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Hospice, Palliative and Bereavement Care

Robin L. Stocksdale, MSW, LCSW-C, CTBereavement Outreach and

Project Coordinator – Tanzania Partnership

Medical Sociology – Towson University November 4, 2015

The Basics About Grief

• It is a normal and necessary process• Everyone grieves differently• Expressions of grief vary among cultures• Experienced emotionally and physically• Difficult feelings are part of the healing

process• Grief work is essential

Types of Loss• The loss of something tangible• Immigrating to a new country• Retirement, children leaving the home• Unfulfilled dreams• Loss of job• Divorce• Chronic, debilitating disease – e.g. Alzheimer’s• Death of a loved one

What Do We Mean by Grief and Loss?• Grief is:

“a multi-faceted response to loss, particularly to the loss of someone or something to which a bond is formed”

• Grief before the death (anticipatory grief)• Grief at the time of death• Grief after the death (bereavement)– Uncomplicated grief – experiences of grief that are

common to most people, that lessen over time– Complicated grief – experiences of grief that are more

intense and prolonged

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Anticipatory Grief

• A misnomer• It is really grief for future losses and– Losses that have already occurred– Losses that are presently occurring

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Grieving Prior to a Death:Anticipatory Grief

• Awareness that someone we love is dying• Awareness of the losses coming with that death• Mourning, coping, planning and reorganizing

one’s life, socially and emotionally

Holley & Mast, “The Impact of Anticipatory Grief on Caregiver Burden in Dementia Caregivers.” The Gerontologist, 49:3, 2009.

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Example of Anticipatory Grief:Alzheimer’s Disease

• Cognitive decline• Loss of independence• Lack of insight and coping• Difficult behaviors• Loss of prior relationship• Loss of intimacy and companionship• Personal freedom and control• Anger, frustration and guilt

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Anticipatory Grief and Alzheimer’s Disease

• The “goodbye without leaving”• Sadness and longing• Worry and feelings of isolation• Not knowing what is coming next

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Impact of Anticipatory Grief on Caregiving

• Anticipatory grief acts as a barrier to the task of caregiving

• Anticipatory grief and ambiguous loss are greater barriers than hands-on care issues

Frank, Jacquelyn B. “Evidence for Grief as the Major Barrier Faced by Alzheimer Caregivers” American Journal of Alzheimer’s Disease & Other Dementias, 22:6, January 2008

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Preparedness for Death in Families of Persons with Dementia

• 20% of bereaved of PWD experience complicated grief• Being unprepared associated with complicated grief• Substantial # perceived themselves as unprepared –

despite 3 years median duration of caregiving• Lack of preparedness associated with higher

occurrence of depression, complicated grief & anxiety

Hebert et al, “Preparedness for the Death of a Loved One and Mental Health in Bereaved Caregivers of Patients with Dementia: Findings from the REACH Study.” Journal of Palliative Medicine, Vol 9 # 3, 2006

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Barriers to Help for Families of Persons with Dementia

• Barriers:– Lack of funding for residential care– Barriers to hospice care – medicare criteria

Treating depression before the death and providing supportive psychosocial interventions help the caregivers manage the death better

Schulz et al “Predictors of Complicated Grief Among Dementia Caregivers: A Prospective Study of Bereavement” American Journal of Geriatric Psychiatry, 14:8, August 2006

Common Experiences When Grieving

• Sadness• Anger• Guilt/Regret• Anxiety• Loneliness• Relief• Depression• Dizziness

• Lack of energy• Tightness in chest and throat• Sensitivity to noise• Dry mouth• Shortness of breath• Difficulty concentrating• Headaches• Stomach ailments

• Disbelief• Confusion• Sense of presence of the

deceased• Dreams of the deceased• Sleep disturbances• Loss of interest in activities• Restless over-activity

Common Experiences When Grieving

Common Behaviors When Grieving

• Sighing• Crying• Avoiding reminders of the deceased• Avoiding talking about the deceased• Seeking of reminders of the

deceased• Talking about the deceased

Influences On How One Grieves• Who died• Qualities of the relationship lost• Unfinished business• Roles that the deceased occupied• Individual’s coping behaviors• Individual’s level of maturity• Individual’s past experiences with loss and

death

Physiological and Psychological Factors

• Nutrition• Amount of rest and sleep• Physical health• Mental health vulnerabilities

Social Factors

• Support of other people• Education level• Social, cultural, ethnic & religious background• Sudden vs. expected death

Signs of Complicated Grief

• Protracted grief interferes with everyday life• Aggressive behavior• Thoughts of suicide• Substance abuse• Excessive or prolonged feelings of guilt • Ongoing inability to eat and sleep• Social withdrawal • New or increased symptoms of mental health issues• Symptoms of post traumatic stress

Risk Factors for Complicated Grief

• Very close relationship to the person who died• Difficult or estranged relationship• High degree of dependence on the one who died• Difficulty coping in the past• Losses in early life• Multiple losses• Sudden, unexpected death• Death perceived as preventable• Not socially acknowledged losses

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How Long Does Grief Take?

• Our culture – 3 days, one year• There is no time table for grief• It takes as long as it takes• We never fully get over, but we get

through• Pain gets less as one moves forward

Conceptualizing GriefTasks of Mourning

William Worden, Thanatologist

• To accept the reality of the loss• To work through the pain of grief• To adjust to new environment after the loss• To emotionally relocate the deceased and

move forward with life

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Phases of GriefTherese Rando, Thanatologist

• Avoidance phase– Avoidance and denial

• Confrontation Phase– A time of intense grief

• Accommodation Phase– Adjusting without forgetting– Reinvesting in life

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Therese Rando, ThanatologistThe Six “R”s

• Recognize the loss• React to the separation• Recollect the relationship• Relinquish the old attachments• Readjust to move into the new world

without forgetting the old• Reinvest emotional energy

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Grief Education – ADECThe Association for

Death Education and Counseling

• Normalizing grief• Education about moving through grief• Educating counselors about effective interventions• Educating the public about how to be helpful• Educating the public about what is not helpful

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• Gifts of Grief

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Meaning Making

• Sociological phenomena– Golf classics– Susan G. Komen– Alzheimers walk– AA Alzheimers event

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Grieving – A Normal Process

“Grieving is as natural as crying when you are hurt, sleeping when you are tired, eating when you are hungry or sneezing when your nose itches. It is nature’s way of healing a broken heart.”

Doug Manning

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Medicalization of GriefThe debate over inclusion of complicated grief in DSM-5 (Diagnostic and Statistical Manual)

• Arguments for:“Bereavement is a universal experience, and its association with

excess morbidity and mortality is well established. Nevertheless, grief becomes a serious health concern for a relative few. For such individuals, intense grief persists, is distressing and disabling, and may meet criteria as a distinct mental disorder.”

“Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11.” August 2009, Volume 6, Issue 8 PLoS Medicine | www.plosmedicine.org

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More Arguments For…• Bereavement is a universal and severe stressor that evokes a

recognizable constellation of painful and debilitating symptoms - Most bereaved people are resilient and do not need mental health treatment

• A subgroup with chronic severe grief has different clinical needs from most bereaved people

• About 10% of bereaved people develop complicated grief … that requires a specific targeted treatment

• A new category of complicated grief is needed in DSM-5 and suggests that the management of bereaved people can be improved by this and other modifications in DSM-5.

Shear, M. Katherine MD et al. “Complicated Grief And Related Bereavement Issues For DSM-5.” Depression And Anxiety, 28 : 103–117 (2011)

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Motivations for DSM-5 Inclusion

• Enhance the detection and potential treatment of bereaved individuals at heightened risk of persistent distress and dysfunction.

• Insurance reimbursement

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Questions?