I’m proud to say that the palliative and end of life care committee – our first new protocol-producing committee in years – was approved in Chicago. The Board of Governors granted the group full committee status by a unanimous vote.

The palliative and end of life care committee is special. And it’s moving fast.

The committee has three multidisciplinary chairs. Dr. Mark O’Rourke is a medical oncologist. Dr. Robert Krouse is a surgical oncologist. And Dr. Marie Bakitas is an expert in oncology and palliative care nursing and research.

This trifecta has attracted a sizable SWOG following, with 84 members so far. I think they were all in the room in Chicago! They’ve developed a vision statement – “improving the delivery of palliative and end of life care for people living with advanced cancer” – and they’ve agreed on four aspirational goals:

  • Supporting palliative care that is scalable and available to low resource, underserved patients
  • Improving patient-provider communication and advance care planning
  • Creating effective palliative and end of life care models for NCORP practices
  • Addressing symptoms specific to seriously ill people living with advanced cancer

Members are already striving to meet those goals.

The committee has opened one trial, S1316, led by Dr. Krouse, which is a prospective comparative effectiveness study for malignant bowel obstruction. Another study is expected to open this month. That’s S1820, led by Dr. Virginia Sun, and is a randomized phase II trial testing the Altering Intake, Managing Symptoms Intervention (AIMS) for bowel dysfunction in rectal cancer survivors.

Two pilot studies are underway, and six study concepts are under development. They include:

  • A trial comparing three advanced cancer communication and care planning interventions
  • A trial testing a primary palliative care intervention in pancreatic cancer
  • A study of symptom management for metastatic renal cell patients
  • A study exploring ways to improve sexual intimacy for patients in palliative care
  • A study examining depression screening and treatment for patients requesting Medical-Aid-in -Dying (MAID)
  • A study testing whole cannabis extract for controlling advanced cancer symptoms

Right now, the committee is also conducting a survey on a fairly profound topic – hopefulness.

The committee has asked 1,000 SWOG members – including doctors, nurses, and patient advocates – to fill out a questionnaire measuring hopefulness called the Adult Hope Scale. Developed by Drs. Ben Corn and Dave Feldman, the scale has potential as a patient prognostic factor, a patient outcome variable, and a provider burnout indicator. The goal is to embed into a few SWOG trials tools that measure the amount of hope, and the end of life experience, of seriously ill people with advanced cancer.

If you got an email invitation, I encourage you to complete the survey. And I encourage you to support the work of the palliative and end of life committee. Like all our patients, those they serve need the very best comfort, care, and peace of mind. If you’d like to get active in the group, calls take place the third Thursday of the month at 5:00 pm EST.  Contact committee coordinator Vanessa Benavidez at vbenavidez@swog.org for call details.
 

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