FOR CANCER PATIENTS, palliative care provides proactive support that can markedly improve quality of life. Yet, palliative care is not always integrated into the overall care patients facing a serious illness receive.
Updated national clinical practice guidelines to improve access to quality palliative care, published in October 2018, establish criteria that have the potential to make this care more consistent. The guidelines, developed by the National Consensus Project for Quality Palliative Care, are supported by more than 80 national organizations.
Martha L. Twaddle, a palliative medicine specialist and internist who co-chaired the guidelines steering committee, leads the palliative care team at Northwestern Medicine Lake Forest Hospital in Chicago. She spoke with Cancer Today about the new guidelines and how patients can work with providers to get the supportive care that can help them better manage their illness and improve their quality of life.
Q: Why were new guidelines needed?
A: Guidelines influence the quality standards that are set, what accreditation councils will evaluate, and the educational curriculum health care providers receive. The last guidelines were published over four years ago, and the field has advanced significantly since then. The mindset of our approach to patient care has shifted. We are now looking more at who is most at risk as well as what happens during transitions from one care setting to another. We also now recognize that when you have seriously ill patients, you also need to assess their caregiver’s capacity and distress. The new guidelines support this approach.
Q: How have cancer care teams integrated palliative care?
A: Cancer centers have endorsed it and embraced it, and what is exciting is that we have evidence that early integration of palliative care in cancer improves outcomes. Better symptom management means people live better with their cancer and better weather the treatments. If palliative care was a drug, it would often be prescribed. I am embedded in clinical oncology and every day I see the benefit of this collaboration and integration for patients and their families.
Q: Given that, why is palliative care not consistently offered?
A: In part, it’s a resource issue. We currently only graduate about 125 palliative medicine specialists a year in this country. That’s because of the complexity of funding fellowships and the cap that exists on [the number of residencies available to U.S. medical students]. There have been workforce studies that show gaps in the thousands in terms of what is necessary. We also have a shortage of nurse practitioners and physician assistants, who are integral to a palliative care team.
Q: Do people continue to confuse palliative care with hospice care?
A: There is tremendous confusion. Hospice is a form of palliative care for patients with a limited prognosis of months. Palliative care is much broader than that, and anyone with a serious illness can benefit from palliative care, and the earlier the better. I have some patients I’ve seen for 13 years. This is why we’ve begun using the term supportive care. It helps us avoid these 15- to 20-minute conversations about what palliative care is and instead focus on what the patient needs and how the caregiver is doing.
Q: What can cancer patients and caregivers do to get supportive care?
A: The first thing is to ask for what they need. In some cancer centers, the care isn’t integrated, so patients don’t know it’s an option, but it is available.
Q: Why focus on the caregivers too?
A: Caregiving is very stressful. We tell patients to bring their caregivers to some if not all of their appointments so the social worker can assess how the caregiver is doing too. This is an experience of a family, however a person defines their family. The model for pediatrics is to look at the family; it’s intertwined. And that’s a better model than what we use in adult internal medicine.
Q: Are there times patients are more at risk?
A: As patients move across settings of care, like from a hospital to rehab or to home care, there are points where care can break down, especially if the patient is seriously ill and the caregiver is not supported. The whole idea of palliation is to anticipate what might happen and avoid it. When people are seriously ill, they do better physically, psychologically and spiritually knowing they have a plan in place and trained professionals anticipating how to support that plan.
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