Hope and Strength Surround Even the Dying - PowerPoint Presentation

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Hope and Strength Surround Even the Dying

Theresa Lynn, PhD, RN, LMSW, CTWings of Hope HospiceWestern Michigan University

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Credentials

PhD – Interdisciplinary Health Sciences, WMULMSW – GVSURN, BSN – GVSUCT – Certified Thanatologist, Association for Death Education and CounselingExecutive Director, Wings of Hope HospiceDirector, Wings HomeInstructor, WMU – online ‘Understanding Grief & Loss’

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Dissertation

Choices Related to Maximizing Quality of Life at End of Life

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Dissertation Chapter

5 triads (hospice patient, family member, provider) were interviewed about experience of hospice referralStrong themes of hope, strength and fear emerged Fears, Hopes and Sources of Strength Expressed by Hospice Patients, Caregivers and Providers

and

How They Inform Care

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2 Research QuestionsWhat are the fears, hopes, and sources of strength expressed by hospice patients, their caregivers and their referring health care providers

?What can these responses inform our understanding of and the care provided to patients and their caregivers?

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Why Important?

Resilience: the Bright Side of Aging?US, 201484% of all patients in hospice care were 65+ years old41% were 85+ years old1Alive until the moment of death

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Objectives

Differentiate between the hopes, strengths and fears of hospice patients, their caregivers and their providers.Define different kinds of hope and how hope changes related to end of life.

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Objectives (cont.)

Assess the value of knowledge about hope, strength and fear and how it might inform the way providers care for individuals with life-limiting illness and their caregivers.Describe the importance of relationships related to end of life.

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AvoidanceMany providers avoid talking with individuals/families about life expectancy

Inaccurate prognostication2-8Discomfort discussing death9

Believe patient unwilling to acknowledge

death

10,11

Continue curative

treatment

12

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Avoidance (cont.)

Lack of knowledge about hospice13Avoid perception of giving up hope14Fear of losing control of managing

illness

13,15

Ignorance of culture & perception of

hospice

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Perception of financial

reasons

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Time

Providers may perceive no time to have discussions about EOLClinician is efficient at expense of patient-centered care17

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Myth

Becoming a hospice patient causes one to lose hope12

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Context

Triad 1 – Rachel, Liza, Dr. N.Triad 2 – Paul, Lindy, NP E.Triad 3 – Ken, Nina, Dr. S.Triad 4 – Victor, Anya, Dr. G.Triad 5 – Mark, Jenny, Dr. T.

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Triad 1

Rachel – patient, age 96 Liza – daughter, lives in summer home 30 minutes southDr. N – oncologist

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Triad 2

Paul – patient, early 40s, strokes, guarded about AIDS diagnosis, rejected by familyLindy – girlfriend, home in small west Michigan townNP E – friendly, part of hospital system

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Triad 3

Ken – patient, age 89 Nina – wife, family-orientedDr. S – pulmonologist

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Triad 4

Victor – patient, 70s, retired pastor, cancer with metastasesAnya – wife, championDr. G. – oncologist

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Triad 5

Mark – patient, 70+, COPD, CHFJenny – sister, caregiverDr. T. – general practitioner

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Objective 1

Differentiate between the hopes, strengths and fears of hospice patients, their caregivers and their providers.19

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Fear - Definition

“To be afraid of” or “to worry about” 18

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Patients’ Fears

Rachel – heart attackPaul – “Not knowing if I’ll get up the next day”Ken – “I just hope that when it’s time to go that I don’t suffer too

bad”

Victor – “her

being without

me”

Mark – not completing house projects, stated no longer afraid of dying

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Caregivers’ Fears

Not afraid – “promoted to glory”“I don’t want to see him suffer when it’s his time.”“How lonely I’m gonna

be”

“I’m so afraid of him not being here”

“He helps me fix stuff.”

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Providers’ Concerns

“I want him to be able to live at home with his family and his loved ones around him and maintain as good a quality as long as he can.”

Patient not being realistic about abilities

“With

hospice on board I feel the concerns are

minimal.”

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Fears/Concerns of Study Participants

Physical

Emotional

Social

Spiritual

 

Rachel – heart attack

Paul –

day to day uncertainty

Mark

- unfinished projects

Victor – no one will see or use papers he wrote

Paul –

wheelchair

bound rest of

life

Nina –

see

patient suffer

Nina –

loneliness

Mark

– dying (prior to minister’s support)

Ken – suffering

 

 

 

 

Jenny –

managing home with patient

Liza

– not afraid, patient ‘promoted to glory’

Liza –

patient might fall, break hip

Victor – wife being without him

 

 

 

 

 

 

Nina –

patient

will suffer

Anya – of patient not being here

Dr. S –

peaceful death

Dr. S – presence

of loved ones for patient

Dr. T – minimal

concern

 

 

Dr. G –

patient not

realistic

Dr. S –

quality of life

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after death

before death

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Strength

“the ability to resist being moved or broken by a force”1925

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Strength

“I believe the Lord’s watching over me.”My family is…supportive.”“Lord, help me be a healing influence for this person.”“I know how to do this work.”

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Sources of Strength

Physical

Intellectual

Social

Spiritual

 

Mark

–

working

Dr. G

-

I know

how to do this [work]

Paul

- Lindy’s family

Rachel

– the Lord

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lindy

-

family

Liza

-

God

Victor

–

great marriage

Ken

– the

Almighty

Anya

-

Victor

Nina

– faith in God

Dr.

N

- family

Victor

– our faith.

Dr.

T

– faith in people

Anya

– God Almighty

 

Jenny - God 

NP E

- God

 

Dr. S

– Christian faith

 

Dr. T

– Christian faith

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provider

caregiver

patient

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Objective 2

Define different kinds of hope and how hope changes related to end of life.28

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Hope

“to want something to happen or be true and think that it could happen or be true” 20

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Patients’ Hopes

“To go to heaven”“Do what I can from the wheelchair”That wife will do well“Man enough to take the pain”

Magic bullet (cure)

“A longer life”

“To get things done”

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Caregivers’ Hopes

“Passing to be peaceful”No suffering“For the magic bullet” (cure)

“Keep him as active as he wants to be”

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Providers’ Hopes

Patient wishes respectedSymptoms managedFamily receive support

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Hope as Trust or Reliance21

Rachel (P)

–

go

to heaven,

go

home

Ken (P)

– that

wife

can exist after I’m gone

Victor

(P)

– peaceful transition, strength for wife and kids

Liza (C) – patient’s

passing to be peaceful (D), for

patient to

be happy

Nina (C) – patient

doesn’t

suffer

Dr. N

(

Pr

) – patient’s

wishes are respected, family receives support

Dr.

S (

Pr

)

–

patient will

be at home with family & loved ones

Dr.

T (

Pr

)

–

patient has sense

of peace with

remainder

of

life

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Before death

Death

After death

P - patient

C – caregiver

Pr

- provider

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Hope as Expectation of Fulfillment21

Rational

Irrational

 

Paul (P) – do

what I can from

wheelchair

Victor

(P) –

‘magic bullet’ [cure for his cancer

]

Ken (P) – not

in a lot of pain, man enough to take

it

Anya (C)

– ‘magic bullet’

Jenny (C)

– keep

patient

comfortable

Mark (P)

– longer life

(get

things done so

caregiver

doesn’t have to

worry)

Dr. N

(

Pr

) – patient’s

symptoms

well-managed

Jenny (C)

–

patient as

active as he

desires

Dr. G

(

Pr

) – patient’s

pain

well-controlled

until

end

 

Liza (C)

–

patient comfortable

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P - patient

C

- caregiver

Pr

- provider

after death

death

b

efore death

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Objective 3

Assess the value of knowledge about hope, strength and fear and how it might inform the way providers care for individuals with life-limiting illness and their caregivers.35

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Providers & Fears

Understand to alleviateProviders – difficult to anticipate post-death fearsRecommend services of other disciplines

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Providers & StrengthsSocial or spiritual

Relationships with others/God22Utilize relationships in care of others

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Providers & Hope

Support hopes for peaceful death by discussing careIrrational hopes not likely to changeLink with resources for post-death period

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Much Information to be Gained

What are your fears?Where does your strength come from?What are your hopes?Answers canGuide treatmentUnderstand and alleviate concernsLink with necessary resources

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Objective 4

Describe the importance of relationships related to end of life.40

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Importance of Relationships

Relationships important to most patients, caregivers and providersDon’t underestimate patient-caregiver relationshipProviders – intentionally foster trusting relationshipsEstablish foundation for discussions about end of life

Trust can make conversations more efficient – may seem paradoxical

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Humanity as Connector

Patients, caregivers and providers have unique perspectives but have humanity in commonRecognition of humanity may nurture end of life discussionsStill alive – last opportunity to help someone maximize resilienceContinued resilience living with loss

Results in living more fully

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Thank you

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References

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1National Hospice and Palliative Care Organization. (2015). NHPCO’s

facts & figures: hospice care in America. Retrieved from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf2Brandt, H. E. (2006). Predicted survival vs. actual survival in terminally ill

noncancer

patients in

dutch

nursing homes.

Journal of Pain and Symptom Management, 32

(6), 560-566.

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Brickner

, L.,

Scannell

, K.,

Marquet

, S., & Ackerson, L. (2004). Barriers to hospice care and referrals: Survey of physicians' knowledge, attitudes, and perceptions in a health maintenance organization.

Journal of Palliative Medicine, 7

(3), 411-418.

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Carrion, I. V. (2010). Communicating terminal diagnoses to Hispanic patients.

Palliative Supportive Care, 8

(2), 117-123

.

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5Casarett, D. J., Crowley, R. L. & Hirschman, K. B. (2004) How should clinicians describe hospice to patients and families?

Journal of the American Geriatrics Society 52,(11), 1923-1928.6Center to Advance Palliative Care (CAPC). (2014). Retrieved from http://www.capc.org

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Charon

, R. (2001). Narrative medicine: A model for empathy, reflection, profession, and trust.

Journal of the American Medical Association, 286

(15), 1897-1902.

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Christakis

, N. A., & Lamont, E. B. (2000). Extent and determinants of error in doctors' prognoses in terminally ill patients: Prospective cohort study.

BMJ: British Medical Journal, 320

(7233), 469-472.

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9Wyatt, G. K., Ogle, K. S., & Given, B. A. (2000). Access to hospice: A perspective from the bereaved.

Journal of Palliative Medicine, 3(4), 433-440.10Hyman, R. B. & Bulkin. (1990). Physician reported incentives and disincentives for referring patients to hospice.

The Hospice Journal, 6

(4), 39-64.

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Ogle

, K. (2003). Hospice and primary care physicians: Attitudes, knowledge, and barriers.

The American Journal of Hospice Palliative Care, 20

(1), 41-51.

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Sanders

, B. S. (2004). Hospice referral decisions: The role of physicians.

The American Journal of Hospice and Palliative Medicine, 21

(3), 196-202.

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13Weggel

, J. M. (1999). Barriers to the physician decision to offer hospice as an option for terminal care. Wisconsin Medical Journal, May/June, 49-53.14Kelly, K. S. (2006). Improving the way we die: A coorientation study assessing agreement/disagreement in the organization-public relationship of hospices and physicians.

Journal of Health Communication, 11

(6), 607-627.

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Richards

, J., & Takeuchi, L. R. (2006). Factors that influence physicians' recommendation of hospice care: An exploratory study.

Journal of Hospital Marketing and Public Relations, 17

(1), 3-25.

16

Carrion

, I. V. (2010). Communicating terminal diagnoses to

hispanic

patients.

Palliative Supportive Care, 8

(2), 117-123.

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17McCrae, N. (2013). Person-

centred care: rhetoric and reality in a public healthcare system. British Journal of Nursing, 22(19), 1125-1128.18Merriam-Webster. (2014a). Retrieved from http://www.merriam-webster.com/dictionary/fear

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Merriam-Webster. (2014c). Retrieved from

http://merriam-webster.com/dictionary/strength

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Merriam-Webster. (2014b). Retrieved from

http://www.merriam-webstercom/dictinoary/hope

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21Tulsky, J. A. (2002). Hope and hubris. Journal of Palliative Medicine, 5(3), 339-341.

22Smits, H. L., Furletti, M., & Vladeck, B. C. (n.d.). Palliative care: An opportunity for Medicare. Institute for Medicare Practice, Mount Sinai School of Medicine. Retrieved from http://www.mssm.edu/instituedformedicare/

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Discussion

Comments & Questions

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