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Including Palliative Care as Part of Your Treatment — from the Time of Diagnosis

Right after my FBC diagnosis (f-bomb breast cancer for new readers), my husband and I had an information gathering week. After a series of diagnostic tests to determine the extent of the disease, we had a series of meetings to interview doctors to determine who would become a part of my/our health care team.

One big misnomer in our culture is that doctors (solely) develop a patient’s plan of care. No. No. No. This could not be farther from the truth! Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.

After the testing was complete, we had meetings and interviews with the following doctors:

  • Two surgical oncologists (surgeons who specialize in breast cancer)
  • Three medical oncologists (doctors who specialize in using medications to treat cancer)
  • Two radiation oncologists (doctors who specialize in radiation of cancer)
  • Two plastic surgeons (doctors who specialize in reconstruction after a mastectomy)
  • One palliative care physician (doctor who specializes in pain management)

Whoa. Whoa. Whoa. Are you wondering, “Why palliative care?” Most people hear the phrase “palliative care” and think “buy the plot… she must be dying.”

We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief. If you take only ONE thing from this blog post (though I hope that you take more!), please learn that palliative literally means the relief of pain. This is such a pervasively misunderstood concept in our culture, even in health care. Don’t even get me started.

Well, I already got myself started, so let me tell you that as a nurse and now a patient, I am all too familiar with the fact that surgeons and oncologists are not experts in pain management, despite inflicting a great amount of pain on their patients, which is quite an oxymoron if you ask me. But it’s the truth. The silver lining is that there is an area of specialty focused on relieving pain and symptoms and it’s called… palliative care!

In addition to relieving the pain, symptoms, and stress of ANY serious illness, including FBC, palliative care strives to prevent or treat as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and spiritual problems related to the disease. The palliative care team (comprised of doctors, nurses, social workers, nutritionists, chaplains, volunteers, and even music therapists) works in partnership with the primary doctor. It’s a collaborative, team-oriented process to ensure that YOU, the patient, are cared for from every possible perspective.

Hellooooooooooo?  Who WOULDN’T have palliative care as part of their health care team?

Incorporating palliative care into a patient’s care from the time of a diagnosis is deeply important to me because I have witnessed the benefits of palliative care as a nurse and experienced the benefits of palliative care as a patient. Consequently, I want every person who has to go through the wretched treatment for this disease to have access to the benefits of palliative care.

Such benefits include:

  • Pain management
  • Symptom management (e.g., fatigue, anxiety, shortness of breath, nausea, depression, and constipation)
  • Coordination of care
  • Improved quality of life

Because the side effects of the disease and its treatment can linger… and linger… and linger, cancer has the potential (likelihood?) to become a chronic issue. Speaking of which, nearly a year after my treatments are over, I still can’t remember much of anything, courtesy of chemo brain. I also still can’t feel my toes, courtesy of the chemotherapy-induced neuropathy.

The great news is that the fields of oncology and palliative care are beginning to work together more consistently from the time of a patient’s diagnosis. This has traditionally not been the case because of the assumption that palliative care is only helpful at the end of life. If your health care team is unaware of or hasn’t quite embraced this concept yet, YOU can serve both as an educator on the topic (using the information included in this post) and also as an advocate for yourself by seeking a palliative care consultation.

In fact, consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is slowly but surely becoming acknowledged as a best practice for patients.

Finally (!) it is no longer the case that palliative care is consulted only near the end of life, which is magnificent silver lining, if you ask me!

Hollye began writing as a way to discuss her journey with breast cancer. She believes that breast cancer happens within the ecosystem of family, friends, and community. Consequently, she decided to take the holistic approach and write about breast cancer with style, humor, and silver linings. Hollye writes from the uniquely candid perspective of both her personal and professional experiences. She is a pediatric and adult palliative care nurse and social worker with graduate degrees in bioethics and child development. Hollye has worked as an educator, clinician, trainer, and consultant at the City of Hope National Medical Center, the University of Chicago Children’s Hospital, the University of Chicago Pritzker School of Medicine, and Northwestern Memorial Hospital. She speaks nationally about bioethics, grief and bereavement, and a family-centered approach to facing life-threatening illnesses. You can follow her blog at The Silver Pen, email her at hollye@TheSilverPen, or follow her on Twitter @hollyejacobs.

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