Mastodon 18_06 ~ Pallimed

Saturday, June 30, 2018

Let's Stop Claiming That Palliative Care Improves Survival

by Drew Rosielle

Hospice and palliative care community, I'm calling for a moratorium on all blanket, unqualified claims that hospice and palliative care improve survival.

Let's just stop doing this.

There has never been any actual evidence that palliative care (PC) interventions improve survival in patients, but since the landmark Temel NEJM 2010 RCT of early outpatient palliative care for lung cancer patients showed a clinically and statistically significant improvement in longevity in the PC arm, I have heard and all read all sorts of statements by palliative people and all sorts of others (hospital executives, policy makers, oncologists) in all sorts of venues (local talks, national talks, webinars, newspapers, etc) along the lines of 'palliative care helps patients with cancer live longer.' I've even heard the results discussed as evidence that hospice helps cancer patients live longer.

We should have never done this, and if you're still doing it, please stop.

To begin with, 'palliative care' isn't a single thing. It's not like studying enoxaparin, or nivolumab, or olanzapine, where you can to a reasonable extent assume that if it helps patients in Lille, France or Boston, MA, it will likely help your similar patients in your practice wherever. Palliative care is just not like that - it is complex, and local conditions are very important, and it is impossible to make broad generalizations about PC in general from a single study at a single institution. Some PC research involves full interdisciplinary teams doing their thing; some are one or two disciplines; some involve telemedicine, care coordination, etc. You just can't generalize these sorts of interventions to 'PC' in general because it can mean so many different things.

Plus, the Temel study was only a single disease, and their nicely done follow-up study which broadened the patient population presumably failed to show any survival difference (because they haven't published that result that I'm aware of).

There is an exceedingly thin quantity of additional PC research showing improved survival.  Most importantly I think is Bakitas' ENABLE III study which, notably, did not compare PC to usual care but early PC to PC 3 months later in cancer patients and showed prolonged survival. Curiously, it didn't show any difference between groups in any other outcome (not in QOL, symptoms, intensity of EOL care, chemo in the last 14 days of life, hospice enrollment)! There is this secondary analysis of the study arguing that the survival benefit was mediated by depression, which sure maybe, except that the actual stable itself didn't show any change in mood between groups. So, it's messy, right, and at the end of the day one is left thinking that the survival improvement is curious, and you don't really know what to make of it (and not left to strongly endorse broad, unqualified claims that PC makes people live longer).

There is also this somewhat famous study purporting to show that hospice extends survival in CHF and cancer patients. Besides being industry funded (NHPCO) and using data that are nearly 20 years old now, it uses a statistically complex, opaque, retrospective design using Medicare data, that is really difficult to understand for us non-biostaticians. It's a tough question to study after all -- without randomization which would be ethically and practically challenging, how do you compare survival in patients without a clear time zero. I.e., if time zero is when someone enrolls in hospice, what is the comparable time zero for someone who never enrolls in hospice? How do you capture them at the time when they are 'equally sick' to someone who happens to enroll in hospice. You can't, thus the statistically complex study design. I'm not criticizing the study, but I am very much arguing that it's not the sort of research we translate into broad claims that 'people live longer on hospice.'

The vast majority of studies of PC intervention either don't report survival, or if they do have a neutral affect on it. Although it's notable that while everyone knows about the Temel 2010 study, hardly anyone mentions the really well done randomized, controlled trial of home-based palliative care which showed all these great outcomes (patient satisfaction, health care utilization), but also, oops, showed shorter survival in the palliative care intervention group. (You can enjoy this cranky letter to the editor about this written by Andy Billings and Craig Blinderman, as well as the authors' response, here. I really miss Andy's constant, erudite crankiness.)

Given how heterogeneous PC is, what would constitute adequate evidence that 'PC' actually prolongs survival? I think it would be one of two things, neither of which exists.

One would be a large number of single institutional studies of PC interventions which show prolonged survival (and, concomitantly, an absence of numerous single institution studies showing the opposite). How many? I don't know, but a lot more than we have now. Think about how many studies we have of PC interventions, from all over the world, in different patient populations, inpatient and outpatient, including both trials and observational research, which show improvements in some patient-centered outcome like quality of life. A lot, so many in fact that it's notable when one doesn't show such an outcome. We don't have anything close to this for survival outcomes.

In fact, someone went ahead and did a very nice meta-analysis of all these (mostly single institution) palliative trials, which shows just how great we are at improving all sorts of awesome outcomes, just not survival.

The second would be a large, multi-institutional, multi-regional study of some sort of PC intervention showing improved survival. That doesn't exist.  We do have it for resource utilization - such as this multi-regional study by Sean Morrison published in 2008. Additionally, resource utilization outcomes are like QOL outcomes - they are a dime a dozen (we have dozens of studies of PC interventions, of many different shapes and sizes, from all over the world, showing differences in resource utilization).

At the end of the day I of course hope PC interventions prolong survival, but I'd be pretty surprised if that panned out. Most of our patients want to live longer with a reasonable quality of life, and I think we should be satisfied with the 'helping them have better QOL part.' We should react with curiosity about any new single-institutional study which shows improved survival, just as we should with similar studies that show decreased survival. Not anything to celebrate or bemoan.

Thing is, we have a lot to be proud of. A lot that we do well, and that we have all sorts of evidence supporting us in. Without qualification, we can go around saying Palliative care improves the quality of life of patients with serious illness. Seems good enough to me.

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. For more Pallimed posts by Drew click here.

Saturday, June 30, 2018 by Drew Rosielle MD ·

Thursday, June 14, 2018

Don't ask a dying man if he wants bacon or sausage

by Lizzy Miles

It has been four years since I first wrote the article “We Don’t Know Death: 7 Assumptions We Make about the Dying” for Pallimed. You would think that with four more years of experience I would feel more confident in my knowledge about my job and my patients. I don’t.

In fact, I’m still uncovering assumptions that I make when working with patients who are dying.

Recently, I discovered Assumption #8: Dying patients want to be in control.

I had so many reasons and examples to believe this, from the very beginning of my hospice work. I came to this conclusion after just a short time volunteering. One of the hospice patients I visited would have me adjust the height of her socks continuously for ten to fifteen minutes. At first I didn’t understand and I thought to myself that she must be a little obsessive. Then I had this a-ha moment.

She can’t control the big things, so she wants to control the little things.

This assumption held up for a while. I would have frustrated caregivers who would tell me that their dying loved one was impossible and demanding over little stuff: the lights in the room, the arrangement of the drapes. These caregivers would be exasperated. I would validate their feelings of frustration, but also encourage them to empathize. I’d tell them that it’s tough to be dying. The dying need to control what they can. Often this worked to provide some relief to the caregiver, if only briefly.

Slowly, though, my solid belief in the dying person’s desire for control began to unravel. True, there are some patients who still very much want to be in control…but not everybody.

Everything came to a head when I met “John.” I asked him the dignity question, like I always do. He scowled at me.

“How dare you ask me such a deep question. How am I supposed to answer that?” His was one of the most difficult assessments I had to make because he didn’t like questions. He told me his wife asked too many questions. He told me he wasn’t doing well, but “there’s no point to talk about it.”

Later that day, his wife (I’ll call her “Sally”) came into the inpatient unit, and I returned to the room to meet her.  We sat on the couch across the room while John was finishing a visit with a Pastor. Sally talked about how sweet John used to be. She said lately though he had been taking his anger out on her. We had moved to his bedside when Sally said to me, “All I ask is whether he wants bacon or sausage and he yells at me.”

At this point, John rolled his eyes.

I looked at him, and then after reviewing our first interaction in my head, it dawned on me. He is overwhelmed. Unlike other patients who want to control every little thing, John was irritated by the decisions he had to make. I turned to Sally and said, “I know you are trying to please him and give him what he wants, but right now, he has the weight of the world on his shoulders. The act of deciding whether he wants bacon or sausage is so insignificant to him right now.”

I looked over and John was nodding vigorously. Sally was listening intently. “But what do I do? I want to make things easier for him.”

Side note: Surprisingly, we can learn things from television medical dramas. I had been watching The Good Doctor and there had recently been an episode about how a doctor with Asperger’s was irritated with being asked questions. Another doctor realized that giving him statements, rather than questions, are better.

So I suggested to Sally. “Don’t ask him whether he wants bacon or sausage. You pick what you’re making and tell him, ‘I’m going to make you bacon and eggs.’ If he doesn’t want that, he will let you know.

John nodded vigorously again and said emphatically, “Oh yeah I would.” Both were smiling. We were then able to move on to life review and by the end of the visit, the grumpy patient was calling me “Darling.”

So how do you navigate learning and understanding patient preferences to have control or give up control? They aren’t always able to tell you but it's not hard to figure out if you're looking for it. Generally, I would say to start with the premise (okay yes, assumption) that they do want to feel in control.

For the patient who wants control:

  • Frequently reinforce that they are in charge.
  • If the family tries to take over conversation, always look to the patient until the patient verbally defers. (One exception is if there is a cultural component that an established family point person represents the patient).
  • Ask permission before you sit.
  • Ask permission to visit.
  • Don’t assume they want the television or the lights on/off. Ask.
For the patient who is tired of decisions:
  • Consider how you might get information by making statements instead of asking questions. Say: “I wondered how you were doing today.” If you raise your voice at the end of the statement, it’s still a question. Try saying the statement and then sitting with the silence. A non-answer might be an answer in itself.
  • If you get more than one “I don’t care” as an answer to a question of choice, be mindful of decision fatigue. Tell the patient what you’re going to do and leave space for them to state a preference.
  • Listen for cues from the family indicating that they’re having newfound interpersonal communication issues and provide education when appropriate.
  • Know that when patients express untruths ("lies") it might be a sign of question fatigue.

  • Photo credit: bacon by Andrew Ridley on Unsplash
    Photo credit: trees by Evan Dennis on Unsplash
    Photo credit: breakfast by Karolina Szczur on Unsplash

    Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of 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

Thursday, June 14, 2018 by Lizzy Miles ·

Friday, June 8, 2018

Pallimed Birthday - Lucky 13

by Christian Sinclair

Anniversaries are a fun time to celebrate, but the fun ones end in numbers in 0 or 5. For other anniversaries, it is a good time to take stock, reflect on the past and look towards the future.

Today is our 13th anniversary of Pallimed, which Dr. Drew Rosielle started in 2005 when blogs were THE thing to do in social media. We also spent many of those early years helping people understand the power of communication through social media with projects like #hpm chat on Twitter, encouraging tweeting from conferences and the advocacy power of our Pallimed Facebook page. With that focus, we have drifted away from original content being the main thrust of our efforts, but have still strived to create good content with strong posts from great writers like Lizzy Miles and Drew Rosielle among others. We are still dedicated to the website and will continue to post always.

Of course, this effort does not happen without the work of many people. I am indebted to Lizzy Miles (Pallimed editor), Megan Mooney-Sipe (Lead Facebook Contributor), Meredith MacMartin and Renee Berry (#hpm chat) for leading some of the core projects of Pallimed. A big thank you to other volunteers who have helped with various projects in the past year including: Jeanette Ross, Kristi Newport, Ashley Deringer, Gary Hsin, Joe Hannah, Lori Ruder, Niamh van Meines, Emily Escue, Ben Skoch, Jen Bose, Liz Gundersen, David Buxton, SarahScottDietz, Sonia Malhotra and Vivian Lam.

Since Pallimed has always been a volunteer effort, we are of course on the lookout for great new volunteers to join us and if you have been a part of Pallimed in the past, we would always welcome you back. If you have a great idea for a series of posts, podcast, videocast, journal club, book review, film review, journal article review, this is a great place to publish it. If you are not the creative type, there are a ton of admin projects that need to get done behind the scenes. Many hands make light work and I can tell you it is a blast being part of a team that makes a big difference...together. We have an audience of over 50,000 across all of our platforms so if there is something that needs to be said, we can help you say it. If you are not sure what to say, I have plenty of writing assignments where I am looking for writers. As a bonus, this work can be used for academic promotion if that is something you need. I've seen work for Pallimed get cited in promotion applications!

So the state of the blog is steady. We are staying the course, but always on the lookout for other smart, dedicated, passionate people who want to make a difference for palliative care and hospice. Let me know if that is you.

Christian Sinclair, MD, FAAHPM is the Editor-in-Chief of Pallimed. He is always surprised he wrote the most for Pallimed when he had infant twins in his house.

Friday, June 8, 2018 by Christian Sinclair ·

Wednesday, June 6, 2018

The Not-Quite Annual ASCO Round-Up - 2018 edition

by Drew Rosielle

The American Society of Clinical Oncology annual meeting, besides being a feast for the pharmaceutical business news pages (google 'ASCO' and most of the hits will be about how announcement X affected drug company Y's stock), is also one of the premiere platforms for publishing original palliative-oncology research. So every year I try to at least scan the abstracts to see what's happening, and I figure I might as well blog about it. It's tough to analyze abstracts, so I'll mostly just be summarizing ones that I think will be of interest to hospice and palliative care folks. I imagine I've missed some good ones, please leave a link in the comments if I have! My major observations on this year's abstracts is that there was very little about symptom management compared to years past, except for neuropathies.

(Past ASCO reviews here - 2008, 2017 - Ed.)

Pain and Symptoms
Systems Issues
  • Claims and SEER database study suggesting that earlier palliative care involvement in pancreatic cancer reduces some costs. 
  • Patients in Medicare managed care organizations use hospice a little more than fee for service Medicare patients 
  • Barriers to palliative care involvement in patients receiving stem cell transplants, including this data point, which is something I've personally wondered about a lot: "Higher sense of ownership over patients’ PC issues (β = -0.36, P < 0.001) was associated with a more negative attitude towards PC [by hematologists]."  
  • EOL spending was higher in ACO patients vs non-ACO patients.  
  • A retrospective study which compares many outcomes in patients who receive early palliative care inpatient vs not. The title abstract highlights survival (which was a bit longer in the palliative group). Please do not quote this abstract however to claim that PC prolongs survival in patients with cancer: this is messy retrospective data, and it's not even clear from the abstract whether the survival difference was in univariate or multivariate analysis (PC patients, eg, were younger, more likely to be discharged home, etc.). Similarly, a Canadian study looked at early palliative care consultation in pancreatic cancer (retrospectively) and apparently showed that late but not early palliative consultation was associated with longer survival. The same study also showed that having metastatic disease at the time of diagnosis was also associated with longer survival, so I'm not going to make much of any of this.

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. For more Pallimed posts by Drew click here.

Wednesday, June 6, 2018 by Drew Rosielle MD ·

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