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Screening for Complicated Grief in Palliative Care: Evidence and Implications for Practice Colleen Nordstrom, PhD The University of Melbourne Psychological, Social and Spiritual Special Interest Group 20 May 2009

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Page 1: Screening for Complicated Grief in Palliative Care: …...Screening for Complicated Grief 2. Bereavement Risk Index (BRI) (Kristjanson, Cousins, Smith & Lewin 2005, Australia) –

Screening for Complicated Grief in Palliative Care:

Evidence and Implications for Practice

Colleen Nordstrom, PhDThe University of Melbourne

Psychological, Social and Spiritual Special Interest Group20 May 2009

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Overview

• Complicated Grief

• Tools– Screening for Complicated Grief– Bereavement Risk Assessment

• Bereavement Practice Guidelines

• Current Australian Practice

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Complicated Grief: current context

• Complicated Grief (Kristjanson, Lobb, Aoun & Monterosso 2006)– need to use consistent definition

(as specified by Prigerson and colleagues)

• Prolonged Grief Disorder (PG – 13) – inclusion in DSM-V (Prigerson and colleagues)

• Intervention efficacy – well designed Complicated Grief RCT (Shear, Frank, Houck & Reynolds 2005)

– 16 sessions (Intervention & Control of psychotherapy)– response rate greater & time to respond shorter

– “provides solid-evidence for guiding clinical intervention”(Zhang, El-Jawahri & Prigerson 2006:1200)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

Prolonged Grief – 13 (Prigerson & Maciejewski, nd)

PART I: For each question, put an [X] to indicate your answer.1. In the past month, how often have you felt yourself longing or yearning for the person you lost?

� 1 Not at all� 2 At least once� 3 At least once a week� 4 At least once a day� 5 Several times a day

2. In the past month, how often have you had intense feelings of emotional pain, sorrow, or pangs of grief related to the lost relationship? � 1 Not at all� 2 At least once� 3 At least once a week� 4 At least once a day� 5 Several times a day

3. For questions 1 or 2 above, have you had the experience at least daily, for a period of at least 6 months? � 1 No � 2 Yes

4. In the past month, how often have you tried to avoid reminders that the person you lost is gone? � 1 Not at all� 2 At least once� 3 At least once a week� 4 At least once a day� 5 Several times a day

5. In the past month, how often have you felt stunned, shocked, or dazed by your loss?� 1 Not at all� 2 At least once� 3 At least once a week� 4 At least once a day� 5 Several times a day

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Prolonged Grief – 13 (con’t)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

13. Have you experienced a significant reduction in social, occupational, or other important areas of functioning (e.g., domestic responsibilities)?

� 1 No � 2 Yes

PART III: For this one question, put an [X] to indicate your answer.

5432112. Do you feel that life is unfulfilling, empty, or meaningless since your loss?

5432111. Do you feel emotionally numb since your loss?

5432110. Do you feel that moving on (e.g., making new friends, pursuing new interests) would be difficult for you now?

543219. Do you feel bitter over your loss?

543218. Has it been hard for you to trust others since your loss?

543217. Have you had trouble accepting the loss?

54321

6. Do you feel confused about your role in life or feel like you don’t know who you are (i.e., feeling that a part of yourself has died)?

Over-whelmingly

Quite a bit

SomewhatSlightlyNot at all

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WHO definition of palliative care:“Palliative care is an approach that improves the q uality of life of

patients and their families facing the problem associated with life-

threatening illness, through the prevention and relief of suffering by

means of early identification and impeccable assessment and treatment

of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

• … offers a support system to help the family cope du ring the

patients illness and in their own bereavement ;

• uses a team approach to address the needs of patien ts and their

families, including bereavement counselling, if indicated ; … ”

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Palliative Care Australia (2005)Standard 8

“Formal mechanisms are in place to ensure that the patient, their caregiver/s and family have access to bereavement care, information and support services.”

Primary Care“Information (both verbal and written) on loss and grief and the availability of bereavement support services is routinely provided to family members prior to and after the death of the patientBereavement risk for caregiver/s and family members is assessedduring the patient’s illness and support is offered based on need”

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

TOOLS

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Screening for Complicated Grief

1. “Screening to Predict Complicated Grief in Spouse s of Cancer Patients”

(Brintzen-hofeSzoc, Smith, Zabora 1999, USA)

– cross-sectional

– time since death ranged from 5 – 19 months

– retrospective reporting

– self-assessed by bereaved/client

– recommended 2 tools for screening (total of 73 item s)

– TRIG used to measure complicated grief

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Screening for Complicated Grief

2. Bereavement Risk Index (BRI) (Kristjanson, Cousins, Smith & Lewin 2005, Australia )

– prospective (3 and 6 months post-death)

– aim to test the BRI as a screening tool and protocol for use in home-based hospice program

– nurse assessed at time of death

– Core Bereavement Items (CBI – 17) used to measure complicated grief

– modified 4-item BRI acceptable reliability, validit y and feasibility

– predictive validity based on CBI, SF-36 & FAD

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Screening for Complicated Grief

3. “Screening for Complicated Grief: When Less May P rovide More”(Piper, Ogrodniczuk & Weideman 2005, Canada)

– Aimed to discover screening questions for initial assessments ofpsychiatric outpatients to identify which patients are likely experiencing complicated grief (CG).

– Used TRIG and items that define CGFound:

• “Items that reflected clinical beliefs about indicators and risk factors

associated with CG did not perform well.”

• best performer – “pictures about it popped into my mind” and “I tried not to

think about it”. – Sensitivity (88.6%) and Specificity (89.2%)– Nearly 90% of patients with and without CG were correctly

identified

• Mean time since death was 10.4 years

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Bereavement Risk Assessment

1. Bereavement Risk Assessment Tool (BRAT)(Victoria Hospice Society 2008, Canada)

– identifies risk and protective factors– not validated instrument– undergoing further development– has accompanying manual

» for instrument (protocol?)– used internationally

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Bereavement Risk Assessment

2. Range of Response to Loss (Relf, Machin & Archer 2008, UK)

– based on Machin’s (2001) self-assessment bereavement tool– not yet adapted for pre-bereavement self-assessment– ‘from risk factors to coping styles’– 2 axis

– ‘overwhelmed’ and ‘controlled’– ‘resilience’ and ‘vulnerability’

– has ‘guidance’ manual

“Assessment in relation to bereavement is no differ ent from ongoing assessment of family need.” (p. 15)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Practice Guidelines

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

�Ensure organisation components in place

�Carers’ needs part of terminal care

��Consent and data protection issues managed

��Protocols in place for three (above) levels of support

�3. Process to establish complex need & referral

�2. ‘Befriending’ support that doesn’t need professional

��1. All receive info on bereavement & how to seek help

�•Early bereavement

��•Throughout care

��•Death

�•Referral

�BRA done at:

���BRA to be multidisciplinary

���Family involved with BRA

Relf, Machin & Archer (2008)NICE (2004)Aranda & Milne (2000)

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“The extent to which the instruments are able to predict complicated grief responses has not been well documented given the cross-sectional nature of the study designs.”

(Kristjanson, Lobb, Aoun & Monterosso 2006:100)

“With the exception of the recent work by Kristjans on and colleagues, little systematic empirical work ha d been undertaken to test a clinical bereavement assessment tool for use in a palliative care settin g.”

(Kristjanson, Lobb, Aoun & Monterosso 2006:75)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

Tools: Summary

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“Individual clinical judgment is currently the most effective way of identifying those as [sic] risk, as risk assessment tools cannot be relied upon as a predictor of outcome.”

(NICE [The Manual] 2004:165)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

Tools: Summary

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Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

Australian Practice

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Australian Bereavement Practice

Survey of Australian Palliative Care Services(Mather, Good, Cavenagh & Ravenscroft 2008 MJA)

– Response rate 73% (n=236)– 95%(of 236) have a bereavement support program

» Phone call (86%)» Individual session/visit (84%)» Memorial service (66%)» Letter (55%)» Group session (31%)

– ‘formal bereavement risk assessment tool’ used by approx 66%

» Formal risk assessment 57% (met) 68% (regional) (ns )» Multidisciplinary assess 69% (met) 44% (regional)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Australian Bereavement Practice

Australian Survey of Palliative Care and Hospice Servi ces(Abbot, O’Connor & Payne 2008)

– Response rate 28% (n=143)

– 94% (n=127) provide bereavement services to all bereaved

– 3 orgs provide bereavement services to high risk on ly

– 66% (n=93) use bereavement risk assessment process» 83% (n=75) use in-house tool» 16% (n=14) use formal assessment tool

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Australian Bereavement Practice

They conclude:“… our data suggest that many services struggle to

provide what they would wish, because of the models of bereavement support used, the lack [of] formal assessment of risk, and personnel and funding constraints. Questions remain about the value of providing bereavement support to all, rather than allocating services based upon level of need.”

(Abbot, O’Connor & Payne, 2008:17)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Australian Bereavement Practice

“The ‘universalistic’ approach of offering bereavement support to all eligible adults reported in this paper is consistent with the general philosophy of UK hospices to care for patient and their family. However, it is inconsistent with NICE guidance to use ‘risk assessment’ to identify those people most likely to need support.”

(Field, Reid, Payne & Relf 2006:327)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Australian Bereavement Practice

“Is what is currently offered by SPCHS [specialized palliative care/hospice services] really specialist bereavement services or simply a ‘bereavement approach’ to people after they have experienced an expected death?”

(Currow, Allen, Plummer, Aoun, Hegarty & Abernethy 2008:4)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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How do risk factors for complicated grief identified before death

contribute to outcomes for the bereaved? An Update and Overview

Colleen Nordstrom, PhDThe University of Melbourne

Psychological, Social and Spiritual Special Interest Group20 May 2009

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Acknowledgements

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

• Eastern Palliative Care

• Professor Sanchia Aranda

• The NHMRC Palliative Care Research Fellowship Award (GRANT# 466669)

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Protective and Risk Factors(Stroebe, Schut & Stroebe 2007)

Situation & circumstances of death

Intrapersonalrisk or protective factors

Interpersonal or non-personal resources & protective factors

•Cause of death (sudden, untimely etc)

•Circumstances or place of death

•Type of lost relationship (child etc)

•Pre-bereavement caregiver strain

•Personality (eg optimism)

•Attachment style

•Previous bereavements

•Socio-demographic variables

•Pre-bereavement depression

•Religious beliefs

•Social support

•Economic resources

•Professional intervention

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Risk Factors

Risk Factor (Last 1988:115-6)

– is a loosely used term:

1. An attribute or exposure associated with an increased probability of a specific outcome (not necessarily a causal factor)

2. An attribute or exposure that increases the probability of a specific outcome (ie a ‘determinant’)

3. A determinant that can be modified by intervention to reduce the probably of occurrence of the outcome (a ‘modifiable risk factor’

All three have been used in the bereavement literat ure (Stroebe, Folkman, Hansson & Schut 2006)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Protective and Risk Factors(Stroebe, Folkman, Hansson & Stroebe 2006)

Risk Factor – is a variable, when present, increases the

likelihood of poor outcomeProtective Factor

– is a variable, when present, increases the likelihood of good outcome

Protective and Risk Factors– two ends of the same continuum or

orthogonal forces?

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Study Aim

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

AimTo examine factors that impact on bereavement outcomes within the context of palliative care.

Research Questions: 1. Does the quality of the dying and death experienc e

(as perceived by the bereaved individual, in this case, the family caregiver) mediate the impact of known risk factors for complicated grief?

2. How effective is a bereavement risk assessment in predicting complicated grief?

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Research Design

Three Components to the Study

1. Quantitative data obtained from carers (postal sur vey)

2. Qualitative interviews with carers

3. Screening data obtained from palliative care staf f

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Research Design

1. Quantitative

Longitudinal design with three time-points for data collection

Time 1 (admission to the palliative care service)• Patient information (age, disease, symptoms etc)

• Caregiver demographic & prior bereavements

• Caregiver burden, anxiety/depression/stress, optimism,

subjective health, relationship quality, prolonged grief

disorder (caregiver version)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Research Design

1. Quantitative (con’t)

Time 2 (six-weeks post-death)– patient symptoms week before death, preparedness for

the death, opportunity to farewell, bereavement support received

Time 3 (six-months post-death)– Subjective health, anxiety/depression/stress

(repeated from Time 1)– Bereavement phenomena (Core Bereavement Items) – Prolonged Grief Disorder

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Research Design

2. Qualitative interviews with carers– With sub-sample at Time1, Time 2 and Time 3– To explore individual meaning, context and

religious/spiritual beliefs

3. Screening Data– Not available

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Progress to date

Recruitment (13 Oct 08 – 15 May 09)Time 1 (admission)

• 276 postal invitations with 56 responses (20.3% response rate)

Time 2 (6 weeks post-death)

• 20 (of 56 carers) eligible for T2 package to be posted

• 18 have been received to date (90% response rate)

Time 3 (6 months post-death)

• 1 (of 56 carers) eligible for T3 package to be posted

• 0 received to date (posted Friday 15 May)

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Progress to date

InterviewsTime 1 (admission)

• 10 interviews

Time 2 (6 weeks post-death)

• 2 interviews

Time 3 (6 months post-death)

• nil interview to date

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Questions and Comments

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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Where to from here?

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References

Abbott, J.-A., O'Connor, M., & Payne, S. (2008). An Australian Survey of Palliative Care and Hospice Bereavement Services. The Australian Journal of Cancer Nursing, 9(2), 12-17.

Aranda, S., & Milne, D. (2000). Guidelines for the Assessment of Complicated Bereavement Risk in Family Members of People Receiving Palliative Care.Melbourne: Centre for Palliative Care.

Brintzen-hofeSzoc, K. M. (1999). Screening to Predict Comlicated Grief in Spouses of Cancer Patients. Cancer Practice, 7(5), 233-239.

Currow, D. C., Allen, K., Plummer, J., Aoun, S., Hegarty, M., & Abernethy, A. P. (2008). Bereavement Help-seeking Following an 'Expected' Death: A Cross-sectional Randomised Face-to-Face Population Survey [Electronic Version]. BMC Palliative Care, 7 from http://www.biomedcentral.com/1472-684X/7/19.

Field, D., Reid, D., Payne, S., & Relf, M. (2006). Adult Bereavement in Five English Hospices: Participants, Organisations and Pre-bereavement Support. International Journal of Palliative Nursing, 12(7), 320-327.

Kristjanson, L., Lobb, E., Aoun, S., & Monterosso, L. (2006). A Systematic Review of the Literature on Complicated Grief: Edith Cowan University.

Kristjanson, L. J., Cousins, K., Smith, J., & Lewin, G. (2005). Evaluation of the Bereavement Risk Index (BRI): A Community Hospice Care Protocol.International Journal of Palliative Nursing, 11(12), 610-618.

Last, J. M. (1988). A Dictionary of Epidemiology (2nd ed.): Oxford University Press.

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom

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References

Mather, M. A., Good, P. D., Cavenagh, J. D., & Ravenscroft, P. J. (2008). Survey of Bereavement Support Provided by Australian Palliative Care Services. MJA, 188(4), 228-230.

National Institute for Clinical Excellence. (2004). Improving Supportive and Palliative Care for Adults with Cancer. The Manual. London: National Institute for Clinical Excellence.

Palliative Care Australia. (2005). Standards for Providing Quality Palliative Care for all Australians. Deakin West, ACT.

Piper, W. E., Ogrodniczuk, J. S., & Weideman, R. (2005). Screening for Complicated Grief: When Less May Provide More. Can J Psychiatry, 50(11), 680-684.

Relf, M., Machin, L., & Archer, N. (2008). Guidance for Bereavement Needs Assessment in Palliative Care. London: Help the Hospices.

Shear, K., Frank, E., Houck, P. R., & Reynolds, C. F. I. (2005). Treatment of Complicated Grief: A Randomized Controlled Trial. JAMA, 293(21), 2601 -2608.

Stroebe, M., Schut, H., & Stroebe, W. (2007). Health Outcomes in Bereavement. Lancet, 370, 1960-1973.

Stroebe, M. S., Folkman, S., Hansson, R. O., & Schut, H. (2006). The Prediction of Bereavement Outcome: Development of an Integrative Risk Factor Framework. Social Science & Medicine, 63, 2440-2451.

Victoria Hospice Society. (2008). Bereavement Risk Assessment Tool. Victoria, British Columbia Canada.

Zhang, B., El-Jawahri, A., & Prigerson, H. G. (2006). Update on Bereavement Research: Evidence-based Guidelines for the Diagnosis and Treatment of Complicated Bereavement. Journal of Palliative Medicine, 9(5), 1188 -1203.

Psychological, Social and Spiritual Special Interes t Group 20 May 2009 Dr Coll een Nordstrom