1. Family Dynamics at End of Life
Orley Bills, LCSW, ACHP-SW
Dominic Moore, MD, FAAP
David Pascoe, BCC, CFHPC

2. Objectives
Describe common medical, psychosocial and spiritual issues that can affect family dynamics in end-of-life care
Understand additional family stressors that commonly occur when the dying patient is a child
Explore solutions to family stressors through adult and pediatric case studies
Discuss some practical self-care tips

3. DISCLOSURE
The content of this presentation does not relate to any product of a commercial entity; therefore, the presenters have no relationships to report.

4. Medical issues Paradigm of cure Undiagnosed illnesses Genetic guilt
Challenge of translating life decisions to medical decision making
Stigma of medications used in hospice and palliative care
Withholding hydration/nutrition
Discontinuing a therapy that has already been started

5. Psychosocial issues It Depends
Grief/Loss (anticipatory grief, life w/o child, etc.)
Lengthy hospitalizations = PTSD, anxiety, stress
Family Dynamics
Differing opinions
Tasks at EOL (mortuary, funeral, etc.)
Relationships (stress or strength?)

6. Spiritual issues Spiritual distress/wellbeing “Will I be judged?”
Religious coercion/support
Finding meaning in suffering
Guilt/forgiveness
Family religious differences

7. Case study#1: adult patient
Mrs. R is an 82-year-old with severe chronic obstructive pulmonary disease (COPD), osteoporosis, and arthritis who lives alone in subsidized housing for the elderly. She is dependent on home oxygen and respiratory medications. She states that she wants to avoid further hospitalizations for her disease, does not want to be intubated or resuscitated, and that she has a living will and durable power of attorney for health care in place. Mrs. R is currently on hospice. Her two adult sons live out of state, and she has one married granddaughter in the area. Mrs. R has been a religious person all her life and says she is “ready to go when the Good Lord calls her home.” Neither of her sons is religious, but her granddaughter is a member of a church that teaches every medical measure must be taken to support life at all costs. “My dad and uncle aren’t here, so they don’t know it’s her dementia talking when she says she’s ready to give up,” the granddaughter says. Today. Mrs. R is lethargic, unable to stand, and having difficulty swallowing her medications. The hospice team recommends a family meeting with Mrs. R, her granddaughter and her sons, who will participate by phone.

8. Case study #2: pediatric patient
M is a previously healthy 2 year old who was found face down in the family swimming pool after an unknown amount of time. M was brought to a children’s hospital ICU two days ago and is currently on a ventilator. M has three older siblings. All four children were at home with their dad while mom went to a neighborhood book club. As well as being devastated by the accident, both parents are feeling guilty and mom is vocally angry at her husband for letting this happen. In addition, their marriage is strained by religious differences. Mom is active in her church while dad has become distant from his faith and belief in God. Today, they have just been told by a medical specialist that M will never return to spontaneous breathing or movement. In consultation with the hospital palliative care team, dad expresses his opinion that they should transition to comfort care since there is now no hope for a cure. Mom angrily disagrees saying, “We shouldn’t be ready to give up on M so soon. I don’t know about you but I’m praying for a miracle.”

9. Q&A

10. Caring for yourself A good cry is worth 3 sessions with a therapist
A good laugh is worth 5
Take humor seriously
Take seriousness humorously
Tune out all the noise
Shed all the rationalizations
Purge all the worries
Ask yourself, “what is the path with heart?”
Pick up multiple tools

11. Contact information
Orley Bills
Dominic Moore
David Pascoe