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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.

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by Lizzy Miles (@LizzyMiles_MSW)

No one should ever be “put” in a nursing home. You might agree with this statement because you don’t like nursing homes, but that is not what I’m saying. The word “put” is offensive when you are describing a person, unless you are talking about putting a 3 year old in the time out corner because he colored on the walls.

I would like to make the argument that no adult wants to be ‘put’ anywhere. You put dishes away, you do not put people away. When we are facing a situation in which the care needs exceed the family member’s ability, there are times where the best option is for the elder to move to a safer environment.

Let’s look at these two scenarios:

Daughter puts mom in a facility because mom is too much of a burden for daughter to take care of at home.

Or

Mom moved to a new community in which there were nurses who could take care of her health care needs. There are chefs who make her meals and caretakers who help her with her activities of daily living. She has opportunities to make new friends, play bingo, listen to music, and arrange flowers. Daughter’s time with mom can be spent sharing memories, watching movies and working on jigsaw puzzles together.

Same scenario. Which one feels better to you?

We do not want to say to our loved one, “You are too much for me.”

What we want to say is, “I want you to have the best care possible and I believe this choice will be better for both of us. I love you and I will continue to spend time with you.”

I should know. I was the daughter. I was an only child in my late twenties when my mom’s sister died. My aunt had lived near my mom and checked in on her daily. My mom was in declining in health and not really doing the best job caring for herself. She wrecked her car and wasn’t eating well. And suddenly I was the one responsible for her and I lived 90 minutes away. I was still working full time and tried to take care of things long distance, but I didn’t feel it was working. There was no end in sight either - though she was declining, she wasn’t terminally ill.  After touring seven facilities, I found one that I liked and brought her to see it. She liked it and moved to an assisted living facility in my city that would be able to care for her until the end of her life.

As it turned out, it was the best decision I could have made. The facility staff welcomed her with open arms and she thrived. She lived there six years and was the happiest I had known her my whole life. During this time my mom and I even became closer than we ever had before.

There is no happy place. Happiness is an attitude.

We’re not supposed to have favorites in hospice care, but a hospice patient who was on service for a couple of years just recently died. I’m really going to miss her. Every time I saw her she was always smiling and expressing gratitude. She was the happiest person I had ever seen in a facility, including my mom. She dressed to the nines with all of her bracelets and necklaces and gushed about the staff, the activities and even the food. As you can imagine, when facility staff were giving tours, they always introduced her to the visitors. This resident also had very attentive staff because she was such a pleasure to be around. Her joy for life was contagious.

Yes, a move to a nursing home is hard, but most patients adjust. In my experience, those who don’t adjust are likely to be unhappy in any setting.  There are residents who don’t leave their room at the facility – but I bet you they never left their house either.

One final story. A patient who had lived at home ended up moving to a facility due to increased care needs. I visited her a week after she had moved and I personally felt sad that she didn’t have pictures or personal items. She, however, looked around the room devoid of belongings and said, “maybe this is how things are supposed to be. Maybe we don’t need a lot of stuff.”  I had no idea she used to be a hoarder. She didn’t know it, but she was embracing the new minimalist trend.

We decorate rooms and put pictures on walls at the nursing home because we are the ones who are still attached to belongings and things. Part of growing older is shedding the past and the stuff. If you ask any resident in a nursing home of what they want most, it is not their china or their figurines and sometimes not even their pictures, but rather to be with those they love. Yes, there are those elders who built their home with their bare hands and they are attached to “place” but most of the time, it ends up not being about the place but the fear of being forgotten. Consider this though: in a facility, elders have much more human interaction and attention to emotional needs than they do at home with a single exhausted caregiver who is at their wits end.


Love and companionship can take place anywhere. 

Hospice personnel can help family members have these conversations. We lead the way by how we frame it. We can talk about anticipated care needs and why moving may be the best option for care. We can share stories about attentive, compassionate care and the activities that the facility has.  We can remind the patients and families that we’ll be there with them too.

Language matters. Words matter.

Let's talk about RESPITE

If you’re talking about a temporary respite with a patient, how do you bring it up?  Is it because the caregiver is exhausted? How would you feel if you were the patient and someone told you that you were “exhausting?”  Imagine hearing, “I need a break from you.” The caregiver needs to be firm with the patient about their needs but they can do it in a way that doesn’t come across in a way that makes someone feel like a burden.

Consider saying something along the lines of “I want you to have the best care possible and right now I don’t feel I am able to do that for you. Please - I would like to take a few days to rest and recharge my batteries. It will only be until x day and then you will be back home again.”

If the respite is for night time relief and the caregiver is planning on visiting during the daytime, say so. “I’ll come visit you so we can catch up on the news/family/whatever.”
When families are in the midst of caregiving, we can sometimes forget about the relationship we used to have with the patient. If we take time to consider the way in which we talk about caregiving needs with the patient in a way that demonstrates the love that we have, we may be able to alleviate some of the sadness or feelings of abandonment.


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States.
photocredit:
hands Photo by Rod Long on Unsplash
plant photo by Sarah dorweiler on Unsplash
all other photos via author

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by Drew Rosielle (@drosielle)

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

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

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

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

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

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

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

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

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

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

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

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

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



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



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

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

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

We’re the problem, not the families.

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

I get it; this is complicated.

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

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

For more Pallimed posts about journal article reviews.
For more Pallimed posts by Drew 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.

References

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

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by Lizzy Miles (@lizzymiles_MSW)

As with all my articles, I need to acknowledge that I’m still learning always.  Because of the nature of my job as a float social worker, every patient and family is new to me every day. I have to rely significantly on others’ charting and I have to make sure my own is tip top. For patients who are new to hospice, I make it a special point to learn the nuances of their family dynamic so that I can pass the information on to the care team. There is a fine line between with getting the details and not getting mired down in detail. Ultimately, the key is really paying attention to language.

These days it is common to work with families in which both the patient and spouse are on their second marriage and both have children from previous marriages. Blended families can be beautiful as they can represent a fractured family becoming whole again in a new way. Remember the Brady Bunch? Double the family, double the love.

However, when blended families have conflict at the end of life, it can complicate everything from caregiving to funeral planning.

ON LANGUAGE AND RELATIONSHIPS
For blended families, there are “technical” relationship identifiers and “perceived” relationship identifiers. You may wonder why you would need to clarify the difference, and there are a couple of different reasons.

1.  If there is no designated health care power of attorney (POA), state laws for surrogate decision-making focus on biological relations, and by default step-family are further down the line or even excluded. Even if there is POA, many funeral homes often depend on next-of-kin hierarchy.

2.  The step-relationship may come in to play in regards to caregiving support these family members choose to offer.

Intervention: Be cautious when referencing a relationship as it was previously identified in charting. Other clinicians don’t always make the distinction.

The clinician may have charted “Dad” when the family member is actually “stepdad.” Alternatively, the clinician may have charted “step-sister” without acknowledging the family uses the “sister” label.

I had one daughter who referred to both her dad and her stepdad as “dad.”  No other clinician understood that the primary caregiver “dad” was technically a stepdad.

Perception of “step” may vary within a family. Sometimes feelings about relationships are not mutual.

The age of the sibling might affect their use of the label. I’ve seen older children from the first marriage identify younger step-siblings with the “step” label, while younger children only ever knew and talked about the older ones as “siblings.”

On the subject of grandchildren, a daughter-in-law once “assisted” my conversation with a patient by asking how many grandchildren she had. I never ask the question because numbers challenge the memory. The patient gave a number that only reflected her biological grandchildren which angered the daughter-in-law who had children from a previous marriage. I then was a helpless witness to a 20 minute argument in which the patient was adamant that the step-grandchildren didn’t “count” and the daughter-in-law was visibly upset.

A step-mom may consider her step-children as “children” but if the children are still connected to their biological mom, there is a possibility that the feeling is not mutual.

Intervention: In your own documentation, be clear and distinct with family preferences for labels. 
For example, you could say something like, “The youngest two are technically step-sisters, but family members do not use the “step” identification.”

Be sure to also chart any sensitive areas on the topic, as with the example about the grandmother.

Intervention: Use language the way they do. 
If you’re talking to someone who clearly delineates within the family, reference “step-sister” or better, yet, use the person’s name. If a child thinks of their stepdad as “dad” then use the word “dad.”

ON CAREGIVING AT HOME AND BLENDED FAMILIES
One cannot make assumptions about how a person will be a caregiver based on their familial relationship to the patient. In a best case scenario, we would see the whole family supporting one another and equally sharing the burden. Unfortunately this is not always the case. A few years ago I wrote about how to navigate working with a reluctant caregiver. At the time, though, the dynamics of blended families weren’t completely on my radar.

One blended family challenge is the situation in which a patient is part of a couple that is on their second marriage and patient and caregiver each have children from prior marriages. You could have a combined total of ten children and still no one helping the spouse. The children of the caregiver don’t feel an affinity towards the patient, and the children of the patient do not feel that they need to be the ones to relieve the caregiver. These may seem like stereotypes. They are, and they do not apply to all blended families. This article, however, is addressing situations in which the family system is not working smoothly and is an attempt to explore how we, as professionals, approach these situations.

Alternatively, in some blended family situations, it is one or more of the children who are the primary caregivers and the second spouse is the one who is the reluctant caregiver.
While you want to have an awareness of family dynamics, you do not want to have a position on them. It would be very easy to side with the caregiver who is involved and complaining about others who are not involved. But you don’t know the history of the family and their relationships.

Intervention: First of all, stay out of the mud slinging
Provide supportive listening, but do not take sides. Who is right or wrong is not our place to say.
Don't say, “What a jerk!” Do say, “It sounds like you’re disappointed that he is not more involved in the care.” Document objectively any family dynamics that could affect care.

Intervention: Be solution focused
While we want to provide supportive listening to a family member who is frustrated with a caregiving situation, we also need to redirect focus to the reality of the situation at hand and what we can actually do to ensure the patient is getting good care and the caregiver is supported.

Intervention: Complete HCPOA
If the patient is still oriented and does not yet have a health care power of attorney, encourage them to complete this document. Ask them who they want their primary decision-maker to be. Do not assume it will be their spouse. Be clear with patient and family that without the document, though, the spouse is the primary decision maker in the event patient is no longer able to speak for themselves. When a patient has only been married a few years or less and the children are well into middle age, the spouse’s authority can sometimes be a point of conflict.

Intervention: Have a family meeting focused on goals of care
If family members are involved but disagree on care, encourage everyone to get together at the same time to discuss goals of care. This should be centered on what the patient wants. In an ideal world, the meeting would involve the patient, the whole hospice team and all involved family members. For families providing care at home, at a minimum, the nurse and social worker should both be there. There might be medical questions for the nurse to answer, and social workers have more training in group dynamics and facilitation.

Intervention: Assist with communication and language
Assist the primary caregiver with phrases that he or she can use to ask for help. Sometimes the family can get so caught up in the dynamics of a relationship that they don’t know how to ask for what they need. They may have a habit of accusing someone of not being around enough, but complaining in itself isn’t effective.

I always tell caregivers that it is easier for others to agree to help them if they are specific in their request. I would work with them to find out what their biggest needs are and then help them phrase the “ask.”   I might suggest they say something like, “It would be helpful to have a weekly two hour block of time that I can count on to run errands. I don’t feel comfortable leaving [patient] alone. Is there a time when you might be able to come over to relieve me?”

Advice for you: Help with what you can, let go of the rest
As you are working with challenging families, you may find yourself frustrated by situations that you can’t fix. If this happens and you find yourself having an adverse reaction to a family situation, take a step back to explore your response.

For more articles by Lizzy Miles, click here. For more articles about communication, click here. For more articles about social work, click here.

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. She is currently funding her fourth Kickstarter campaign Hora Fugit which seeks to send willing participants gentle postcard reminders of their mortality. You can find her on Twitter @LizzyMiles_MSW.

Photos via Unsplash- Ink by rawpixel; Dad's Keys by Hope House Press; Mugs by Worthy of Elegance

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by Kayla Sheehan (@kksheehan)

October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

Ask any patient what qualities they desire in a physician, and empathy will almost always make the list. A physician’s ability to demonstrate empathy has been shown to significantly impact patient outcomes¹, increase patient satisfaction², and raise physician “compassion satisfaction,” which may hinder burnout (3). Though much debate surrounds empathy’s teachability, learning how and when to make empathetic statements is a crucial aspect of physician training. Many of us struggle with finding the right thing to say, but a recent open access study published in JAMA Network Open shows there may be more power in pauses made after empathetic statements than in the words themselves.

The study recorded 68 pediatric intensive care unit conferences over four years. Transcripts of every meeting were made, and empathetic statements were noted using the infamous NURSE criteria (naming, understanding, respecting, supporting, exploring). “Missed opportunities” to express empathy were noted as well. Empathetic statements were placed into two categories, “buried” and “unburied.” A buried statement was one in which the physician expressed empathy, but did not allow time for the family to respond. This most commonly occurred with the physician immediately segueing into clinical jargon, but was also counted as buried if another member of the team interrupted, or if the physician finished the statement with a closed-ended question.



Transcript analysis showed that physicians are fairly good at identifying when to express empathy, taking advantage of 74% of the opportunities analyzers identified. However, almost 40% of these statements were buried, and “medical talk” accounted for the vast majority of buried statements (95%). Interestingly, non-physician team members (typically a social worker or nurse) spoke only 5% of the time, but when they offered empathy, they did so unburied 87% of the time, further demonstrating the importance of a multi-disciplinary team in fully supporting patients and their families.



Physicians have a wealth of medical knowledge to share, but timing is paramount, and tacking jargon onto the end of a well-intentioned empathetic statement may prevent patients and families from even recognizing the empathetic effort at all. In October’s study, when physicians made unburied empathetic statements, families were 18 times more likely to respond with additional information, to express their fears, and to discuss their goals. Clear communication is an obvious cornerstone of the physician-family relationship, and while buried empathetic statements may be better than no expressions of empathy at all, they may leave families with a feeling of being unheard and ignored.



Though a busy clinician may not feel they have the time to open the Pandora’s box of family concerns and fears, investing time in “a pause” may pay dividends for all parties involved. For physicians, better communication skills have been shown to decrease instances of burnout, lower rates malpractice suits, and raise patient satisfaction scores⁴. Meanwhile, the family leaves these conversations feeling heard and understood, and the patient receives care tailored to them, with every fear, concern, and hope kept in mind.

If, as cellist Yo-Yo Ma would assert, “music happens between the notes,” perhaps the heart of medicine lives in the pause.

More Pallimed posts from Kayla Sheehan can be found here. More journal article reviews can be found here. More posts on communication can be found here.


Kayla Sheehan is a third-year medical student at California Northstate University. She enjoys singing, sharp cheddar, and long walks with her Australian Shepherd, Posey.

References:

1) Kim SS, Kaplowitz S, Johnston MV. The effects of physician empathy on patient satisfaction and compliance. Eval Health Prof. 2004 Sep;27(3):237-51. PubMed PMID: 15312283.

2) Pollak KI, Alexander SC, Tulsky JA, Lyna P, Coffman CJ, Dolor RJ, Gulbrandsen P, Ostbye T. Physician empathy and listening: associations with patient satisfaction and autonomy. J Am Board Fam Med. 2011 Nov-Dec;24(6):665-72. doi:10.3122/jabfm.2011.06.110025. PubMed PMID: 22086809;

3) Gleichgerrcht E, Decety J (2013) Empathy in Clinical Practice: How Individual Dispositions, Gender, and Experience Moderate Empathic Concern, Burnout, and Emotional Distress in Physicians. PLoS ONE 8(4): e61526. https://doi.org/10.1371/journal.pone.0061526

4) Boissy, A., Windover, A.K., Bokar, D. et al. Communication Skills Training for Physicians Improves Patient Satisfaction. J Gen Intern Med (2016) 31: 755. https://doi.org/10.1007/s11606-016-3597-2

Altmetric for this study: October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

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by Christine Bridges

The hallways are full again after a short June reprieve. Starched white coats, cleaner than it ever seemed possible bustle through the hallways, making up in speed what they lack in direction. They fill each space with eager anticipation. It is almost palpable. It is the scent of July. Each furtive glance at the clipboard in the elevator fills me with longing to tell them the advice I wish had been passed out with my first pager.

The biggest challenge ahead of you will be communication. Over the next 3-7 years more often than relieving tension pneumothoraxes, performing thoracenteses, or placing art lines, you will be you will be having difficult conversations. You will have to address substance abuse when you find cocaine on a routine urine drug screen in one of your favorite patients, the one who always brings cookies to her appointments. You will find yourself in the ED at 3am listening to radiology explain that the CT scan shows a large lung mass, not a pneumonia. Room 345’s son from California will arrive to the hospital at 4pm on Friday and need to talk about Dad’s pancreatitis urgently. You will have to tell people they are dying. You will have to tell families that their loved one is dying, that their loved one died, that they did not get to say good-bye.

You will be part of sacred moments in the lives of near strangers. You will hear the confessions, the deepest secrets that their own families may never know. You may hold their infant daughter before they do and be the first to tell them her gender. You will give a diagnosis that changes a life, you will be able to say: the scan is clear, the chemo worked, the surgery was successful, he came through. You will hold hands, wipe tears, and you will live in family stories for years.

It will not go well sometimes. It won’t be the first difficult conversation you had that day, it will be the fifth. Maybe you didn’t sleep well, maybe you missed lunch. Perhaps the person with unkempt hair sitting across from you wearing pajamas to their 3pm appointment will question your medical credentials because you look ‘too young to be a doctor’. Maybe this patient has spent more time in the hospital as a patient than you have as a physician, they have more experience with difficult conversations than you do. Your feelings will get hurt. You may stand in a room tightly clenching a stethoscope like a lifeline as you discuss a discharge plan while a fragile patient cries and says you just don’t care about her. You may be sent by your attending to explain to an undocumented immigrant that there are no options for outpatient dialysis for her renal failure. You will be the recipient of gratitude you did not earn and anger that you cannot understand.

I remember the way my own stiff white coat chaffed at my neck, fitting too long in the sleeve as I rounded my first July as an intern. Long sweaty months running to the ER followed, life blurred, lessons became habits and I became a fellow. And now today I want to place one hand on each intern’s shoulder and tell them: It will all be OK. You are not alone. Neither is your patient. There are skills as real as sterile technique. Skills that will carry you through difficult moments. We are not born ‘good with patients’ or skilled with microscopes. The upper level who glides into the room, smiles gently, and leads a goals-of-care discussion acquired those skills because it matters to her patients. She fought for this capability with education and hard work, not with genius or luck.

You can learn the same skills now on your first days, you can practice them in every interaction from the clinic to the OR. You have palliative care professionals who want to join you in your work, to be your ally, to be your patient’s champion. If we can’t be in your hospital we want to be your educators at workshops and conferences. We’ll see you in the halls and elevators. We want to talk and listen.

Christine Bridges, MD is a hospice and palliative medicine fellow at the University of Louisville Health Science Center. She enjoys baking and watching zombie movies with her husband.

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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

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by Lizzy Miles (@LizzyMiles_MSW)

Sometimes when we encourage patients to complete a Health Care Power of Attorney (HCPOA), the patient declines the offer based on mistaken assumptions they have about the document. We never want to push a patient into doing something they don't want to do, however, sometimes their resistance is based on a misunderstanding. In an attempt to help address mistaken beliefs and/or concerns, I created a FAQ for our patients. This also can be used for staff as talking points for the discussion.

I don’t need one, I am my own decision-maker and I always plan to be.
As long as you are able to speak for yourself, you are your own decision-maker. However, as part of the disease process, many hospice patients get to a point where they are unable to express their own wishes. When you designate a HCPOA who understands your point of view, they can step in and tell us what you would want in a situation when you’re not able to tell us.

I want to maintain my independence. I don’t want to give up control.
A HCPOA only has authority to speak when you are no longer able to share your own preferences. As long as you are still able to indicate your wishes, will we ask YOU.

I don’t have anyone I trust to make my health care decisions.
If you don’t have a designated decision-maker, you could end up having someone you don’t want or don’t know making decisions for you if you can’t express your own wishes. If you don’t know of anyone in your friends/family circle that you can designate, you could contact a professional representative such as a lawyer.  Remember, as long as you are able to express your own wishes, we will ask you what you want.

My next of kin (next closest relative) would be my decision-maker. Why do I need a form too?
When you designate a HCPOA, you are creating a written document of whom you want to represent you when you are no longer able to speak for yourself. This extra step can be helpful for other family members to know that you’ve confirmed in writing who you trust to speak for you.

I have a big family. I don’t want to hurt anyone’s feelings.
We rarely see hurt feelings in families as a result of a patient completing this document. In fact, written documentation with this specification of who you choose to be your future decision maker makes decisions easier. Sometimes with big families there can be many different opinions expressed. A written document designates a point person of your choosing to make the final call. Each family is different. If you think it might be helpful, you could tell your family why you chose certain individuals. Ultimately, it is a bigger challenge to family dynamics to NOT have this paperwork.

I may change my mind.
If you are still able to make your own decisions, you can always change the paperwork.

I don’t want to think about this right now.
It’s understandable that the thought of having someone else making decisions on your behalf may be unpleasant. We encourage patients to complete the paperwork now rather than later because it can bring peace of mind. A completed Health Care Power of Attorney will assure you that if/when you are no longer able to speak for yourself that your representative is someone you chose.

I have a document from another state.  Isn’t that good here?
It could be. If you completed a valid legal document in another state to designate your Health Care Power of Attorney, our state's medical professionals might be able to honor it. We need to review it to be sure. We recommend that you share your document with hospice staff to ensure that we understand your choices for decision-makers.

I think I completed a Health Care Power of Attorney before but I don’t have a copy. 
If you don’t know where your document is, then we are unable to honor it. If/when you are not able to make your own decisions, we would need a copy of the written documentation of your chosen decision-maker. This is for your own protection to ensure we are checking in with the right person.

Can’t I just tell you who would be my decision-maker?
You could, but in the event that you have interaction with other medical professionals, they wouldn’t know what you told us. When you put your preferences in writing, it’s a physical document that you can share with whomever is providing care.

We hope you found this FAQ to be helpful. Let us know via Twitter, Facebook or email.
Feel free to use this article in your workplace with the attribution:

 Used with permission from @LizzyMiles_MSW and Pallimed.org

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By Paul Carr

Thank you to Dr. Naheed Dosani and the excellent team at William Osler Health Centre for inspiring this post.

What three words describe the essence of palliative care for you? When I asked my friends, family, and colleagues, the most common answers are: pain management, personal and spiritual support, and end of life planning. Those are all key components. But what quickly became apparent to me during my palliative care elective is that excellent palliative care providers embrace the role of enabling patients and families to make well-informed choices.

I have taken a long and untraditional route to arrive in the field of medicine. I’m over 40 and spent 16 years teaching elementary school before starting the MD program. As a teacher, I heard and read a great deal about the Hidden Curriculum: things that are not taught explicitly but are ingrained institutionally and learned through experience. Examples include behavioural protocols such as “Do not challenge your preceptors” even though you are told to question authority, and subtle reinforcement of gender roles in institutions that outwardly advocate for individuality. And I argue that patient choice is part of the Hidden Curriculum in palliative care.

Choice and Palliative Care

This is the World Health Organization’s (WHO) website's definition of palliative care:

It is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Following this definition is a series of bullet point items which explain what palliative care is or does, but without any reference to patient values, wishes, or choice. This is the essential mistake we all make in medicine. We guess at what will make our patients happiest, and then recommend the treatment most likely to attain that outcome. The danger is that if we don’t know what our patients want, we may end up providing them with longevity when they are seeking contentment and the company of family (or vice versa).

Patient Values and Choice In Medicine

An episode of the excellent Balado Critique podcast from Universitié de Sherbrooke reviewed the EXCEL and NOBLE trials, which compare bypass surgery to stents for treatment of heart disease. The experimental endpoints included all-cause mortality, repeat revascularization, stroke, and MI, which are all likely meaningful to some extent for a large majority of patients. But I was struck by the fact that these measurements may miss the point for many patients.They are inadequate for formulating a care plan, because they do not explore the goals, values, and wishes of each patient.

We love ‘hard numbers’. Government health agencies, private insurance companies and hospital executive boards love ‘em. They’re super for projecting on smart boards and backdrops during meetings and fundraisers. But what about the older patient who feels she has completed what she considers a good, satisfying life? What are meaningful primary outcomes for her? I searched the original text of the EXCEL trial for the words ‘pain,’ ‘satisfaction [with treatment or quality of life]’ and ‘happiness’ and I received a grand total of zero hits.

There have been attempts to quantify patient experience in research. As early as the late 1960’s, the concepts of Quality Adjusted Life Years (QALY) and Disability-Adjusted Life Years (DALY) experienced varying levels of acceptance (often by economists and accountants). More recently, research in dermatology has used specific scales such as Skindex and SCI which are based on experiential subjective self-reporting from patients.

The problem is that trying to quantify subjective experience is like trying to create a metric for favourite colour, or flavour of ice cream. The European Consortium in Healthcare Outcomes and Cost-Benefit Research performed an extensive study and concluded that “the hypotheses that found the QALY approach do not correspond to behaviour patterns observed in real populations.” This result was entirely foreseeable because we can no more predict what patients want than we can guess that their favorite colour is blue or their favorite ice cream flavor is rocky-road.

Enabling Patients To Choose

Consent law focuses on the ability to understand illness and treatment options, as well as the consequences of treatment selection or refusal. It sounds strange, but patients often are not aware of their own goals and values because they have not specifically paused to think about them or take inventory. I remember participating in a conversation with a gravely ill patient who asked initially for all available life prolonging options. My preceptor did not challenge the patient or recommend a course of treatment. She simply inquired, “Help me understand your choice. What is most important to you in your life right now, and what would your ideal end of life look like?” The patient talked about grandkids, spending time or even dying at home, and not wanting to be laid up in bed attached to machines. I don’t think my preceptor said more than 10 words in the whole conversation, but the patient had come up with some outstanding goals of care. Over the next couple days, the patient and the entire palliative team came up with a plan of care to meet those goals to the greatest extent possible.

Patient choice must emerge from the the Hidden Curriculum and take its rightful place as the basic starting point of all good medicine.

On the last day of my palliative medicine rotation, a young woman came in with a cake for the nursing staff on the inpatient ward. She explained that one year ago, her mother had died on the ward. At that time, the young woman was too sad but now she wanted to let the staff know they had provided her mother great care. She didn’t mention a single common research metric, but she smiled with gratitude and joy in remembering her mother.

References:

Balado Critique: Épisode 5 Études EXCEL et NOBLE. https://wwwusherbrooke.ca/baladocritique/archives/episode-5-etudes-excel-et-noble/
ECHOUTCOME Report Summary http://cordis.europa.eu/result/rcn/57938_en.html

Mäkikallio T, Holm NR, Lindsay M, Spence MS, Erglis A, Menown IB, et al. Percutaneous coronary angioplasty versus coronary artery bypass grafting in treatment of unprotected left main stenosis (NOBLE): a prospective, randomised, open-label, non-inferiority trial. Lancet 2016; Dec 3; 388 (10061):2743-2752. PubMed PMID : 27810312

Franco Sassi; Calculating QALYs, comparing QALY and DALY calculations. Health Policy Plan 2006; 21 (5): 402-408. doi: 10.1093/heapol/czl018

Stone GW, Sabik JF, Serruys PW, Simonton CA, Généreux P, Puskas J, et al. Everolimus-Eluting Stents or Bypass Surgery for Left Main Coronary Artery Disease. N Engl J Med. 2016 Dec 8; 375 (23):2223-2235. PubMed PMID : 27797291

WHO definition of palliative care:
http://www.who.int/cancer/palliative/definition/en/

Ice Cream Photo by Markus Spiske on Unsplash

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by Christian Sinclair

As a palliative care doctor who works in an outpatient cancer center, I have come to value the time I get to see the patient concurrently with the oncology team. I am able to learn much more about the particular individual case, so I can be more helpful to the patient. But in the long game, the added benefit is a more nuanced understanding of the oncologist-patient relationship. Hearing the language an oncologist speaks to a patient is much different than having an oncologist give me a 45-second summary of that same discussion and medical plan. Yet, I suspect my mere presence (even when non-participatory) changes the nature of these conversations, a la the Hawthorne effect.

Oh, to be a fly on the wall!
Dr. Sarguni Singh from the University of Colorado, Denver is the lead author (working with Dr. Toby Campbell's group out of the University of Wisconsin) performed a study, "Characterizing the Nature of Scan Results Discussions: Insights Into Why Patients Misunderstand Their Prognosis," which was published online early in the Journal of Oncology Practice. (OPEN ACCESS PDF!)

The researchers analyzed recordings of oncologists and patients with stage IIIA, IIIB, or IV non-small cell lung cancer in the outpatient setting. These recordings were from another large study and are over a decade old now. But as the authors pointed out, there is not strong evidence that outpatient communication strategies have changed wholesale in oncology, (although treatment options have changed drastically with the introduction of checkpoint inhibitors, but that's not relevant here.)

The basic info about the visits (time, structure and broad themes) I found the most interesting, and for most clinicians it leads to the strongest behavior changing items. More on that in a minute. The team spent much of the time doing Conversation Analysis (with capital letters), a very involved qualitative research method. A 10-minute conversation may take 10 hours to code as they listen for changes in pitch, volume, tone, pauses and prosody. Prosody, prosody...such a lovely word, you may be thinking, I should know what that means. Prosody, a term which here means pattern and tone to ascribe meaning to a spoken word or phrase.

For those many of you in palliative care who geek out on communication, make sure to read the Appendix, where they explain laudable event proposals, blocking, objectionable projections, appreciation sequences. I will be on the look out for these next week in clinic. Some even emerging from my own vocal cords, because these exist beyond the domain of oncologsts.

The Results
I knew instinctively my clinical conversations were structured, but I had not fully realized it until reading this paper. 77% of the conversations were structured in the following phases:

• symptom-talk (Any cough? How's your breathing?)
• scan-talk (So your labs and scans are back....things looks stable...)
• treatment-talk (I think that chemo has done all it can for you, let's look at something new)
• logistic-talk (You'll need to come in for labs before your first new chemo treatment...)