When Goals of Care are Not Enough

Originally posted on June 23, 2016

UCLA Program Provides Advance Care Planning and Hospice to Santa Monica Homeless Community

The scenario below, based on a real-life case, is only an example of the challenges that face healthcare practitioners as they approach Goals of Care discussions and completion of advance directives with their homeless patients.
Knowing what our patients want and getting those wishes recorded is only part of the struggle.

Thomas is a homeless man in his late 30’s. He has Huntington’s Disease. His gait and speech are steadily deteriorating. He knows his condition will only worsen and that his disease process will take his life. And he is very clear about his goals: he doesn’t want to die in a hospital or a facility and does not want aggressive life-prolonging treatment. He has a sister and calls her intermittently but they are not close. He identifies the others in his homeless community as his family.

And yet this is what Thomas faces:
 
  • If Thomas is “found down” somewhere in his community, he will likely be transported to one of our area hospitals and admitted to one of our Intensive Care or Progressive Care units. Assuming that he has shared these wishes with his sister or recorded them in an advance directive that is readily available, he will at best avoid life-prolong treatment such as artificial ventilation.
  • If Thomas does not have documentation of his choices and is unable to communicate, he may find himself on a ventilator, receiving the very aggressive care he said he does not want. If his sister can be found, she will be in the unfortunate situation of trying to decide what would be appropriate treatment for the brother she barely knows.
  • In either circumstance, should he survive, he will be in no state to return to the streets and his community of choice. Most likely he will find himself in a long-term care facility, or trapped in an inpatient hospital setting with nowhere else to go. And his friends may struggle with visiting him, assuming they even know where he is.
 
In 2014, the University of California, Los Angeles Medical Center in Santa Monica launched the Homeless Advance Care Planning committee with help from the Coalition for Compassionate Care of California.

This advance care planning outreach effort is intended to offer the homeless—particularly those with chronic illness—a voice in their own healthcare decisions, especially at the end of life. To date, more than 125 advance directives have been distributed to homeless individuals in the Santa Monica/Venice area of West Los Angeles. Additionally, six trainings have been offered to UCLA staff, homeless outreach volunteers and healthcare providers from neighboring organizations.

Many of the homeless individuals we have worked with shared they would not want to be hospitalized, supported “on machines,” or end their lives in nursing homes away from their friends and community. And yet, even when these wishes are captured through an advance directive, there are few alternatives. An average of 30 homeless people die each year on the streets of Santa Monica, many of them without the pain and symptom management needed at the end of life.

In order to honor the wishes of the homeless, UCLA Medical Center, Santa Monica, is attempting to partner with hospices, homeless outreach programs and other healthcare facilities to create a new program: Hospice Under the Bridge, with the goal of providing the dying homeless with basic needs such as food, clothing and shelter, as well as symptom management and spiritual support.

We plan to honor the wishes of the members of the homeless at the most vulnerable time in their lives.

For additional information on UCLA’s Advance Care Planning for the Homeless and Hospice Under the Bridge projects, contact Jeannette Meyer at [email protected].

Liked this blog post? Read UCLA Medical Center pilots strategies for having end-of-life conversations with homeless community in Santa Monica.
Jeannette (Jeannie) Meyer, RN, MSN, CCRN, CCNS, PCCN, ACHPN, is a clinical nurse specialist in palliative care at the Santa Monica UCLA Medical Center and Orthopedic Hospital, and an assistant clinical professor at the UCLA School of Nursing.

The Advance Care Planning Coalition at the UCLA Medical Center, Santa Monica also includes Delia Cortez, LCSW, Lori Koutouratsas, MDiv, and Diana Ramirez.