National Hospice and Palliative Care Organizations Palliative Care

National Hospice and Palliative Care Organization’s � Palliative Care Resource Series Family Caregivers in Palliative Care and Hospice: Minimizing Burden and Maximizing Support Written by: Myra Glajchen, DSW Director of Medical Education MJHS Institute for Innovation in Palliative Care

Caregivers in Palliative Care � • P �rovide 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

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

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

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

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 better role adjustment among spouses Kim, 2008; Schumacher, 2008

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

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

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

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

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

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

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

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?

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.

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

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

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

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

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

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

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

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, Mc. Carkle R, 2011

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

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

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

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

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

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

Domain Seven: Care of the Patient at the End of Life • Communicate signs and symptoms of death • Be vigilant in 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

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

Domain Eight: Ethical and Legal Aspects • Help patient identify surrogate • Make 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

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

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

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

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

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

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.

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?

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.

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

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 hospice care 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

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.