Palliative Care of the Imminently Dying Patient through an Interdisciplinary Team of Physicians, Midlevels, and Transitions Counselors who Educate Families and Provide Support and Alternatives to Meet Both Family and Patient Needs

Guideline 7.1 Signs and symptoms of impending death are recognized and communicated in developmentally appropriate language for children and patients with cognitive disabilities with respect to family preferences. Care appropriate for this phase of illness is provided to patient and family.

Criteria:

• The patient’s and family’s transition to the actively dying phase is recognized when possible and is documented and communicated appropriately, with attention to population-specific issues and age appropriateness to patient, family, and staff.
• End-of-life concerns, hopes, fears, and expectations are addressed openly and honestly in the context of social and cultural customs and within a developmentally appropriate manner.
• Symptoms at the end of life are assessed and documented on a timely basis and are treated based on patient-family preferences.
• The care plan is revised to meet the unique needs of the patient and family at this phase of the illness. The need for higher intensity and acuity of care during the active dying phase is met by the interdisciplinary team and documented.
• Patient and family wishes regarding care setting for death are documented. Any inability to meet these needs and preferences is reviewed and addressed by the palliative care team.
• As patients decline, the hospice referral option will be introduced (or reintroduced) for those who have not accessed hospice services as appropriate.
• The family is educated regarding the signs and symptoms of approaching death in a developmentally, culturally, and age-appropriate manner.
• Ideally, sensitive communication is done around autopsy and organ donation decision making before the time of death as appropriate.

Description

We provide holistic care to the imminently dying patient and their family. Through daily advanced assessment of symptoms, family meetings, and educational materials, we prepare and plan for end of life care and management at the Medical Center of Central Georgia.

• Implement a team of palliative care specialists in our program: Medical Director, Assistant Medical Director, Geriatrician, 2 Physician Assistants, 1 Nurse Practitioner, 1 Clinical Nurse Specialist, and 7 Psychotherapists. This team assesses and treats patient symptoms on a daily basis.
• Educate every patient we are consulted on in regards to the signs and symptoms of dying. Inform families that a patient is actively dying. Our service published a booklet on an eighth grade reading level titled “A Journey through Healthcare” that we provide to family members to review on the process of dying.
• Received a grant that will enable us to purchase a puppet to better illustrate extubation and withdrawal of life support to children and patients or family members with a lower education level.
• Partner with a local hospice to provide “Skyler Bears” to children to help them better understand the concept of death. Each bear comes with a CD and book that tells the story of how Skyler and his friends cope with the loss of Skyler’s grandfather.
• Assessing family concerns and feelings continually by our palliative consult team that is available 24 hours a day, 7 days a week. We routinely have family meetings to discuss concerns and address expectations of a patient’s course of decline.
• Assist the primary MD with education on end-of-life care and options. We provide education on hospice services at home, inpatient, and that which is available in our 5 bed Palliative Care Unit.
• Maintain a close relationship with LifeLink, and organ donation service. As appropriate, we work with the LifeLink representative to have a discussion regarding options for organ and tissue donation. In 2008, there were 122 referrals to LifeLink from our facility; 25 patients ultimately donated their organs and our Transitions counselors were actively involved in 17 of these cases.
• Provide support and information on autopsy at family’s request.

The Medical Center of Central Georgia had 848 deaths in 2008; our palliative care service and transitions team of counselors were involved in 75% of those cases. Our patient satisfaction survey revealed an 80% approval of the end of life experience provided by the Center for Palliative Care team. These significant results demonstrate an improved quality for end of life within our institution.