Jamie H. Von Roenn, MD: What is Palliative Care?
Jamie Von Roenn, MD gives an overview of palliative care. How far have we come and where do we need to go? Jamie H. Von Roenn, MD is the Co-Director of the Cancer Control Program at the Robert H. Lurie Cancer Center at Northwestern University in Chicago.
The Group Room at the 2011 American Association For Cancer Research Annual Meeting was made possible, in part, by:
VIDEO TRANSCRIPT
Selma R. Schimmel, Founder & CEO, Vital Options International:
This is Selma Schimmel at ASCO 2011 where our conversation continues with physicians about a variety of topics. But this one’s very, very special because it’s an area of medicine that we need to talk more about. And it has to do with how we confront later stage of disease, end-of-life issues, palliative care, hospice care; it’s all a part of life. We’re going to spend time with one of the leaders in the United States in this area of medicine, Dr. Jamie Von Roenn. Dr. Roenn is a medical oncologist, treats breast cancer but is also the Medical Director of Northwestern’s Memorial Hospital’s Home Hospice Programs, Professor of Medicine at Northwestern’s University Feinberg School of Medicine, Robert H. Lurie Cancer Center right here in Chicago. First a congratulations because you are the recipient of the 2011 ASCO American Cancer Society Award and lecture for your really pioneering work for palliative medicine and cancer pain management. Thank you on behalf of survivors like myself.
Jamie H. Von Roenn, MD, Co-Director, Cancer Control Program, Lurie Cancer Center:
Well, thank you for me, just the fact that I got it says that palliative care is coming forward because that lectureship was recognizing my palliative care voice in oncology and that means ASCO is willing to embrace this in the care of oncology patients.
Selma R. Schimmel:
If you would like to elaborate a little bit from your own perspective and in your own words what palliative care means to you as a clinician.
Jamie H. Von Roenn:
Well, to me it’s interdisciplinary whole-person care. All this discussion about personalized medicine is mostly talking about molecular targets. And there’s that word ‘person’ in there, and so it should be treating unique features of the cancer, but also individualizing therapy for the person, so that you take into consideration who they are, what’s important to them, who they live with. Because cancer affects the person but it affects everybody who loves them. And so palliative care addresses the physical, psycho-social, emotional, spiritual, practical – it’s really exactly what care is about in my view.
Selma R. Schimmel:
I never have quite understood why the discussion of the whole continuum of care, the circle of care, which could include end-of-life issues, why it’s not a natural part of the dialogue between patients and their doctors? And then it seems it comes up at the worst possible time, sort of like when crisis hits or bad news comes, and it’s towards the end and so you’re not prepared at all and then it’s like this crammed-in discussion instead of easing into it. And then instead of it being natural, it just feels overwhelming.
Jamie H. Von Roenn:
Yeah, so I think there’s a lot of reasons for it. One is, oncologists aren’t trained adequately in communication skills and in prognostication, honestly. I think another reason is, there’s this cure-care dichotomy where for a long time the issue was you treat the cancer and then when there’s nothing else to do you move to palliative care, when in fact this idea of palliative care should be across the spectrum. That’s what this continuum issue is about. So that for example, if I give you chemotherapy that I know is going to cause nausea and vomiting, I sure better prevent that nausea as best I can. That’s palliative care, early. For advanced disease though, what we don’t do, you’re right, is prepare people adequately. In my practice, my approach has been that as soon as someone has metastatic disease, it’s time to say ‘well we can do this, we can do this, we can do this’. But at some time the proper approach will be to focus on the comfort, and then I drop it. It’s just the seed planted. And the next time, since what the natural history is right now, with advanced solid tumors is, you get a response for some period of time, and then you need to change therapy. And the next time I say the same thing. And so then when I get to the point where really, we should focus on comfort and treating the cancer is more harm than good, I can say, ‘remember when…’ It’s not quite so scary because, in fact, after you drop those seeds people do think about it so it prepares them a little bit better.
Selma R. Schimmel:
What about the issue of family members who say to the doctor ‘please don’t say anything like that. I don’t want to diminish hope and it’s going to ruin his or her attitude or spirit’. How do you handle that delicate issue and that slippery slope with family members?
Jamie H. Von Roenn:
I start out by asking what they’re afraid of. And then depending what they say I talk to them about the fact that people know when their body is failing them. That patients know before we know that they’re in trouble, and that think of what it would be like if you were isolated and couldn’t talk to anybody and you knew you were dying because you’re protecting everyone who loves you when they think they’re protecting you, in fact. So what I usually do is say ‘let’s go in, and I’ll just ask them what they think is going on and what they understand, and I won’t tell them anything they don’t ask about’. And patients’ always ask once you open the door.
Selma R. Schimmel:
And you know, Dr. Von Roenn, the truth is that even the person who’s diagnosed with an early stage cancer, or the most treatable cancer, the moment you’re diagnosed, you ask yourself what’s going to happen – could I die, might I die? The mortality component – it never…I’m a five-time survivor. It is not… You cannot make this journey, even if you tell no one because sometimes the patient doesn’t say anything to family and friends because they don’t want to frighten them. But you can’t walk this walk without thinking about your mortality. I don’t care how early your diagnosis is, it’s a part of the natural response to the diagnosis.
Jamie H. Von Roenn:
So I think that’s true. And I’ve unfortunately had personal experience in my family, and I remember taking this family member for her first scan with metastatic disease and she turned to me and she said ‘if my scan is bad where are you going to bury me?’ And it was like a light bulb – that’s what every patient thinks every time we go to get a scan, and we have to be responsive to that and not pretend like we don’t know that.
Selma R. Schimmel:
Typical reaction response – ‘don’t worry about it, it’ll be fine. Don’t think about it, it’s probably nothing. Stay positive, stay focused’ and what that does, it completely negates the natural experience.
Dr. Jamie H. Von Roenn:
Yes, so instead we need to validate, ‘yes, this is scary, how can I help you?’
Selma R. Schimmel:
The family member, they’re scared too.
Dr. Jamie H. Von Roenn:
Of course, of course.
Selma R. Schimmel:
So ASCO has a great commitment now to this whole area of palliative care, education for physicians, de-mystifying this, creating a language – it’s never going to be totally comfortable but – a language where patients can more readily engage with their doctors, with their loved ones. Talk to us about your role in all of this.
Dr. Jamie H. Von Roenn:
I’m not one to take credit, so I think it’s many people who have worked together, both from the palliative care end and the oncology end, who went into oncology because they cared, in part about their relationships with patients. That to do oncology, you have to care about people, I think, and I think even the people who are uncomfortable with death, or comfortable with their communication skills, it isn’t because they don’t care about the people, it’s because they haven’t been taught what to do it and how to do it well.
Selma R. Schimmel:
And I also think that physicians have to know that it’s not a failure on their part.
Dr. Jamie H. Von Roenn:
I think that’s right. I also think we need to role model how important this is so that when an attending goes on rounds with a whole host of trainees you don’t just ask about the white blood cell counts, you ask about the patient’s goals, you ask about how the family’s doing, you ask about what they’re afraid of, that you recognize that who the person is experiencing cancer is the most important piece.
Selma R. Schimmel:
Thank you, Dr. Jamie Von Roenn; such a privilege to have had this time with you. Congratulations again, recipient of the 2011 ASCO ACS Award and lecture for really pioneering work in palliative medicine and cancer pain management. You’re a medical oncologist, you treat breast cancer but you’re the Medical Director of Northwestern’s Memorial Hospital’s Home Hospice Programs, and Professor of Medicine at Northwestern University’s Feinberg School of Medicine, Robert H. Lurie Cancer Center right here in Chicago.
Dr. Jamie H. Von Roenn:
Thank you for inviting me. It’s been a pleasure.
END OF VIDEO