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

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

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

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

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?)

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

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.

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.”

Q&A

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

Contact information Orley Bills orley.billsiii@imail.org Dominic Moore dominic.moore@hsc.utah.edu David Pascoe david.pascoe@imail.org