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Prakash Chandran (Host):  The goals of cancer care depends on the diagnosis and prognosis of your cancer. Deciding on your plan for treatment takes these into account as you and your care team explore your options. We’re going to talk about it today with Susan Lohmann, the Advanced Care Planning Coordinator at Northfield Hospital and Clinics and Jodi Wieczorek, the Director and Advanced Practice Registered Nurse of the Cancer Care and Infusion Center at Northfield Hospital. This is Northfield Hospital and Clinics Health Matters podcast. I’m Prakash Chandran. Susan and Jodi, thank you so much for educating us here today. So, Jodi, let’s start with you. What exactly is the difference between a diagnosis and prognosis and why are they both important in understanding cancer?

Jodi Wieczorek, APRN, AGCNS-BC, ACHPN, OCN (Guest):  Diagnosis is a really a process. It’s a process where a healthcare provider or another professional looks at a review of symptoms of a person, looks at a physical exam and does testing and imaging to try to name the condition of the problem that a person is having. Prognosis on the other hand, is the likely natural course of a treatment or a disease or what likely is to happen to a person over time with this diagnosis. And prognosis is affected by many different things. for instance, the type of cancer in the situation that we are talking about today, the physical condition of a person, maybe their nutritional status, their living conditions and the resources that they have when they are having trouble, other serious medical conditions they have or other unknown factors. Despite many different models that doctors, and other providers have to determine prognosis; it’s actually quite difficult to be precise and most providers will tell you that. But they try to do their best estimate based on the factors that I mentioned previously.

Host:  Yeah, and I imagine that prognosis or the prognosis is something that changes or likely changes over time depending on how the course of treatment goes. Is that correct?

Jodi:  Definitely.

Host:  Okay and so another question that I wanted to ask is I’m curious about what the range of goals for cancer care are when you are evaluating something?

Jodi:  So, there are lots of different ways to make goals for cancer care. Probably the most familiar terms that people may be aware of is a goal of prevention of cancer. There are actually medications and vitamins and things that we can do to try to prevent cancer in certain populations. We can be trying to cure cancer or perhaps we are just trying to control their disease or we’re trying to control their symptoms to try to improve their life or help prevent suffering for a person. It’s really important to understand that when a provider is talking about treatment, it doesn’t always necessarily mean that they are talking about cure. So, it’s important to ask and be clear about what the purpose of treatment might be and that there are other reasons to give people cancer treatment.

Host:  So, I want to dive a little bit more into how a prognosis is made. I mean you touched upon it a little bit but maybe go into some of the specifics and then how is that information used to set a cancer care plan?

Jodi:  Prognosis really takes into account the natural course that a diagnosis or a cancer may take but it also matters what your physical condition is and your nutrition status and many other factors and some that we don’t even know. A cancer care plan should consider not only your prognosis but other things that matter to you. What are your life goals and what are your challenges? Cure for cancer might be a goal. It may not be a goal. It might be to control an incurable disease like multiple myeloma that can be controlled for many, many, many years or control of physical symptoms like pain or shortness of breath and improve how someone feels.

A personal goal might be to achieve something as a trip in the future or to keep working at your job for a period of time or maybe to be a caregiver for a spouse or a child.

Host:  Yeah, one thing that I like about this is it really feels pretty comprehensive. It’s not just only treating the cancer itself, but the goals that the individual patient might have. If someone has a recent cancer diagnosis; what kind of things should they be asking their provider or communicating with them on a day to day basis?

Jodi:  I think that’s a really important question and I think it’s a difficult one to answer. But from experience, I would say that there is so much information and so much communication at the beginning when a person gets a new diagnosis of cancer. In general, I think it’s important that you share what you are worried about and share what your questions are and not worry about how that’s perceived by the healthcare team. It really helps the healthcare team to take the best care of you, to have an open conversation and to ask the questions as they come up is actually okay. No question or concern that you have is not important.

The other thing that you should ask depends on how much you want to know. Some people want to have lots of information. They really like facts and figures and all that information really helps them. Others don’t want to really know too much, just a little bit or not much at all. Some people want really straight answers and direct information, call it to me straight doctor. And other people really don’t want that information, they just want minimal.

There are also cultural components to that as well. So, I guess in general, I would say if you could ask, you could ask questions like what is my outcome, what is my best hope, what is the worst thing that could happen and what’s most likely based on what you know about me, myself, not everyone, but me myself and my physical situation. What are my options for treatment and what will my life look like when I go through that treatment? Will I have to go to the doctor often? How expensive might this be? What are the symptoms I might experience and how severe might they be? And what is the ability of the health care team to control those symptoms for me? Those might be questions and you could even ask the provider what should I be asking you that I’m not that other people ask, might be another question to ask. And lastly, I would say ask them who can I call after I leave here if I have more questions because there’s so much it’s so hard to remember and it also can be very emotional. So, to have a contact person that you can call after the visit and follow up to answer your questions is actually a really great thing to ask.

Host:  Yeah, one of the things that you mentioned was talking to your provider about the amount of information that they share with you about your cancer. Just extending on that a little bit, I’m curious as to how you might communicate with them potentially about communicating with family members that come in and want to know about the cancer.

Jodi:  I think that it’s very important that you direct the healthcare team about your preferences and also for your family. With HIPAA and other legislation, we have to protect the privacy of people, but we can provide information if you tell us that it’s okay to do so. But always it should be directed by the person, the patient who is going through the treatment and to guide the preferences that you have. I want to know straight honest information; I want to know facts. I really don’t want to know too much but it’s okay to tell my daughter who is my healthcare decision maker, it’s okay to tell her if she asks additional questions. You can guide the care provider team with those conversations and that helps us to navigate and also protect your privacy.

Host:  So, Susan, I’d like to shift to you. I’ve heard about advanced care planning before but I’m not exactly sure what it is. So, maybe you can explain it and also talk about when someone should consider doing it.

Susan Lohmann, MSW (Guest):  Advanced care planning is really a process like a lot of things we’ve been talking about but it’s a process of thinking about and then communicating your choices for future healthcare. It involves conversations with people in your life about what you value most in life and then that conversation results in completing a healthcare directive. So, a healthcare directive really accomplishes two things. It’s a legal document where first, you identify a healthcare agent who you have chosen as having legal authority to make healthcare choices on your behalf if you would ever be unable to make decisions for yourself. So, the healthcare agent can be anyone that you trust to carry out your wishes and we do have helpful guidelines available on how to select the best person for that role.

And then secondly, the healthcare directive can document your wishes regarding your own values about quality of life and what that means and medical interventions and goals of care. The directive would only be activated if you are not able to speak for yourself or make decisions and the whole idea of it is that your voice can still be heard, and your choices can still be honored even if you are not physically able to speak or decide.

And then as far as when it is suggested for people; advanced care planning and completing healthcare directives is actually recommended for all adults of all ages and all stages of health provided they are able to think clearly. But a new diagnosis including a new cancer diagnosis can really be a great opportunity to engage in the process.

Host:  It’s interesting that we’re discussing this today. I actually recently did my healthcare directive and I found that I had to go somewhere by myself away from my daughter and my wife and really just think through my own values and what I wanted in case something like this happened so I’m curious as to what your philosophies are in terms of how someone might think about their healthcare directive and after they are done with it if it is worth sharing with their loved ones.

Susan:  That’s a great question. So, I think one way to just approach it is to know that it really is a fairly simple process, a fairly basic process but it’s not an easy process. Because these are not easy situations to reflect on and imagine. And yet, it’s so important because it’s very honest. It acknowledges that everyone of us will have an end stage to our life. It give us a chance to really reflect on what is most important to us and under what circumstances would we want or not want life prolonging interventions and then to turn those wishes into a legal document.

And honestly, I think the best way to view advanced care planning is as a gift to the people that you love. I do want to share a quote by this nationally known palliative care physician Dr. Ira Byock. I just think it says so much. He says, “I have a healthcare directive not because I have a serious illness but because I have a family.” And I love that because if you imagine a situation where a person has serious medical decisions that have to be made and they can’t speak for themselves and the healthcare team is asking the family. The difference between asking the family what they want to do and asking the family what you, the patient wants is just a huge difference in the emotional burden.

So, while it’s kind of a difficult topic and situations to imagine, it really, if you view it as a gift to your family in creating clarity and preserving your own voice; I think that helps people feel good about it.

Host:  Well I think that is the perfect place to end. I think the one thing that I take away is the importance of just being really open and communicating with your provider if you are able to because they want to be champions for you so communicate with them about the information that you want, how you want it delivered and also how you want it delivered to your loved ones. And for the healthcare directive, I love that quote. It’s really you are kind of giving relief to your family should something happen to you, because they don’t have to make that difficult decision for you. So, Susan and Jodi, I really want to thank you for educating us today.

Thank you all for checking out this episode of Northfield Hospital and Clinics Health Matters podcast. You can learn more about cancer care at Northfield Hospital and Clinics at our website at www.northfieldhospital.org. If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for topics of interest to you. Thanks and we’ll talk next time.