Saturday, November 21, 2020

Addressing The Range of Patient Beliefs About COVID-19

by Lyle Fettig (@FettigLyle)

I’ve been thinking about my role as a physician in responding to skepticism about a range of COVID topics, especially as we approach the holidays and all the tension about difficult recommendations to forgo traditional Thanksgiving dinners. As I think about our current situation, I can’t help but recall an encounter I had with a patient many years ago.

In winter 2008 after President Obama was first elected, I saw a woman in clinic who said she was disappointed by the election result. She cited a jaw dropping falsehood about what she thought his election would mean for healthcare, and especially healthcare for white people. I was frankly shocked when she mentioned falsehood, as I had not heard her specific concern in the runup to the election. She had no history of psychosis or delusional thinking. We spent a while talking about her concerns, and why her healthcare was secure.

I remember thinking, "where did she get this from and how could she believe this?" The belief clearly had a racist element underpinning it. I felt powerless, as I couldn’t fix this person’s belief. But through a mixture of trust built on our relationship and exploring her underlying concerns, I think she ultimately listened to my reassurance that she would not lose her Medicare. And regardless of what she believed, it ultimately didn’t matter. The truth was the truth. Her Medicare coverage wasn’t changing, and this truth would bear out for her regardless of her belief.

Don't we have moments like this all the time, when patients bring up shocking beliefs/myths/etc about how the world works? Maybe not every day, but it happens a lot. People are not always well informed and have a mix of beliefs, born out of individual experiences, family background, and culture. “Groupthink” is a part of that culture.

When people bring up myths about their illness or healthcare itself, we usually deal with it one on one with the patient. We explore underlying concerns and try to address those concerns as best we can, either through communication or action.

Dr. Fauci said he was "stunned" that so many see the pandemic as "fake." I've also heard colleagues express disbelief about how lackadaisical many in the public are.

But if you've been practicing medicine for a while, haven't you had enough people individually bring up wild ideas about how the world works to say, "yeah, actually I'm not all that surprised." The piece that's hard is the group think, and that we have so little control over this groupthink, right here in front of us. So while I’m having a bit of disbelief, it isn't the main feeling I've been having. The main response is a bit of helplessness.

I feel helpless in the face of so many who aren't taking this seriously, and I'd guess many of you do, too. The only way forward for most of us is one patient at a time. Sure, those who have a megaphone should continue to blast accurate and understandable public health messages. It's really important. The rest of us can amplify these messages.

Just remember that you've been here before with patients' mistaken beliefs. One on one with patients and their families is where healthcare professionals have our greatest agency. We have the ability to understand explanatory models, motivations, and concerns.

None of us would dispute that public health oriented restrictions come with hardships for many. When patients (or loved ones) express skepticism about public health guidance, resist the inclination to reinforce what you know to be true. By now, they have heard it all before! Explore how following public health guidance might be impacting their life in other ways (social isolation, loss of income, etc). This is what the restrictions actually mean for most people. This is harder to accomplish on social media or with family and friends, but you could give it a try there, too.

Explore how they are talking about coronavirus and the restrictions with others around them. You'll hear about the groupthink. To go against the grain of one's in-group feels like a threat to their identity (even if the vast majority of the time, it isn’t a threat in that way). You will also hear a great deal about how families and friends are working together to overcome the conflicts that are inherent to trying to navigate these difficult times. Celebrate the work they are doing to do this when this happens! I’m definitely seeing this a fair amount in our palliative care clinic with our seriously ill patients and their families, who remain highly motivated to stay away from COVID. People have been very creative, having drive-by birthday celebrations at homes, etc.

IF you can figure out how public health guidance impacts a person in potentially negative ways, then you can acknowledge that (and sometimes work to mitigate with help of social workers, etc). And then they may be more open to hearing you speak the truth about prevention.

Don't expect them to change their mind instantly. Most of the impact of health care professional/patient communication comes after a visit, and they may never tell you that you helped change their mind. As with all other healthcare, "They don't care how much you know until they know how much you care." This maxim remains true with pandemic communication. If you’ve spoken your mind with compassion and respect, you’ve done your job, even if you can’t ultimately control what they do.

The pandemic has “stretched” my ability to separate what I can and can’t control. As we head into what looks like a dark winter, I hope we can all continue to find the light of our souls: Our ability to foster genuine human connection in the hardest of times.

P.S. Yes at the beginning of the pandemic I said we were going to war with coronavirus (see previous post). Do I regret it? Yes and no. If I didn’t sorta regret it, I probably wouldn’t be bringing it up right now, as I might be the only person who actually remembers this. I don’t like battle metaphors, I avoid them in practice unless patients bring them up. And I don’t want to be at war. So consider this post a bit of penance for “going there.” But I’ll admit to having mixed feelings about many different metaphors, even including battle metaphors. I think the downsides of battle metaphors mostly outweigh the upsides, but I can’t help to still think of it when it comes to the virus. So I’ll continue to wrestle with it, and accept non-violently any judgement silently cast by those who read my previous post. I get where you’re coming from, trust me. :)

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

Note - this post originated from a thread by Lyle Fettig on Twitter.

Saturday, November 21, 2020 by Pallimed Editor ·

Friday, October 23, 2020

Chlorpromazine in Delirium FTW!

by Drew Rosielle (@drosielle)

David Hui, Eduardo Bruera, and colleagues have published another important delirium trial out of MD Anderson which I thought was worth blogging about in detail.

In some ways it's related to the same group's RCT a few years ago of lorazepam added to haloperidol for agitation in hospitalized advanced cancer patients with delirium (showing the lorazepam quite effectively reduced agitation via presumably a sedating effect). As I pointed out in the Palllimed post about that trial, while they labeled their patient group as 'agitated delirium in advanced cancer', in essence it was really a sedation for terminal delirium trial as most patients only lived a few days, but a casual reader of the study might not realize that and think they were finding that lorazepam is a disease-modifying therapy for delirium. Which it is not, discrete exception aside (alcohol withdrawal?).

This is an important distinction, as I think there's been a sort of confusion over the years in our discussions about delirium and even research about it between disease-modifying therapy for delirium and essentially palliative-focused therapies to reduce distressing aspects of delirium (primarily agitation). Eg, a drug or drug combo or other intervention that reverses delirium / shortens delirium / returns normal cognition vs a therapy that reduces agitation (because while you could reduce agitation by 'fixing' the delirium you could also do it by sedating the patient). When and whom to just sedate is often complicated, but frankly less so in our patients who have 'terminal delirium' or 'agitation,' insofar as this implies the patient is imminently dying, it is not expected we can reverse the underlying cause of the delirium, and (most often) the goal is to prevent and mitigate suffering during the patient's final days, which in reality ends up meaning sedating the patient (not in a deep, continuous, so-called 'palliative sedation' way, but enough to quiet the distressing motor restlessness etc).

This is a long-winded way of expressing my appreciation for the investigators who, for this study, describe their goal as reducing terminal agitation in advanced cancer patients with delirium, and not treating delirium per se, which is much appreciated.

The trial: this is a single-center, double-blind, parallel-group RCT trial of hospitalized cancer patients at the MD Anderson palliative unit. Basic inclusion criteria were patients had to have a RASS score of 1 or more during the prior 24 h despite being on their group's standard, first-line delirium/agitation therapy which is scheduled + rescue haloperidol (which per their protocol could have been anywhere from 1-8 mg a day, but it's a little confusing and they also note that all the enrollees were put on 2 mg haloperidol q6h scheduled + 2 mg q1h prn before going onto the study drugs protocol). Subjects were randomized in a 1:1:1 fashion to haloperidol dose escalation, switching haloperidol to chlorpromazine, or additing chlorpromazine to haloperidol.

Interestingly, they didn't however clearly define the 'terminal' part of their goal of studying terminal agitation. For what it's worth, this is a study within a single institution's palliative unit, and they basically say that any patient getting to their unit in such a state is very likely to be 'terminal' and they left it at that.

They had a complicated double-dummy design using pre-made syringes of study-drugs/placebo, but essentially patients received one of:

- 2 mg haloperidol q4h scheduled + q1h prn
- 25 mg chlorpromazine q4h scheduled + q1h prn
- 1 mg haloperidol + 12.5 mg chlorpromazine q4h scheduled +q1h prn

If this was inadequate (RASS 2 or higher), doses were essentially doubled in a stepwise fashion. This Table from the Supplement outlines the protocol, it's a bit complicated.

Their primary outcome was the change in RASS at 24 hours. The secondary outcome was the proportion of patients with a RASS score of -2 to 0 at 24 h (basically, that was their goal, to keep patients between -2 which is 'lightly sedated,' and 0 on the RASS).

They randomized about 45 patients between the arms, mean age 63 years, 83% white, and all had a KPS of 30% or less.

There was no difference between groups regarding RASS reduction at 24h, or proportion of patients with a goal RASS at 24h. Most subjects' RASS scores went down about 3 levels (eg from 1 to -2), without differences between treatment arm at 24h.

Nearly all of the other secondary outcomes were the same between groups.

But, a couple of the secondary outcomes that did show differences did seem to favor rotation to chlorpromazine: fewer patients in the rotation to chlorpromazine needed rescue medication in the first 4 or 8 h after blinded drug/s were administered (big differences here, eg 19% in chlorpromazine vs 73% in the haloperidol escalation group at 4 h), and fewer in that group also needed a dose escalation. Ie, although the study wasn't really trying to determine this, their data are suggestive that in the chlorpromazine arm (25 mg q4h scheduled), patients "more rapidly" achieved the desired RASS state than the other arms. They got more comfortable appearing (more sedate) faster, and stayed there, compared to the other arms. I believe these were post hoc analyses, not prespecified secondary findings, so take them with a grain of salt, however the differences were quite marked, and I'm basically persuaded here. Chlorpromazine FTW!

Median survival was 48-72 h in all groups. No differences in side effects/harms between groups were evident.

Bottom line here: escalating haloperidol, rotating to chlorpromazine, or doing a little of both are equally helpful in getting terminally agitated patients more comfortable appearing at 24 h, but switching to chlorpromazine is probably the fastest method.

So, pretty good study. To me, it's an argument that I should be rapidly switching to chlorpromazine when I think death is imminent (days) and a few doses of haloperidol have not achieved much. There's a confusion of options out there, more haldol, chlorpromazine, other sedating neuroleptics (eg quetiapine which I kinda hate but is used all the bleeding time it seems [not by my team], and while this study obviously didn't look into all the options I'm in favor of really making chlorpromazine the drug of choice (when sedation is acceptable, the goal).


For more Pallimed posts about delirium.
For more Pallimed posts by Dr. Rosielle click here.

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.

Friday, October 23, 2020 by Drew Rosielle MD ·

Monday, October 19, 2020

Patient Access to Notes is Coming! Is Palliative Care Ready?

by Christian Sinclair (@ctsinclair)

Patients and families across the US are about to get a close look under the hood of electronic health records in just a few weeks. Starting in November, the 21st Century CURES Act is putting in place the rules for patient access to their health records including the clinical notes of the clinicians. Your organization is possibly planning for this new access to be flicked on like a light switch in the inky dark of night. Some of you may be shocked and seeing this for the first time, some of you have seen glimmers, some of you are well prepared, and some have had your eyes long adjusted and are probably thinking, “What’s the big deal with patient access?”

Patient access to notes feels like it should be in our wheelhouse. It is about communication, patient-centeredness, and talking openly about hard truths. But understandably without much preparation, many palliative care and hospice clinicians are going to feel underprepared, which may cause a lot of anxiety. But there is hope! And time! Well, a little bit of time, but still time!*

If all of this is news to you, I would encourage you to first spend some time on the OpenNotes website - www.opennotes.org. The group started over a decade ago to help clinicians and patients navigate this potentially tricky territory so that both can benefit. It is not directly related to the CURES act nor responsible for the implementation. The OpenNotes site has great resources, tips, videos and links to research of what other specialties have been exploring like adolescent patients and confidentiality, mental health, and caregivers.

Second, if you are on Twitter, definitely follow friend of the blog, Liz Salmi (@TheLizArmy), and OpenNotes on your preferred social media platform (Twitter, Facebook, LinkedIn, YouTube)

Third, newly armed with some information, go talk with your colleagues at your organization and your leadership about what local resources and info you need to know. Do your note templates need to change? What will you be telling your patients and families to expect? How will your group handle sensitive information that you would not feel comfortable immediately sharing with patients and families? How will this impact your collaboration with other teams when you have conversations via your notes?

Fourth, now that you have thought about it and notified the people you work with, make time to attend some online Q and A sessions organized by the OpenNotes team. This Wednesday, October 21th from 5-8pm ET, there will be a live AMA (Ask Me Anything) on Reddit (r/medicine) with myself and a number of other colleagues who will be taking questions on the ins and outs of OpenNotes. Next week on October 29th 11a-Noon ET, I will be giving a Grand Rounds Webinar with the group at OpenNotes. It is free to register, and I hope someone from your group will take time to attend.

Lastly, If you have any tips, tricks, questions, please add them in the comments below. I will work hard over the next few weeks to stay on top and get them answered!

Now, let’s review your plan:
1 - Read the OpenNotes website for practical information and research.
2 - Go follow key people on Twitter who talk about patient access to notes.
3 - Talk to your colleagues at work and your leadership to prepare for patient access to notes.
4 - Register for the webinar and check in on the Reddit AMA.
5 - Leave tips, tricks and questions in the comments below.

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the Univeristy of Kansas Health System working in outpatient palliative care and leading the research group there. When he is not fixing the order of the 'i' and the 'a' in the word pallaitive, he can be found coming up with unneccessary acronyms.

*And speaking of time, I do want to apologize for not banging the drum on this earlier and louder. I have been a fan of the work OpenNotes has done for a long time, and sharing my notes for the past few years. The CURES act was passed into law in late 2016. The final rule and timelines were finalized in Spring of 2020. I should have been much louder about this, but with COVID, it did not seem as critical until it got much closer, and now it is nearly here. So I am working to make amends!

Monday, October 19, 2020 by Christian Sinclair ·

Thursday, September 24, 2020

Obstetrics and Gynecology Needs Palliative Care

by Nathan Riley 

"Can you all, please, just leave us alone?"

One particular experience with the death of a newborn stands out in my mind. Moments after birth the baby was breathless, and the neonatology team could not intubate. All of the kingdom’s pediatric surgeons and other specialists rushed to labor and delivery to no avail. The baby was born with a four centimeter gap in his trachea, an irreparable condition. The mother sat there, holding her dying baby as he took his last breaths while physicians, nurses, and residents were busy as usual. Click-clacking away on computers. Adjusting blankets. Asking questions. Rearranging surgical instruments. This bustle continued until she repeated herself a little more forcefully: “LEAVE US ALONE!”

This experience illustrates how, in a mother’s moment of suffering, a room full of prolific fixers, doers and problem-solvers came up empty-handed. While the loss of a newborn is a relatively rare occurrence, suffering - physical, emotional, psychosocial, or spiritual - is common in the world of women’s health. Likewise, if our only goal on labor and delivery is “healthy baby and healthy mom,” we are without recourse when the normal hazards of being human – many of which are completely out of our control - befall us.

As an obstetrician and palliative medicine specialist, I often wonder how we might approach these challenging scenarios differently. My palliative medicine training taught me that not every problem can - or should - be fixed. My time with patients is often just as well spent sitting in silence as they process the emotions that come with bad news. Even my approach to invasive exams, pregnancy, birth, and pain management is met with an open mind and conversation before putting my steel instruments or medicines to use. After all, a “good outcome” is variable and highly dependent on the patient’s values and goals, and I cannot uphold these values without first building a relationship.

To illustrate how obstetrics and gynecology might be improved through a palliative care touch, let us take a look at one of the most common diagnoses that OBGYNs face in their daily work lives: early pregnancy loss.

Statistically, ten percent of pregnancies end early as a spontaneous abortion or as a “blighted ovum”, in which case the embryo does not develop at all. The diagnosis is thus all too familiar to us providers, but rarely do we consider its gravity on our patients.

The typical clinical routine after a positive over-the-counter pregnancy test is as follows. The patient is greeted on crinkly white paper and positioned in stirrups while the busy clinician offers congratulations. The clinician lubricates and inserts an ultrasound probe into her vagina, swiftly waving the wand around to assess her anatomy. If unable to identify a viable embryo inside the uterus, the clinician resorts to various platitudes to communicate the findings. We are not trained to address anger, sadness, despair, or to consider that this news might even bring relief. In my OBGYN training, my preceptors modeled how to deftly fill any lull in conversation left by the wake of the bad news with generic consolations followed by a list of management options.

Maybe she is facing financial hardship due to the cost of infertility treatments? Maybe this same thing happened in the past and she nearly died from blood loss as a result of a “routine” dilation and curettage? Have you explored whether this is even a desired pregnancy?

A palliative approach to early pregnancy loss would be predominated by conversation, storytelling, and connection, all before a woman is even asked to undress from the waist down. It would include extensive information gathering in order to guide the diagnostic imaging process and align any conversation thereafter with the patient’s expectations and hopes. Early pregnancy failure can be catastrophic to the patient and their partner, and the delivery of this news requires patience and empathy. As with a cancer diagnosis, a patient may not be ready to hear everything that immediately follows the delivery of bad news. With this in mind, it would be better to discuss management options once the patient has had a few moments to process the news, perhaps in an adjacent room away from happily pregnant women or crying newborns. The palliative approach may even include a social worker or chaplain on standby to meet the great psychological, emotional, and spiritual needs for which other clinicians are ill-equipped.

As OBGYNs, we are privileged to play a role in patients’ most intimate experiences, which are often rife with fear, hesitation, and humanity. Our practice ranges from management of suspicious masses to therapeutic abortion, from infertility to debilitating pelvic pain. We are also responsible for guiding conversations around life-limiting or life-threatening prenatal diagnoses.

Challenging experiences – including rare fetal malformations and the all too common early pregnancy loss – abound in women’s healthcare, and many of these experiences lead to varying degrees of worry and suffering on the part of our patients. The adoption of a palliative approach has the potential to transform obstetrics and gynecology to a patient-centered discipline rooted in compassion and informed by our patients’ values.

And yes, when occasional tragedies arise, we must also learn that in birth – as with death – not being able to fix a problem does not imply failure or inadequacy. Sometimes holding space for these tender moments is the only thing to do, and it can be so therapeutic.

Nathan Riley, MD, is an OBGYN and hospice physician with Hosparus Health in Louisville, KY. He also works remotely as a telehealth palliative care physician for Resolution Care.

Thursday, September 24, 2020 by Pallimed Editor ·

Monday, September 21, 2020

Why Writing Down the Good Stuff Can Keep Out the Bad

by Michala Ritz and colleagues

In today’s current world of social isolation and virtual EVERYTHING, it is easy to get sucked down an endless rabbit hole of negativity, sad stories of sickness and death, and scary projections of the future. It is now normal to wake up, wonder about family and friends near and abroad, and monitor the volatile stock market – all while sipping our morning coffee worrying what bad news tomorrow may bring.

Those lingering questions keep us up at night, like monsters under our beds.

“What if I lose my job?”

“What if my parents contract COVID?”

“How will my patients do with all of this?”

“What if I accidentally spread the disease to someone I love?"

“Will life ever be “normal” again?”

Current alterations in daily life due to the coronavirus pandemic have put an enormous mental and emotional strain on countless people throughout the globe.1 Anxiety and depression result from increasing physical and social isolation. There is such a focus on the negative; what activities we cannot do, what events we cannot attend, and what people we cannot see in person. Commonly, the end of the day becomes a time for reflection on the negative, as we replay the conversations, events, and thoughts that did not go well. What’s missing is a healthy dwelling on the good things, the happy moments that brought a quick smile to our faces and joy to our days.

Science and years of research have proven that grateful people are happier and healthier. Gratitude journaling helps people cope with stress and increases the positive emotions that they feel.2 Dr. Martin Seligman has written extensively of the power of positive psychology, and specifically the benefits of gratitude journaling by writing down three positive events or feelings at the end of the day. In doing this, it “changes your focus from the things that go wrong in life, to the things you may take for granted that go well”.3 Gratitude journaling also creates a mentality that is more resilient to adversity and setbacks. Extended research has also shown that promoting resilience training for healthcare workers can lead to lower level of depression, anxiety and an increased overall life satisfaction.4

So, you are telling me, that in order to maintain happiness, healthiness and resiliency, I can reflect on my day and write down three good things that happened? Sounds simple enough. Sign me up! And, guess what, there’s an app for that.

We worked with a software solutions company called CrossComm to build a free, web-based (no download needed) gratitude journaling and sharing app called “The Three Good Things”. We particularly thought about colleagues in palliative care in its design, but also made the app usable for persons outside of healthcare, including our family and friends, patients, and their caregivers. Users of the app can journal privately, or create and invite their own family and friends to join a gratitude sharing network where nightly posts can be seen by those they care about. In doing so, we hope that positivity goes viral, starting from within your own social circles. Further, the app can send you a text or email reminder at the time of your choice to nudge a moment to reflect on the things that are going well.

Here are some examples from the latest rundown of publicly-posted “good things”, known in the app as the “Positivity Feed”.

“Cookie cake and grilled burgers”

“My wife and I are still in love. Like lots.”

“Playing Apples to Apples”

“One week in our new house”

“Cauliflower rice bowls”

“Walked a 5K”

“Thankful for my children”

Just because we have to be a little distant doesn’t mean we need to lose sight of the great lives we all live, the love we experience each day, and the kindness the world still has. We encourage you to take a quiet moment, reflect, and write down your three good things and smile!

The web app can be accessed here: https://the3goodthings.org/

Michala Ritz MPH

Fred Friedman

Jon Nicolla MBA

Don Shin

Arif Kamal MD, MBA, MHS

References

1. Siija, Li et al. The Impact of Covid-19 Epidemic Declaration on Psychological Consequences: A Study on Active Weibo Users. 2020.

2. Allen, S. Is Gratitude Good For Health. 2018.

3. Seligman, M, Steen T, Park N and Peterson, C. Positive psychology progress: empirical validation of interventions. Am Psychol 2005 July – August;60 (5):410 – 421

4. Peccoralo L, Mehta D, Schiller G, et al. The Health Benefits of Resilience. 2020. https://link.springer.com/chapter/10.1007/978-3-030-30892-6_13

Monday, September 21, 2020 by Pallimed Editor ·

Monday, September 14, 2020

Moral Distress and COVID-19: Worlds Collide

by Vickie Leff (@VickieLeff)

As a clinical social worker, I am often approached by my medical colleagues asking for support and a listening ear around difficult cases, understanding their own reactions, team dysfunction, and moral distress. In the middle of this COVID pandemic, Social Workers, Chaplains, Nurses, Physicians, Respiratory Therapists, Child Life Specialists, etc. are all likely experiencing an increase in moral distress. This is due to the necessary change of focus from “patient-centered” to “community -based” approach, and resource allocation issues such as PPE shortage, health inequities, visitation limitations.

A few years ago I wrote another article about Moral Distress. Things have changed since then, compounded by the pandemic. I would like to take a moment to focus on how we can manage these complicated, emotionally charged situations during this incredibly stressful time in which we are challenged about ability, time, strategies to deal with moral distress. Moral Distress challenges clinicians to speak out, work together, and tolerate ambivalence. We must embrace the discomfort in order to legitimize the occurrence and find solutions, especially during this pandemic, when the focus of providers can be easily pulled in many directions. 

“You have to do everything to keep her breathing,” the father of a 15 year old dying of a brain hemorrhage, said to me as the Palliative Care Social Worker. Hearing the panic and desperation in his voice while knowing she would not survive was distressing. Relaying the conversation to the bedside nurse and Resident amplified the distress, as they said what I was thinking: “There is no way she will survive, we have to take her off life support.” Calming myself to be able to have a discussion about the ethics of the situation was challenging, but critical. I worried about whether advocating on behalf of the father would be interpreted as, “the social worker doesn’t get it,” and wondered if they would respect my opinion.

How can we help each other when faced with cases that cause us moral distress? What can our institutions do in response? How can we work as a team to deal with these issues when they arise?

We can remind ourselves that “When addressing moral distress, the aim is not to eradicate the phenomenon but rather to mitigate its negative effects, including preventing caregivers from feeling unable to provide compassionate patient-centered care, feeling withdrawn, unable to return to work or continue in their profession.”

Evidence tells us there are many strategies that can help on the individual, team, and organizational level. It will take deliberate intention, institutional support, and commitment.

Individual Strategies:
Moral distress is not a failing of anyone’s ability to cope with difficult cases, issues, or emotions. By definition, moral distress cannot be “fixed” with an individual effort. Collective action is needed. However, it is important to recognize when we are feeling the personal effects of distress: feelings of anger, frustration, powerlessness, isolation. Those red flags tell us we need to pay attention to what is happening in order to define interventions. Personal strategies raise a paradox. Moral distress is rooted in not being able to effect a change due to organizational barriers and policies that we cannot immediately change. This feeling of powerlessness can be personally immobilizing.

Key suggestions:
- Identify the moral distress issue (i.e. what is it about this situation that is bothering me so much? Is there an ethical question?)

- If you bring the issue to a group/team level, it can mitigate personal frustration and lead to solutions to help the pt/family and individuals. For instance, experiencing a lack of sufficient PPE can clearly create moral distress for individuals. Raising the issue with other colleagues, then bringing it to management collectively, can attend to the individual frustration. The team can begin to have discussions on a level that can affect possible change.

- Often staff will come to the clinical social worker with their case distress, needing support. We can help by differentiating between psychological stress, compassion fatigue, and moral distress – as the interventions vary. [See Sidebar]

- Accept that distress is a normal reaction to something that feels “out of sync,” i.e. out of the ordinary for you. It is critical to not internalize or blame yourself. It isn’t helpful to pathologize your reactions.

- Ask your colleagues to take time and talk about concerns, opinions in order to find avenues for safe, effective solutions. There may be no answer to a morally distressing situation.

- Identify the resources that may be available in/by your workplace, such as your EAP and - those described below.

Institutional/Team Strategies: Moral Distress demands a collective response, between the active team and/or institution. 

- Debriefings. These are scheduled or “on the fly” opportunities for colleagues from all disciplines to discuss a situation. Allowing for differing opinions and possible solutions will help. This process attends to the social isolation that accompanies moral distress.

  - It allows for a safe space for those involved to voice their concerns.
  - It works to create psychological safety
  - It can serve to democratize medical culture.

Ethics Rounds. Many situations evoking moral distress involve ethical issues. Scheduling routine ethics rounds while inviting interprofessional participation can help all of us understand complex issues, voice opinions, and create an atmosphere of safe discussion. If these kind of discussions aren’t happening, and you are not empowered to schedule them yourself, then request them.

Deliberate Interprofessional meetings. There is a lot of information about how to improve team functioning, which would of course add to the capability of teams to support members as they may experience moral distress. While there is evidence that physicians experience moral distress less than nurses and other bedside providers,4 involving all team members works to create a more capable, healthy, team. Moral distress often gets played out between physician and nurses. We must be able to have these difficult conversations in a safe way to ensure all providers have a voice.

And Finally... stop using “Hero” language. If we exalt health care providers (ourselves) to this fantasy status, we deprive them (us) of the normalcy of stress-filled reactions, asking for assistance, de-legitimizing their (our) feelings of powerlessness. As we talk about disenfranchised grief, I believe using this language, during this time, disenfranchises moral distress.

Vickie Leff, LCSW, BCD, APHSW-C is a clinical social worker at Duke Hospice and an Adjunct Instructor for UNC School of Social Work, Chapel Hill. She uses running and humor (not always at the same time!) as her primary coping mechanisms. You can follow her on Twitter

References

1 Morley G, Sese D, Rajendram P, Horsburgh CC. Addressing caregiver moral distress during the COVID 19 pandemic. Cleve Clin J Med. 2020.

2 Dudzinski D. Navigating moral distress using the moral distress map. J Med Ethics. 2016;42:321-324..

3 Dzeng E, Curtis, R. Understanding ethical climate, moral distress, and burnout: a novel tool and a conceptual framework. BMJ Qual Saf. 2018;27:766-770.

4 Fumis R, et.al. Moral Distress and its contribution to the development of burnout syndrome among critical care providers. Annals of Intensive Care. 2017;7(71).

Photocredits: @UnitedNations via Unsplash
Infographic: content by Vickie Leff. Design by Lizzy Miles for Pallimed

Editor's note: The CDC has excellent resources for managing anxiety during COVID-19 here.

Monday, September 14, 2020 by Lizzy Miles ·

Monday, August 31, 2020

Book Review: "From Here To Eternity: Traveling the World to Find the Good Death" by Caitlin Doughty

by Jared Rubenstein (@DrJRubenstein)

Caitlin Doughty is a mortician, funeral home owner, author, and activist who strives to instill more death positivity into our classically death-avoidant culture. Through her writing, website caitlindoughty.com, podcast and numerous YouTube videos she utilizes her signature voice and style to both educate and entertain. In her book, From Here To Eternity: Traveling the World to Find the Good Death, Ms. Doughty treats the author to a whirlwind tour of different cultural practices around death throughout the world. In equal parts travelogue and ethnography, the reader gets to experience eight different and unique cultural practices related to how we care for each other after death.

In the Tana Toraja region of Indonesia, there is an annual event where families exhume their mummified loved ones to spend time with them and care for their bodies. They talk to the corpses, bring them gifts, and change their clothes prior to ultimately returning the body to the family crypts at the end of the festival. One man reported, “For us, we are used to it, this kind of thing. This life and death.” In Tokyo, Japan, we are taken to the Ruriden columbarium, a high-tech Buddhist facility for storing cremated remains. A room with two thousand glowing Buddhas that line the walls floor to ceiling serves as a means for technology to facilitate the way in which people connect with their deceased. Using an electronic card, visitors are able to locate which glowing Buddha holds the remains on their loved one which then glows a different color to draw the visitor’s focus and allow connection. In Colorado, we get a glimpse of an open air pyre where cremations occur with the engagement of the local community

Ms. Doughty’s style is both alternately serious and light-hearted. She masterfully navigates discussions of the diverse cultures while at all times maintaining cultural humility. The sum is a fascinating look at eight different ways people in this world conceptualize death. Two themes that intertwine throughout the book are the commercialization of post-mortem care and the relative lack of involvement with processes related to death that is becoming more common in American culture. Ms. Doughty makes no secret of her feeling that both of these are negative adaptations in our culture and through juxtaposition with the other cultures shared in the book, makes a convincing case for the benefits of a more “death positive” culture.

I would wholeheartedly recommend this book for anyone who likes learning about different cultures of the world, particularly as they relate to death. Any fans of the book Stiff, by Mary Roach, will likely enjoy this book for its similar series of short vignettes as well as its somewhat lighthearted take on what is otherwise potentially heavy subject matter.

Through the palliative care lens, it’s easy to see how the gradual, but relentless, distancing of life and death in our American culture affects the work we do. Increasingly, death becomes something that happens to other people rather than an indivisible counterpoint to life. In caring for people grappling with their own mortality and that of their loved ones, having taboos surrounding death makes navigating end-of-life conversations even more challenging than they inherently are. I would imagine that if we could achieve the type of death positive culture that Ms. Doughty and others advocate, people may be able to view discussing their death as simply another means of discussing their life. In this way, we could more effectively navigate conversations about goals of care and advance care planning, using the idea of death as a means to frame what it means for someone to feel alive.

Jared Rubenstein, MD is a pediatric palliative care physician and medical educator at Texas Children's Hospital. You may know him from his animated videos on palliative care topics. Check them out here. 

Monday, August 31, 2020 by Pallimed Editor ·

Monday, July 13, 2020

Prioritizing in Palliative Medicine: Why Quality of Life Suffers with Racism

by Michelle Christopher @michellethedoc and Sonia Malhotra (@SoniaMKhunkhun)

The silence was palpable. Two of us continued to speak about our concerns about the way Black lives were treated and how important it was to address these concerns among us for the betterment of our patients. If we couldn’t understand this among colleagues, how would we ever understand what our patients, a predominantly Black population at a safety net hospital, went through?

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As the COVID pandemic started and we saw the first surge of patients flood our hospitals, we watched our patients, colleagues and broader community come together to share stories and experiences. After asking patients how they were coping with the anxiety that social isolation and fear of infection brought, our patients would often thank us for holding space for them to speak on these challenging times. Each week, our colleagues would gather to share the high and low points of our week, often focused on how the pandemic was affecting us personally and professionally. Our multidisciplinary team would speak openly about feeling empowered at times and discouraged at others when attempting to serve the complex needs of our patients, whose families were being ravaged by this virus. The connectedness felt with our patients and colleagues during this time was an inspiring reminder of how open communication and a sense of community is integral to sustaining collective physical, mental and spiritual health throughout a pandemic.

A few weeks later, we noticed another global response in the form of a civil rights movement for racial justice in response to the murder of George Floyd. The feeling of connectedness subsided and was swiftly replaced with tension and uncertainty of how to speak with each other about racism and how it affects the health of our patients and us.

I don’t see color,” were the words our colleague used as protests broke out about the injustice faced by George Floyd that ultimately led to his death. We knew our colleague was concerned and well-meaning when stating she saw everyone the same. However, we wanted to hear that she saw color and acknowledged this as an important part of the beauty of our individualism as well as the cause of injustices faced. It was not uncommon for us as Palliative Medicine physicians to address death. The manner in which Mr. Floyd’s death occurred, however, was a tragedy that stuck with many of us, especially those of us who identified as persons of color. To see a man treated less than how an animal would be treated made us worry about our patients, friends, colleagues and our own children who could (and probably would) one day be targeted by the systemic racism that led to Mr. Floyd’s death.

It was hard to imagine how people didn’t see color. As brown women in Medicine, we didn’t have the luxury of not seeing color – it was something we had to contend with on most days. However, these experiences didn’t compare to that of our Black friends and patients who experienced far greater injustices due to their color. These experiences included one of our Black friends carrying her badge and stethoscope everywhere so if stopped by the police, they knew she was a working professional and didn’t assume otherwise. Another of our colleagues in Medicine, a young Black man, often spoke about his experiences with being pulled over by police and having a gun pointed at his head. The luxury afforded to our white colleagues was not one that persons of color had – the ability to not see color. And as we looked at our colleagues during that conversation, we noticed the only people speaking in the room were those who identified as persons of color.

It made us realize as physicians in one of the largest Palliative Medicine programs in the Deep South, that we needed to do better. EVERYONE NEEDED TO DO BETTER. As Palliative Medicine clinicians, we pride ourselves on communication skills and quality of life. How could we attend to this with our patients if we were not attending to this in our own backyards and with our colleagues? Seeking to understand the disparities faced by our own colleagues could only help us understand some of the disparities faced by our patients including lack of access to opioids, maltreatment when seeking opioids, medical mistrust which often led to prolongation of interventions not promoting quality of life, a reluctance to seek medical care and often a reluctance to seek hospice care when appropriate.

The prospect of discussing racism with our colleagues and patients can be daunting. However, for those of us practicing Palliative Medicine, we are no strangers to having tough conversations. In fact, we can utilize Palliative frameworks to approach conversations around race and inequity. Some steps to take toward this include:

1) Asking permission to start a conversation about racism, an often triggering or uncomfortable subject for many.

2) Offering a safe space for patients to share how racism might be affecting their access to healthcare and quality of life including physical and/or mental health.

3) Providing space for colleagues to share how racism has impacted their own personal and professional lives.

4) Normalizing conversations around racism for multidisciplinary teams in the contexts of collaboration and professional growth and for patients in the context of psychosocial stressors.


Starting these important conversations within our teams can help us better understand how to align with our Black colleagues to change a system that has not historically welcomed nor encouraged their professional upward mobility. Similarly, this open communication with patients provides opportunities to improve the medical and psychosocial support we as Palliative Medicine teams can offer our most vulnerable patients.

In these unprecedented times, we as Palliative Medicine clinicians have a unique opportunity to utilize our communication skills to lead discussions on racism for our colleagues and patients. Similar to how our field prioritized serious illness and end of life care, we need to prioritize changing patterns of silence and inaction that have led to the current injustices and health disparities our Black/Indigenous/Persons of Color (BIPOC) colleagues and patients are facing. It is time for us to collectively use our voices, our time and our training to unite in support of our patients and colleagues and to proclaim Black Lives Matter.

For more reading material, the following sites have excellent information:

https://www.nationalpartnership.org/about-us/racial-equity/racial-equity-reading-and-learning-resources.html
https://www.racialequityinstitute.com/rei-blog

Michelle Christopher, MD is a palliative medicine physician at University Medical Center, a safety net hospital in New Orleans, and an Assistant Professor with Tulane University School of Medicine. She enjoys cooking Sri Lankan food, exploring the cultural and culinary wonders of New Orleans, and traveling.

Sonia Malhotra, MD, MS, FAAP is Director of Palliative Medicine and Supportive Care at University Medical Center, New Orleans and Tulane School of Medicine. She loves cooking, reading and the arts which include a passion for dancing. In her past, she was Captain of her college’s Bhangra and Hindi Film Dance teams.


Monday, July 13, 2020 by Pallimed Editor ·

Saturday, May 30, 2020

I see you. I'm grateful.

by Holly Yang (@hollyby)

Thoughts as I drove to work at the hospital today:

For people and families who stay 6 feet away and wear a mask, buff, or bandana when they work out near others, enjoy busy outdoor spaces, or walk their dog, I see you. I’m grateful.

For grocery, retail, postal, delivery, restaurant and all other essential workers who take care of us with careful hygiene, clean spaces, and by showing up and being professional despite encountering lots of stressed out people, I see you. I’m grateful.

For good citizens who are kind and respectful to grocery, retail, postal, delivery, restaurant and all other essential workers, and those who stand with them against abuse, I see you. I’m grateful.

For people who check in on their friends and neighbors who are high-risk for COVID, or support those who need help due to illness, financial distress, mental health issues, or all of the above, I see you. I’m grateful.

For parents trying to work, teach their kids, and provide a safe and happy place for them despite the disruption of the pandemic, I see you. I’m grateful.

For those of you who have learned how to bake bread, planted a garden, created art, performed music, and found small ways to restore a sense of expectant hope in spite of the chaos, I see you. I’m grateful.

For those of you who are graduating, who are starting a new job or making a pivot, or embarking on anything new in this difficult time, I see you. I’m grateful.

For those of you who volunteer at food banks, deliver food to the homebound, donate blood, foster kids, support nonprofits, participate in research, help animal rescues, or find other ways to give despite the uncertainty in your own life, I see you. I'm grateful.

For first responders and people who work in hospitals, nursing homes and care facilities, hospices, and people’s homes… for caregivers of all kinds who risk illness to continue their critical role, I see you. I’m grateful.

For those speaking up and advocating for communities of color and residents of nursing homes who have experienced the disproportionate burden of illness and death during this pandemic, I see you. I’m grateful.

For the broken-hearted who are separated from loved ones, those who worry for the sick, and people who grieve those who have died of COVID or other causes, I see you. I hurt with you, and hope you find comfort.

For those who feel hopeless, guilty, fearful, angry, or who can’t sleep because of the stress of illness, loneliness, job loss, financial difficulty, or the deep uncertainty we live in, I see you. I hope you find peace and support.

For everyone who just wishes things were “normal” or at least less uncertain, and who feel restless and frustrated, I see you. I hope you discover ways to find joy while keeping our communities safe.

For all of you doing the best you can each day to get by with compassion for yourself and others, who make mistakes and try again with large or small selfless acts for the good of our community, our nation, our world, I see you...and I am so incredibly grateful.

Originally published on Twitter and reprinted here with permission.

Find more posts by Holly Yang on Pallimed here.

Holly Yang, MD is a palliative medicine physician at Scripps Health. Passionate about hospice and palliative care, communication skills, medical education, and increased access to health care

Saturday, May 30, 2020 by Pallimed Editor ·

Thursday, April 16, 2020

National Healthcare Decisions Day in the Era of COVID

by Emily Riegel (@emriegel)

“Why did I keep stressing what was and was not normal, when nothing ... was?”
-- Joan Didion, The Year of Magical Thinking

“Certainty? In this world nothing is certain but death and taxes.”
-- Benjamin Franklin

In normal times, under non-pandemic circumstances, yesterday being April 15 would have marked the United States’ traditional Tax Day. With one certainty, taxes, already rescheduled, we know that we are not in certain or normal times. This year, the novel coronavirus pandemic elevates the immediacy of that other certainty: death.

Since 2008, April 16 is designated as National Healthcare Decisions Day (NHDD). According to The Conversation Project, “this day exists to inspire, educate and empower the public and providers about the importance of advance care planning.” It is a day that people are encouraged to think about things such as living wills, or advance directives, or durable power of attorney. It is also a day for people to simply begin the conversations about how they want life to look even in the face of death.

It is in the particulars of the way that the novel coronavirus behaves, infects, and manifests in us that further raises the urgency to pay attention to advance care planning. By now, it has been widely reported that this virus can strike people of any age, and create a critical illness scenario in an unexpectedly short timeframe. People have heard about ventilators, life support, acute respiratory distress syndrome (ARDS), and other aspects of medicine often reserved for the intensive care units and the people who work in them. People have heard about families not being able to physically come to the bedside to visit their ill or even dying loved ones. People have heard about potential ventilator shortages or lack of intensive care resources needed to try and offer life support and stave off the effects of this virus.

People have heard a lot about this virus, and a lot about its dangers, and many feel stricken powerless. “There’s nothing I can do,” is a thought that enter people’s minds and, like the inflammatory cascade the virus sets off in the lungs, a cascade of anxiety or other emotions is set off.

What if there is something you can do, though? What if, despite all of your hand washing and mask-wearing and social distancing you still get sick. What if, despite access to the best health care and medical professionals you still get even more sick.

This is where many people will stop thinking further, will look away from this thing that is so big and so scary, and wrap themselves in a sort of denial.

But this is right where you can also win back control.

Yes, despite all the things you think you are doing right and all of the best medical treatments available to you, there is a chance that you might get coronavirus and be one of the people whose body will not outlast it.

Take a pause here and look that right in the eye. Let yourself sit with it. Let yourself feel that sink in, as scary it feels.

Now, step back from it, and realize that right now, in this moment, you are okay. You are alive.

And now, knowing that this virus may be your life’s end, but also knowing that you are currently well and able, what you are looking at is the space and time of possibility. The possibility to discuss and determine what matters to you if your life might be limited and how you would want those last days or hours to be.

At times, this is a very practical set of decisions: do I want to be on life support until my body stops despite everything being done to try and save it, even if it might cause discomfort or distress? Do I only want life support long enough for my body to show whether or not it can overcome and recover from this virus, but if my body is telling my doctors and nurses it will not recover, then let the life support stop so I may exit in as natural a state as possible? Do I not want life support started, at all, so that I may be as comfortable and in as natural a state of being as possible should I exit this world?

Sometimes these decisions become more layered with personal practicalities: Who do I want to be at my side if they only let one person come to me as I die? How do I want my family to be made aware of my condition, and do I want to have them virtually present on a phone call or video call if I am dying? What things do I want to make sure people know – the passwords, the account numbers, and also the parts of love and forgiveness and acceptance I want them to have of me?

These aren’t easy questions to answer, and the answers are never the same between any two people. The answers are often not even the same for the very same person depending on the circumstances and any other conditions or factors that might influence their likelihood of recovering. One person might say, “if I ever have a severe head injury I would not want to be kept alive with life support, but if I need life support to try and survive coronavirus then I want it used until the very end.”

People might, perhaps even ought to, consider making one set of plans and directives “in the event of coronavirus,” but another set for “all the other things that might befall me.”

There is also the matter of practical limitations that this virus puts on options. We know that large rooms full of family members surrounding a bedside, singing hymns or laughing at family stories – which all of the times I have witnessed I have said “this is a beautiful way to die—are simply not going to be possible if the culprit of coronavirus. We know that funeral traditions and ceremonies are not going to be the same. We know that this virus will take lives, and will rob people of the idyllic death and their families the gentle closure that we all hope for.

Yet, there are still ways to try and salvage something peaceful and loving from this death. Some people might decide that, rather than wait for their breath to be taken and their time to be short to try and share their feelings with people they love, they might write letters now (here’s a secret: letters will keep, and regardless of when they must be read, they will always be treasured). They might make phone calls now, to say something even as simple as “I need you to know I love you, and I always want you to remember that.” (here’s another secret: loving words always keep in the heart, and will always be treasured as well).

Author and physician Ira Byock has offered a simple set of “The Four Things That Matter Most” to provide a framework that simply but full encompasses what we all want to hear and what we all want to say: Please forgive me. I forgive you. Thank you. I love you. Even if you say this to someone, with no other explanation, they will remember it and cherish it.

Other guidance and resources exist for walking through these decisions. The Conversation Project (www.theconversationproject.org) has a number of tools, ranging from ways to get conversations started to actual documents and state specific information. They have added COVID (coronavirus) specific pieces as well.

The fact is, despite it being the certainty we all have ahead of us, no one wants to think about death. The fact is also that, despite what Mr. Franklin said, there truly is only one certainty and none have yet found a way to elude it, regardless of how much they try to deny it or avoid it or pay or pray or delay their way out of it. It is this ominous reminder of our fragility and mortality that is helping unsettle all of us right now, but there is also still opportunity for finding peace now and in the longer term by addressing advance care planning. It is a gift to yourself, and an act of love to offer your family and the people who care about you who will still be able to know they are following your wishes, eased of that burden, whenever your death arrives.

Emily Riegel, MD, is a physician who spends a lot of time thinking about stuff.

Thursday, April 16, 2020 by Christian Sinclair ·

Wednesday, March 18, 2020

Delivery of Effective Telehealth



Palliative Care Colleagues,

At MGH, we have been learning a great deal about the delivery of effective telehealth in the palliative care setting through our multi-center PCORI REACH PC trial of standard in person palliative care vs telehealth palliative care. We are happy to share with you some of what we have learned in case it may be useful to you and your teams who may be asked to conduct virtual visits in the context of mitigation related to COVID-19. We have found that telehealth can lend itself well to the important work that we do. Below you will find some of the resources we have used to train and support clinicians in this study. Feel free to use them in anyway that would be helpful to you.

REACH PC April Newsletter

Telehealth Visit Outline

Vicki Jackson, Jennifer Temel, Joe Greer and the rest of the REACH PC team

Wednesday, March 18, 2020 by Pallimed Editor ·

14th Annual Pallimed Party (aka Un-Meeting)

by Christian Sinclair

Update 3/19 1300 CT - Here is the link to sign onto the Slack platform for the Pallimed Un-meeting. It is open to all, so please remember it is a semi-private (aka semi-public place.) Yes you can share with other hospice and palliative care colleagues. The official hours are 5p to MN ET, but people may be in there before or after, so feel free to chat with them. Zoom video chat, and games will be later in the evening. Schedule forthcoming.

Old post below

Well, I know we all wish we were in San Diego learning from each other, seeing old friends, and making new ones, but the fact is we are not doing that. I still want to honor the spirit of the annual Pallimed Party, even though throwing a party does not feel like the right optics. So let's call it an un-meeting.

So how will this work? I'm not quite sure, so bear with me. It is going to be kind of experimental so if being an early adopter is your thing, I totally get it if you are out. But a small group of us are going to try to do something virtually. It will primarily consist of the online platform Slack and Zoom, with a couple of other add-ons. So how do you sign up? Well we are still working that out, but I wanted to get this out to the people on the email list today. So bookmark this page and keep an eye on our accounts on Twitter and Facebook for more info.

And check out #hpm chat tonight on Twitter at 8pm CT if you need some bonding with colleagues right now!

by Christian Sinclair ·

Tuesday, March 17, 2020

The Voice and Role of Palliative Care in the Era of COVID-19

by Suzana Makowski (@suzanakm)

The guidelines outlined in the recent letter co-sponsored by Pallimed and Geripal serve as important reminders of key messages for clinicians: social distancing, handwashing, use of personal protective equipment to help flatten the curve of viral spread, adhering to protocols about screening, testing and even triaging.

I would advocate for another layer of engagement in this effort. Palliative care as a specialty is uniquely positioned to address the people who are likely to be disproportionately affected by the disease: the chronically ill and the aged. After all, this population is the demographic adult palliative care clinicians see frequently.

There is a likely double risk to this population – first from the virus itself. While the overall mortality rate of COVID19 is likely to hover around 1-2%, the mortality rate for people over 80 has been reported to be 14.8-21.9%, for patients with cardiovascular disease 10-13.2%, diabetes 7-9.2%, pulmonary disease 6.3-8%. The second risk is from the triaging that will occur if indeed the burden to the US health system is even half of what is predicted.

In this second scenario, hospitals, ICUs, will be overflowing with cases, as reported currently in Italy. The number of hospital beds per capita in the US is far less than those in many other countries. In Italy, ventilators are considered to be gold. Triaging is occurring, with an aim to prioritize intensive care, ventilator utilization for patients most likely to survive the infection, rather than those who have the greatest likelihood of a poor outcome. News articles are telling stories about older people and those with chronic conditions, being sent home. The implication is they are left alone, without resources.

As Dr. Kathy Kirkland, Chief of Palliative Care at Dartmouth Hitchcock Medical Center notes, “decision support both for individuals and also for the organization if they are in the position of deciding how to allocate scarce resources is critical in times like these, and making good decisions in the face of uncertainty is one of our areas of expertise.” There are people who will choose not to be intubated, and they likely need to know , what might they can expect. ‘No care’ should not be their perception as the ‘other option’. As palliative care experts, it is incumbent on us to define what the alternative will be.

Social distancing means providing alternatives to testing in hospitals and getting supportive care in hospitals. Visiting nursing agencies around the country are training nurses to test patients in their homes. Supporting these agencies, as well as engaging hospices to help optimize symptom management at home is crucial.

Aligned with all of this, ensuring patient’s care wishes are known and documented is perhaps more critical than ever. A fear I have heard is the perception that discussing code status will equate with no treatment or triaging out of care. I understand this fear. I remember recoiling with horror upon reading the New York Times Magazine, and then hearing the keynote at AAHPM annual assembly outline the horrific and difficult decisions made at Memorial Hospital post Katrina. Patients with DNR orders left aside or euthanized. Thankfully now POLST orders allow for distinction between code status from intensity of treatment preferences. And comfort should always be provided.

Our voice about how to help make these decisions, along with ethicists (many of us are both) can change the dialogue of triaging this pandemic. We can honor a patient’s wish to be DNR with intubation by asking of their wish, and in doing to perhaps help alleviate some of the anticipated strain on access to ventilators and non-invasive ventilator support, while actually also ensuring the patient still receives care and treatment.

Palliative care, often in partnership with the work of home health agencies and hospices is leading the innovation in telehealth to enhance care at home. Already, in the early weeks of March there has been an upswing in use of telehealth among palliative care clinicians. Patients are asking for alternatives to clinic and hospital visits – wisely, and our field is responding.

We learned at CAPC in the fall of 2019 about colleagues using encrypted conference lines to facilitate the visits, even if formal telemedicine programs are not available to a group or institution. Honestly, we have for years held family meetings where family members who are out of state or out of country join the meeting via cell phone, FaceTime, WhatsApp, Skype, or another similar program. Now the process is going to be more formal. What patient encounters can we do in this manner, compared in in the patient’s room? In some ways I can engage in a more personal way using video conferencing where my face, my expressions, my non-verbal cues can be seen rather than my body hidden from within the confines of an N95 mask and goggles, or powered air purifying respirator (PAPR).

Patient education and caregiver support is another area of our expertise. But now we need to educate and support more people. Our specialty has also been a leader in use of social media for collaboration and education of peers. How can we build on this movement and provide a platform to share best practices with lay caregivers, as well as the aides and nurses in long term care facilities who have not learned the tricks of our trade?

You know all this – but what do we do differently?

For all the strengths of our specialty, there is one area we are generally no too familiar with: the step to be proactive. We tend to be the specialty to respond when all else fails. But now, we have to step in early.

To flatten the curve of this disease, we have to use all these tools and skills in the following strategic way by partnering with our organizations, regional, and state task forces to:

1. Define processes and interventions to keep people home who would prefer to avoid hospitalization.

- POLST allows patients to choose to receive full interventions, or some, or comfort. It is not about absence of care. How can we help patients make their wishes known now, without fearing being triaged away from care they would want?

- We must support VNA and hospice agencies in their efforts to screen, test, and treat patients at home. Partnering with them in expanding telehealth visits, patient and staff education about symptom management, and other creative initiatives should be considered.

2.Being a strong voice, along with ethics, in defining and clarifying the processes of triaging patients when resource allocation is slim.

- At the bedside (or via telehealth) – we are well suited to facilitate these discussions, and support families through the tough choices, especially if a true choice is available.

- In the boardroom – we cannot allow the alternative to ICU to be ‘no care.’ If a patient with a chronic illness is dying of COVID19 complications, we know how to alleviate their breathlessness, nausea, fear, abdominal pain better than just about anyone. Those protocols need to be at the table.

- Perhaps the triage can happen before the hospital, in the community, with optimal care there. We need to be the interdisciplinary voice to facilitate the possibility of this partnership and coordination of care. We do it every day in discharge planning. Now it is time for us to bring it to the intra-organizational level.

3. Use our foundational principles.

- We have multiple frameworks for dealing with crises – Maslow’s hierarchy of needs, biopsychosocial approach, 8-domains from EPIC, etc., and a recognition of as well as embedded process of interdisciplinary collaboration like few other groups in healthcare to address not only the medical and physical needs of patients and families, but the full catastrophe of this pandemic.

- We have the voice and practiced reflect to collaborate with people who see challenges from differing points of view presenting a variety of solutions.

- We can help our health system understand how to collaborate with the wisdom embedded in our communities – not only the doctors, nurses, social workers, and chaplains we often work but even beyond. It is time to expand our interdisciplinary team. How wide? It’s your decision, based on your community.

We are called to step up, not merely to participate in the rules and recommendations recommended by the epidemiologists, infectious disease experts, and others but to come to the table with ideas and perspective to mitigate the extent of the possible challenges and alleviate the suffering our communities are about to experience.

Lastly, I do wish to address another concern. Like just about every physician and nurse, healthcare professional, we are called to step in when times get hard. There is a temptation to be a hero or even martyr of some sort. We like to be close to our patients, to hold their hands, to share a hug when needed. But now is not that time. We have to find other ways of leaning in, lending strength, being present with, other than physical closeness. For many of us, this will be hard and even feel as though we are failing our patients, or part of our own sense of purpose. The greater good must prevail right now. Remember music can touch a heart from a distance. Your skill in listening and being present can also transcend distance.

Suzana K. Everett Makowski, MD MMM CPE FAAHPM FACP comes back after a long hiatus to contribute to Pallimed again. She currently is Chief of Palliative Care at Exeter Health Resources, a community health system in New Hampshire. Having grown up internationally as a citizen of Brazil and the US, she has a passion for inter-cultural communication and collaboration in palliative care. Other areas of interest include complexity science and positive deviance, lean and culture change, leadership and innovation.

She can be found on Twitter @suzanakm


For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
For more posts by Suzana Makowski, click here.
Check out the Pallimed COVID-19 Resource page here.

Tuesday, March 17, 2020 by Pallimed Editor ·

The Dizzying Experience of Healthcare in the Time of a Pandemic

By Lyle Fettig @fettiglyle

Check out the Pallimed COVID-19 Resource page here. - Ed.

I love the letter co-published by Pallimed and Geripal about COVID,and you should read that too. As an erstwhile (for now) Pallimed contributor, I thought I'd toss in my two cents with some additional thoughts/reflections based on week 1 of preparing for the COVID pandemic as a palliative care physician.
Over the last week, I've operated mentally in most of these lanes:

1. Primary prevention and public health: Through extensive advocacy for social distancing and widespread testing. I have talked about it with my patients and my own family and friends. This also included persistently calling governmental officials, pulling my sons out of school, writing letters, and re-entering social media after an over two year hiatus

2. Assessment of patients with suspected COVID-19, like a person I've been following for 4-5 years who had pneumonia last year and called with complaint of a cough. The usual clinical reasoning of the scenario was complicated as I tried to balance the desire to get him evaluated with the public health considerations.

3. Management of mildly ill confirmed cases and mitigating the public health risk. Haven't dealt with this yet. Just waiting for the first call on one of my high risk clinic patients to have this. I know that even if they have mild symptoms, they might progress to lane 4. It feels unfair to think that an emerging infectious disease would take any of their lives.

4. Management of seriously or critically ill patients who might die. We've spent a lot of time with our critical care colleagues over the last week, swiftly trying to figure out what we would do with a "surge" and how it would change our usual collaboration, which is robust and well established. Enter the age of inpatient teleconsults, including a first: A surrogate asking me if he could email me a photo of himself so I could see what he looks like.

5. Worst case scenario of resource allocation issues: We hate talking about this, but it might happen, and we have to face it and be prepared.
It's dizzying to think about all of these lanes, on top of the usual issues our patients and teams face. Lane 4 and 5 are scary enough to serve as motivation to put a lot of attention into lane 1. Even though our ICU is a place with plenty of windows and sunlight, for some reason, I imagine lane 4 and 5 as a dark windowless place without walls, just a massive ward full of despair. It's enough to move any of us to tears and action.
I've found it helpful, in conversation about the pandemic, to identify which lane we are talking about at that moment, especially with respect to lane 4 vs. 5. In lane 5, there will be factors out of our control that determine whether patients get what they need. Routine palliative care practice (fueled by extra coffee and fewer administrative meetings) will serve our patients and their families well. Under any circumstance, we will do what we can to support shared decision-making, even if there are factors out of our control (as there always are).

Here are a few thoughts as we enter the new week:

Let's keep advocating in lane 1 while we prepare
It's surreal to see cars on the road and just feel, well, disturbed. After I finished pumping gas today, I wiped the handle off with Chlorox and went onto the next pump to wipe that one down too. (What have I become?) We are still woefully under testing for SARS-CoV2. Still some people think this is a nothingburger. Continue to educate patiently and figure out what's hardest for them about social distancing, and empathize. I'm struggling with it. I've been avoiding touching my family, changing clothes in the garage before entering, etc. It's for the birds.

Remember the concept of mortality salience and terror management theory
I'm scared. For myself, for my own health. It's tempered by probabilities, but you know, anecdotes. I'm scared for my family's health, and my parents are hunkered down, not even allowed to touch their mail. For the health and comfort of my current patients and their families. For the suffering that our new patients in this time period of isolation. Loneliness is already an epidemic, and the pandemic will amplify this. "Comfort and company" is essential to the end of life experience, as one of my mentors Greg Sachs likes to say. The thought of having a large number of people dying in uber-isolation, swimming in PPE, without their families.

I know I'm not alone. I've talked to colleagues about the three levels of fear: for our patients, personal, and professional. Everyone is walking around with extra fear.

What does evidence for Terror Management Theory suggest about what this will do to us? When people are confronted with their mortality, there's evidence to suggest they act in heightened ways consistent with their own values. (There was the famous study where judges handed out worse punishments for criminals after being reminded of their own mortality) It may make us more protective of those values as well. In stressful times, there's more likely to be tension about little things. Pause and make sure you're not actually on the same page about the values. In times like this, there may be uncertainty about the best means to accomplish certain goals. It helps to solidify agreement about the goal or value itself. "What we both value is..." This is the VitalTalk "align" statement from REMAP. It works for us as well as our patients and families.

Don't let perfection be the enemy of the good

Remember the secret sauce of palliative care

What's the secret sauce? There is more than one ingredient, but in addition to all the skilled professionals from various disciplines who bring compassion and persistence to care of individuals, I think the sauce is Relational Coordination. Timely, accurate, frequent, and problem solving communication that is oriented around shared goals, shared knowledge, and mutual respect. Lean on these in the days and weeks ahead: With teammates, colleagues, hospital leaders, and most of all, patients and families.

Relational coordination defines the collaboration between palliative care and critical care at many places, and I can't imagine my career without this collaboration. I have a deep admiration for the critical care physicians I work with, many who have become friends over the years, sharing in the care of some of our sickest and most vulnerable patients and their families. Much has been written about avoiding war metaphors (with cancer and such), but I'm setting aside my pacifist ways for this virus. We're going to war now, locked arm and arm against this tiny alien and the cascading effect on individuals and society. The relationships built between colleagues will help us find our way through.
Let's save as many lives as we can and palliate this broken world along the way.

Flatten the curve, but when it hits, charge up the hill.

Source for image 1: Meredith MacMartin
Source for image 2: https://heller.brandeis.edu/relational-coordination/

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
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by Lyle Fettig ·

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