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What Is Palliative Care and Could it Help Me?

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Published on July 10, 2020

Palliative care is for people undergoing medical treatment to improve their quality of life, and it is often confused with hospice. People with any stage of cancer who are experiencing pain or discomfort from cancer or their treatment may find relief with palliative care. How is it different than hospice and how could it help me? How can I find a doctor who specializes in this?

In this segment from our recent Answers Now program, palliative care advocate Stacey Tinianov answers all these questions and more. Tune in to hear how this movement can make a difference in your or your loved one's quality of life.

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Transcript | What Is Palliative Care and Could it Help Me?

Andrew Schorr:
Stacey, so you are a seven-year breast cancer thriver. I know you cycle and you do all these things. But you had your breasts removed, you were on some ongoing therapy, but more recently you with associates formed a group called Palliative Care for All. So normally with a specialist like Dr. Subbiah, somebody might say, "Palliative care, that's the doctor who's involved when you're in a hospice when you're like at the end of life." But that's not really what palliative care is, is it Stacey? And what do you want people to know?

Stacey Tinianov:
Basically exactly what you just said. I mean, palliative care is such a wonderful resource. Unfortunately, it's not readily available to everybody. And part of that is a resource, part of that is what facilities have available for their patients, but a huge part of the lack of availability of palliative care is there are people who don't want to have that conversation. They don't want to talk about palliative care because they're under the impression that palliative care is basically the opposite of curative care and it's end of life care, when in reality, palliative care is simply about supporting the whole individual from a quality of life perspective. And I know that we gathered here today to talk about palliative care with respect to side effects, but cancer and the... I can't swear on the program, can I?

The crap show that comes along with cancer... Palliative care can be incredibly helpful. And when we think about it, it's not just an anti-emetic, it's not just an anti-nausea, it's not just helping you get through treatment. It's everything, it's the psychosocial aspects, it's the spiritual aspect. How do we care for you and see you as a whole person as opposed to a set of symptoms or a set of side effects?

Andrew Schorr:
So, Stacey, this is complicated for people, right?

Stacey Tinianov:
This is complicated.

Andrew Schorr:
But again, here's a very well-spoken doctor, we have that sort of grin and bare it that I started talking about earlier, you have people who don't know what it's involved with. Is it their cancer care, their medicine, something else they have. So what do you want to tell people so that they see that this is their right and not just say, "Well, somebody like Dr. Subbiah or even making that extra call to the clinic is something they just don't want to do or hesitate to do." How do you propel people to get help?

Stacey Tinianov:
I think that it's a complicated answer because the thing that I think you feel the most with the cancer diagnosis is the lack of control. I don't think anybody ever says, "Hey, I can't wait to get a diagnosis of a serious illness and then fight my way through it." And there are so many things with cancer, with cancer treatments, with survivorship, with living with metastatic disease that are out of our control. I think we pick our battles and we figure out what we have the energy for. And the reality is we don't have to do this alone and if you embrace the support of an oncology team, that oncologist is laser-focused on getting rid of the cancer. And you want them to be laser-focused on getting rid of the cancer or finding a way to keep the cancer as dormant as possible. There are other specialties that look at how we keep the person as healthy as possible. We're all comfortable with the idea that there are nutritionists, people who have eleventy-hundred degrees in quality of food and help people process that food. Well, there are people that have a specialty in supportive care. And so if you're reaching out to an oncologist for what they're specializing in, then don't be afraid to reach out to another specialist to reach out in that supportive care sense.

Andrew Schorr:
Right. And Dr. Subbiah, that's what she does. So we're defining palliative care no longer as the physician who’s involved or the nurse who's involved in end of life keeping you comfortable if you will, but somebody who can help you with your quality of life as you go through your long-term, hopefully, cancer journey so you have the highest quality of life, right?

Stacey Tinianov:
If you look at the real definitions of palliative care, it has always been about supportive care. It has always been about quality of life and it has always been about the whole person, as opposed to just focusing on disease. And somewhere and probably predates my time in the cancer world, things got a little bit confused. And it might be because hospice and palliative care that there is a lot of overlap, right? Even at end of life, you want somebody to have the highest quality of life all the way up until the end. But palliative care has always been about meeting the needs of the whole person and supporting the whole person. And if we have the energy and we want to try to push for a change in definition, we can try to do that or we as advocates can just go out and really start explaining to people what palliative care is and how it might help them.

Andrew Schorr:
Well, let's leave people with a to-do. So, what do you want to say to patients who are with us on how they get access to a Dr. Subbiah or somebody at their local clinic, somebody in their town who can help them with this whole-person view while they're going through something pretty scary dealing with cancer?

Stacey Tinianov:
Yeah, I would say your first stop, especially if you're on active treatment, is your oncologist and say that you would like palliative care support. And if your oncologist looks at you and says, "But you're not nearing the end of life," then you know that your oncologist doesn't understand what palliative care is. I don't know where everybody lives, I don't know if you're treated at an academic medical center. If you are, there are palliative care resources there sometimes and Dr. Subbiah will be the first person to tell you, "Sometimes you have to push for a consult. Do not be afraid to push for a referral." And if you don't have those resources in your area, reach out to a national organization, reach out to a cancer support center, reach out to whatever your particular flavor of cancer is, advocacy group, and ask about what those resources are.

There is a Center to Advance Palliative Care called CAPC. You can log onto their website, learn a little bit more, try to find a palliative care specialist in your area. And then if you're an advocate interested in getting involved and making sure that palliative care is available for everybody, Marianne, who was supposed to be here today, but just underwent surgery, and a bunch of us have gotten together. Right now, it's only on Facebook and I realize not everybody's comfortable with Facebook, but we'll expand to create a group called Palliative Care for All. It's not an advocacy group, It's not a for-profit company, it's not even a nonprofit at this point. It's just a push by advocates to try to help get the message out that any time somebody is diagnosed with a serious illness, palliative care opportunities and resources should be part of that process.

Andrew Schorr:
Thank you so much for being with us. And you were saying just before we started the program that in your cancer care, right now you said you've been flying, you've been doing all this flying trapeze without a net and you and your doctor in discussion, would you have some new treatments? So these are things to consider. And then you'd be thinking about what are the side effects of this treatment and all that, so it's very real for you. Thank you for being with us. And during this time of the pandemic, we wish you and your family all the best.

Stacey Tinianov:
Thank you.

Andrew Schorr:
Thank you. Thanks for being with us today. I’m Andrew Schorr, remember; knowledge can be the best medicine of all.

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