Panelist discuss early referral to palliative care, enduring misconceptions, culture considerations, and more at the Fall Managed Care Forum 2015.
A multi-modality care program, including psychological, social, and spiritual supports, is important in palliative and hospice care, panelists said at the Fall Managed Care Forum 2015, presented by the NAMCP Medical Directors Institute, the American Association of Integrated Healthcare Delivery Systems, and the American Association of Managed Care Nurses.
Barry Kinzbrunner, MD, chief medical officer at Vitas Healthcare, Sheryl Riley, RN, OCN, CMCN, principal at Clarion LLC, and Susan Urba, MD, medical director of the Symptom Management and Supportive Care Program at the University of Michigan Comprehensive Cancer Center, discussed early referral to palliative care, enduring misconceptions, culture considerations, and more during the “Supportive, Palliative, and Hospice Care in Oncology Panel Discussion.”
Dr Urba pointed out that palliative care is still misunderstood as end-of-life care, and to combat this misconception, care centers are changing their name from palliative care to symptom management based on studies. What doesn’t help is that not only do patients have to be educated on what a palliative care center provides, but often the referring doctor doesn’t fully understand what they do and how it’s different from just giving patients morphine.
She highlighted a landmark paper that found early referral to palliative care lead to better quality of life, less depression, and better survival by about 2 months. The early referral group also had about 50% less chemotherapy in the last 60 days of life, when it likely didn’t help much, and many patients had their advanced directives documented.
“[Palliative care] didn’t scare the patients, it didn’t make them die any sooner,” Dr Urba said.
The concept of palliative care can be confusing from the patient perspective, though, said Riley. When they answer questions from patients, they try to make them understand that it is really supportive care. She reiterated the importance of early referral since by the time the patient does get to palliative care, they find the patient’s symptoms are not really being managed.
“Proactive symptom management gives the patients a better quality of life,” she said.
However, patients can still equate palliative care as being just “one foot away form hospice.”
“Hospice, while it’ a wonderful tool, patients are very fearful of it,” she said.
It is very important, when discussing palliative care with patients, not to use the phrase “no treatment,” said Dr Kinzbrunner. Palliative care is a type of treatment, just not disease-directed treatment.
“Make sure the patient understands there are things to do and there are things to make them feel better, if nothing else,” he said.
Culture has become a huge part of palliative care, he added, and it’s all about understanding the perspective of the patient or the family. It could be their culture, their personality, their faith, or anything else. Yet, it’s also important to keep in mind that individuals within a culture can also be different, so providers should not presuppose anything based on the culture someone is from.
The best way to ensure this is all taken into consideration is as part of the initial history taking, by asking questions to find out what drives the patient and the family and what is important to them.
“In the end, it is up to them in terms of how they want their care managed,” Dr Kinzbrunner said.
As part of her conclusion, Dr Urba focused on the distress and suffering of caretakers and family, which can be overlooked during the course of care for a patient. But studies looking at and measuring this has found that it can have a huge effect and it usually all comes to light just by talking to them.
“You unearth all kinds of stress because no one was asking them, they were all talking to the patient,” she said.
In his conclusion, he reiterated that earlier is better when it comes to palliative care and the best way to ensure that is by having these conversations even at the time of diagnosis. The provider and the patient and family should go through the process thinking about “if” and not “when.” In addition, it’s easier to have the conversation at that time when there’s no crisis, because referral to hospice is considered a crisis for that patient and the family.
“‘I hope you’re going to do well, but what happens if sometime in the future things don’t go so well: what are the things you might be thinking about? Understand you can always change your mind as you go through it, but I want to get some initial idea of where you would want to be or how you want this handled, so we’re more prepared if that time ever comes,’” Dr Kinzbrunner used as an example. “It’s a much easier conversation to have then, than having it when the time is already here.”