Sunday, April 28, 2019
by Abby Rosenberg (@AbbyRosenbergMD)
I didn’t want to be another “me too” story. I am becoming one, now, because I believe in the power of a collective voice.
You see, there is something terribly lonely about experiencing sexual harassment. And, there is something incredibly powerful about the quiet moment when you finally, bravely, share your story. There is something bittersweet about knowing you are not alone.
Sexual harassment in medicine is common. Over 50% of women medical students experience it before they graduate.(1) Disparities in women’s salaries, grant-funding, academic rank, and leadership opportunities are well-documented. (2-9) While sexual harassment (inappropriate and overtly sexual behavior) is often publicized only after an egregious action and corresponding court or media coverage, “gender harassment” (the broad-range of verbal and non-verbal behaviors conveying insulting, hostile, objectifying, exclusive, belittling, and/or degrading attitudes about one gender) is far more common and insidious. (1) Tolerance of both sexual and gender harassment has been the accepted “price that women pay for a career in medicine.” (10,11)
I was willing to pay this price until I experienced it within our communities of palliative care, bioethics, and humanities. When it came from the people who were supposed to model the highest standards of respect and support, it was all the more stunning, all the more painful, and all the more debilitating. Worse, as I described my own stories of sexual and gender harassment to other women across the country (both within and outside of palliative care and ethics communities), they reciprocated. Our experiences were common. Professionals in palliative care, ethics, and humanities are just as capable of gender harassment as the rest of our medical colleagues.
I and/or my peers in palliative care, ethics, and humanities have experienced all of the following. The references emphasize their commonality within our larger medical community. The reason to share these experiences here is simple: we want our women colleagues to know they are not alone.
- If you have ever been touched inappropriately, kissed, groped, or otherwise assaulted, you are not alone. (1,2,12)
- If you have been invited to talk about or participate in sexual experiences with a male superior, you are not alone. (1,2)
- If you have been physically or emotionally threatened by a male superior, you are not alone. (1,2)
- If you have been called “tasty,” “yummy,” delicious,” “an appetizer,” or any other edible derogative, you are not alone.
- If you have been told you are too attractive, too feminine, too masculine, or too ugly to be successful, you are not alone. (2,13)
- If you have been told that being a mother, single, partnered, a wife, a divorcée, or a daughter means you will not be successful in medicine, you are not alone. (2,13)
- If you have been told “you are not ready” for promotion, despite your meeting written qualifications, you are not alone. (2,13)
- If you have had to demonstrate greater academic productivity to be promoted than your male colleagues, you are not alone. (2,13,14)
- If you have worked in an environment where all or most of the leadership positions are held by men, you are not alone. (1,2,7,13,15)
- If these male leaders have known histories of sexual harassment, you are not alone. (16)
- If you have been offered teaching leadership positions rather than your asked-for executive leadership positions, you are not alone. (1,2,15)
- If you have received less salary for an otherwise identical job to a male, you are not alone. (1,2,5,9)
- If you have received less institutional support for career development than an otherwise equivalent male counterpart, you are not alone. (1-4,17)
- If you have received critical subjective feedback rather than constructive objective or positive feedback, you are not alone. (2,18,19)
- If you have been told to be “softer,” “less assertive,” “more quiet,” or “less bossy,” you are not alone. (13,20)
- If you have been called “abrasive,” “shrill,” “strident,” “pushy,” “angry,” or “aggressive,” you are not alone. (13)
- If you have felt shame because you are a victim, you are not alone. (1,21)
- If you notice that women speak several times in meetings before being recognized, whereas men speak once and are acknowledged, you are not alone. (13)
- If you notice that women speak a fraction of the time that men do in meetings, you are not alone. (22)
- If you notice that men speak over and around women, re-explain their words, or generally seek to have the last word in discussions, you are not alone. (22)
- If you have been labeled as “difficult” for trying to make change, you are not alone. (13,18,20)
- If a male colleague has loudly suggested you curtail your advocacy efforts, while multiple women quietly thank you, you are not alone. (13,23)
- If you have been told to “be more grateful,” “keep your head down,” “practice meditation,” or otherwise improve yourself in order to handle gender harassment, you are not alone. (2)
- If you have heard, “he doesn’t mean it that way,” “he is from another generation,” “he is a leader in his field,” or some other excuse to tolerate poor behavior, you are not alone. (24)
- If a male mentor has distanced himself from you because “you might accuse [him] too,” you are not alone. (25)
- If you have witnessed perpetrators receive “executive coaching” or “leadership development” opportunities to fix their behavior, while the women victims are left to wait, hope, or suffer in silence, you are not alone. (26)
- If you have felt unsupported by your colleagues, leadership, or larger institution, you are not alone. (1,26)
- If you have observed other men (and women) bystanders look the other way rather than intervene to stop gender discrimination, you are not alone. (1)
- If you have stayed silent for fear of losing your job, you are not alone. (1,10,11,26)
- If you have spoken up and experienced retaliation compromising your physical or emotional health, or your career development, you are not alone. (1,11,26,27)
- If you have chosen continued poor physical or emotional health over speaking up, you are not alone. (1,11,21,26,27)
- If you have avoided your workplace or a colleague because you feel unsafe, you are not alone. (1,11,26)
- If you have noticed your avoidance is compromising your upward mobility and opportunities, you are not alone. (1,11,26)
- If you have experienced burnout or considered leaving medicine altogether as a result of your experiences with gender harassment, you are not alone. (1,11,21,26)
- If you have felt supported by your institution because it has transparent policies such as equity report-cards, 360-degree evaluation procedures, zero tolerance of repeat offenders, alternative reporting options, protection from retaliation, and efforts to promote women leaders, you are not alone. (1,2,10,11,28)
- If you have felt grateful to men and women colleagues who stand with you, listen to you, speak for you, and champion your cause even at personal expense, you are not alone. (1,2,10,11)
- If you have been inspired by the bravery of those who share their stories and speak for change, you are not alone.
We can do better than this in palliative care. We are a community trained to see our patients and colleagues as human beings with equal value. We are the ones who listen. We are the ones who speak for the vulnerable.
I know there are myriad more experiences. To all of you who are suffering in silence, you are not alone. We are listening. We are speaking. “We, too,” are with you.
Abby R. Rosenberg, MD, MS, MA, is a pediatric oncologist, bioethicist, and palliative care physician and researcher. Her hobbies include narrative writing and, when needed, change-making.
REFERENCES
1. Sexual Harassment of Women: climate, culture, and consequences in academic sciences, engineering, and medicine. Washington, DC: National Academies of Sciences, Engineering, and Medicine; 2018.
2. Kang SK, Kaplan S. Working toward gender diversity and inclusion in medicine: myths and solutions. Lancet. 2019;393(10171):579-586.
3. Witteman HO. Gender bias in academia. Lancet. 2019;393(10173):743-744.
4. Witteman HO, Hendricks M, Straus S, Tannenbaum C. Are gender gaps due to evaluations of the applicant or the science? A natural experiment at a national funding agency. Lancet. 2019;393(10171):531-540.
5. Jena AB, Olenski AR, Blumenthal DM. Sex Differences in Physician Salary in US Public Medical Schools. JAMA Intern Med. 2016;176(9):1294-1304.
6. Jena AB, Khullar D, Ho O, Olenski AR, Blumenthal DM. Sex Differences in Academic Rank in US Medical Schools in 2014. JAMA. 2015;314(11):1149-1158.
7. Wehner MR, Nead KT, Linos K, Linos E. Plenty of moustaches but not enough women: cross sectional study of medical leaders. BMJ. 2015;351:h6311.
8. The Lancet. Feminism is for everybody. Lancet. 2019;393(10171):493.
9. Glauser W. Why are women still earning less than men in medicine? CMAJ. 2018;190(21):E664-E665. 10. Choo EK, van Dis J, Kass D. Time's Up for Medicine? Only Time Will Tell. N Engl J Med. 2018;379(17):1592-1593.
11. The Lancet. Time's up for sexual harassment in medicine. Lancet. 2018;391(10140):2576. 12. Clancy KB, Nelson RG, Rutherford JN, Hinde K. Survey of academic field experiences (SAFE): trainees report harassment and assault. PLoS One. 2014;9(7):e102172.
13. Williams JC, Phillips KW, Hall EV. Double Jeopardy? Gender Bias Against Women of Color in Science. worklifelaw.org 2015.
14. Raymond JL, Goodman MB. Funders should evaluate projects, not people. Lancet. 2019;393(10171):494-495.
15. Chisholm-Burns MA, Spivey CA, Hagemann T, Josephson MA. Women in leadership and the bewildering glass ceiling. Am J Health Syst Pharm. 2017;74(5):312-324.
16. Johnson CY, Guarino B. After outcry, Yale removes prestigious honor from professor who sezually harassed a colleague. Washington Post 2018.
17. Sege R, Nykiel-Bub L, Selk S. Sex Differences in Institutional Support for Junior Biomedical Researchers. JAMA. 2015;314(11):1175-1177.
18. Cecchi-Dimeglio P. How Gender Bias Corrupts Performance Reviews, and What to Do About It. Harvard Business Review 2017.
19. Evans J, Slaugher J, Ellis A, Rivin J. Making Jokes During a Presentation Helps Men but Hurts Women. Harvard Business Review 2019.
20. Dzau VJ, Johnson PA. Ending Sexual Harassment in Academic Medicine. N Engl J Med. 2018;379(17):1589-1591.
21. O'Neil A, Sojo V, Fileborn B, Scovelle AJ, Milner A. The #MeToo movement: an opportunity in public health? Lancet. 2018;391(10140):2587-2589.
22. Powell K. How female scientists can confront gender bias in the workplace. Nature. 2018;561(7723):421-423.
23. Berg S. 4 qualities women leaders need in medicine to succeed. AMA Wire. 2018. https: wire.ama-assn.irg/life-career/4-qualities-women-leaders-medicine-need-succeed? Accessed 10/26/2018.
24. Jagsi R. Sexual Harassment in Medicine - #MeToo. N Engl J Med. 2018;378(3):209-211.
25. Soklaridis S, Zahn C, Kuper A, Gillis D, Taylor VH, Whitehead C. Men's Fear of Mentoring in the #MeToo Era - What's at Stake for Academic Medicine? N Engl J Med. 2018;379(23):2270-2274.
26. Fnais N, Soobiah C, Chen MH, et al. Harassment and discrimination in medical training: a systematic review and meta-analysis. Acad Med. 2014;89(5):817-827.
27. Abbasi J. Sexual Harassment and Assault Associated With Poorer Midlife Health in Women. JAMA. 2019;321(3):234-236.
28. Westring AF, Speck RM, Sammel MD, et al. A culture conducive to women's academic success: development of a measure. Acad Med. 2012;87(11):1622-1631.
I didn’t want to be another “me too” story. I am becoming one, now, because I believe in the power of a collective voice.
You see, there is something terribly lonely about experiencing sexual harassment. And, there is something incredibly powerful about the quiet moment when you finally, bravely, share your story. There is something bittersweet about knowing you are not alone.
Sexual harassment in medicine is common. Over 50% of women medical students experience it before they graduate.(1) Disparities in women’s salaries, grant-funding, academic rank, and leadership opportunities are well-documented. (2-9) While sexual harassment (inappropriate and overtly sexual behavior) is often publicized only after an egregious action and corresponding court or media coverage, “gender harassment” (the broad-range of verbal and non-verbal behaviors conveying insulting, hostile, objectifying, exclusive, belittling, and/or degrading attitudes about one gender) is far more common and insidious. (1) Tolerance of both sexual and gender harassment has been the accepted “price that women pay for a career in medicine.” (10,11)
I was willing to pay this price until I experienced it within our communities of palliative care, bioethics, and humanities. When it came from the people who were supposed to model the highest standards of respect and support, it was all the more stunning, all the more painful, and all the more debilitating. Worse, as I described my own stories of sexual and gender harassment to other women across the country (both within and outside of palliative care and ethics communities), they reciprocated. Our experiences were common. Professionals in palliative care, ethics, and humanities are just as capable of gender harassment as the rest of our medical colleagues.
I and/or my peers in palliative care, ethics, and humanities have experienced all of the following. The references emphasize their commonality within our larger medical community. The reason to share these experiences here is simple: we want our women colleagues to know they are not alone.
- If you have ever been touched inappropriately, kissed, groped, or otherwise assaulted, you are not alone. (1,2,12)
- If you have been invited to talk about or participate in sexual experiences with a male superior, you are not alone. (1,2)
- If you have been physically or emotionally threatened by a male superior, you are not alone. (1,2)
- If you have been called “tasty,” “yummy,” delicious,” “an appetizer,” or any other edible derogative, you are not alone.
- If you have been told you are too attractive, too feminine, too masculine, or too ugly to be successful, you are not alone. (2,13)
- If you have been told that being a mother, single, partnered, a wife, a divorcée, or a daughter means you will not be successful in medicine, you are not alone. (2,13)
- If you have been told “you are not ready” for promotion, despite your meeting written qualifications, you are not alone. (2,13)
- If you have had to demonstrate greater academic productivity to be promoted than your male colleagues, you are not alone. (2,13,14)
- If you have worked in an environment where all or most of the leadership positions are held by men, you are not alone. (1,2,7,13,15)
- If these male leaders have known histories of sexual harassment, you are not alone. (16)
- If you have been offered teaching leadership positions rather than your asked-for executive leadership positions, you are not alone. (1,2,15)
- If you have received less salary for an otherwise identical job to a male, you are not alone. (1,2,5,9)
- If you have received less institutional support for career development than an otherwise equivalent male counterpart, you are not alone. (1-4,17)
- If you have received critical subjective feedback rather than constructive objective or positive feedback, you are not alone. (2,18,19)
- If you have been told to be “softer,” “less assertive,” “more quiet,” or “less bossy,” you are not alone. (13,20)
- If you have been called “abrasive,” “shrill,” “strident,” “pushy,” “angry,” or “aggressive,” you are not alone. (13)
- If you have felt shame because you are a victim, you are not alone. (1,21)
- If you notice that women speak several times in meetings before being recognized, whereas men speak once and are acknowledged, you are not alone. (13)
- If you notice that women speak a fraction of the time that men do in meetings, you are not alone. (22)
- If you notice that men speak over and around women, re-explain their words, or generally seek to have the last word in discussions, you are not alone. (22)
- If you have been labeled as “difficult” for trying to make change, you are not alone. (13,18,20)
- If a male colleague has loudly suggested you curtail your advocacy efforts, while multiple women quietly thank you, you are not alone. (13,23)
- If you have been told to “be more grateful,” “keep your head down,” “practice meditation,” or otherwise improve yourself in order to handle gender harassment, you are not alone. (2)
- If you have heard, “he doesn’t mean it that way,” “he is from another generation,” “he is a leader in his field,” or some other excuse to tolerate poor behavior, you are not alone. (24)
- If a male mentor has distanced himself from you because “you might accuse [him] too,” you are not alone. (25)
- If you have witnessed perpetrators receive “executive coaching” or “leadership development” opportunities to fix their behavior, while the women victims are left to wait, hope, or suffer in silence, you are not alone. (26)
- If you have felt unsupported by your colleagues, leadership, or larger institution, you are not alone. (1,26)
- If you have observed other men (and women) bystanders look the other way rather than intervene to stop gender discrimination, you are not alone. (1)
- If you have stayed silent for fear of losing your job, you are not alone. (1,10,11,26)
- If you have spoken up and experienced retaliation compromising your physical or emotional health, or your career development, you are not alone. (1,11,26,27)
- If you have chosen continued poor physical or emotional health over speaking up, you are not alone. (1,11,21,26,27)
- If you have avoided your workplace or a colleague because you feel unsafe, you are not alone. (1,11,26)
- If you have noticed your avoidance is compromising your upward mobility and opportunities, you are not alone. (1,11,26)
- If you have experienced burnout or considered leaving medicine altogether as a result of your experiences with gender harassment, you are not alone. (1,11,21,26)
- If you have felt supported by your institution because it has transparent policies such as equity report-cards, 360-degree evaluation procedures, zero tolerance of repeat offenders, alternative reporting options, protection from retaliation, and efforts to promote women leaders, you are not alone. (1,2,10,11,28)
- If you have felt grateful to men and women colleagues who stand with you, listen to you, speak for you, and champion your cause even at personal expense, you are not alone. (1,2,10,11)
- If you have been inspired by the bravery of those who share their stories and speak for change, you are not alone.
We can do better than this in palliative care. We are a community trained to see our patients and colleagues as human beings with equal value. We are the ones who listen. We are the ones who speak for the vulnerable.
I know there are myriad more experiences. To all of you who are suffering in silence, you are not alone. We are listening. We are speaking. “We, too,” are with you.
Abby R. Rosenberg, MD, MS, MA, is a pediatric oncologist, bioethicist, and palliative care physician and researcher. Her hobbies include narrative writing and, when needed, change-making.
REFERENCES
1. Sexual Harassment of Women: climate, culture, and consequences in academic sciences, engineering, and medicine. Washington, DC: National Academies of Sciences, Engineering, and Medicine; 2018.
2. Kang SK, Kaplan S. Working toward gender diversity and inclusion in medicine: myths and solutions. Lancet. 2019;393(10171):579-586.
3. Witteman HO. Gender bias in academia. Lancet. 2019;393(10173):743-744.
4. Witteman HO, Hendricks M, Straus S, Tannenbaum C. Are gender gaps due to evaluations of the applicant or the science? A natural experiment at a national funding agency. Lancet. 2019;393(10171):531-540.
5. Jena AB, Olenski AR, Blumenthal DM. Sex Differences in Physician Salary in US Public Medical Schools. JAMA Intern Med. 2016;176(9):1294-1304.
6. Jena AB, Khullar D, Ho O, Olenski AR, Blumenthal DM. Sex Differences in Academic Rank in US Medical Schools in 2014. JAMA. 2015;314(11):1149-1158.
7. Wehner MR, Nead KT, Linos K, Linos E. Plenty of moustaches but not enough women: cross sectional study of medical leaders. BMJ. 2015;351:h6311.
8. The Lancet. Feminism is for everybody. Lancet. 2019;393(10171):493.
9. Glauser W. Why are women still earning less than men in medicine? CMAJ. 2018;190(21):E664-E665. 10. Choo EK, van Dis J, Kass D. Time's Up for Medicine? Only Time Will Tell. N Engl J Med. 2018;379(17):1592-1593.
11. The Lancet. Time's up for sexual harassment in medicine. Lancet. 2018;391(10140):2576. 12. Clancy KB, Nelson RG, Rutherford JN, Hinde K. Survey of academic field experiences (SAFE): trainees report harassment and assault. PLoS One. 2014;9(7):e102172.
13. Williams JC, Phillips KW, Hall EV. Double Jeopardy? Gender Bias Against Women of Color in Science. worklifelaw.org 2015.
14. Raymond JL, Goodman MB. Funders should evaluate projects, not people. Lancet. 2019;393(10171):494-495.
15. Chisholm-Burns MA, Spivey CA, Hagemann T, Josephson MA. Women in leadership and the bewildering glass ceiling. Am J Health Syst Pharm. 2017;74(5):312-324.
16. Johnson CY, Guarino B. After outcry, Yale removes prestigious honor from professor who sezually harassed a colleague. Washington Post 2018.
17. Sege R, Nykiel-Bub L, Selk S. Sex Differences in Institutional Support for Junior Biomedical Researchers. JAMA. 2015;314(11):1175-1177.
18. Cecchi-Dimeglio P. How Gender Bias Corrupts Performance Reviews, and What to Do About It. Harvard Business Review 2017.
19. Evans J, Slaugher J, Ellis A, Rivin J. Making Jokes During a Presentation Helps Men but Hurts Women. Harvard Business Review 2019.
20. Dzau VJ, Johnson PA. Ending Sexual Harassment in Academic Medicine. N Engl J Med. 2018;379(17):1589-1591.
21. O'Neil A, Sojo V, Fileborn B, Scovelle AJ, Milner A. The #MeToo movement: an opportunity in public health? Lancet. 2018;391(10140):2587-2589.
22. Powell K. How female scientists can confront gender bias in the workplace. Nature. 2018;561(7723):421-423.
23. Berg S. 4 qualities women leaders need in medicine to succeed. AMA Wire. 2018. https: wire.ama-assn.irg/life-career/4-qualities-women-leaders-medicine-need-succeed? Accessed 10/26/2018.
24. Jagsi R. Sexual Harassment in Medicine - #MeToo. N Engl J Med. 2018;378(3):209-211.
25. Soklaridis S, Zahn C, Kuper A, Gillis D, Taylor VH, Whitehead C. Men's Fear of Mentoring in the #MeToo Era - What's at Stake for Academic Medicine? N Engl J Med. 2018;379(23):2270-2274.
26. Fnais N, Soobiah C, Chen MH, et al. Harassment and discrimination in medical training: a systematic review and meta-analysis. Acad Med. 2014;89(5):817-827.
27. Abbasi J. Sexual Harassment and Assault Associated With Poorer Midlife Health in Women. JAMA. 2019;321(3):234-236.
28. Westring AF, Speck RM, Sammel MD, et al. A culture conducive to women's academic success: development of a measure. Acad Med. 2012;87(11):1622-1631.
Sunday, April 28, 2019 by Christian Sinclair ·
Monday, April 22, 2019
By Kristin Edwards (@KristinMDCT)
I’ve been attending the Annual Assembly of Hospice and Palliative Care (AAHPM/HPNA) for nearly a decade, but this is the first year I presented a concurrent session. As I return to work, the glow from my 15 minutes of Friday morning fame fading away, I wanted to share a few thoughts for those who, might feel intimidated about submitting an abstract.
An abstract can only be accepted if it is submitted.
I spent years coming up with ideas for a presentation, but ultimately deciding they were not good enough. A trusted mentor encouraged me to submit my ideas anyway. He saw value in the process even if it meant I might get rejected. The process was an opportunity to learn what messages I wanted to share, develop the ideas fully, and receive feedback, thereby refining those messages. That said, only approximately 20% of abstracts are accepted for presentation at the AAHPM’s Assembly, and getting the rejection can sting. It is helpful, therefore, to have an alternate plan beforehand, whether it be submission to a journal, blog, or other conference, or to rework it and submit again in the future.
“I don’t have any collaborators” probably means “I haven’t reached out.”
I often limited myself because I thought I didn’t know anyone in the field with whom to collaborate, and hadn’t considered collaborating with those outside the field. Last year, when I had an idea worthy of submission, I reached out via AAHPM Connect, an online community for those in hospice and palliative medicine, and quickly found several people willing to collaborate. Multiple professional venues provide ways to find potential collaborators, such as list-serves, social media, and collegial networks.
Submitting an abstract with others helps you and your colleagues grow.
One of the most rewarding things in my daily practice is helping others grow, especially across levels of experience, disciplines, or specialties. Collaborating with others on a presentation was a powerful way to get non- PC colleagues exposed to palliative care, early-career colleagues enthusiastic about national involvement, and experienced colleagues invested in mentoring junior colleagues.
Work done in collaboration almost always turns out better.
The initial vision I had for our presentation was adequate, but it was so much better after several rounds of group discussion. Each of us brought a different perspective, skill set, and experience. Far from being limited by people you may worry are “the weakest link,” the presentation was all the more powerful thanks to the diversity of thought and contagious enthusiasm. And we had a lot of fun in the process.
You have something to offer!
Wisdom comes with experience and applied knowledge. Attendees at health care conferences include many who are primarily clinical. You do not need to conduct randomized controlled trials to have a good idea for submission. While scientific studies are critical for advancing our field, there is also value in showing how clinicians have effectively integrated research into clinical practice or created effective models for delivering care.
Presentations honor our patients and renew our compassion.
In palliative care, we learn from the experiences our patients and families generously share with us. When we present at a conference, even if we don’t discuss specific patient stories, we share what our patients have taught us. By sharing those lessons with a broader audience, we may help bring purpose to some of the suffering. We experience renewed compassion when we interact with participants after a presentation, who connect us with others who have similar experiences.
Find a mentor to guide you.
Mentors may have experience navigating implicit expectations for abstract and publication submissions. Mentors may be senior to you and can also be peers; powerful learning goes both ways. I had the great fortune to work with a mentor through the AAHPM Mentor Match program. Mentor Match is an online part of AAHPM where members can find other members willing to be mentors from specific backgrounds or in specific areas. Especially if you have a specific skill to develop, reach out to find a mentor in that area.
Drafting an abstract requires a relatively small investment of time, but comes with so many personal and professional benefits. The personal learning, professional connections, renewed enthusiasm, and growth opportunities are well worth the risk of rejection. So if you have an idea you’ve considered, think about reaching out to your community, get input from others, and take a chance to submit.
The deadline for AAHPM concurrent session abstracts for 2020 is May 1st, 2019.
Kristin Edwards, MD, FAAHPM is the medical director of Palliative Care at Yale New Haven Health - Bridgeport Hospital. Her passion is palliative care, medicine, education, and resilience. You can find her on Twitter at @KristinMDCT.
I’ve been attending the Annual Assembly of Hospice and Palliative Care (AAHPM/HPNA) for nearly a decade, but this is the first year I presented a concurrent session. As I return to work, the glow from my 15 minutes of Friday morning fame fading away, I wanted to share a few thoughts for those who, might feel intimidated about submitting an abstract.
An abstract can only be accepted if it is submitted.
I spent years coming up with ideas for a presentation, but ultimately deciding they were not good enough. A trusted mentor encouraged me to submit my ideas anyway. He saw value in the process even if it meant I might get rejected. The process was an opportunity to learn what messages I wanted to share, develop the ideas fully, and receive feedback, thereby refining those messages. That said, only approximately 20% of abstracts are accepted for presentation at the AAHPM’s Assembly, and getting the rejection can sting. It is helpful, therefore, to have an alternate plan beforehand, whether it be submission to a journal, blog, or other conference, or to rework it and submit again in the future.
“I don’t have any collaborators” probably means “I haven’t reached out.”
I often limited myself because I thought I didn’t know anyone in the field with whom to collaborate, and hadn’t considered collaborating with those outside the field. Last year, when I had an idea worthy of submission, I reached out via AAHPM Connect, an online community for those in hospice and palliative medicine, and quickly found several people willing to collaborate. Multiple professional venues provide ways to find potential collaborators, such as list-serves, social media, and collegial networks.
Submitting an abstract with others helps you and your colleagues grow.
One of the most rewarding things in my daily practice is helping others grow, especially across levels of experience, disciplines, or specialties. Collaborating with others on a presentation was a powerful way to get non- PC colleagues exposed to palliative care, early-career colleagues enthusiastic about national involvement, and experienced colleagues invested in mentoring junior colleagues.
Work done in collaboration almost always turns out better.
The initial vision I had for our presentation was adequate, but it was so much better after several rounds of group discussion. Each of us brought a different perspective, skill set, and experience. Far from being limited by people you may worry are “the weakest link,” the presentation was all the more powerful thanks to the diversity of thought and contagious enthusiasm. And we had a lot of fun in the process.
You have something to offer!
Wisdom comes with experience and applied knowledge. Attendees at health care conferences include many who are primarily clinical. You do not need to conduct randomized controlled trials to have a good idea for submission. While scientific studies are critical for advancing our field, there is also value in showing how clinicians have effectively integrated research into clinical practice or created effective models for delivering care.
Presentations honor our patients and renew our compassion.
In palliative care, we learn from the experiences our patients and families generously share with us. When we present at a conference, even if we don’t discuss specific patient stories, we share what our patients have taught us. By sharing those lessons with a broader audience, we may help bring purpose to some of the suffering. We experience renewed compassion when we interact with participants after a presentation, who connect us with others who have similar experiences.
Find a mentor to guide you.
Mentors may have experience navigating implicit expectations for abstract and publication submissions. Mentors may be senior to you and can also be peers; powerful learning goes both ways. I had the great fortune to work with a mentor through the AAHPM Mentor Match program. Mentor Match is an online part of AAHPM where members can find other members willing to be mentors from specific backgrounds or in specific areas. Especially if you have a specific skill to develop, reach out to find a mentor in that area.
Drafting an abstract requires a relatively small investment of time, but comes with so many personal and professional benefits. The personal learning, professional connections, renewed enthusiasm, and growth opportunities are well worth the risk of rejection. So if you have an idea you’ve considered, think about reaching out to your community, get input from others, and take a chance to submit.
The deadline for AAHPM concurrent session abstracts for 2020 is May 1st, 2019.
Kristin Edwards, MD, FAAHPM is the medical director of Palliative Care at Yale New Haven Health - Bridgeport Hospital. Her passion is palliative care, medicine, education, and resilience. You can find her on Twitter at @KristinMDCT.
Monday, April 22, 2019 by Pallimed Editor ·
Sunday, April 14, 2019
by Bob Arnold (@rabob)
This article isn’t going to change your practice. Why am I reviewing Braun et al.’s survey regarding oncologists’ beliefs, practices, and knowledge regarding medical marijuana use? 1. I went to a Willie Nelson concert and my clothes still reek of marijuana; 2. One of my palliative care fellows is interested in understanding Palliative Care clinicians’ educational needs regarding marijuana; 3. I visited a dispensary in Pennsylvania where I was told medical marijuana treats diseases ranging from opioid addiction to headaches to nausea and vomiting (in pregnant woman). This annoyed me and I wanted to see what other doctors thought.
First, a caveat, I have provided medical care for HIV positive patients for over 25 years and I view recreational marijuana use like recreational alcohol use, something that is a personal choice and of minimal risk. I am not sure of marijuana’s medicinal effects (I believe the data is very poor) and I think in moderation it is safe.
When Pennsylvania legalized medical marijuana, I signed up and of the roughly 25% of the patients I see in my oncology palliative care practice are referred by oncologists for medical marijuana. Everyone asks me about medical marijuana – from the administrative assistants to my colleagues and oncologists. I therefore was quite interested to learn what Braun et al. had discovered regarding oncologists’ beliefs, practices, and knowledge about therapeutic marijuana use. (1) They surveyed a nationally representative sample of oncologists including medical, gynecological, neurological, and pediatric who were involved in patient care. Radiation oncologists were excluded. They were interested in whether oncologists reported discussing medical marijuana with patients, recommended it, or felt sufficiently informed to make such recommendations. The survey also queried oncologists’ views on medical marinjuana’s comparative effectiveness for several conditions. Bivariate and multivariate analyses were performed using standard statistical techniques.
They surveyed 400 medical oncologists and had a response rate of 63%. The oncologists were predominantly white males and were equally split between being in practice less than 15 years, 15-24 years, and greater than 25 years. Interesting they didn’t tell me how many of them used marijuana recreationally or what their views were about recreational marijuana. Roughly 50% practiced in states where medical marijuana was legalized.
Despite only 50% practicing in a state where medical marijuana was legalized, 80% had discussed it with patients and 46% had recommended it to at least one patient in the last year. Only 25% felt sufficiently knowledgeable to make recommendations and 56% of those who had recommended it did not consider themselves to have sufficient knowledge to make a recommendation.
Given their lack of knowledge their views regarding medical marijuana’s effectiveness for various symptoms should be taken with a grain of salt. Regarding pain they were split a third yes, a third no, a third don’t know; regarding anorexia 60% thought it was equally or more effective than standard therapies; 45% thought it equally or more effective for anxiety. Oncologists viewed medical marijuana as lower risk than opiates for death and addiction, and comparable to opiates for paranoia and confusion.
As a study, this survey is rigorously conducted. They based the survey on semi-structured interviews with key informants and did cognitive interviews prior to finalizing the instrument. They had a highly trained group administer the survey. Their response rate was great for physicians and their sample was nationally representative. Their aims were clear, and their survey questions and analysis allowed them to answer aims.
My concerns have to do with the study implications ( here comes the personal opinion). First, should doctors make recommendations for a therapy that they report not competent to talk about? If we had good data on the effects of medical marijuana and this was just a problem of education, then the solution would be to train doctors. However, the problem is that there is NO DATA and our federal government has been unwilling to fund studies of effectiveness. (2,3) We are flying blind and not trying to shed light on the topic. Second, at least in Pennsylvania, we have a very weird system where my opinion as a doctor does not really matter. From a legal point of view, all I do is certify that the patients have a condition that the legislature approves them to receive a medical marijuana card. They then go to a dispensary where others advise the patient on dose and type of marijuana. The scientific basis of these recommendations – given the lack of data – is unclear. And dispensaries – despite prescribing medical marijuana - are not part of the healthcare system. Their records are not integrated into the health care system, they do not know the patient’s other medications, and there is little communication with certifying clinicians. Third, given the rates of medical marijuana use in states like California (4% of the population in one study; 916,000 in another report) and the overlap between medical and recreational use (3,4), one wonders if the doctors aren’t too loosely interpreting the criteria. (5)
Rather than medicalizing marijuana, why not legalize it?(6) Then patients can take it or not take it the same way they decide to have a drink and we as clinicians won’t be responsible for pretending that we know enough and that there is enough knowledge to recommend it for medicinal purposes.
So, reading this article largely made me frustrated about our national public policy and views regarding science. It also made me wonder about a number of other projects that need to be done: 1. What are Palliative Care clinician’s views about this matter?; 2. What is the use of marijuana in states where it is legal compared to states where it is only legal if prescribed by a physician?; and 3. How does Willie Nelson stay so thin (and look so healthy) given the amounts of marijuana at his concerts?
More Pallimed posts from Bob Arnold can be found here.
More Pallimed journal article reviews can be found here.
More Pallimed posts on marijuana can be found here.
Robert Arnold MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk. He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!)
References
1 Braun IM, Wright A, Petett J, Meyer FL, et al. Medical Oncologists’ Beliefs, Practices, and Knowledge Regarding Marijuana Used Therapeutically: A Nationally Representative Survey Study DOI: 10.1200/JCO.2017.76.1221 Journal of Clinical Oncology 36, no. 19 (July 1, 2018) 1957-1962.
2 Whiting PF, Wolff RF, Deshpande S, et al. Cannabinoids for Medical Use Systematic Review and Meta-analysis. JAMA. 2015;313(24):2456-2473. doi:10.1001/jama.2015.6358
3 The Pennsylvania law regarding medical marijuana includes a research arm. See http://www.goerie.com/news/20180820/state-issues-new-medical-marijuana-research-rules.
4 From https://www.statista.com/statistics/585154/us-legal-medical-marijuana-patients-state/ . Accessed Sept 26, 2018.
5 Choi NG, DiNitto DM, Marti CM. Nonmedical versus medical marijuana use about three age groups of adults: Association with mental and physical health status. Am J on Addiction. 2017: (26): 697-706
6 Interestingly on the day I wrote this, a Pennsylvania legislature introduced a bill legalizing Marijuana.
This article isn’t going to change your practice. Why am I reviewing Braun et al.’s survey regarding oncologists’ beliefs, practices, and knowledge regarding medical marijuana use? 1. I went to a Willie Nelson concert and my clothes still reek of marijuana; 2. One of my palliative care fellows is interested in understanding Palliative Care clinicians’ educational needs regarding marijuana; 3. I visited a dispensary in Pennsylvania where I was told medical marijuana treats diseases ranging from opioid addiction to headaches to nausea and vomiting (in pregnant woman). This annoyed me and I wanted to see what other doctors thought.
First, a caveat, I have provided medical care for HIV positive patients for over 25 years and I view recreational marijuana use like recreational alcohol use, something that is a personal choice and of minimal risk. I am not sure of marijuana’s medicinal effects (I believe the data is very poor) and I think in moderation it is safe.
When Pennsylvania legalized medical marijuana, I signed up and of the roughly 25% of the patients I see in my oncology palliative care practice are referred by oncologists for medical marijuana. Everyone asks me about medical marijuana – from the administrative assistants to my colleagues and oncologists. I therefore was quite interested to learn what Braun et al. had discovered regarding oncologists’ beliefs, practices, and knowledge about therapeutic marijuana use. (1) They surveyed a nationally representative sample of oncologists including medical, gynecological, neurological, and pediatric who were involved in patient care. Radiation oncologists were excluded. They were interested in whether oncologists reported discussing medical marijuana with patients, recommended it, or felt sufficiently informed to make such recommendations. The survey also queried oncologists’ views on medical marinjuana’s comparative effectiveness for several conditions. Bivariate and multivariate analyses were performed using standard statistical techniques.
They surveyed 400 medical oncologists and had a response rate of 63%. The oncologists were predominantly white males and were equally split between being in practice less than 15 years, 15-24 years, and greater than 25 years. Interesting they didn’t tell me how many of them used marijuana recreationally or what their views were about recreational marijuana. Roughly 50% practiced in states where medical marijuana was legalized.
Despite only 50% practicing in a state where medical marijuana was legalized, 80% had discussed it with patients and 46% had recommended it to at least one patient in the last year. Only 25% felt sufficiently knowledgeable to make recommendations and 56% of those who had recommended it did not consider themselves to have sufficient knowledge to make a recommendation.
Given their lack of knowledge their views regarding medical marijuana’s effectiveness for various symptoms should be taken with a grain of salt. Regarding pain they were split a third yes, a third no, a third don’t know; regarding anorexia 60% thought it was equally or more effective than standard therapies; 45% thought it equally or more effective for anxiety. Oncologists viewed medical marijuana as lower risk than opiates for death and addiction, and comparable to opiates for paranoia and confusion.
As a study, this survey is rigorously conducted. They based the survey on semi-structured interviews with key informants and did cognitive interviews prior to finalizing the instrument. They had a highly trained group administer the survey. Their response rate was great for physicians and their sample was nationally representative. Their aims were clear, and their survey questions and analysis allowed them to answer aims.
My concerns have to do with the study implications ( here comes the personal opinion). First, should doctors make recommendations for a therapy that they report not competent to talk about? If we had good data on the effects of medical marijuana and this was just a problem of education, then the solution would be to train doctors. However, the problem is that there is NO DATA and our federal government has been unwilling to fund studies of effectiveness. (2,3) We are flying blind and not trying to shed light on the topic. Second, at least in Pennsylvania, we have a very weird system where my opinion as a doctor does not really matter. From a legal point of view, all I do is certify that the patients have a condition that the legislature approves them to receive a medical marijuana card. They then go to a dispensary where others advise the patient on dose and type of marijuana. The scientific basis of these recommendations – given the lack of data – is unclear. And dispensaries – despite prescribing medical marijuana - are not part of the healthcare system. Their records are not integrated into the health care system, they do not know the patient’s other medications, and there is little communication with certifying clinicians. Third, given the rates of medical marijuana use in states like California (4% of the population in one study; 916,000 in another report) and the overlap between medical and recreational use (3,4), one wonders if the doctors aren’t too loosely interpreting the criteria. (5)
Rather than medicalizing marijuana, why not legalize it?(6) Then patients can take it or not take it the same way they decide to have a drink and we as clinicians won’t be responsible for pretending that we know enough and that there is enough knowledge to recommend it for medicinal purposes.
So, reading this article largely made me frustrated about our national public policy and views regarding science. It also made me wonder about a number of other projects that need to be done: 1. What are Palliative Care clinician’s views about this matter?; 2. What is the use of marijuana in states where it is legal compared to states where it is only legal if prescribed by a physician?; and 3. How does Willie Nelson stay so thin (and look so healthy) given the amounts of marijuana at his concerts?
More Pallimed posts from Bob Arnold can be found here.
More Pallimed journal article reviews can be found here.
More Pallimed posts on marijuana can be found here.
Robert Arnold MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk. He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!)
References
1 Braun IM, Wright A, Petett J, Meyer FL, et al. Medical Oncologists’ Beliefs, Practices, and Knowledge Regarding Marijuana Used Therapeutically: A Nationally Representative Survey Study DOI: 10.1200/JCO.2017.76.1221 Journal of Clinical Oncology 36, no. 19 (July 1, 2018) 1957-1962.
2 Whiting PF, Wolff RF, Deshpande S, et al. Cannabinoids for Medical Use Systematic Review and Meta-analysis. JAMA. 2015;313(24):2456-2473. doi:10.1001/jama.2015.6358
3 The Pennsylvania law regarding medical marijuana includes a research arm. See http://www.goerie.com/news/20180820/state-issues-new-medical-marijuana-research-rules.
4 From https://www.statista.com/statistics/585154/us-legal-medical-marijuana-patients-state/ . Accessed Sept 26, 2018.
5 Choi NG, DiNitto DM, Marti CM. Nonmedical versus medical marijuana use about three age groups of adults: Association with mental and physical health status. Am J on Addiction. 2017: (26): 697-706
6 Interestingly on the day I wrote this, a Pennsylvania legislature introduced a bill legalizing Marijuana.
Sunday, April 14, 2019 by Pallimed Editor ·
Sunday, April 7, 2019
by Christian Sinclair (@ctsinclair)
An article about end-of-life care has been making the rounds this week by Haider Warraich, MD from the online magazine Vox. Titled, "The way we die will be considered unthinkable 50 years from now", it is part of a series asking 15 experts to think about how the actions we take now will look like errors in 2070. I have seen people on Facebook and Twitter share it with quotes pulled or superlatives attached. Yet when I read it, I didn't feel the same enthusiasm; I felt frustrated.
When you read the article, key points seem to be very supportive of palliative care and hospice efforts, but on closer inspection of how our field is being presented by a cardiologist, he simply reinforces the same misconceptions of what good end-of-life care can be. I will illustrate some examples below, but first, it may help to understand the writer of this piece, Dr. Haider Warraich. He is a cardiology fellow in the heart failure program at Duke and has written a book, "Modern Death: How Medicine Changed the End of Life." He has published research on prognostication in heart failure and numerous opinion pieces in the New York Times along with other prominent online news sites. He clearly is very interested in end-of-life topics, and by his numerous pieces, he is positioned as an advocate for hospice and palliative care. Yet when I read his pieces, I am reminded of the physician or nurse who likes palliative care a lot, gets us involved early and often, but at certain times, there is a small but significant misunderstanding of what our role in a case may be. I am reminded of Stefan Friechsdorf's concept of 'pallilalia,' which he characterizes as when "repetitive absurdities are spoken about palliative care in general and the PPC program specifically, without anything being done to advance its development." I don't think Warraich is being absurd; I do find his writing to be earnest. But I am concerned his effort is potentially damaging.
Now that the scene is established, let's break down the article, and see why this messaging around palliative care is not as clear as it needs to be.
First, the anecdotes. Two anecdotes highlighting doctors ignoring patient's wishes; one from 50 years ago in which more aggressive care was given, and one recounting a story where DNR orders were placed on patients without patient or family knowledge. Both are awful stories but are not representative of health care today, and if that is being done in 2019, that should be reviewed by the hospital, the medical board and possibly courts. But the reader take-away is: "Don't trust doctors. They're sneaky and won't listen to you." Not a great starting point to a far more complex problem.
Other issues with the anecdotes are present. The 1st anecdote was published in BMJ in 1968, but refers to an overseas hospital, presumably not the United States. ¯\_(ツ)_/¯ The 2nd anecdote links to a 2004 book, instead of an original reference from...1984. THIRTY-FIVE YEARS AGO! Anecdotes from 50 years and 35 years ago do not represent the standard of care in 2019. I get the point was to tie to a historical look-back, but it just reinforces mistrust, which will come back a little bit later.
I'm totally great with the 3rd paragraph. No issues there. Good generalizable statements. But the 4th paragraph is where the messaging gets really muddled. Warraich's description of palliative care, aimed at a lay audience, is not correct and he repeats it back-to-back: "patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer."; "While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible..." When you look at established definitions of palliative care (AAHPM, CAPC, WHO, NHPCO, and others), none highlight an oppositional approach of quality vs quantity. If you are a palliative care or hospice clinician, who uses an oppositional definition for palliative care, you need to stop, because it doesn't help. Describe what we do. Do not define something by what is not done. Palliative care does not bake cakes, but no one would consider that as part of our definition. Palliative care is patient-centered care to improve quality of life by reducing suffering for patients and families. Done. Fin. And regarding the life-prolonging endorsement by Warraich, we should not be dangling that carrot, especially when the evidence is weak at best. As Drew Rosielle wrote,
In the 5th paragraph, the lumping together of pacemakers and left-ventricular assist devices (LVAD) is problematic. Deactivating defibrillators (not mentioned in the article), pacemakers and LVADs all bring up unique aspects of ethics, cardiology management, and comfort. LVAD utilization is increasing, presenting some ethical challenges that medical teams, patients and families are able to work through with good communication. Guidelines reinforce the early integration of palliative care for people eligible for LVAD therapy, and this rollout has been helpful to balance technology advances with patient-centered care.. That would be great to highlight, but Warraich does not. Instead, he cites a Sep 2017 study that shows 13% of cardiologists believe deactivating an LVAD is a form of euthanasia or physician-assisted suicide, but in the Vox piece he writes, "Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia." [Picks jaw up off floor]. When you bring up a deeply complex ethical and social issue like euthanasia in the first 5 minutes, you instantly polarize your readership. Are there times when it is important to discuss topics like requests for hastened death? Sure. But not right here, not right now. Just bringing it up in this nonchalant way, Warraich essentially weds the issue to palliative care to the reader.
OK, 6th paragraph, I'm getting a little fatigued at this point, but let's keep going! Warraich brings up the name issue - palliative care freaks people out. But as we also saw this week, palliative care is the fire department, not the fire. In citing two articles about patient and physician association of palliative care with end of life, he again inextricably ties together that palliative care *is* all about end of life, even though he ultimately argues for a concurrent model of palliative care. He also links to an article and the accompanying editorial about teams changing the name 'palliative care' to 'supportive care', and implies when people think about palliative care they have every right to think 'they will be abandoned.' To a public reader, this whole paragraph boils down to, "Many patients and doctors think palliative care only means end-of-life care. Pretty scary to think about these beliefs I am reinforcing. Then doctors change their team name so you will not be scared, even though you should be scared because I already reinforced your beliefs. Remember when I started off this piece saying doctors are sneaky?" Ugh, I feel like this battle will never end. But I am encouraged because I know this is not what I and many other palliative care teams see everyday. While this would never be published as research, there are many programs including my own that have grown year over year at a steady pace, and they never changed their name.
As the piece reaches the conclusion, Warraich undermines his own argument of palliative care involvement and cites the 2016 JAMA 'Fast-food style palliative care' study which was critically panned by Alex Smith at GeriPal. The Vox piece emphasizes that palliative care increases PTSD symptoms in family members. Warraich uses this to advocate for better discussions led by the primary teams, a noble goal that many palliative care teams are working towards in their institutions. But, if you read Alex Smith's analysis of this study on GeriPal, you can see this study was not full-contact palliative care as practiced in many hospitals today. If anything, this study should support early involvement before a crisis, more funding and collaborative management by primary teams and palliative care teams. I appreciate the shoutout for lack of a palliative care workforce to handle these situations, but if he is saying we cause PTSD, why would anyone want more palliative care clinicians?
The conclusion finishes a bit stronger except for the line, "End-of-life care is not just palliative care’s business," which again seems like an advocacy line, but instead is a step backward. This backfire effect is illustrated well in a paper by Nyhan and Reifler who looked at messaging around the religious beliefs of President Obama in 2009. The backfire effect is essentially when someone's strongly held beliefs are challenged by opposing facts, their original beliefs are paradoxically strengthened. When we deny misinformation, it reinforces the misinformation. Therefore we should focus on the positive/truthful associations. So given that I addressed a lot of misrepresentations in the Warraich Vox piece, I also plan to publish an alternate universe version in the coming days.
So my take-home points for you as a potential advocate for palliative care, hospice, or just better health care in general:
- Highlight the positive impact of our work
- Do not define what you do by telling people what you don't do
- Read articles before you share them on social media
- Don't share articles that reinforce poor representation of our field
Christian Sinclair, MD, FAAHPM, is a palliative care physician at the University of Kansas Health System and editor-in-chief for Pallimed. He hopes to one day write a book like Dr. Haider Warraich has already done, and appreciates all non-palliative care clinicians who advocate for better end-of-life care. He also recognizes that his own writings in the past, present and future may not always best represent pallative care and is open to feedback.
EXTRA BONUS CONTENT:
Multiple times in this article 'end of life care' is referenced, but it should be written as 'end-of-life care.' This second way demonstrates that 'end of life' is being used as an adjective to describe the type of care, instead of the stopping of 'life care.' That one is on the editor, not the author.
The other one being: check the URL. The URL for this article includes 'end-of-life-palliative-care' essentially linking those two as inseparable for anyone who bothers to look at the actual link. That is on the website, not the author, but if we are trying to change how palliative care is presented, small things like this add up.
An article about end-of-life care has been making the rounds this week by Haider Warraich, MD from the online magazine Vox. Titled, "The way we die will be considered unthinkable 50 years from now", it is part of a series asking 15 experts to think about how the actions we take now will look like errors in 2070. I have seen people on Facebook and Twitter share it with quotes pulled or superlatives attached. Yet when I read it, I didn't feel the same enthusiasm; I felt frustrated.
When you read the article, key points seem to be very supportive of palliative care and hospice efforts, but on closer inspection of how our field is being presented by a cardiologist, he simply reinforces the same misconceptions of what good end-of-life care can be. I will illustrate some examples below, but first, it may help to understand the writer of this piece, Dr. Haider Warraich. He is a cardiology fellow in the heart failure program at Duke and has written a book, "Modern Death: How Medicine Changed the End of Life." He has published research on prognostication in heart failure and numerous opinion pieces in the New York Times along with other prominent online news sites. He clearly is very interested in end-of-life topics, and by his numerous pieces, he is positioned as an advocate for hospice and palliative care. Yet when I read his pieces, I am reminded of the physician or nurse who likes palliative care a lot, gets us involved early and often, but at certain times, there is a small but significant misunderstanding of what our role in a case may be. I am reminded of Stefan Friechsdorf's concept of 'pallilalia,' which he characterizes as when "repetitive absurdities are spoken about palliative care in general and the PPC program specifically, without anything being done to advance its development." I don't think Warraich is being absurd; I do find his writing to be earnest. But I am concerned his effort is potentially damaging.
Now that the scene is established, let's break down the article, and see why this messaging around palliative care is not as clear as it needs to be.
First, the anecdotes. Two anecdotes highlighting doctors ignoring patient's wishes; one from 50 years ago in which more aggressive care was given, and one recounting a story where DNR orders were placed on patients without patient or family knowledge. Both are awful stories but are not representative of health care today, and if that is being done in 2019, that should be reviewed by the hospital, the medical board and possibly courts. But the reader take-away is: "Don't trust doctors. They're sneaky and won't listen to you." Not a great starting point to a far more complex problem.
Other issues with the anecdotes are present. The 1st anecdote was published in BMJ in 1968, but refers to an overseas hospital, presumably not the United States. ¯\_(ツ)_/¯ The 2nd anecdote links to a 2004 book, instead of an original reference from...1984. THIRTY-FIVE YEARS AGO! Anecdotes from 50 years and 35 years ago do not represent the standard of care in 2019. I get the point was to tie to a historical look-back, but it just reinforces mistrust, which will come back a little bit later.
I'm totally great with the 3rd paragraph. No issues there. Good generalizable statements. But the 4th paragraph is where the messaging gets really muddled. Warraich's description of palliative care, aimed at a lay audience, is not correct and he repeats it back-to-back: "patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer."; "While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible..." When you look at established definitions of palliative care (AAHPM, CAPC, WHO, NHPCO, and others), none highlight an oppositional approach of quality vs quantity. If you are a palliative care or hospice clinician, who uses an oppositional definition for palliative care, you need to stop, because it doesn't help. Describe what we do. Do not define something by what is not done. Palliative care does not bake cakes, but no one would consider that as part of our definition. Palliative care is patient-centered care to improve quality of life by reducing suffering for patients and families. Done. Fin. And regarding the life-prolonging endorsement by Warraich, we should not be dangling that carrot, especially when the evidence is weak at best. As Drew Rosielle wrote,
I think we should be satisfied with the 'helping them have better QOL part.'
In the 5th paragraph, the lumping together of pacemakers and left-ventricular assist devices (LVAD) is problematic. Deactivating defibrillators (not mentioned in the article), pacemakers and LVADs all bring up unique aspects of ethics, cardiology management, and comfort. LVAD utilization is increasing, presenting some ethical challenges that medical teams, patients and families are able to work through with good communication. Guidelines reinforce the early integration of palliative care for people eligible for LVAD therapy, and this rollout has been helpful to balance technology advances with patient-centered care.. That would be great to highlight, but Warraich does not. Instead, he cites a Sep 2017 study that shows 13% of cardiologists believe deactivating an LVAD is a form of euthanasia or physician-assisted suicide, but in the Vox piece he writes, "Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia." [Picks jaw up off floor]. When you bring up a deeply complex ethical and social issue like euthanasia in the first 5 minutes, you instantly polarize your readership. Are there times when it is important to discuss topics like requests for hastened death? Sure. But not right here, not right now. Just bringing it up in this nonchalant way, Warraich essentially weds the issue to palliative care to the reader.
OK, 6th paragraph, I'm getting a little fatigued at this point, but let's keep going! Warraich brings up the name issue - palliative care freaks people out. But as we also saw this week, palliative care is the fire department, not the fire. In citing two articles about patient and physician association of palliative care with end of life, he again inextricably ties together that palliative care *is* all about end of life, even though he ultimately argues for a concurrent model of palliative care. He also links to an article and the accompanying editorial about teams changing the name 'palliative care' to 'supportive care', and implies when people think about palliative care they have every right to think 'they will be abandoned.' To a public reader, this whole paragraph boils down to, "Many patients and doctors think palliative care only means end-of-life care. Pretty scary to think about these beliefs I am reinforcing. Then doctors change their team name so you will not be scared, even though you should be scared because I already reinforced your beliefs. Remember when I started off this piece saying doctors are sneaky?" Ugh, I feel like this battle will never end. But I am encouraged because I know this is not what I and many other palliative care teams see everyday. While this would never be published as research, there are many programs including my own that have grown year over year at a steady pace, and they never changed their name.
As the piece reaches the conclusion, Warraich undermines his own argument of palliative care involvement and cites the 2016 JAMA 'Fast-food style palliative care' study which was critically panned by Alex Smith at GeriPal. The Vox piece emphasizes that palliative care increases PTSD symptoms in family members. Warraich uses this to advocate for better discussions led by the primary teams, a noble goal that many palliative care teams are working towards in their institutions. But, if you read Alex Smith's analysis of this study on GeriPal, you can see this study was not full-contact palliative care as practiced in many hospitals today. If anything, this study should support early involvement before a crisis, more funding and collaborative management by primary teams and palliative care teams. I appreciate the shoutout for lack of a palliative care workforce to handle these situations, but if he is saying we cause PTSD, why would anyone want more palliative care clinicians?
The conclusion finishes a bit stronger except for the line, "End-of-life care is not just palliative care’s business," which again seems like an advocacy line, but instead is a step backward. This backfire effect is illustrated well in a paper by Nyhan and Reifler who looked at messaging around the religious beliefs of President Obama in 2009. The backfire effect is essentially when someone's strongly held beliefs are challenged by opposing facts, their original beliefs are paradoxically strengthened. When we deny misinformation, it reinforces the misinformation. Therefore we should focus on the positive/truthful associations. So given that I addressed a lot of misrepresentations in the Warraich Vox piece, I also plan to publish an alternate universe version in the coming days.
So my take-home points for you as a potential advocate for palliative care, hospice, or just better health care in general:
- Highlight the positive impact of our work
- Do not define what you do by telling people what you don't do
- Read articles before you share them on social media
- Don't share articles that reinforce poor representation of our field
Christian Sinclair, MD, FAAHPM, is a palliative care physician at the University of Kansas Health System and editor-in-chief for Pallimed. He hopes to one day write a book like Dr. Haider Warraich has already done, and appreciates all non-palliative care clinicians who advocate for better end-of-life care. He also recognizes that his own writings in the past, present and future may not always best represent pallative care and is open to feedback.
EXTRA BONUS CONTENT:
Multiple times in this article 'end of life care' is referenced, but it should be written as 'end-of-life care.' This second way demonstrates that 'end of life' is being used as an adjective to describe the type of care, instead of the stopping of 'life care.' That one is on the editor, not the author.
The other one being: check the URL. The URL for this article includes 'end-of-life-palliative-care' essentially linking those two as inseparable for anyone who bothers to look at the actual link. That is on the website, not the author, but if we are trying to change how palliative care is presented, small things like this add up.
Sunday, April 7, 2019 by Christian Sinclair ·
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