Hollywood, FL—Early intervention utilizing a team approach is important to successful palliative care, agreed a multidisciplinary panel convened at the National Comprehensive Cancer Network (NCCN) 21st Annual Conference.
The multidisciplinary panel offered insight into the value of palliative care in the cancer care continuum, emphasizing the importance of open, continuous dialogue.
The transition from active treatment to palliative care can be challenging, as patients may misperceive palliative care as "giving up," the panel noted, and palliative care planning is difficult to achieve in the typical time allotted to appointments.
The roundtable opened with a personal anecdote by Shirin Malekpour, PhD, Family Member Advocate, University of Wisconsin-Madison, who described her mother's experience with palliative care after being diagnosed with stage III ovarian cancer. "Her medical team was underprepared for our needs in palliative care issues," she said. "We were never offered palliative care or any of the other resources but chemotherapy…here's another surgery, and so forth."
If not for her husband, who worked as a hematologist at the same hospital and knew of the resources available, palliative care would have gone unnoticed. Through this avenue, Dr Malekpour was able to connect with Toby C. Campbell, MD, MSCI, and his team at the University of Wisconsin Carbone Cancer Center, who worked with Dr Malekpour's family to identify her mother's priorities and end-of-life values. (Dr Campbell served as the moderator of the NCCN panel.)
The Practice of Palliative Care
Dr Campbell advised that palliative care be practiced on 3 levels:
- Primary—the type provided by clinicians who do not often practice palliative care, such as primary care providers
- Secondary—the routine circumstances in treating seriously ill patients; this type is integral to everyday practice in oncology
- Tertiary—referral to palliative care services.
Sophia Smith, PhD, MSW, Associate Professor of Nursing at Duke University, Durham, NC, described work at the Duke Cancer Institute around the issue of palliative care. Duke is developing and testing a program called Four Conversations. "It's an educational curriculum around shared decision making," she said. A 2-year study of the program is being funded by NCCN and Pfizer, Inc.
The 4 conversations are between the patient and provider, the patient and his/her loved ones, the patient and spirit, and the patient and him/herself. The program provides online content and offers group-facilitated meetings led by a social worker who is trained in the curriculum. "Patients are able to get together with their peers in a confidential online format," said Dr Smith. The program has evolved from a 1-on-1 format to an online format to make it more accessible and cost-effective. The Four Conversations program was developed specifically for patients with metastatic breast cancer who are receiving end-of-life care, with the purpose of maximizing quality of life and improving relationships with providers, family members, and loved ones. As part of the program, patients are taught mind–body exercises and relaxation training. They are also encouraged to complete advance directives.
"We found that only 15% of our patients who died within the past 2 years had documented directives," she said.
Integrating Palliative Care
A barrier to palliative care planning is a current shortage of palliative care specialists, as clinics are only now building palliative care programs. The traditional model of referral "hasn't worked particularly well," said Dr Campbell, with no-show rates of about 50%, making scheduling difficult. "The next move has been toward integrated, or embedded, palliative care," which places palliative care providers with oncology providers, he said. Home-based palliative care may be the next generation of palliative care, he believes.
"The team approach to [palliative] care is not a substitution, it's an addition" to care already being provided in a clinic, said Maria Dans, MD, Director of Palliative Care Services at the Siteman Cancer Center at Barnes-Jewish Hospital, St. Louis, MO.
Whereas oncologists talk about physical symptoms, palliative care providers tend to talk about emotional and psychological symptoms, issues that may be considered part of advanced care planning, said Dr Campbell. "You can reassure yourselves that your patients won't be spending time going over the same stuff that they've already been over," he said.
Campbell T. Palliative care: providing comfort from a patient and provider perspective. Presented at: National Comprehensive Cancer Network 21st Annual Conference; March 31-April 2, 2016; Hollywood, FL.