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The Black Box: Early Palliative Care in Metastatic NSCLC

22:04 EST 8 Nov 2019 | GRACE
Stephanie Harman, MD, GRACE Faculty
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In 2010, the world of lung cancer, and cancer in general, was abuzz with an intervention that improved quality of life and mood, and extended survival in patients with metastatic NSCLC. It was not a new chemotherapy or molecular biological agent. It was “early palliative care.” The original New England Journal of Medicine article several months ago were covered by both Dr. West (here) and Dr. Ramchandran (here). A group from Massachusetts General Hospital (Harvard system), led by Jennifer Temel, conducted the study.

What exactly is “early palliative care”? What exactly was happening in those visits? Could it be replicated? I’m a palliative care doctor, and I’ve been trying to figure this out myself.

In a separate article earlier this year, Jennifer Temel (a thoracic oncologist) and her colleagues took a closer look at what was happening in those visits. In general, they noted that palliative care consultation teams provide support through a number of ways, including symptom management, decision-making, education regarding illness, coping (for both patients and families), and planning ahead. In their article “Components of Early Outpatient Palliative Care Consultation in Patients with Metastatic Nonsmall Cell Lung Cancer”, they found that out of all the services that palliative care consultation provides, there were three particular areas that were emphasized in these outpatient visits: symptom management, patient and family coping, and understanding of illness. They also found that for those patients who reported a lower quality of life, the palliative care clinicians spent more time on symptom management during their visits. The clinicians did not know about any of the scores the patients reported.

On the surface, this makes some sense, particularly in thinking about improved quality of life and mood. The outcome of longer survival with palliative care is not as simple to explain. Indulge me here, as I go through a thought experiment with each of these content areas–symptom management, coping, and illness understanding—and seeing how they could lead to increased survival.

Imagine having pain under better control: one would be more mobile and more functional. One can imagine that if a patient was having a lot of troublesome symptoms, these may be a barrier to continuing a particular therapy. For example, if a patient was receiving chemotherapy but was so miserable from symptoms they wanted to stop—maybe not even side effects directly of the chemotherapy, but other symptoms (pain, fatigue, etc.). Aggressive symptom management may then enable a patient to continue their therapy.

In considering patient and family coping, I can imagine that if coping could be strengthened, this may lead to lower stress. There have been some studies on metastatic breast cancer patients in support groups and some survival benefit associated (as compared to similar patients not in a support group).

Illness understanding is an intriguing content area to contemplate. Why would understanding the illness better lead to longer survival? Perhaps patients may make decisions more deliberately if they have a resource like palliative care to assist them in the decision-making process.

Overall, the visits weren’t all about death and dying, a common misconception of palliative care. The bottom line? Early palliative care is still a black box, but one that has been opened! Stay tuned…

5 Responses to The Black Box: Early Palliative Care in Metastatic NSCLC

  • certain spring says:

    Thanks so much Dr Harman, this is really interesting. (The article is behind a subscription wall by the way – I wonder if there is some way of posting the downloaded text?) In the UK we have a system where palliative care kicks in early: as a stage IV patient I had an early referral to a hospice and to a specialist cancer community nurse. More than a year later, I find these links extremely useful – mainly for symptom management and staying out of hospital – and I can well believe they could bring a survival benefit. But just as it took time to accept the diagnosis, it took time to accept the idea of palliative care, which can be a frightening concept in the first instance. I was very resistant to meeting the Macmillan nurse or visiting the hospice. The patients in this study started having visits at eight weeks post-dx, which would have been too early for me. I notice that there were quite a few non-participants/refuseniks, and it would be interesting to compare the characteristics of people who opted to receive the visits with those who declined. Although I am a total convert, I wonder if the authors are a little over-optimistic in concluding that palliative care visits are “acceptable to patients who are early in their disease trajectory”.

  • Dr Harman says:

    Thank you, certainspring, for your comments. I will check with Dr. West about getting the whole article up. I wholeheartedly agree with you that it takes time to accept the idea of palliative care because of all the associations that term evokes. A few decades ago, palliative care was just a synonym for hospice. The acceptance of early palliative care goes beyond just the implementation of a new program and will ultimately require a culture and systems change for clinicians, patients and families in order to incorporate palliative care “early.” I’m planning on doing a post on this very topic (ie, why not palliative care early?).

  • certain spring says:

    I look forward to your next post, Dr Harman. It has taken me a long time to grasp that palliative care is as much about helping someone to live as helping them to die. Thank you for the work that you do.

  • bh says:

    Thank you, Dr. Harman for the timely article. My mom was diagnosed with NSCLC on Sept 6th and was having a hard time managing her symptoms, my daughter asked me to talk to a palliative care doctor and my immediate reaction was a vehement “no” as I have ignorantly always associated “palliative” with “hospice” with “less survival”. Your article made me think about the stigma wrongly attached to the word “palliative”.

  • Dr Harman says:

    Thanks, bh, for your comments. Palliative care used to be a synonym for hospice decades ago, so it is very understandable. Nowadays, I like to think of palliative care alongside oncology as a both/and rather than an either/or (to quote Dr. West!).

    And certainspring, we are unable to post the full text because it requires a subscription (copyrighting, etc)–sorry about that.

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