Joe Contreras, MD, chair of the Institute of Pain and Palliative Medicine, explains how some common misconceptions may be hindering patients from receiving potentially outcome-improving palliative care.
Palliative care does not need to be associated with end-of-life care, explained Joe Contreras, MD, chair of the Institute of Pain and Palliative Medicine, Hackensack Meridian Health. Furthermore, considering palliative care for patients earlier in treatment may help improve overall outcomes.
For National Hospice and Palliative Care Awareness Month, Dr. Contreras spoke to Oncology Nursing News® about some common misconceptions between the 2 types of care and how oncology nurses can more effectively speak with their patients about palliative care.
Oncology Nursing News: November is National Hospice and Palliative Care Month. Why is it necessary to generate more awareness around these systems of supportive care?
Dr. Contreras: I think the most important thing is the fact that we are misunderstood as a specialty of medicine. Palliative care as a field is very misunderstood. And I think a lot of times [we are] not even looked at as a specialty of medicine. Sometimes [people] feel it's more a setting of medicine near the end of life. It's taken on a life of its own, unfortunately.
Much more tends to be thought of in line to hospice. One of my big goals in life is to dispel those myths to the best of my ability and get people to understand that if they receive palliative care with their specialty physicians, their primary care physician, they actually could have a better outcome in terms of feeling better in terms of functionally and possibly in terms of living longer. That really is what the specialty is all about: making people feel better, making people feel more functional, so that they can be with their loved ones. And therefore, perhaps even do better with their chronic and serious disease.
Could you differentiate between palliative care and hospice care and explain what separates the two?
Palliative care is a specialty of medicine. It can happen at any time in life if one is diagnosed with serious illness.
What would be some of the reasons why somebody would want to be aligned with palliative care? Because they're having physical symptoms that are dragging them down. Because emotionally, they're not well, perhaps spiritually, they're not well. These are the kinds of things that [may] improve somebody's overall quality of life, and hopefully, help them preserve their functional ability.
So, it's a specialty of medicine, and not a setting. [In comparison], hospice is a setting. Hospice is not a specialty of medicine. It is a setting that is designed to provide people quality of life when they have been diagnosed with a terminal disease.
They can also have chronic disease that has worn them down to the extent that a physician could certify that he or she probably does not think that they have more than 6 months to live. We have a question that we asked in this field, which is the ‘surprise question’ the primary care doctor or specialist could be asked: ‘Would you be surprised if your patient were to pass in the next year?’ And if the answer is no, then that patient could be considered for a hospice admission. They can no longer get aggressive treatments; they can no longer get disease modifying treatments or curative treatments. That is one thing that they have to give up. So, the focus is solely to be at home with the family and to maximize whatever time they have left. Sometimes a physician might certify they have 6 months left to live. They may live for a year. Nobody really knows exactly but if you can have impact on quality of life, then you most likely are likely to do better.
It is a Medicare benefit to be in hospice. And if you do graduate from those 6 months, as I call it, you can be recertified for hospice, but hospice is clearly not a specialty. It is a time frame. And that timeframe is defined by about 6 months before one's death.
How exactly can palliative care improve patient outcomes?
If we are successful with the pain and the nausea, and some of the symptoms that cancer patients can have, and we're successful with helping one emotionally, (because having the diagnosis of cancer is very scary and very traumatic for not only patients but for their families,) then we can get [patients] to feel better. And if we're also able to make them feel better, and they're functionally well, and we get them to do physical therapy, and we pose upon them the importance of being
functionally well, they actually can do better and possibly live longer.
We have been able to do studies that have focused on whether or not improving quality of life and emotional symptoms and spiritual symptoms could have a benefit in terms of longevity of life. In particular, one of the landmark studies in our field was done several years ago, up at Mass General Hospital in Boston, that looked at 2 groups: 1 group that was receiving normal cancer care, the other group that was receiving normal cancer care plus palliative care.1 It turned out in this study that the group that was assigned to palliative care did have better symptom management scores, did have better emotional scores, and lived three months longer. And that is a very, very powerful thing.
Some patients are under the impression that you can't receive palliative care and chemotherapy at the same time. But in reality, patients can receive palliative care and active treatment simultaneously, correct?
Correct. I can't overemphasize that. Could I just think it's important, it goes with the concept that palliative care is a specialty of medicine.
Palliative care, what makes it unique is it's really focused on the well-being of the person in the setting of serious illness. And we approach it holistically, mind, body, and spirit. So, it's not as simple as thinking, well, what is a nephrologist? Do they treat kidneys, diseases of the kidneys, or a pulmonologist, they treat diseases, the law, we treat the person as a whole, and we're interested in the wholeness being preserved in the setting of serious illness, and those people that do respond then do extremely well. And, and therefore, it's like having any other specialty on board. If you're a [patient with cancer], and you have a nephrologist on board, you may also have a palliative care specialist on board and that's okay, that doesn't stop you from continuing to receive treatment from all three specialists, you have the same rights you have the same insurance benefits, [and] it's billed like any other specialty of medicine.
[This is] very important because there's a big distinction there with hospice. Hospice is for the most part across the board benefit from most dances and certainly Medicare as far as I understand, but they do have to give up life preserving treatments, curable treatments or, or aggressive treatments, they do have to give that up and function really more just on their quality of life.
What other misconceptions might nurses encounter while discussing palliative care with their patients?
Insurance is a big one. Palliative care is covered by insurance as it is just like most specialties. You have to check with your insurance company, but most insurance companies, if not all, pay for palliative care.
And just the whole ‘palliative being an end-of-life sort of concept.’ I could see where that concept comes from, because it is what you observe, for example, if you're in the hospital with a loved one. A lot of times, unfortunately, we're getting referrals very late in the disease trajectory. So I can see how people would be confused [and] think, ‘Oh, well, it seems like palliative care is really associated with those who are dying or not doing well.’ And really, the truth is my own colleagues, my referring colleagues, sometimes feel the same way. That’s why I have spent a lot of time trying to educate my colleagues to be comfortable having the discussion with their patients that if they're noticing that their patients are symptomatic, if they're noticing that there are emotional concerns of distress, that would be a time to start thinking about palliative care if your patient is fairly sick. It’s earlier on the trajectory that we can make a difference.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678