When Grief Feels like Fear

Mary Coleman, MSW, RSW Canuck Place Children’s Hospice, Vancouver Coastal Health North Shore Palliative and Supportive Care Program Beverley Pomeroy Patient Experience Consultant / Healthcare Educator, Canuck Place Children’s Hospice parent voice

Canadian Hospice

Palliative Care

Conference

Faculty/Presenter Disclosure Presenters Name: Mary Coleman and Beverley Pomeroy Commercial Support and Conflict of interest There are no potential conflicts of interest with presenters or materials presented in this workshop

Hopes for today

Consider the connections between trauma informed practice and hospice palliative care

Understand how traumatic stress may present in the course of serious illness for patients, caregivers, and grievers

Learn a few key theories from trauma treatment that may apply in palliative settings

Practice three interventions to support wellbeing

Grounding and

Containment

Why TIP in Palliative

Care matters

• Trauma is all too common - effects are enduring and

profound • It may shape every aspect of a person’s life, even years

later • It impacts our ability to support, to alleviate suffering and

promote quality of life in patients and caregivers • It can complicate dying and grieving • We can change how we see our clients - shift from “what is

wrong with her” to what happened to her” and how is what she doing helping her to survive painful circumstances?

• More research needed on intersection of trauma and EOL • Better understanding would have implications for service

provision (Diane Smylie presentation BC TIP Practice project, Haskell 2008, Feldman 2011

Glick 2018)

How prevalent in patients

• 2015, National Cancer Institute reported nearly 1/3 of patients develop PTSD

• 68% of breast cancer patients reports symptoms not full criteria appears to be higher

• one study 82% - 88% of patients receiving palliative radiation for terminal cancers scored high for intrusive and avoidance

• 30-54% of HIV patients

• 14-59% of ICU patients with various life threatening illnesses ( Lillis 2018 Feldman 2011)

What is Trauma and Trauma Informed Care

“Trauma results from an event or series of events that is experienced by an individual as unexpected, physically or emotionally harmful or life threatening and has lasting adverse effects in the individuals functioning and mental, physical, social, emotional or spiritual

well being “

Events - the way a person experiences the EVENTS determines whether it is traumatic. How a person labels, assigns meaning; profound questions of “why me” and sense of powerlessness, self blame; Effects of the events - may be short or long term and may not even make the connection between the events and the effects. • Inability to cope with stressors • Limited trust and benefits of relationships and supports • Difficulty managing cognitive process (memory , attention, thinking) and to regulate emotions and

behaviors • Views of the world are shattered - of self, world and future

SAMHSA Concept of Trauma 2014

Types of Trauma

SINGLE INCIDENT COMPLEX OR REPETIVE

DEVELOPMENTAL HISTORICAL AND INTERGENERATIONAL

Symptoms of Traumatic Stress

Who is Vulnerable

ADVERSE CHILDHOOD EXPERIENCES

ADULT ATTACHMENT PATTERNS

INTERGENERATIONAL, HISTORICAL TRAUMA

Trauma Specific Services

Clinical Work that supports wisdom from trauma specific services

Trauma Informed Practice

The Four Rs: Key Assumptions of a Trauma Informed Approach

Realization - trauma happens in the context of coping strategies to survive adversity and overwhelming circumstances, trauma affects a persons experience in palliative care and EOL

Recognize - signs of trauma in context of palliative care and EOL

Responds - program, organization, and services address in a non-traumatizing way

Resists - re-traumatization

Trauma Informed Services Key Principles (BC trauma informed practice guide)

Organizations, and Interpersonal Interactions Promote • Safety - understanding what this means

to the person • Trustworthiness and transparency • Choice, collaboration and connection • Strengths based and skill building • Aware of cultural, historical context,

leverages the healing value of traditional cultural connections, recognizes historical and intergenerational trauma effects

Discussion Questions

How is safety, control, choice, trust threatened in journey of serious illness?

How do key features of trauma present in palliative care?

What are challenges in recognizing effects of trauma?

Serious Illness as a Traumatic Stressor

Diagnosis can be sudden and unexpected and presents an ongoing threat to ones life

Interventions that are intrusive, many of its treatments may involve significant violation of bodily integrity.

Intense responses of fear and helplessness, shatter assumptions about control, safety, and predictability.

Not a singular event - entails a cascade of unfolding threats and stressors.

Illness triggers pre-existing trauma symptoms ( Cordova 2018 Lillis 2018)

How it may Present in Palliative Care Intrusions life review and pain may trigger, nightmares and poor sleep

Avoidance can lead to poor medical adherence - distrust of health providers and refusal of care - can make acceptance of death difficult

Arousal coping - anger, irritability, medical communication difficult, touch and sensory input overwhelming

Relationships Disrupted family and social supports - high levels of marital distress and family , high levels of caregiver burnout, may lack caregivers because of history of social isolation, treatment planning difficult

Recognize in Palliative Care: What are the Challenges ?

Patients and caregivers may not

have stamina to complete a formal

assessment

Symptoms may not be accurately attributed to

traumatic stress- somatic complaints,

behavioral issues (anger, etc).

May co-exist with cognitive changes - may not be able to describe , recognize

or understand

Symptoms often overlap and

exacerbate each other(pain, sleep

disturbances, anxiety)

Living at the Intersection of

Trauma and Grief: A Care Giver Lens

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The Journey

The Burden of Treatment

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Living Grief: The Profound Journey of Ongoing Loss

Willingness The Fall Period of Reckoning Sweet Spot

Willingness

It is what it is’, ‘We can beat this’, ‘Nothing is impossible’, ‘I will need help, support with this’. family care giver embraces the inevitable future of their loved one and all that comes with it. There is a sense of hope and optimism and willingness.

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The Fall

A physiological response to a change in diagnosis, progression of disease, stay at a hospital, addition of equipment or intervention, medical care. The family care giver collapses, is drained after they’ve been in a heightened sense of crisis…its this physiological response.

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The Reckoning

For family caregivers this could be the spiritual bargaining, a period of reckoning. Or it would be systemic bargaining for services, support, understanding, acknowledgment.

Two fold. Angry spiritually that their loved one is suffering. A sense of helplessness evokes anger. Angry that the support services providers are not meeting their needs, having to juggle it all. Short fuse. Quite often this is when a family giver ‘breaks’ at something seemingly benign…what it represents.

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The Sweet Spot of Connection Sweet spot. About choosing a different story, perhaps letting go. As family caregivers we can and do cling to a preferable reality (false or not). This is where we seek and experience joy, all that ‘is’.

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Slipping into Grief

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The Intersect

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• Family caregivers can experience anxiety, distress, and depression at levels greater to or equal than patients

• (Huang presentation - Palos et al, 2011)

• 20-30% of care partners experience post traumatic stress symptoms

• (Huang presentation-Posluszny, et al 2015)

• Only 5% of parents who had lost their child continued to function steadily well.

• (Frank J. Infurna and Suniya S. Luthar, 2017)

• Bereaved parents, on average, report poorer psychological well-being even many years after child loss

• (Floyd et al., 2013; Lehman et al., 1987; Rogers et al., 2008; Wijngaards-de Meij et al., 2005).

Respond: How to ask? Have you ever had any experience that was so frightening or upsetting that in the

past months you….. 1. Had nightmares or thought about it when you did not want to

2. Tried not to think about it or went out of your way to avoid situations that

reminded you of it

3. Constantly on guard, easily startled

4. Feel numb, detached from others or your surroundings? (Feldman and Glick)

Stepwise Psychosocial

Palliative Approach

Stages based on prognosis , move to later stages only if earlier ones were not effective

and there is time to implement 1. Days to Weeks: attend to immediate discomfort and provide

social supports, concrete changes to reduce distress, practical concerns (funeral etc), family conflicts, problem solving, spiritual care,

2. Weeks to Months - provide psychoeducation and enhance coping skills, speaking at length about trauma memories at this stage discouraged not to increase distress

3. Months to Years - treat trauma specific issues - most of us refer to mental health professionals (Feldman 2014)

Trauma Related Interventions

Psychoeducation

Brain and nervous system

Emotional Regulation, Skills and Resources

Grounding and containment Mindfulness

Self compassion

Brain and Body

• Flexible • Adaptive • Coherent • Energized and balanced • Stable (Dan Siegle)

Wellbeing looks like FACES:

The Smoke Detector, The Cook, and the

Watchtower

• Trauma Changes how we see the world and disrupts 3 systems of integrated brain:

1. Threat system (Smoke Detector) danger alarm, see danger where others do not, primitive fear driven brain, amydala is hyper activated

2. Filter system (The Cook) - higher up in the brain, the thalamus gland that takes sensory input, difficulty determining what is relevant, it gets confused and overwhelmed, hard to engage but hyper focused on some things, senses with no time stamp (as if the past floods into the present)

3. Self sensing system (The Watch Tower) - experience of self gets blunted, difficulty coping with body sensations, dampened aliveness, pre-frontal cortex that is able to notice oneself, the landscape of the body, to perceive one’s experience

(Bessel Vander Kolk The Body Keeps the Score)

Levels of Information Processing

COGNITIVE PROCESSING Conceptual information processing, reasoning,

meaning-making and decision making. EMOTIONAL PROCESSING Expression and articulation of feeling and affect. SENSORIMOTOR PROCESSING Processing through the body. Sensorimotor processing Involves sensory, physiological and motor (Ogden & Minton, 2000)

Polyvagal Theory Stephen Porges - “The Science of Feeling Safe enough to engage with life”

• Neuroception - Nervous system looks for cues of danger and safety, unconscious awareness, activated by triggers and “glimmers”

• Hierarchy - Automatic Nervous system reacts in the service of survival. Sympathetic and parasympathetic work together

• Co-regulation - Regulate nervous system in connection with others

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Where am I? How do I know I am there? How did I get here? what resources help me to move up to connection and rest?

Paying attention in a particular way; on purpose, in

the present moment and with out judgment Jon Kabat-Zin

Mindfulness

Naming Thoughts, Feelings, and Sensations with Kindness

Trauma Informed Grounding and Mindfulness • Depending how activated, start with neutral, external information then move into more internal states as safety and calm increases • Move inwards as nervous system is stabilized

Self-Compassion

Finding your compassionate voice I love you and I don’t want you to suffer

Self Compassion

Break

1. This is a moment of suffering - mindful awareness • This hurts so much. • This Grief feels unbearable – there it is 2. Others experience this same suffering – common humanity • No wonder I feel this way – others feel this way to. • I’m not alone. 3. May I be kind to myself – kindness Hands over your heart, feel the warmth of your hands and the gentle

touch of your hands on your chest. You can also ask yourself, “What do I need to hear right now to express

kindness to myself?” • May I learn to accept myself as I am • May I forgive myself • May I be strong. • May I be patient with myself