experience and a reflective account of their experiences.

Richer stories and clear identification

of gaps related to interaction with health care data.

PALLIATIVE CARE PHYSICIANS

Offered a systemic view

of the end of life care and highlighted challenges

and opportunities within the professional practice.

Palliative care physicians contributed to insights on the input and collection of

health care data.

COMMUNITY PALLIATIVE CARE NURSE

Provided the perspective of patients that are choosing

home care as well the systemic challenges of this

choice.

Scratched the surface of the reality of wanting to die at

home and the lack of access to health care data.

“I would spend time with Mum while Jack went out to grab groceries

and stock the fridge.”

“I usually skim through the notes

and get to the most recent test results.”

“Sometimes I feel like I reverse midwife. I do everything I can but

can’t control anything.”

INSIGHTS

patterns surprises implications

Insight / RELATIONSHIP

NURSES ARE MEDIOCRE BFF’S The quantity of time that nurses spend with patients out weighs the quality during end of life care, due to a number of factors. Including time to do more than symptom management, confidence and knowledge on end of life care.

DOCTORS ARE TRAINED TO BE DOCTORS Much of the physicians’ role at the end of life stage is based on their personal philosophy on the role of healthcare, which is influenced by the training they receive.

THE GENERATIONAL SANDWICH The complex reality of an ageing society, including demographic changes contribute to the burden on primary care givers. They are often sandwiched between aging parents and young children, both of which require care.

Insight / TIME

THE COUNTDOWN TO DEATH HURTS Patients in the end of life stage feel pressured and anxious based on the unpredictable countdown of life left more than dying. Time becomes a burden above a beyond financial stress.

DATA IS DRAGGED THROUGH THE SYSTEM Physician notes of the patient visit and test results move through the healthcare system with significant lags (up to 10 day delays). Release of information usually requires patient consent and data is only accessible in hard copy often via fax.

PREDICTABILITY OF LIFE LEFT DEFINES “END OF LIFE” The terms palliative care and end of life care are often interchanged and there seems to be a debate on the language. Therefore many of the advocacy groups and service providers turn to the length of time left before an estimated death to describe the nature of care (6 months or less = palliative care, last few days = end of life care).

Insight / STORY

DISTANCE IMPACTS RELATIONSHIPS AND CARE Access to long-term care facilities, retirement homes etc. is limited to high-income families in urban settings. Many primary caregivers do not live with their aging parents, adding the burden of distance during the end of life stage and creating a significant gap in care for low-income patients.

DYING IS INSTITUTIONAL Most patients believe that end of life care and inevitably death can only occur in a hospital, hospice or nursing home. They don’t share Their desires for alternative end of life care.

EVERY GOOD STORY HAS A GOOD ENDING Patients want to maintain their dignity by continuing to be independent. They fear that end of life care will change the memory that friends and family have and therefore seek to stage their end of life.

PERSONA

GenderDiagnosis

AgeCultural background

UrbanRural

Community supportSocio-economic status

ImmigrantFamily health historyProfessional network

Type of homePhilosophy

LifestyleEducationReligionSiblings

Partner…

ELDERLY IMMIGRANT WOMAN A 78 year old woman from a first generation immigrant family who was diagnosed with a late stage cancer (complex-chronic terminal illness). She is well supported with close family and community ties. Part of her cultural experience is that her end of life decisions and her care is left to her children.

Persona / CHARACTERISTICS

•  Suffers from terminal illness (i.e. late-stage cancer) and depression due to high pain, increased symptoms, and inability to treat illness.

•  Complex condition (dementia, nutritional deficiency, etc.) brought on by illness and age.

•  Individual and family trust doctors and medical practitioners completely.

•  Lives with adult children and want to expedite death in order to be less of a burden on family.

•  Has little financial independence, but strong financial and moral support from family.

•  Comes from communities where care for the elderly is part of culture, death is considered a family affair, and social supports exist for individual and family during end-of-life and bereavement period.

ELDERLY IMMIGRANT WOMAN

MyHealth! Experience0Map:0End0of0Life0Case00This%experience%map%is%based%on%an%interview%of%a%particular%patients’%family%member%%(see%Persona%for%more%details)%and%is%supported%by%preliminary%research,%including%readings%of%publications%from%various%health%care%service%providers%and%advocacy%groups.%Note:%Some%insights%are%inferred.%

%

0 0 “The%Talk”% % Choosing%and%Managing%Care% % Last%Days% % Bereavement%

0 % The%patient%(and%primary%caregiver)%are%made%aware%of%the%need%for%palliative%and%/or%end%of%life%care.%%

% The%patient%(with%their%primary%care%giver%where%possible)%identifies,%chooses%and%enters%into%a%type%of%care%(inJhome,%inJhospice,%inJhospital).%The%choice%depends%on%social/financial%support,%personal%goals,%medical%needs%and%professional%advice.%Once%care%is%chosen,%the%patients’%health%is%monitored%and%evaluated%against%their%quality%of%life%and%personal%goals%for%end%of%life.%%

% The%patients’%condition%indicates%entry%into%end%of%life%and%is%therefore%predicted%to%live%for%a%few%more%days.%The%primary%consideration%is%patient%comfort,%and%encouraging%family%and%patient%psychosocial%health.%

% While%the%patients’%journey%ends%in%the%last%stage,%this%stage%involves%social%support%to%the%family%and%caregivers.%%

Positive0Experience00

% % % % % % % %

% % % % % % % %

Neutral0Experience00

% % % % % % % %

Negative0Experience0

% % % % % % % %

% % % %%%%%

% % % %

0 % The%patient%feels%hopeless%and%tired%at%the%initial%talk.%The%primary%caregiver%feels%confused%but%optimistic%about%home%care.%A%2nd%talk%occurs%when%the%patients’%health%worsens.%%The%caregiver%feels%upset%and%responsible.%%

% The%patient%and%primary%caregiver%choose%home%care%based%on%personal%and%cultural%values.%The%home%care%nurse%liaises%with%the%oncologist%and%caregiver%to%gather%medical%and%dayJtoJday%information%about%the%patient.%The%nurse%cares%for%the%patient%in%her%home%for%a%short%period%of%time%daily,%but%the%patients’%health%worsens%and%she%continues%to%feel%hopeless.%%The%patient%and%primary%caregiver%access%their%network%of%support%(family%friends%who%are%medical%professionals)%for%advice%and%have%a%second%talk.%The%oncologist%initiates%the%referral%to%a%palliative%care%hospital.%The%primary%caregiver%feels%guilty%until%the%patient%is%admitted%at%a%palliative%care%hospital%and%begins%to%recover.%The%patient%sees%a%palliative%physician,%receives%care%24/7%by%a%palliative%nurse,%no%longer%feels%like%a%burden%on%her%primary%caregiver%and%feels%more%hopeful.%%

% The%patient%is%kept%comfortable%and%therefore%feels%content%as%she%approaches%the%end%of%her%life.%%The%primary%caregiver%feels%sad%and%recognizes%that%the%end%is%close,%but%given%the%patients%outlook%is%encouraged%to%plan%for%her%death.%%The%palliative%nurse%feels%overwhelmed%as%she%transitions%from%primarily%addressing%the%obvious%symptoms%and%medical%needs%of%the%patients’%end%of%life%to%emotionally%supporting%the%primary%care%giver.%%

% The%palliative%nurse%feels%reassured%as%the%primary%caregiver%leaves%the%palliative%care%hospital%feeling%prepared.%%The%primary%caregiver%feels%confident%to%manage%the%practical%elements%of%bereavement%but%unsure%about%the%emotional%grieving%journey.%%

Supporting0Insight00

% Doctors%are%trained%to%be%doctors%Every%good%story%has%a%good%ending%

% Dying%is%institutional%%J%Why?%Countdown%to%death%hurts%J%Caregiver%point%of%view%Impact%of%a%strong%social/professional%network?%Cultural%influence?%%

% Predictability%of%life%left%defines%“end%of%life”%Nurse%as%a%mediocre%BFF’s%

% Cultural/social%factors%that%influence%bereavement%and%behavioral%change%(e.g.%financial%status,%community%supports)?%

Patient%Primary%Care%Giver%Oncologist%Home%Care%Nurse%Palliative%Physician%%Palliative%Nurse%!

2nd%Talk%

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1st0Choice:%Home%Care%

2nd0Choice:%Palliative%Care%

Initial0Talk%

The%primary%caregivers%future%journey%as%a%patient%might%be%influenced%by%this%experience.%Patients’0life0ends0

EXPERIENCE MAP

Experience Map / REFLECTIONS

•  Trajectory – Starts at “The Talk”

•  Multiple experiences –

•  Handing off experiences and the implications of an e-innovation platform , MyHealth.

How might having access to heath care records change the hand off?

•  Connecting the insights to the experiences.


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2nd%Talk%

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Initial0Talk%


Based on the interdependencies between care providers and

patients and the unique experiences in this scenario, design principles were identified for:

DESIGN PRINCIPLES

Design principles guide potential interventions in co-creation.

PATIENT/PRIMARY CARE GIVER

PHYSICIAN/ NURSE/SERVICE

PROVIDER &

Pay attention to how long a service takes. Time is precious and can also be seen as a burden for patients in this stage. Demonstrate value for time and relate back to improving experience. Focus on reflection and creating opportunities to share stories. Make it easy to share positive stories and memorable events during their life. Make caregiving and physical barriers secondary to celebrating life. Reduce logistical planning during bereavement. Identify details that take precedence to grieving after the loss of a loved one. Prepare families and caregivers earlier, including opportunities to act on them sooner. Remember caregivers are often juggling multiple caregiving roles. Understand that caregivers stretch their ability and guilt between various responsibilities. Offer opportunities to help make choices that don’t compromise on any of their roles. Show that death is a normal and care is not a burden. Balance reflection and story telling with ways to honor the present moment. Focus on strengthening family relationships and ways to share caregiving responsibilities.

Design Principles / PATIENT, PRIMARY CARE GIVER

Pay attention to how long a service takes. Increase efficiencies and access to data along the pipeline and trajectory.

Create ways to share relevant healthcare data easily and quickly.

Use language that tells stories of well-being. Communicate symptoms, options for end of life care and day-to-day patient experiences.

Show the human elements of institutions, like community and values.

Consider ways to reduce geographical barriers. Distance has a strong impact on access to care and the quality of time spent with the patient. Explore partnerships and technology to cut down distance and/or increase time with patient.

Expand the social support role within End of Life/Palliative care. Invite others, such as volunteers and social service providers, to contribute.

Create a safe space for patients to share stories and caregivers to seek support.

Identify ways to help families prepare for End of Life care early. Identify triggers and leverage interactions to increase awareness of the end of life care.

Building stronger relationships with caregiver, family physicians, community etc.

Design Principles / PHYSICIAN, NURSE, SERVICE PROVIDER

•  Tension between a “designers” point of view and human-centred design - Insights on patients experience

•  A language that can be emotionally neutral, and accessible - Persona

•  Falling in love with and breaking up with

research - Rich stories and reality

•  End of Life is complex and requires diverse tools and approaches - Community Service Design

Service Design in End of Life / REFLECTIONS

THANK YOU!Nisha Haji @nishahaji

“I think it’s easy to flirt with time and get caught up in sweet memories from early years and fears of things that “could” be in later years. But between history and a future that does not exist, there is the opportunity to make meaning. Maybe to have better relationships. Don’t get caught up in flirting with time. Talk to someone about your end of life, and rise above waiting—waiting to take care of yourself.”