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2022 Top Story in Metastatic Breast Cancer: Improving Discussions of Palliative Care

Hazelgreen profile image
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Published in Oncology and Expert Opinion / Commentary · December 19, 2022

Written by Lillie D. Shockney RN, BS, MAS, HON-ONN-CG

"Palliative care intervention provides meaningful benefit in end-of-life care planning for patients with metastatic breast cancer.

We are long overdue in involving palliative care specialists in the multidisciplinary team caring for patients with metastatic breast cancer. There were several reasons for this: 1) very often, an option for palliative care is not offered to patients until the treating medical oncologist decides on transitioning the patient to hospice care because she is too ill to continue with the treatment; 2) palliative care is assumed to be only available as a part of hospice care; 3) medical oncologists avoid engaging palliative care doctors in their treatment strategy because they feel they should be able to manage the patient's "pain," whereas palliative care is not just for pain, but also for managing overall symptoms; and 4) the term "palliative care" may have a negative connotation to it; therefore, it should be changed to what it really stands for––quality of life preservation or quality of life restoration.

Numerous studies have demonstrated results similar to those of this study and have even gone a few steps further in demonstrating an improvement in the quality of life, a reduction in anxiety, a better sense of control, and support for the emotional well-being of the patients and their family members.

Palliative care should be introduced before it is even needed in order that the patient is aware of a specialist who would be comfortable talking to her about what lies ahead, who would be able to control her symptoms and side effects without using opioids, and who would be an excellent listener so that the patient would feel comfortable expressing her genuine concerns. We owe it to our patients to provide this service early on.

At the Johns Hopkins Metastatic Breast Cancer Retreats I conducted semi-annually since 2006, one question that was candidly discussed is this: "Of everything that may lie ahead, what is your greatest fear?" This question was posed to the patients in one room and to their accompanying loved ones (usually a spouse/partner or female caregiver) in another room. The first response from the patients was always the same, “fear of pain and suffering and no way to get help for it.” In the other room, the loved ones' response was this: “Watching her in pain and suffering and having no way to fix it for her.” This promptly launched me into a discussion about palliative care. The patients always said “I don’t want to think about hospice yet.” They are routinely stunned to learn that palliative care can stand on its own and should already be part of the care they are receiving. Some institutions have changed the name to “supportive care” owing to the negative connotation palliative care has. What it really is about is preserving the patient's quality of life or restoring it. Let’s make sure that every patient has a palliative care specialist on her team even before she needs that expert help."

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Bettybuckets profile image
Bettybuckets

very very helpful. Thanks for sharing!

Claireperth profile image
Claireperth

scary and sad but a good idea to get used to the idea of supportive care! I think there probably are a few of oncologists that don’t want to work with these supportive doctors and hang onto their control for many reasons!

queeneee profile image
queeneee

My onc. has recently referred me for a palliative care nurse, even though I am far from end of life. This is to discuss pain and have a relationship with a palliative care nurse ahead of time. I like this approach, it will take a while for a nurse to become free.

valentinecalico profile image
valentinecalico

Excellent points - thank you. Where I live, people use the terms palliative care and hospice 100% interchangeably. It's always in very hushed tones "so and so is in palliative care"....which to them means hospice. It drives me crazy as even the medical personnel do it. I have started using the term supportive care instead. It's something I haven't asked for yet but will - not sure what term to use with the onc but I think she will understand what I am talking about! Your comments about what patients and caregivers feared the most were so sad but also very helpful. Thanks again for bringing this up. ❤️

CTGirl1962 profile image
CTGirl1962

I am very early on with my MBC diagnosis and just saw my palliative care specialist last month. I go to Yale Smilow and it is a wonderful institution where care is managed concurrently with strategy. I’m really happy I have a palliative care specialist on my team!! Even though I plan on living without serious pain for a very, very, long time!!

I highly recommend that every patient inquire about palliative care, no matter how far along you are in your journey. If only for “peace” of mind.

mariootsi profile image
mariootsi in reply toCTGirl1962

I go to Yale Smilow too! I live in Branford. Where are you? I'm going to speak to my onc about the palliative care team!

CTGirl1962 profile image
CTGirl1962 in reply tomariootsi

I live in Middletown and go to the Guilford office. My oncologist (Dr. Silber) had assigned me a palliative care specialist without me having to ask!! At first I was a little paranoid because I’m nowhere near “the end” and am newly diagnosed (April of this year), so I didn’t understand, but I had my consultation and I understand now!! It’s pretty awesome to know I have someone in my back pocket who can help me with pain management, no matter how minor my pain may be.

Happy New Year!! May 2023 bless us all!! 💗

mariootsi profile image
mariootsi in reply toCTGirl1962

I started originally at New Haven Smilow, but my onc Dr Mougalian now sees patients in Guilford on Wednesdays and Mondays in New Haven. I started getting appointments in Guilford. It's easier than the chaos and parking issues in the New Haven facility.

mariootsi profile image
mariootsi in reply tomariootsi

Happy New Year!

CTGirl1962 profile image
CTGirl1962 in reply tomariootsi

Happy New Year!! I’m celebrating on my couch! 🤣🤣🙏🏻💗

CTGirl1962 profile image
CTGirl1962 in reply tomariootsi

Yes! I prefer Guilford!! Mine sees me on Thursday’s. I don’t like going to New Haven. I only go there for my scans. I went there years ago (2011-2018) the first time around this cancer journey. I had all my chemo and radiation in Florida and came back here to live in 2011. I had my Herceptin infusions in New Haven. I like my little back roads trip every month. Clears my head!! 💗

mariootsi profile image
mariootsi in reply toCTGirl1962

I came back here from St.Petersburg Fl when I found out I had cancer the first time in 2013. Went to New Haven. Went into remission in 2014. Found out I had mbc in 2018. Continued in New Haven til my onc offered appointments in Guilford. Spending New Years eve on my couch too!

kokopelli2017 profile image
kokopelli2017

thank you for posting this Cindy!

my previous oncologist of 5 years retired this past June. at my very first appt with my new onc....she referred me to palliative care....which is indeed called 'supportive care' where I go. that name is a better description of the services they provide.

my team consists of an NP, a social services rep, and a dietician. supportive care has taken over prescribing my opiod pain meds. in addition, I am being referred to physical therapy among other ideas. I think the biggest benefit is that of 'time'. supportive care listens to me and gives me time to discuss.....time that my oncologist does not have to give me. we are only allowed 15 minutes per appt with oncologist and that goes by very quickly. I see supportive care once per month as opposed to my oncologist whom I see every three to 4 months. I highly recommend.

happy new year🎉to all....

carole💛

Hazelgreen profile image
Hazelgreen in reply tokokopelli2017

Thanks, Carole, for sharing your personal experience! It seems we all need a supportive care person in "our journey".

kokopelli2017 profile image
kokopelli2017

👍❤️

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