Nov 01, 2022
By Melanie Farrell
Breast Cancer: Closing the Divide Between Survivorship and Palliative Care is a free webinar series and innovative offering that brings together patients, civil society, and leading multidisciplinary voices in breast cancer and palliative care from across resource settings.
The series was created through a partnership between the American Society of Clinical Oncology (ASCO), the International Association for Hospice & Palliative Care, Tómatelo a Pecho, A.C., the University of Miami Sylvester Comprehensive Cancer Center and Institute for Advanced Study of the Americas, the Caribbean Palliative Care Association, the Jamaica Cancer Care & Research Institute, and the Worldwide Hospice Palliative Care Alliance (WHPCA), showing the value of international collaboration.
This global conversation emphasizes the importance of quality of life and equitable access to palliative care; pain and symptom relief; and holistic and community-based support for patients and their families, with a focus on advanced breast cancer and long-term survival, and honors Breast Cancer Awareness Month and World Hospice & Palliative Care Day, both recognized worldwide in the month of October.
ASCO chief medical officer and executive vice president Julie Gralow, MD, FACP, FASCO, a member of the webinar’s organizing committee, shares key takeaways from the development and implementation of this series.
Why is it important to talk about palliative care?
JG: Palliative care, which focuses on maximizing quality of life and improving symptoms, is a critical topic for our patients. We talk about providing the best care for our patients, and that includes the most effective treatments, but many of them have so many side effects—palliative care is all about addressing those.
Another reason why it's important to be talking about palliative care, and a big part of why we did the webinar series, is because there is a misperception about what palliative care is, and the resultant stigma because of this misunderstanding. A lot of people equate palliative care to hospice care and end-of-life care—but they are distinct. Hospice care is focused on end of life. Palliative care is relevant whether you're on active cancer treatment, in survivor mode, or have metastatic disease.
How do you differentiate end-of-life care and palliative care? How do you see each changing now and in the future?
JG: There's a big push to use the term palliative care and supportive care synonymously, or survivorship mode as palliative care when we're dealing with something such as lymphedema in a patient with breast cancer, or nerve toxicity from a prior chemotherapy. We’re kind of blending those ideas of supportive care and palliative care together.
We’re using the term palliative to represent a lot of what we do outside of the metastatic setting. Because of this, we need to get our language down to get around some of the stigma that exists—where palliative care is inaccurately equated with not having any more options for active treatment and starting end-of-life care.
How do cancer care professionals talk about palliative care with patients who are newly diagnosed, in active treatment, or are long-term survivors?
JG: We need to have increasing focus on how we manage the physical side effects of a cancer diagnosis and treatment, as well as emotional and mental health components of living with and having had a cancer diagnosis.
For example, when I was at the University of Washington, Fred Hutch in Seattle, we kept patients in our primary breast oncology clinic for the first five years. And then, as long as they were doing well and had no evidence of disease, we would offer them a transition to our women's wellness clinic. Once there, we still followed their cancer care, but we shifted focus to overall wellness, including all other competing health risks. We promoted factors such as exercise, healthy lifestyle, sexual health, etc.—these considerations were the focus of the visit, while checking for cancer recurrence was a backup component of the visit (as opposed to when the cancer is the primary focus when you're in the oncology clinic, and then you add on the wellness piece).
There is importance in how we present palliative care. These are situations and conversations where we're really trying to get beyond the cancer diagnosis and are taking care of the overall health and well-being of our patients.
Are families and caregivers part of this conversation?
JG: Interestingly, when the National Cancer Institute in the U.S. created its office of cancer survivorship, and we were defining what a cancer survivor is, we had a lot of discussions about it. The definition was that “a patient is a cancer survivor from the day they're diagnosed through the balance of their life,” including those living with metastatic disease. Then, the discussion transitioned to whether family members are cancer survivors as well. While that's not part of the formal definition, there's a strong statement that everybody—the friends and family that are around you—is part of that cancer diagnosis, as well.
How much the patient wants to bring their family members into their treatment is up to the patient. We do have support for partners and other family members of patients with cancer who need help, and even some nonprofits that have support groups for caregivers where you are free to express your fears and your concerns without doing it directly in front of the patient.
As the patient has more and more symptoms, and as treatments run out as we're nearing end of life, it's even more critical to bring the family members and the caregivers into it. Hospice care and end-of-life care have a lot of services for caregivers and family members.
At the earlier stage we have to respect our patients’ wishes about how much they want to bring the family into it, and at a later stage, as the patient moves toward end-of-life care, it's critical that the family members be more involved in it (while still respecting the patient’s wishes).
What led to the creation of this webinar series? Who was instrumental in creating it?
JG: It just so happens that October 8 was World Hospice & Palliative Care Day, October 13 was Metastatic Breast Cancer Awareness Day, and October is Breast Cancer Awareness Month. The timing of what everyone was doing around these events led to the creation of the webinar series.
The idea for it was launched by Dr. Felicia Marie Knaul, a health economist at the University of Miami, director of the Institute for Advanced Study of the Americas, and a leader on the Lancet Commission on Global Access to Palliative Care and Pain Relief. She is also a breast cancer survivor.
I was one of her doctors when she was diagnosed with her breast cancer. I advised her, assisted her providers in Mexico, and worked with her on a collaborative plan for her treatment.
She later formed a global task force on cancer care and control in low-resource countries, which introduced me to the world of global oncology. She also formed a nonprofit in Mexico, which is where her heart always is. It’s called Tómatelo a Pecho, A.C., which translates to “take it to the chest” or “take it to the breast,” and is a support group for patients with breast cancer in Mexico.
Dr. Knaul approached me with an idea to bring together World Hospice & Palliative Care Day and Breast Cancer Awareness Month, in addition to increasing recognition for patients with metastatic breast cancer. Our goal was to bring in people from around the world, including patients with cancer, to see if we could get some momentum and dialogue going around this topic—the main question being, how are we going to optimize the lives of people with breast cancer, especially those with metastatic breast cancer, and how do we navigate the misinterpretation of what palliative means?
In addition to Dr. Knaul and myself, the organizational committee for the webinar series included:
- Dr. William (Billy) Rosa, of Memorial Sloan Kettering Cancer Center, Visiting Research Scholar at University of Miami Institute for Advanced Study of the Americas, and co-facilitator of the Global Palliative Care & Pain Relief Research Hub with Dr. Knaul
- Dr. Stephen R. Connor, of the Worldwide Hospice Palliative Care Alliance
- Dr. Lukas Radbruch, of the German Association for Palliative Medicine, and International Association for Hospice and Palliative Care
I would also like to give a special thanks to Jen Nance, Lynne Blasi, Jeannine Salamone, Claire Smith, and Thomas Dunn of ASCO for their help from an administrative standpoint.
Why was it important to bring in global voices?
JG: We aren’t going to solve the cancer problem if we have a narrow U.S. focus. By bringing in a diverse group of speakers across the four webinars that represent low-, middle-, and high-income countries across the globe, we show that there are many more similarities than there are differences in what is needed to improve the lives of patients with cancer.
Every time I do work globally, I realize the world is more similar than it is different, and that's exactly what we found as we were planning for the webinars. For example, I moderated the webinar that was more targeted at researchers and what research needs to be done in palliative care. Dr. Eve Namisango, who is based in Uganda, and Dr. Alejandro Mohar, who is from Mexico, had a conversation about the accessibility of morphine.
Dr. Namisango discussed Uganda’s model for manufacturing a liquid morphine, where the country itself manufactures it, and the potential of drug abuse and diversion is minimized because the drug is made in an liquid form. This model was fascinating for Dr. Mohar, who navigates drug treatment for patients in Mexico, where drug cartels pose a threat to drug manufacturing and administration. This is why having a global focus is important. We can learn so much from each other.
How were participants selected for the webinars? Was there an intention to choose participants from across disciplines, and from low-, middle-, and high-income countries?
JG: Our primary goal should be to achieve the best outcome for our patients no matter what our discipline is. We have participants who are palliative care specialists, oncologists, researchers, clinicians, nonprofit workers, and patients themselves. This series is not just across disciplines, but across everybody who's a stakeholder in palliative care. We come at it with different tools, experience, expertise, and abilities, but we are all really coming together with one main goal. The best way we're going to optimize the care for these patients is to all work together and to understand what each other can offer and what the patient needs.
One thing that is very clear is that the U.S. has many large academic centers with lots of resources, including palliative care experts and teams. However, in some parts of the U.S., and in other countries, that's not always available. This is what the multidisciplinary piece of the webinar series addresses.
We talk about some alternative models, such as nursing models, where we can provide palliative and supportive care and you don't need an MD or a PhD. Nurses serve the role of our expert palliative care groups in a lot of places. We also talk about the role of patient advocacy groups, where patients, who are part of nongovernmental organizations and nonprofits, can provide support to patients.
We need to look at the whole model for who can be providing and should be providing palliative care. In many places it’s not practical to assume that specialists in palliative care are readily available. This is when the multidisciplinary piece comes to play, and we can think outside the box about who can be providing this care.
While the series is focused on the breast cancer setting, what are some of the key takeaways that can be applied across disease sites?
JG: When ASCO developed its statement on palliative care (Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline), we made a strong statement that outlined its tremendous benefit. We stated that rather than palliative care being a separate entity, it should be offered early in treatment and be integrated into the whole oncology program.
Global virtual programs, such as this webinar series, allow us to see the benefit of this guideline across disease sites in all parts of the world. We can discuss the importance of integrating palliative care into treatment and find ways for it to be tailored across different settings.
Whether a patient is toward the end of life, or is in active treatment, extending the number of good days is the universal goal.
The webinar series offers sessions for researchers, clinicians, patients and advocates, and civil society. Why did you split the series for different audiences?
JG: We wanted to talk about things at different levels. What might be important to the patient might be slightly different from the researchers, or the oncologists. Everyone is welcome to view all the webinars, but we made sure that everyone could find a webinar that was applicable to them.
Ultimately, they all touched on different topics, but they all came down to similar themes.
What impact do you hope this series will have?
JG: We’ve generated awareness of all those people living with metastatic disease. Whether it's metastatic breast cancer or any cancer, they're in the community. You don't even know who they are because many of them are living a good life and have years and years and years to live. Even though you have cancer, you can still be a functioning member of society.
We’ve started the dialogue, and the goal is to continue that dialogue so we can have real impact and hopefully shape people's minds and take away some of that stigma that exists both in the metastatic setting and in the palliative care setting. No matter your discipline, disease site, or location, it’s all about making the patient feel better and living their best life.