Wednesday, May 22, 2019

In Hospice, Time is an Illusion

by Lizzy Miles (@LizzyMiles_MSW)


Lately I’ve been thinking a lot about the perception of time and how it affects our patients. Because their time is limited, their perception of time and its value can often be magnified. This is our job, but this is the patient’s LIFE. We have to remember that for our patients, they may be hyper-focused on time. How do we help them feel good about timing and the time we spend with them? We can do this by being mindful of how we use our time with them and also how we show respect for their time.

Set expectations
There is research in the ambulatory care arena that says that patient satisfaction is increased if a patient knows how long they are going to have to wait to see the practitioner. It would be reasonable to conclude that this would apply to hospice visits as well.

Intervention: Always give a time range for when you’re going to visit so you bake time in for traffic, other longer visits, etc.

So much caregiver distress could be alleviated if we just set expectations appropriately.

Interventions:
• On admission, make sure you tell patients and families the visit frequency for each discipline.

• Inform family members how your organization’s paging system works. Encourage them to let us know when they call how important their call is. Encourage them to call back if they haven’t heard back from the staff member and they feel it’s urgent.

• If you’re taking a message for another staff member, don’t make promises for others. If you know there is a potential for delay in the other staff member calling them, let the patient know.

Coordinate with all team members to address patient/caregiver crises in a timely manner
Our perception of a reasonable response time for telephone calls or visit likely differs significantly from what a patient or caregiver feels they need. We may think two or three hours is a reasonable response time to visit when a caregiver calls about a new symptom that is causing panic. The caregiver may want us there ASAP. When we can’t get there quick enough, what happens? They call the squad. Emergency room visits for normal hospice symptoms are excessive, unnecessary and can be avoided with coordination.

Sometimes, the staff member who is initially requested may be caught up with something else, and another team member may have to temporarily assist.

Here are some options to consider as well:

Intervention: Can another staff member return the call to find out what is going on?

A social worker may be able to talk to the family member and learn that the caregiver simply wants to order equipment or supplies. Even if the need is for nursing, a call from a social worker to find out what’s going on can be helpful. The need may be for a question to be answered that social work can coordinate with the primary nurse or triage. If a nursing visit is needed, the social worker can inform the family the estimated time that the nurse will be coming out. Sometimes an estimate in itself all the reassurance the family needs.

Is it a matter of the caregiver just not knowing what medicine to administer and education can be provided on the phone by a triage nurse if primary nurse is unavailable?

There is nothing worse for families to not receive a call back when their question was a simple one that could be answered with instructions and education.

Is the social worker or chaplain available for a visit? Sometimes the family wants a ‘body’ from hospice and are comforted by the present of a social worker or chaplain.

Even with patients who are actively dying, I’ve found that as a social worker there is a lot we can do at the bedside to help the family. I’ve gone out to homes in advance of the nurse only to find that family just needed to know that the symptoms are normal and reassurances that they are doing everything right. There have been times where the family has said after my social work visit that they don’t need a nurse visit anymore. To be clear, I’m not in any way doing nursing work when I’m there. What I can do is assess if patient looks comfortable and there are no signs of distress or discomfort. Sometimes just hearing an outside person’s reassurances is all a caregiver needs in that moment.

Is there another nurse on the team who has a lighter load who can visit?

A good hospice organization will have a culture where staff members help each other out.

Intervention: Lead by example with your team members and provide support if another team member is “in the weeds.”

When what you give is never enough

I have to acknowledge there are patients and caregivers who do seem “needy” with time and sometimes their needs are beyond the scope of the work that we do. Patients with COPD in particular can be highly anxious and can have emotional needs. For these patients, we do need to also set time boundaries.

Intervention: Set expectations by telling a patient at the beginning of the visit how much time you have.

There are visits where you do have a limited amount of time due to another scheduled appointment. It’s best to acknowledge this for the patient or caregiver up front so that they don’t perceive that you are bored or impatient with the visit if you frequently look at your watch or the clock.

It may be helpful to know that there is patient satisfaction research that indicates that patients perceive that a provider spent more time with them if they sat down. Do you use a chair or stool in your visits?

If needs are emotional, be sure to be engaging the entire team in coordinating visits so they are spread out across the days. Utilize your volunteers to provide extra support to emotional patients and remember that telephone calls can be an intervention as well.

Show that we value the patient’s limited time

“If I’m here and you’re here, doesn’t that make it our time?” – Jeff Spicoli

Patients who are on hospice have limited energy. Caregivers can be overwhelmed and exhausted. If they’re not up for a visit, we shouldn’t force it because we need to check a box that we did our visit. There are nuances between someone declining a visit because they don’t want to bother you and declining a visit because they don’t need or want it.

Interventions:

• Psychosocial support staff should always ask for permission to visit with patient, whether they are in a facility or in a home.

• Always ask for permission to visit with caregiver. If a caregiver says it’s not a good time because they have a hair appointment, celebrate that they are doing self-care.
Also, patients or caregivers may want a visit to end before they tell you. Always assess nonverbal behavior to see if they’re talking because they want to or if they are just being polite.

Sometimes patients or caregivers say no to a visit because we are vague with the request. They may be more open to us visiting if we clarify how much time we plan to spend and the purpose for our visit. The more information they have with the inquiry, the more likely they are open to meeting with us.

Here are some of my favorite quotes on time:

Better three hours too soon, than one minute too late.
William Shakespeare

A man who dares to waste one hour of life has not discovered the value of life.
Charles Darwin

All that really belongs to us is time; even he who has nothing else has that.
Baltasar Gracian

The bad news is time flies. The good news is you’re the pilot.
Michael Altshuler

If not now, when?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Photo credits: 
Cover image uses photo from Jon Tyson via Unsplash
watch via Wil Stewart on Unsplash

Wednesday, May 22, 2019 by Lizzy Miles ·

Saturday, May 4, 2019

Comfort Care, Whatever Does That Mean?

by Michael Pottash (@mpottash)

Comfort Care, whatever does that mean? This is the important question asked by my colleagues Anne Kelemen and Hunter Groninger in the September 2018 issue of JAMA Internal Medicine. The term is ubiquitous and its interpretation influences how patients with end stage illness are cared for at the end of their lives. In their article they argue that the language of Comfort Care is confusing and easily misunderstood. They suggest improving the understanding around end of life care and moving to a less ambiguous term for care of the dying. I worry that any term to describe dying care will always be problematic.

So what is Comfort Care? One common definition comes from Blinderman and Billings, writing in the New England Journal of Medicine, defining it as “the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.” Another is from the National Institute on Aging, describing Comfort Care as “care that helps or soothes a person who is dying ... to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.” Both definitions are simple enough, and yet lack any specifics or direction for clinicians. This leaves the practice of Comfort Care up for interpretation.

Kelemen points out the pitfalls in operationalizing this vague term. First, it promotes a dangerous misconception that clinical care is binary and that patients must choose between focusing on comfort or not. Second, Kelemen cites a study demonstrating that while the term is ubiquitous, clinicians don’t actually know what it means. This leads to ambiguity around what kinds of medical interventions constitute Comfort Care and to a wide disparity in which medical interventions clinicians apply under the circumstance. Worse, some seem to think that it means methodically titrating up an opioid infusion: “Nearly half [of surveyed physicians] expressed a belief that Comfort Measures Only care is itself an indication for more aggressive opioid administration than for other patients, regardless of clinical condition. This is of concern because it seems to obviate the critical need for nuanced assessment that drives symptom management.” Administration of inappropriately high dose opioids will hasten death; this is at best bad medicine and at worst euthanasia.

Blinderman agrees:

“However, the term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient, is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care” (or “intensive comfort measures,” the term that we prefer), the medical team should review the entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.”

A Pallimed post by Drew Rosielle from 2016 made a similar protest:

“One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort’... What we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer… Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?'”

To summarize: Comfort Care is confusing to patients and families, no one knows how to provide it, and it can be harmful.

Here is the kicker from Kelemen:

“End-of-life care plans must be specific to the patient and family, reflecting their values and goals for that critical event and universal experience. To highlight this, we coach colleagues and families to consider every therapeutic intervention—for example, each medication, laboratory test, imaging study—and evaluate whether that intervention promotes the goal of alleviating symptom burden during the dying process. If it does (eg, oxygen administration in hypoxia), we continue it; if not (eg, the ubiquitous statin therapy), then perhaps it could be discontinued after reassuring communication with patients and families.”

Let’s treat dying patients as we would treat any patients: as thinking clinicians. Continue treatments that meet the goals of the patient and family, and discontinue treatments that do not. If the goals of the patient and family are to prioritize symptom management over life prolongation then ask the question of every test, intervention, or medication: Does this promote quality of life? Some life-prolonging interventions can be continued without impacting quality, if the patient so chooses. This will all depend on the patient’s preferences and the clinical context. That is why it is impossible to create a Comfort Care algorithm, bundle, or pathway - clinical reasoning is still required.

While my colleagues believe that we should use clearer language or work towards a unified understanding of Comfort Care, I would argue that we should get rid of it altogether. Do we need a term for taking care of dying patients in the hospital? If it does not indicate a clinical pathway or answer an urgent clinical question, then what is its benefit? Rather, in my experience, I have only seen it cause confusion, miscommunication, and unethical medical practice. Kelemen has identified a crucial blind spot in our collective medical practice, one that I fear is a symptom of a general misunderstanding and discomfort with how to care for the dying. Let’s teach our trainees to continue reasoning through clinical decisions to the end of a patient’s life, and to provide good medical care even if all that entails is sitting at the bedside to hold their patient’s hand.

Disclosure: Anne Kelemen and Hunter Groninger are dear friends and colleagues.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Assistant Professor of Medicine at Georgetown University School of Medicine. He is currently very curious to know who will end up sitting on the Iron Throne.

References

1 Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology - What Do We Mean by Comfort Care? JAMA Internal Medicine. 2018

2 Blinderman CD, Billings JA. Comfort Care for Patients Dying in the Hospital. New England Journal of Medicine. 2015.

3 National Institute on Aging. Providing Comfort at the End of Life. Accessed 2018. 4 Zanartu C, Matti-Orozco BM. Comfort Measures Only: Agreeing on a Common Definition Through a Survey. Am J Hospice and Palliative Care. 2013

Saturday, May 4, 2019 by Pallimed Editor ·

Sunday, April 28, 2019

We, Too

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.

Sunday, April 28, 2019 by Christian Sinclair ·

Monday, April 22, 2019

Confessions of a First Time Presenter

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.

Monday, April 22, 2019 by Pallimed Editor ·

Sunday, April 14, 2019

A High Level Review of Medical Marijuana

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.

Sunday, April 14, 2019 by Pallimed Editor ·

Sunday, April 7, 2019

Getting Advocacy Right

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,

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 ·

Saturday, March 30, 2019

Palliative Care Social Work: A Year of Leadership

by Vickie Leff (@VickieLeff) and Allie Shukraft (@Alifrumcally)

It has been an amazing year for those of us who are palliative care social workers. The 4th edition of National Palliative Care Guidelines, published this fall, adding several psychosocial focused domains to the list of best care practices.1 Many of the 8 domains specifically highlight the expert skill set of social workers on the interdisciplinary team. Palliative care social workers were delighted to see these highlighted in the guidelines. Palliative Care teams work best when they allow members to practice to the top of their license. Although there is often overlap, especially in the arena of psychosocial care, social workers are usually the backbone of providing these services.

We saw the FIRST advanced practice, evidence-based certification for palliative care & hospice social workers open for testing in January 2019: a significant step for social workers in a concerted effort to be recognized and respected for our work within the field. The APHSW-C certification was the result of years of work, spearheaded by Barbara Head and the leadership of Social Work in Hospice and Palliative Network (SWHPN). Comprehensive, evidence-based standards were developed and reviewed by experts in the field.2 The result is a pathway for pc and hospice social workers to validate their special skill set, which may, over time, lead not only to increased validity but more leadership and financial opportunities. Hopefully, this advanced practice certification will lead to increased financial opportunities such as pay increases for those with the certification, as well as creating the potential for inpatient palliative social workers to bill for their services, and increased opportunities outpatient billing.

While this acknowledgment and use of the social work skill set is a great step forward, we still often struggle to “prove our value” to many medical teams, some of them even our own. We cannot bill for our inpatient services, unlike other team members, and this has often led to needing to assert our skills and impact perhaps louder than others (I have a particularly “loud” reputation!). Many PC teams still don’t have a PC SW, or are understaffed by national standards.3 It’s a difficult problem, funding a position that cannot generate direct revenue. However, more and more data point the important role of psychosocial care, as evidenced by the 2018 guidelines. We know intuitively, the expertise of the social worker impacts the quality of care for our patients. Sometimes it’s harder to prove this to the folks who are responsible for the bottom line.

Another, more general, opportunity for growth for social workers in the coming year is a shift in where we see some palliative care programs “owned” within health care systems. As Palliative Care moves into the realm of population health including outpatient and home services, there will likely be more social workers in program and administration leadership positions, helping their teams and programs with these initiatives. This focus is perfect for the social work perspective of “person in environment”, first named by Mary Richmond, social worker in 1917. We see transition points in the framework of systems theory, which naturally assesses the patients’ needs in the context of where they are, meeting those needs and anticipating interventions going forward. As palliative care programs move into this home space, we encourage their use of the long-standing and well developed social work theories about how people adapt, change and cope. These skills will serve to enhance our palliative care efforts for the patients, families and our colleague providers.

Another accomplishment for palliative social work at the beginning of the year was the publication of an incredible resource for the health social worker released in 2019: Palliative Care: A Guide for Health Social Workers. Edited by B. Sumser, M. Leimena and T. Altilio, Oxford Press. The outstanding collection of authors lend their expertise to complicated theoretical frameworks, clinical interventions, case examples and a variety of overarching issues related to providing the best care to patients and families. Undoubtedly, this new book will become the teaching resource for social work academic and field work to guide health social workers when working with seriously ill and/or dying populations.

Finally, this year has seen an incredible increase in social workers in palliative care and hospice providing a variety of strategies and interventions to cope with compassion fatigue and burnout. One of the best articles came from Emily Browning on debriefings in the ICU.4 The debrief model has been used in social work for quite some time and translates extremely well to helping our colleagues with moral distress, increasing social support, decreasing isolation – all factors that impact one’s desire to leave the field.

For more Pallimed posts on Social Work, click here. For more posts by Vickie Leff, click here. For more posts by Allie Shukraft, click here.

Allie Shukraft, MAT, MSW, LCSWA is a reformed high school English teacher turned pediatric palliative care social worker with Carolinas Healthcare System in Charlotte, NC. She enjoys spending time with her family, trying out new recipes, and exploring the country whenever she can. You can find her on Twitter @Alifrumcally.

Vickie Leff, LCSW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not always at the same time!) as her primary coping mechanisms. You can follow her on Twitter @VickieLeff

References

1. Ferrell B, et.al. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. Journal of Palliative Medicine. 2018;2018.

2. Glajchen M, et.al. Defining Core Competencies for Generalist-Level Palliative Social Work. Journal of Pain and Symptom Management. 2018;2018.

3. Spetz J, Dudley, N., Trupin, L., Rogers, M., Merier, D., Dumanovsky, T. Few Hospital Palliative Care Programs Meet National Staffing recommendations. Health Affairs. 2016;35(9).

4. Browning E. Reflective Debriefing: A Social Work Intervention addressing Moral Distress among ICU Nurses. Journal of Social Eork in End of Life & Palliative Care. 2018;14(1).

Saturday, March 30, 2019 by Christian Sinclair ·

Monday, March 18, 2019

The 2019 Annual Assembly Social Media Recap

by Christian Sinclair (@ctsinclair)

The sun and fun of Orlando has come and gone for those of us lucky enough to steal away from our day jobs and attend the Annual Assembly of Hospice and Palliative Care. Hopefully everyone learned a lot, got re-energized and found their way back home safely.

Thanks to the work of Lori Ruder, (@loriruder), Kristi Newport (@kbnewport), Allie Shukraft (@alifrumcalli) Pallimed was present in force a the meeting through Twitter (@pallimed). Beyond recapping some sesisons and re-tweeting the best tweets from the meeting we also used a few engagement techniques like #hpmRookie19, #hpmBingo and the #hpmTOTD (Tweet of the Day).

Tweet of the Day - #hpmTOTD

This started spontaneously in 2017 as a way to highlight interesting, smart, funny, and meta-tweets from the meeting. We had some many good posts to choose from and you can check them out yourself. This year the voting is open until March 25th for the Tweet of the Conference, so if you have a Twitter account go vote now!



Encouraging new people to tweet - #hpmRookie19

Twitter can be intimdating for a lot of people, so to make it easier to see the benefit, we used #hpmRookie19 to find the new Tweeters and new conference attendees. Once found we aim to make their first experience better through engagement and tips. This year's class of rookies (give them a follow!) includes: Claudia Chou @czchou
Marc Kaprow @doctorkaprow
Kim Wills-Rinaldi @wills_rinaldi
Nathan Riley @BeyondtheMD
Natasha Dhawan @drpallicare
Rebecca Spear @DOcSpear
Doctor Ground @doctorground
Molly Sinert @HospiPharmD
Kevin McGehrin @KmCGehrin
Sarah Belcher @SarahMBlecher
Kayla Overstreet @KaylaMSNRNCPNP
Dave Tran @rollkicksoul Pamela Gordon @pamelathescot
Shkreah Bell @ShkerahB
Kristin Edwards @KristinMDCT
Avani Prabhakar @AvaniPrabhakar2
Kelstan Ellis @kelstanellis
Nathan Boehr @theboehr
Vishal Kapadia @visman21
Christina Capps @cczmd226
Kerry @HPMDoctor


If I missed you and you were new to Twitter this year or this was your first conference let me know and I will update the list!

Overall the numbers this year for Twitter engagement were down from the nearly 2,000 particpants and over 30 million impressions from past Annual Assemblies. I'm not quite sure why that is, and i would love to hear form some of you on why you think this is happening. I have some theories, but want to hear from others and look closely at the data.



Monday, March 18, 2019 by Christian Sinclair ·

Monday, March 11, 2019

Social Media at the 2019 Annual Assembly of Hospice and Palliative Care

by Christian Sinclair (@ctsinclair)

The Annual Assembly of AAHPM and HPNA is this week and if you are going to Orlando, or staying home to keep things running smoothly, social media can help make your conference experience be transformative.  Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the third year in a row, the Tweet of the Day (#hpmTOTD) will bring you the highlights of the conference and #hpmBingo will help make sure you do as much as you can while at the Assembly.If you don't know how to use Twitter to your full potential, just keep an eye out for Tweet Pros and don't be shy. If you just want some general tips for attending the Annual Assembly read up on our handy hints for attending a national conference.

The official hashtag of the conference: #hpm19 (works on Twitter, Facebook, Instagram), use it in every tweet this week!


The Pallimed Network will feature content across multiple platforms.

Pallimed Network Accounts
Official Annual Assembly Social Media Links
American Academy of Hospice and Palliative Medicine: 
Hospice and Palliative Nurses Association:
Social Work Hospice and Palliative Care Network (Not formally part of the Assembly, but having a conference right after)

Monday, March 11, 2019 by Christian Sinclair ·

Sunday, March 10, 2019

Decision-Making in the ICU - The Problem Is Us

by Drew Rosielle (@drosielle)

Annals of Internal Medicine has published a fascinating trial of a web-based surrogate decision-making tool aimed at improving decisions for patients receiving prolonged mechanical ventilation in an ICU.

It's one of the most fascinating trials I've read in a long time, and also somewhat of a monster (in size/scope of data presented) - there are 4, lengthy online supplements attached to it (!), which is daunting, and so I'm mostly just going to write here about what I find most interesting about it.

Which is that I think this may be the trial which should convince us all that what's 'wrong' with ICU decision-making is not a lack of sharing good information -- what is wrong is our entire approach to surrogate decision making.

First the trial, briefly summarized. This was a randomized trial of a personalized, web-based decision aid for surrogate decision makers of patients with prolonged mechanical ventilation. It took place in several ( mostly academic medical center) ICUs in the US. The subjects were primary or secondary surrogates of actual ICU patients (~280 patients in total), all of whom had been mechanically ventilated for 10 days at least, and weren’t anticipated to be immediately extubatable.

The main intervention was that the surrogates received and were asked to interact with a personalized, web-based decision aid tool, which is a fascinating thing that I hope to be able to see in action one day (they have many screen shots in the supplement, but because the tool is connected to real patients there’s no way to access it publicly)

The tool involves giving the surrogates prognostic information about their loved one (based on a prognostic model) which gave an estimation of their loved one’s chance of 1 year survival; educational information about prolonged ventilation, the role of surrogates, and different care goals (eg life prolongation at any cost, maximizing comfort regardless of longevity, etc), and asked the surrogates questions about the patient’s values/preferences. Then the aid presented to the surrogate a ‘goals of care recommendation’, based on those reported values/preferences. The surrogates had an opportunity to disagree with what was presented, and indicate what they thought the actual care goals should be.

(If you’re curious, the prognostic model was probably pretty accurate. The model predicted 1 year survival for all subjects on average to be ~50%, and the actual 6 month mortality--that’s as far out as they have data--was 40%.)

The ‘output’ of the decision-aid was given to the treating clinicians, who were encouraged to incorporate it in the family meeting which was scheduled for day 2 after enrollment for all patients. Control patient surrogates received no decision aid or other information, and just received 'usual care', apart from that everyone was supposed to have a family conference on day 2 post enrollment (and nearly everyone did).

They measured many, many things here, but the major outcomes they were looking at were clinician-surrogate concordance about prognosis, surrogate understanding of prognosis, surrogate well-being both acute and long-term (anxiety, trauma symptoms, etc), patient outcomes like LOS, in-hospital and long-term mortality, etc.

The simple way to summarize their findings is that the intervention had nearly no measurable effect on anything: most importantly on what happened to the patients (eg, ICU and hospital LOS, ICU and hospital mortality, long-term mortality, % who received tracheostomies, % who had discontinuation of life-prolonging technologies, etc), as well as what happened to the surrogates (anxiety and trauma symptoms, satisfaction with care and communication, etc). One of the numerous pre-specified secondary outcomes (changes in a decisional-conflict scale), was slightly better in the intervention group - by 0.4 points on a 5 point scale. Note that the family meetings which were part of the protocol for everyone were recorded and similar content was discussed at these meetings, regardless of randomized group.

The very, very interesting findings were, at least to me, the ‘concordance’ and prognosis findings (if you want to look at this yourself, the best place to go is Online Supplement 3, by the way).

Concordance (meaning surrogate and clinician ‘agreement’ on prognosis which here was measured as chance of 1 year survival) was not improved by the intervention. Fundamentally, that seems to be because surrogate’s assessment of prognosis was essentially impervious to information about prognosis as either presented by the prognostic model in the decision aid or a clinician in the family meeting.

Notably, the physician’s prognostic estimations were quite accurate on average (I don’t know if they had access to the prognostic model prognosis or not). For the entire study the the physicians and model both predicted a ~50% 1 year survival for the patient group on average. The physicians also did a pretty good job of estimating what the surrogates thought the prognosis to be (which was around 70% 1 year survival on average). The surrogates who had the decision aid did a little better at articulating what they thought the physicians’ prognostic estimation was (they guessed around 58% 1 year survival, when it was actually around 49%). Control surrogates, who did not get the decision aid, did a worse job of articulating the physicians’ estimation (they guessed ~67%). However, regardless of what group they were in, the surrogates in both groups articulated a prognosis of around 70% 1 year survival. Ie, the intervention didn’t improve the surrogates’ own prognostic estimation, even though they knew it was significantly different than the physicians’ estimate of survival.



Along these lines, they were also able to show that even after answering questions about what the patient’s values would be, and then being told by the decision aid some sort of conclusion (eg your loved ones care goals fit best with eg, balancing longevity with quality), a large number of surrogates actively adjusted that conclusion (‘disagreed’ with that conclusion so to speak, although the surrogates themselves were the one who gave the answers to the questions about patient values), and almost all of them who did that adjusted the care goals towards being more aggressive (see the figure - this was about 40% of the group).



To summarize: surrogates substantially overestimated patient’s survival, even when presented with the decision aid, and even when they understood that the physician thought otherwise. Many surrogates also disagreed with the goals of care as summarized by their own statements of their understanding of patients’ own values, and wiped that all away to state that the plan of care should be aggressively prolonging life.

There is this idea that what we need to do is somehow say the right words to these terrified, grieving, desperate families, and once we figure out the right words, spoken by the right person/presented in the right way (like a decision aid which focuses on clearly stating prognosis and prompting surrogates to reflect on the patient's values/preferences) that will lead the surrogate/s to make the 'right' decision. 'Right' decision meaning, I guess, the one purportedly the patient would have made ('substituted judgment'), acknowledging that that is typically unknowable. The problem with this model of surrogate decision making is that it does not at all seem to be what surrogates actually do, and data from this study basically show even when surrogates know things about a patient's values and preferences, many of them are unwilling to 'enact' those. Indeed, a substantial number of the surrogates in this study seem impervious to 1) objective data-based prognostic information, 2) accurate prognostic information shared by the patient's treating physician, and 3) acknowledgement of the patient's own values and preferences when they make decisions. And, in fact, it appears that a substantial number of surrogates don't really make any decision at all, and you wonder if they even perceive there to be any decision to be made, because the only 'decision' they are going to endorse is 'do everything.’ I’m really grateful for this study for really showing us that this approach may not be helpful.

And my question to us, collectively, as a medical community, is: so what? Do we think this is a problem? And if so, why? Why is anyone surprised or perturbed that fearful grieving families don't make the same decision that an ethical robot would? The only reason we think it's a problem is because there's been this collective decision the last several decades that, in fact, the right people to be making decisions about what technologies to be applying to a dying body are not the highly trained health care professionals, most of whom went to school/trained for over a decade (and sometimes much longer) just so they can know their way around an ICU, but the shocked, grieving, fearful families, who hear us demand from them, again and again, and in ways that make them feel that they have their loved one’s life in their hands, What do you want us to do? I ask this because if you listen closely to your colleagues, and even palliative people sometimes, you get a sense from some of them is that they believe the problem here is the grieving families, who are ‘in denial’, or ‘unrealistic’, or ‘just don’t trust us’. And, fundamentally, I think that’s the wrong take here.

We’re the problem, not the families.

It also bears noting that in the entire history of our species up until the mid 20th Century, virtually no one had to make end of life decisions for their loved ones, because there wasn't anything that could even be done. Now, it's not at all uncommon for us to have conversations with people about highly technical decisions about where tubes go (or don't go) into their dying relatives' bodies. No one should be surprised it often doesn't go well, and that it's a 'problem' that can't be fixed with communicating data more artfully.

I get it; this is complicated.

There are, for instance, a certain number of patient/families for whom this very nice idea I described above, the happy version of how surrogate decision making is supposed to work, does seem to ‘work.’ Honestly, I’m not too worried about those families - we just need to get them good, realistic information, and they’ll make patient-centered decisions. I also get how unrealistic (and unwise) it is to think we are going to go back to the authoritarian-paternalism days, where an individual physician's personal judgment, subject to all its biases and blind spots, is the unassailable measure of a good decision.

The only way out of this is forward, although I don't myself here have any specific 'policy' proposal to fix this, and I worry all the focus on patient choice (which originally was meant to be a way to empower patients in saying "No" to things, not a way of us in medicine of giving up our role in decision making) just makes things worse, by amplifying this idea that families get to choose medical treatments off a menu at the end-of-life, when there is nowhere else in medicine where we really do that. All the things we are taught to do in palliative care - focus the conversation on the patient, emphasize long-term health and functional outcomes and discuss care goals in that context as opposed to focusing on technical questions, careful, interprofessional attention to the grief and loss the family are experiencing, and actively making recommendations about what we think the best plan is (based on what we know of the patient) - help, undoubtedly, to an extent. But it’s not enough.

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Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

References

1 Cox CE, White DB, Hough CL et al. "Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation: A Randomized Clinical Trial" Ann Int Med. 2019. Vol 170, 285-297.

Sunday, March 10, 2019 by Drew Rosielle MD ·

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