Here is a very interesting article about the man behind Alimta, the first FDA approved drug for mesothelioma treatment. “His find became tumors’ nemesis”
This article highlights and confirms our need to continue to grow the Mesothelioma Applied Research Foundation’s Research Grant Program. Through our proven peer-review process, we are able to identify the best possible projects and disperse funds quickly and efficiently. Most recently, the fruits of our labor have become increasingly evident, as more clinical trials based on our basic lab funding are becoming available to mesothelioma patients. We are relying on your generous contributions to help us achieve the progress needed to help mesothelioma patients today. To contribute, please contact our office at (877) 363-6376 (END-MESO) or visit our donation page.
In the Sunday Times dated April 11th there were some very thought provoking responses to the article we posted last week regarding palliative care. I think this is an area of great interest to our patient population and I would like to continue the discussion. I read with great interest the responses from palliative care experts and I am convinced that so many of you would benefit from requesting that palliative care become part of your expert medical team. Fran Heller a much respected member of NY Presbyterian Hospital/Columbia University will be leading a group as well as meeting with patients and family members who would like expert advice. There will be many professionals from various disciplines on hand so please take advantage of their expertise.
Letters to the Editor, New York Times, April 10
If you haven’t read our previous blog, take a look here and also make sure to go through the comments sections.
As the time for the Symposium draws near we are all filled with a sense of excitement. We strive to build upon the momentum gained in prior years and hope that we meet the expectations of both new and seasoned Symposium attendees. This year we will have a new roundtable composed of patients and healthcare providers. In this session I hope that we can identify the strengths that allow those with mesothelioma to continue to lead full and rewarding lives. What does it take to get from the early days of diagnosis to becoming a whole and healthy person who also happens to carry the diagnosis of mesothelioma? Knowing that you have an incurable disease, do you hope for the best and prepare for the worst? Is that even possible? I hope to explore these questions with patients. I also wish to open a dialogue about what it takes to be on the other end of the exam table, as a provider, charged with delivering the news, and then providing hope with reality. It is a fine balance and the providers we have chosen to partake in this discussion are known for their compassion and honesty. I hope that by exploring the patient and provider experience we can come away with better communication skills and a better understanding of what it takes to fill either set of shoes.
Physicians’ decision-making style and psychosocial outcomes among cancer survivors. Arora NK, Weaver KE, Clayman ML, Oakley-Girvan I, Potosky AL. Patient Educ Couns. 2009 Dec;77(3):404-12. Epub 2009 Nov 4.
Patient-centered communication and prognosis discussions with cancer patients. Shields CG, Coker CJ, Poulsen SS, Doyle JM, Fiscella K, Epstein RM, Griggs JJ. Patient Educ Couns. 2009 Dec;77(3):437-42. Epub 2009 Oct 9.
Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale. Mack JW, Block SD, Nilsson M, Wright A, Trice E, Friedlander R, Paulk E, Prigerson HG. Cancer. 2009 Jul 15;115(14):3302-11
Which patients improve: characteristics increasing sensitivity to a supportive patient-practitioner relationship. Conboy LA, Macklin E, Kelley J, Kokkotou E, Lembo A, Kaptchuk T. Soc Sci Med. 2010 Feb;70(3):479-84. Epub 2009 Nov 10
Bereavement: addressing challenges faced by advanced cancer patients, their caregivers, and their physicians. Kutner JS, Kilbourn KM. Prim Care. 2009 Dec;36(4):825-44. Review.
This Sunday I was struck by the New York Times article titled “Helping Patients Face Death, She Fought to Live,” about Dr. Desiree Pardi, a leading clinician in palliative care who herself became a cancer patient faced with deciding when to stop treatment and when to focus on palliative care instead.
As a practitioner and health care advocate, I have often found myself involved with patients who are at the crossroads of ending active treatment and focusing on comfort care. This article highlights well the personal nature of such a decision. As practitioners, we can provide information and support, but it is the patient who ultimately must choose which path to follow.
I believe that in a situation in which a patient and physician find themselves at odds regarding topics of continuation or end of treatment, a mediator should be consulted to help resolve these difficult issues. In the best case scenario a medical ethicist or palliative care practitioner should be asked to help to ease the burden that both the patient and healthcare provider are struggling with. In theory, paternalistic medicine is no longer practiced and as healthcare providers, we are tasked with providing the patient with the education to make informed decisions (choices). This also implies that a patient is able to make those choices based on free will and a good understanding of the impact the choice will have on their lifespan. I imagine that as healthcare reform continues to evolve, end of life decision-making will become part of a national debate. I know that, as a medical provider, I will continue to learn from my patients and their loved ones.
Read the article by clicking here.
Patients often post on our bulletin board about their family members’ issues surrounding mesothelioma, which can differ greatly from the patient perspective. Though we remain sensitive to the needs of the patients, caregivers and bereaved, during this year’s symposium we will also address the impact of mesothelioma in families with children (defined as being under the age of 23, including those away for college). This session is meant for patients, their caregivers, and those who have lost a loved one to mesothelioma, who wish to explore the effects cancer has on the emotional well-being of children in their family.
The session will begin with a slide presentation, and an interactive discussion addressing concerns and questions. I have listed below a few select studies about the topic. You can review the most up-to-date Symposium agenda here and you can register for the Symposium here.
The 2010 International Symposium on Malignant Mesothelioma will take place June 10-12, in Washington, DC.