Caregivers in Palliative Care

1. National Hospice and Palliative Care Organization’sPalliative Care Resource SeriesFamily Caregivers in Palliative Care and Hospice: Minimizing Burden and Maximizing Support Written by: Myra Glajchen, DSWDirector of Medical EducationMJHS Institute for Innovation in Palliative Care

2. Caregivers in Palliative Care • Provide substantial care to patients with serious illness and are themselves in need of care • Involved in direct care, decision-making, goal setting, advance care planning. • Professionals play a vital role integrating caregivers into plan of care and supporting them. • Information will present conceptual framework for working with caregivers across trajectory of advanced illness

3. Conceptual Framework • Stress Process Model • Attachment Theory • Mutuality • Bereavement • Care Transitions • Domains of Palliative Care • The Family Meeting • Caregiver Research

4. Conceptual Framework: Stress Process Model • Contextual factors • Fixed characteristics = age, gender, relationship • Dynamic characteristics = living arrangements, relationship quality, family functioning, developmental stage • Caregiver stressors ebb and flow over time • Role overload can lead to feeling captive • Caregiver burden occurs when demands exceed coping Pearlin, 2010; Fletcher, 2012

5. Conceptual Framework: Attachment Theory • Strong attachment is related to commitment to provide care • Strong attachment is associated with lower sense of subjective burden • Sense of obligation is related to greater sense of burden Bowlby, 1981

6. Conceptual Framework: Mutuality • Positive quality of the relationship between caregiver and patient • Better relationship quality is associated with lower level of burden, depression and resentment • Marital satisfaction predicts betterrole adjustment among spouses Kim, 2008; Schumacher, 2008

7. Conceptual Framework: Grief and Bereavement • Loss: being deprived of someone or something important • Grief: normal reaction to loss • Bereavement: grief after death of someone close • Mourning: psychological process of integrating grief; culturally determined • Anticipatory grief: expectation of the death

8. Assessment • Physical well-being • Social well-being • Psychological well-being • Spiritual well-being • Cultural well-being

9. Assessment: Physical Well-Being • Can primary caregiver provide assistance with ADL’s and IADL’s? • Is caregiver willing and able to monitor symptoms? • Can caregiver assist with management of prescription medications? Stenberg et al, 2010; Bakas, 2001

10. Assessment: Physical Well-Being • Assess living arrangements • Living with patient is associated with higher burden • Sleep disruption and deprivation • Joint, muscle problems • Fatigue • Lower self-care • Bathing and toileting associated with lower well-being • Immune system deficiencies • Increased mortality Schulz R, Beach SR, 1999

11. Assessment: Physical Well-Being • Survey of 1,677 family caregivers in the US • 46% performed medical and nursing tasks • 78% managed medications, IV’s, and injections • 35% were doing wound care • 35% functioned as care coordinators • 69% had no home visits by HCP’s • Over 50% said they felt they had no choice, no one else to help, and insurance would not cover services • Reported both negative and positive effects • Most caregivers felt they were helping to avoid institutionalization AARP, 2012

12. Assessment: Social Well-Being • Living with patient is associated with isolation • Some caregivers experience erosion of social support • Most have financial concerns • Employment is protective for caregivers, form of social support • Social support network

13. Assessment: Psychological Well-Being • Assess caregiver for depression • Assess caregiver for anxiety • Use past coping to assess strengths and resources • Assess family’s developmental stage: • How will the illness and treatment demands affect the family unit? • What losses are typically associated with this life stage? Raveis, 2005; Stroebe et al, 2006

14. Assessment: Spiritual Well-Being • Conduct a spiritual assessment • Assess existential perspective on hope and suffering • Strengths: • Faith • Meaning • Risk factors: • Crisis of faith • Hopelessness • Anger –why me?

15. Assessment: Cultural Well-Being • Cultural norms must be respected • Cultural differences between professionals and patients can lead to underestimation of caregiver distress • Cultural imperative may pose barrier to accessing formal service • Taboos against verbalizing death obscure care planning • Professional interpreters should be used instead of family Aliyu, Adediran, & Obisesan, 2003; Weiner, Arnold et al, 2006; Glajchen, Homel et al 2003.

16. Caregiver Assessment • Caregiving can be rewarding • This area is less well developed in research • Potential rewards • Discovery of personal strength through adversity • Improved sense of self-worth • Deepening of the relationship with the patient • Sense of personal growth • Sense of fulfilling an obligation Balducci, 2008

17. Caregiver Assessment • Family caregivers (n=125) of patients receiving specialized palliative care were recruited from 4 settings • Caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS) • Results demonstrated that more prepared caregivers with higher levels of hope felt more rewarded. • Caregivers with higher levels of anxiety and spouses felt less rewarded by caregiving. • Although the caregiving role is complex, preparedness, anxiety and hope can and should be targeted. Henriksson A, Carlander I, Arestedt K, 2015

18. Best Practices for Integrating Caregivers:Care Transitions and Domains • Care Transitions • Diagnosis: integrate medical decisions • Treatment: make decisions, juggle demands, provide support • Recurrence: treatment, manage symptoms, preserve hope • Home care: manage patient at home, adjust environment • Placement: adjust to an institution, change in role status • Palliative care: functional limits, new goals of care, new team • Hospice: new goals of care, supportive care focus • Survivorship/Cure: resume normal life, with uncertainty • Death: witness patient suffering, achieve closure • Bereavement: grieve the death of a loved one

19. Domains of Palliative Care • Clinical Practice Guidelines for Quality Palliative Care • Published by the National Consensus Project for Quality Palliative Care, Third Edition, 2013 • Eight domains of palliative care • Can inform our work with family caregivers

20. Domain One: Structure and Processes of Care • Ask patient to identify primary caregiver(s) • Meet separately with primary caregiver to assess needs • Involve caregiver in decision-making from the start • Validate the role of the caregiver • Educate caregivers about diagnosis, prognosis • Review range of treatment options with benefits and burdens • Ensure caregivers understand different settings of care

21. Domain Two:Physical Aspects of Care • Assess fatigue, sleep disruption, functional limitations • Assess caregivers willingness, ability to help with ADL’s, IADL’s • Environmental assessment of home • Home care services can alleviate caregiver burden • Skills training can increase preparedness • Encourage self-care

22. Domain Three:Psychological & Psychiatric Aspects • Mild anxiety and depression respond well to counseling • Counseling can provide support • Intervene to help caregivers manage psychological reactions • Reinforce resilience and past coping • Consider referral for more persistent, longstanding, or complex psychiatric comorbidity • Start the work of anticipatory bereavement

23. Domain Three:Psychological and Psychiatric Aspects • As a direct consequence of assuming the caregiver role, caregivers in the palliative, hospice, and bereavement phases are at increased risk for psychiatric morbidity • Psychological burden of the caregiver can exceed that of the patient • Distressed caregivers can influence patient well-being • Interventions are needed to directly support caregivers Williams AL, McCarkle R, 2011

24. Domain Three: Psychological & Psychiatric Aspects • Caregivers differ in their responses to the loss of a loved one • Over 50% of bereaved caregivers report clinically significant depressive symptoms 1 year after the death of their loved one • Being bereaved predicts poorer mental health and greater psychological distress 8 years after the death • Models of attachment maintained by relationships in adulthood play a role in determining the nature and severity of grief reactions following loss of a spouse

25. Domain Three:Psychological & Psychiatric Aspects • Predictors and Risk Factors • Better quality of patient death reduces risk of bereavement regret • Incidence of major depressive disorder is more likely for caregivers with mental health difficulties before the loss of the patient • Completion of a DNR order is predictive of improved mental health from before the death of the patient to after the death

26. Domain Four:Social Aspects of Care • Isolated caregivers need more help from the formal system • Family meetings provide a safe setting in which to share decision-making and achieve consensus • Caregivers benefit from entitlements, financial assistance, community resources • Skills training improves competence and confidence

27. Domain Five:Spiritual, Religious, Existential • Conduct spiritual assessment • Address suffering, regret, legacy, closure • Make spiritual care available • Document discussion of spiritual and religious concerns • Document issues that the patient and caregiver do not wish to discuss

28. Domain Five:Spiritual, Religious, Existential • A recent hospice study identified the importance of addressing relational conflicts if these are important • Caregiver priorities: regret, shame, desire to repair the relationship, forgiveness • Opportunities for life closure, growth, emotional healing, and reconciliation exist even in the setting of end of life Exline JJ, Prince-Paul M, Root BL, et al, 2012

29. Domain Six:Cultural Aspects of Care • Respect language • Tailor information to patients’ and caregivers’ level • Understand cultural beliefs and preferences for truth-telling, decision-making, burial • Communicate cultural values to learn • Use professional interpreter

30. Domain Seven:Care of the Patient at the End of Life • Communicate signs and symptoms of death • Be vigilantin language • Help demystify emotionally charged terminology including: • Comfort care • Patient is DNR • Persistent vegetative state • There is nothing more we can do • Do you want us to stop everything? • Intensify caregiver support

31. Domain Seven:Care of the Patient at the End of Life • Poor psychological health outcomes exist beyond the first year of bereavement • Over 52% of caregivers in one study had one or more suspected psychiatric disorders, mostly anxiety • Comprehensive evaluation of psychiatric morbidity is often missing in clinical practice due to time resources Rumpold T, Schur S, Amering M, et al 2015; Masterson MP, Hurley KE, Zaider T, et al 2015

32. Domain Eight:Ethical and Legal Aspects • Help patient identify surrogate • Make sure surrogate agrees to assume the role • Ensure surrogate understands patients wishes • Document goals of care and treatment preferences • Identify Health Care Proxy Form, have it witnessed • Help patient complete advance directives • Living will vs oral • Convert treatment goals into medical orders

33. The Family Meeting • No single definition exists in the literature • Valuable clinical tool for: • Communicating medical information • Delineating goals of care • Facilitating decision-making • Paying attention to patient preferences • Safe setting in which to process emotions • Patient should participate if able • Important venue to acknowledge central role of caregiver • Can be called by patient, family or staff

34. Family Meeting Triggers:Palliative Care • Family conflict or crisis • Longer length of stay • Absence of designated health care agent • Major care decisions • Discharge planning • To share unwelcome prognostic information Billings, 2011

35. Family Meeting Triggers:Hospice • Change in medical status • Transition points in care • Advance care planning • Patient/surrogate decision making • Conflict resolution • Ethical dilemmas Back A, Arnold R, Tulsky J, 2009, Hudson P, Quinn K, O’Hanlon B, Aranda S et al, 2008

36. Family Meetings:Do They Benefit Caregivers? • Place to validate central role of caregivers • Creates a safe environment for goals of care discussions • Best to follow caregivers’ agenda, open-ended questions • Important to checking pts’ and caregivers’ understanding • Place to help caregivers to process intense emotions, providing support • Lends itself to interdisciplinary care • Can be a forum to share decision-making, reach consensus

37. Family Meetings:Best Practices • Optimal number: less is better, number of staff should not overwhelm family • Optimal time: 1 hour prep, 1 hour meeting, 30-60 minutes follow-up • Optimal choice of participants: • Patient • Caregivers invited by the patient • Involved health care professionals

38. Family Meetings:Best Practices • Literature on the family meeting is still relatively new • Existing studies suggest benefits outweigh the risks • Canadian study confirms the value of planned multidisciplinary family meetings in specialist inpatient palliative care units • Family caregivers reported a statistically significant increase in having their care needs met, in a before-after Australian study using a trained palliative care nurse; they also reported that the meetings were useful Hannon, O’Reilly, et al 2012, Hudson, Thomas, 2009.

39. Family Meetings:Best Practices • Is the family meeting associated with higher satisfaction? • How do we document family meetings? • How do we measure outcomes and define success? • Does the family meeting cost or save money? • Are outcomes affected by meeting length, space, number of participants • Does individualized planning for family meetings reduce ad hoc and informal meetings, saving teams time?

40. Caregiver Research • What benefits the patient benefits the caregiver • Earlier referral to palliative care and hospice reduces patient’s symptoms and also benefit caregivers • Earlier hospice referral and longer enrollment are associated with less caregiver depression • Lower rates of ventilation, resuscitation, less ICU time are associated with higher satisfaction and less PTSD.

41. Caregiver Research • Joan Teno’s group evaluated US dying experience • Survey of family members/other informants: 1578 decedents • Asked about patient’s experience at last place of care which patient spent more than 48 hours • Did healthcare workers? • Provide desired physical comfort and emotional support to the dying person • Support shared decision-making • Treat the dying person with respect • Attend to the emotional needs of the family • Provide coordinated care Teno, J 2004

42. Caregiver Research • Concerns reported • Inadequate treatment for pain, dyspnea (25%) • Concerns with physician communication (25%) • Insufficient emotional support (35% from home health, LTC or hospital) • 70.7% of caregivers rated hospicecare as ‘excellent’ compared with less than 50% of those dying in institutions or with home health • Bottom line: family members of decedents who received care at home with hospice are more likely to report a favorable dying experience

43. Conclusions • To ensure that caregivers’ needs are met, high standards are needed in knowledge, clinical competency, and understanding of best practices. • Working with caregivers falls to no one member of the health care team, but rather, falls to every member. • Specific caregiver interventions, such as the family meeting, should be quality indicators in palliative care and hospice.