Why It’s Important to Have Hard Conversations in Breast Cancer Care

CURE spoke with Kelly Grosklags of Conversations With Kelly at the Miami Breast Cancer Conference.

At the 42nd Annual Miami Breast Cancer Conference, CURE sat down with Kelly Grosklags, a Minneapolis-based clinical social worker focused on oncology psychotherapy and the founder and chief executive officer of Conversations With Kelly, an online and in-person forum dealing with mental health, grief and oncology.

Grosklags — a psychotherapist, a Philanthropic Cancer Board Member in Minneapolis and a senior advisor at Brighter Days Family Grief Center, in Eden Prairie, Minnesota — was among the presenters at this year’s Miami Breast Cancer Conference.

CURE spoke with Grosklags, who emphasized the importance of trust between patients and providers, discussed the importance of events such ss the Miami Breast Cancer Conference and more.

Can you provide an overview of your discussion and what you're really hoping that the audience takes away from the presentation?

I think a lot of conversations in breast cancer can be difficult because it's a difficult diagnosis and it's a loss. When somebody is diagnosed with cancer, there is an immediate grief that takes place, meaning life will never be the way it was prior to the diagnosis. And when people are working with their providers, one of the things that can get sidetracked is if a patient, let's say, is angry, and everybody has the right to be angry if they're dealing with something difficult. And so, one of the things we're doing at our conversation today is we're talking and doing a role play of a patient who is angry and who does not want to talk to the team about palliative care or any other kind of issues, because they feel like that might be giving up.

So, the difficult conversations don't really have to get too difficult if we have them early on, if we can establish trust with our providers and have conversations that maybe up front feel a little uncomfortable. In other words, [asking the patient,] "What are your life goals? What are some of the things that you want to see happen? What kinds of information do you want? Are you someone that likes a lot of information? Do you want limited information?"

How can oncologists effectively guide patients through shared decision making while managing any expectations they may have or fears that they're bound to have?

I think it's important for providers to know that each patient, each person, is an individual. So, what worked for your 10 o'clock appointment may not work for your 1 o'clock appointment, [even if there is the] same diagnosis, same genetic makeup, same whatever it may be. So how can they help navigate? Ask, “What kind of information do you want? How often do you want to check in about this?” And get to know really what your patient wants.

I also tell patients it's really important that you can change your mind. Maybe when you're first diagnosed, you're so overwhelmed that you don't want to have these conversations, but then later on, as time goes on and you feel more grounded or comfortable in the situation, you may want to change your answer with the doctor and say, "I want a lot more information" than maybe they wanted in the beginning.

Oncologists, obviously, are a very important part of the wellness of a patient, the treatment of breast cancer or any cancer. And how can they help navigate? It's more honestly asking questions of that patient, and then if they get to a situation they're not comfortable with, maybe it's a spiritual component, and they refer to a spiritual person, or a chaplain or a social worker, or whatever that may be.

The thing is, I don't ever want anybody on the team to ever feel like they are the sole responsibility for getting this patient through this experience. And I think we put a lot of pressure on ourselves. One of the things that's in the documentary that I talked about that is going to show tomorrow, "Dying is Not Giving Up," is … about the perfect patient syndrome and how patients show up and want to be seen as doing OK and they don't want to rock the boat. There's also the perfect provider syndrome, where we as providers can get in this space of [thinking] "I have to have all the answers. I have to be the one that fixes this. I have to do that." And I don't think that's true. I think if the oncologist can bring in the team, and the team also [including] the patient, and collectively having discussions about how to get people through difficult situations, it really is the best approach. But I will say that that oncologist absolutely has to be part of the team, and the patients will feel abandoned by their providers if they're not part of those difficult conversations.

How can clinicians initiate these hard discussions in a way that respects patients' autonomy while still providing those realistic expectations of what might come?

So, it's check-ins that are often. The mistake I see by some clinicians is that they wait too long to have conversations about, again, progression, or things that might be difficult to talk about, and the conversation can happen up when you first meet the patient. You can say to a patient "This is our goal for today, some things can change. I think we should have check-ins quite often. I think every other month, or every three months when I see you, we should go down, see how things are going, look at your labs, look at your scans, whatever that may be," and then again, asking the patient, "Is this something that you would like from me? Is this something that would help you feel more comfortable?"

Now, the other thing is, we need to have buy-in from the caregivers, from the partners, from the family, from the children, whomever that may be, because these difficult conversations may only be happening with the patient in the room, but they're going to impact lots of people. So I always say, have these conversations early and have them often. And doctors might say to me, "Well, everything's looking really good right now. It's early-stage." I said, "That's the thing. We make these conversations uncomfortable. We don't have to in healthcare." We can say, again, that "There are several ways this can go. Sometimes it may look different than we thought. I want to have really good communication with you. Is this something you want me to talk to you about? Is this something you want to know?" And again, I think it's important. I think if we save conversations that are hard for the last part, it's going to be all this anticipation and difficulty, and the patients themselves are going to feel like this is out of left field, because they haven't been having these ongoing conversations, that this could possibly be a reality.

What role should oncologists and the care team play in helping patients navigate family dynamics, particularly when family members have differing choices on the treatment decisions and prognosis?

The family and the patient are one unit of care. However, the patient is our primary concern. They're the ones that, if they're competent, so to speak, and can make decisions, we really need to listen to the patient. Family dynamics are a given, every family that has more than one person in it is going to have a dynamic, and what I find under those difficult dynamics is fear and uncertainty and possibly they don't have the information that they need.

So, we sit down, and we talk with them. We ask them, "What are you scared of? What are the things that you maybe don't understand better?" And I have had situations where families say to the patient, "You can't give up. You've got to keep going. You've got to keep going. You have to keep going with treatment." And the patient is saying to me privately, "I can't do this anymore. This isn't quality of life for me, and yet, I'm feeling a lot of pressure, and I don't want to let my family down." So that's a family conference. Then the oncologist can call a team meeting with the family and sit down and have a discussion. Always pull in multi disciplines, pull in the social worker, pull in the chaplain, pull in palliative care, whomever that may be, and approach it as more of a team effect.

But I think a lot of times, rather than telling people, it's really good to ask people like, "What do you understand?" Because this is happening to them. So, they tend to know more than we give people credit for. When the family is really struggling with prognosis and treatment, that's coming from a place of love, but we then get the family extra support, because it's not the patient's job to try to navigate and manage all of this for family. They don't have the energy, and yet, many of the patients I've worked with over the years have tried to take that on, and it's been exhausting and makes them even sicker.

So, the oncologist should ask for referrals. The oncologist can encourage the family to get support outside of the patient, and try to get support for it. But also, what's really small but profound is when we acknowledge for those families that this must be scary and not consider it as adversary, but just this must feel scary to you, and let's talk about that.

Transcript has been edited for clarity and conciseness

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