It was Father's Day weekend, and photographs of my brother were sprinkled among the tables at the reception. Raymond wasn't physically present at the wedding of his oldest daughter, Amy, but his memory lives on among those of us who loved him.
"Mrs. Barton, your son is dying." The harsh words of reality were delivered to my mother by Raymond's oncologist more than 21 years ago.
Could they have been revealed a little more gently like a slow, boiling pot of water rather than as a quick deep fry? When do you finally cave in to reality, especially when miracles do happen?
Raymond was only 36 years old when he was diagnosed with non-Hodgkin's lymphoma. Always the life of the party, he died a year after diagnosis, leaving his widow, Sandy, to raise their three children on her own: Jason was 12, Amy was 5 and Shelli, the youngest, was 3.
The message revealed
When should the end of life be discussed and who is responsible for initiating the discussion?
Knox Todd, M.D., chair of the Department of Emergency Medicine at MD Anderson, says there's a lack of understanding about palliative care and hospice, both among the general public and the medical staff who treat them.
He says the end-of-life conversation should begin much earlier, right along with discussion about the diagnosis and treatment.
"It's important not only to assist our patients in living well," Todd says. "It's just as important to assist them in dying well."
Patients with terminal cancer, understandably, look to their doctors for the cure and may want to avoid messages concerning their fate. In turn, doctors can be complicit in this silence.
Many end-of-life disclosures occur at the very late stage of life, Todd says, and often the message is delivered by an emergency physician.
Formerly the program director of the Pain and Emergency Medicine Institute at Beth Israel Medical Center in New York, Todd witnesses the reality of emergency care on a daily basis:
- The emergency department is the revolving door for patients in a downward spiral
- 50% of adult deaths occur in hospitals, mostly in an intensive care unit
- Nearly all enter through the emergency department
With this information, Todd received a grant from the Fan Fox and Leslie R. Samuels Foundation in 2007 to study unmet palliative care needs among emergency department patients and their caregivers.
They then put a plan in place at Beth Israel to remedy the gaps:
- Emergency physicians, nurses and social workers received training to provide better assistance to patients and families.
- A rapid screening process was implemented for social workers to identify patients with unmet needs and offer them palliative care interventions and hospice referrals, if necessary.
The team also identified palliative care "champions" to undertake advanced palliative care training. By the end of 2007, one-half of all palliative care consultation requests at Beth Israel originated from the emergency department.
Among additional findings:
- Precisely-targeted palliative care education in the emergency department is vital.
- The "champions" role is crucial to ensure superior palliative care.
physicians often serve as mediators between the patient's primary care
provider and hospital-based palliative care services.