Patients with advanced cancer should see a dedicated palliative care team composed of a doctor, advanced practice nurse, social worker and chaplain starting early in their diagnosis, according to guidelines issued by the American Society of Clinical Oncology (ASCO), says the Johns Hopkins doctor who is the senior author.
These guidelines, say Thomas J. Smith, M.D., professor of oncology and the Harry J. Duffey Family Professor of Palliative Medicine at the Johns Hopkins University School of Medicine and Kimmel Cancer Center, got their start after a 2010 study published in the New England Journal of Medicine. That study followed 151 patients with metastatic non-small cell lung cancer. Roughly half received the usual care for this disease, and half received the usual care plus regular care from a multidisciplinary palliative care team starting by eight weeks after diagnosis. The study authors reported that, compared to those in the usual care group, those in the palliative care group had about half the rate of depression and anxiety, a better understanding of their prognosis and better symptom control, plus they tended to live longer and used fewer medical resources.
Based on these findings and a growing number of other studies with similar results for other types of cancers, ASCO published provisional recommendations in 2012 suggesting that patients with advanced cancers should receive similar palliative care. However, says Smith, with the number of strong studies with similar findings now totaling more than a dozen, he and other members of an expert team — including cancer doctors, nurses, social workers, researchers and patient advocates — came together to develop a set of guidelines that can help shape how medicine is practiced across the country.
Smith explains that evidence from these previous studies shaped the new guidelines. These call for advanced cancer patients to be cared for not only by their oncologists and primary care physicians but also by a team that includes a palliative medicine doctor, who is specially trained to help patients understand their prognosis and treatment options; an advanced care nurse, such as a nurse practitioner, who can help patients and their families manage symptoms and other medical concerns; a social worker, who can counsel patients and their families on adapting to a serious illness and work on advanced planning, such as developing a health care directive, appointing a durable power of attorney or planning a hospice visit; and a chaplain, who can help provide spiritual care or find meaning at the end of life.
“Each member contributes something important,” Smith says.
Because previous studies suggested that palliative care is most efficacious when started early, he adds, the guidelines call for a patient’s first visit with this team to be less than eight weeks after diagnosis.
And, the benefits of palliative care are not just for people who might die of their disease. Even bone marrow transplant patients and their families benefit.
Many oncologists aim to provide these services through their offices, Smith explains. However, with the bulk of their time spent simply managing patients’ oncology treatments, the palliative care that many patients need falls through the cracks.
Currently, he says, many hospitals lack the resources to meet these guidelines — palliative medicine is a relatively new specialty, thus the ranks of dedicated practitioners remain small — but these strong recommendations, made with a wealth of research showing numerous benefits to patients, will encourage hospitals to build teams. “We recognize that not everyone has access yet to high quality palliative care,” Smith says, “but we should be addressing that and working on it.”
And ask your Johns Hopkins oncologist if you can see the palliative care team.